Day 0, Before
(Written Mar 28 from memory of the day)
It’s funny how life throws you a curve ball sometimes.
Wednesday, March 21st was like any other typical Wednesday except for the fact that there was a bit more anticipated excitement. Tomorrow, Matt and I would be picking the girls up at school for 12:30pm sharp, because FINALLY, our long awaited annual family reunion to Cape Cod would soon be here!
So we had our dinner of pancakes, at Amber’s request…played some video games, chores, showers and time for bed. After Matt read and said prayers with Ryan and Amber, and tucked them in, Amber complained to Matt about having a bit of a headache. We didn’t think much of it, dismissing it off to just a lot of craziness of the day.
And everyone went off to sleep …
Day 1, the beginning
(Written Mar 28 from memory of the day)
I awoke out of sleep about 2:30 AM Thursday morning to Ryan calling out in his monitor. “Amber!!!”. “Amber!!!”. (Now, for those that don’t know, Ryan’s room is right across from Amber and their rooms are on the other side of the house from our room.). So as Ryan yells out his final “Amber!!!”, I roll over, am about to grab his two-way monitor to tell him to go back to sleep, when I notice Amber’s monitor’s red lights were going haywire, but no volume (sometimes her monitor acts up). I go to her and see what’s wrong. She is calling out and crying a bit saying that she had a headache, grabbing the right side of her head. So I go and grab a cold face cloth and have her lay back down. I then go to grab the children’s Advil out of our overnight bag in my bathroom, go fix her monitor and tell Matt what’s going on.
We give her a dose of the medicine and a few minutes later, she throws it up. So now we’re thinking, oh boy…is it a virus, the flu maybe? I wanted to sleep with Amber in her bed which I’m glad I did because every hour on the hour she threw up. By 6:50 AM I got up to go get ready for the day and get the other kids ready. Around 7:20 AM, I went to go check on her, and she’s on the floor. My heart skips a beat…I go over and and try to get her up, she doesn’t. So I have to pick her up off the floor, like a sack of potatoes and put her back in her bed. She looks like she’s sleeping…like it’s been an exhausting night and just sound asleep. I go and get Matt. We don’t know what to do at this point because we don’t know if she’s just really tired or what. We try waking her, no real response. Matt tells me to go re-wet the face cloth. He puts it on her and she moves, slightly…and then goes back to “sleep”. We try this a few times but no real change. My heart skips another beat. I grab her water and go put some juice in it thinking maybe she’d be up for that, we hold her up and try to get her to drink… still nothing. Matt tries yelling loudly …nothing…
Matt looks at me, I look at him, and we know. My stomach drops. We know something is very wrong. We throw out scenarios like should we or shouldn’t we…but ultimately, we choose correct. We throw pants and a coat on her, grab the garbage can in case she throws up again. Matt picks her up and tries loudly saying to her “Amber, you gotta wake up… otherwise we have to bring you to the hospital…”. She doesn’t react.
Remember that 4th Nor’easter we were supposed to get with a predicted 10 inches…I can only Thank God that that did not happen because getting to Backus could of been treacherous… And later on, the Life Star Helicopter wasn’t available because of the weather, so trying getting to the CT Children’s Medical Center by ambulance, could of been life-threatening.
While Matt’s at Backus with Amber, they immediately take her in and begin tests. After seeing something unexpected with her eyes (different size pupils), they decide to run a CT Scan. During this, Matt calls me on my cell and tells me to come down. We already know this is not going to be something simple.
Dr. Adams tells us they see a mass on the brain, and that Amber needs to be taken immediately to the CT Children’s Hospital in Hartford. This is devastating news but we don’t have time to let it sink in as we have to move fast.
As I said earlier, the Life Star Helicopter was not flying because of the potential weather, so I jumped into the ambulance with the Life Star crew. They put the flashers and sirens on. Although we made it there in top speed, it was the longest ride ever.
We arrive at CCMC’s ER where Amber and I were immediatly whisked into one of the ER rooms. I was intoduced to Dr. Martin, Director of Neurology, he gave me the run down of the situation, had me sign papers and off they brought her for a CT Scan, and then to the OR around 10AM. I was brought upstairs to the 3rd floor waiting room. Matt was on his way.
Day 1, Following Surgery
(Email to family during surgery on Mar 22, recorded here on Mar 28)
I wanted to update you on Amber.
She is still in surgery and doing well. The doctor removed the clots and they sent those out to pathology.
They removed part of her skull and the doctors are making sure that there isn’t any more bleeding.
We will have to schedule another surgery for her skull.
Please wake me up from this nightmare.
Please continue with prayers…
Day 1, Evening
(Email to family evening Mar 22, recorded here on Mar 28)
It’s hard to stay strong, but we have to for Amber. This is so devastating….so unreal.
Amber is in the PICU (pediatric intensive care) and is stable. The doctor removed a tumor that had burst. They are leaving part of her brain exposed due to possible swelling/inflammation and possible other tests.
Next few days are crucial
Once pathology comes back he’ll have a better understanding of what the best method is for our next step.
Today’s plan is to get the bleeding out as well as swelling down.
Her vitals are good. They have her heavily sedated and paralyzed so that she doesn’t move…that way her body can heal.
Day 2, Morning
(Email to family expecting us in Cape Cod on Friday March 23, recorded here on Mar 28)
These past 30 hours have been hell.
Amber was admitted to Backus ER yesterday morning. The doctors determined there was a mass on the right side of her brain. They put a breathing tube in and immediately sent her to CT Children’s Hospital. Upon arrival Dr. Martin, Director of Neurology, and his team, brought Amber quickly up for an operation to remove part of her skull. Dr. Martin was able to determine that she has a tumor that burst. He was able to clean up all the blood and some of the tumor was sent out to pathology. After being in the OR Amber is to remain heavily sedated and paralyzed to help with the healing. Dr. Martin is leaving the bone flap off so that the pressure and swelling of her brain can go down.
Next step is just making sure all of her vitals stay strong so that hopefully she can receive an MRI in a few days. Until then she will be getting a CT Head scan.
Please keep praying for her.
I feel like I’m in a nightmare…this is so horribly surreal…
I love you all so much and appreciate the love and support.
Please don’t get offended if you don’t hear back from me right away. This is just really devastating…
Day 2, Morning
(Email update to family day after surgery, recorded here on Mar 28)
Amber did well through the night. The nurses and doctor have her still well sedated.
All vitals look good. Swelling on the right side of her face, which is expected due to all the trauma from her skull and brain.
She is going in for an MRI at 2pm.
When we see Dr. Martin we are going to have him clarify what he did/did not do in surgery yesterday…a bit conflicting but with everything going on I guess it’s expected.
Please please please continue with prayers and good positive thoughts for Amber.
Thank you for all of your support during this devastating time, it means a lot to Matt and I.
(Update sent to a few key coworkers and school parents by email on Mar 23, recorded to blog on Mar 28)
Yesterday morning, we brought Amber to the ER, where they discovered a tumor on her brain, which had just burst. She was immediately sent to the Children’s hospital in Hartford, where she went through several hours of surgery. She is in ICU now, where she will remain sleeping for at least the next few days as they monitor things and perform a few follow-up operations. Things are very touch and go right now, and we don’t have all the details. We won’t be very communicative during the next few days, but wanted to make sure you heard this directly from us. Our families know, but we haven’t put out any big broadcast messages (e.g., Facebook), and don’t plan to alert the wider world anytime soon, but please feel free let your families know verbally. And please keep her in your prayers.
Day 2, Evening
(Email update to family on Mar 23, recorded here on Mar 28)
Update on Amber. Today Amber had a big day. The nurses had to unplug and battery packs as well as manually ventilate her so that we could make the trek down for a CT Scan.
The scan came out good. No more bleeding.
Dr. Martin is pleased with her vitals but wants to hold off on the MRI. He is off this weekend but one of his colleagues, Dr. Paul (who is sweet and looks like Santa), will be monitoring Amber. If her vitals remain well, he may lower the sedation, which may have Amber doing some involuntary movements.
Extra prayers for Monday as that will be a really big day. Pathology reports will hopefully come back in the afternoon so Dr. Martin can determine what we’re dealing with as well as MRI is scheduled for 2:30pm.
Day 3, Evening
(Email update to family on Mar 24, recorded here on Mar 28)
Amber continues to stay stable, which was our goal. She also had a feeding tube put in.
We met with Doctor Paul today. He reminds of Santa by not just looks but in his gentle kind demeanor. He explained a bit further of Amber’s surgery. He said that the tumor was removed in the right Temporal lobe. He said that having this tumor on the right side is the “better” of the sides to have it on. The left side is where most of the functions happen where on the right side is for memory…and thankfully the bleeding did not seep into the memory area. When they went in to get the tumor and extract it, it left a golf ball sized pocket which after reviewing the CT scan, has shrunk back down to about the size of a fingernail.
I asked Dr. Paul’s opinion on why. He said it’s not what she ate, or where she lives or anything like that. It’s just one of those unfortunate situation where some of the cells get out of whack and have a mind of their own.
And tomorrow, if everything continues looking good, they will slowly begin reducing the sedation to see if Amber reacts to things. This is a big step, will begin telling us a bit about how her recovery will be, along with the MRI and biopsy results on Monday.
Also, big day because Amber got to have a visit from her siblings and grandparents! The kids did well with seeing her for the first time, each reacting in their own way. They did some art projects here too (we had Lauren from Child Services help us out), which are hanging on Amber’s walls now.
While reducing the sedation means we don’t want to overstimulate Amber, we will be open for Aunt/Uncle visits soon, and will open up to others later.
Ok, I think (hope) that’s everything for today.
Day 4, Evening
(Email update to family Mar 25, recorded here on Mar 28)
Amber continues to be stable, and still under heavy sedation. Her head pressures are still up and down…but should be going down more. So everyone is keeping a watchful eye on it. They introduced a sodium based medicine to help draw out the extra fluid, which seems to be helping.
Dr. Paul came in and removed the drain in her head. He decided to hold off on lowering her sedation.
Matt mentioned Mark’s meningioma and Aunt Phyllis’s grandson’s glioma. He said they are probably nothing syndromatic but that may be something to discuss in the future with our pediatrician — possibly getting the other kiddos scanned.
Uncle Mark & Auntie Meg stopped by to just drop off a very well thought out care package!!! Thank you again guys!!!
Father Tito stopped by to give Amber the Annointing of the sick as well as a blessed brown scapular.
Talked with Sister Patrick and gave her the run down. She plans to write a letter to the families of St. Joe’s regarding Amber. She is also going to personally speak with all the classes (as one of the hats she wears is music teacher). She told us that there had been 2 miracles in the convent…and she is hoping Amber recovering is the 3rd. She also mentioned all the nuns/Sisters are praying for Amber as well as all the different prayer groups and Church groups that have Amber on their lists.
The outpouring of love…the support, prayers, the positive vibes… I just don’t have words. Not only are our families praying but the parents and children from school… friends… co-workers…friends of friends and siblings of people we know… people that haven’t even met Amber — are offering up masses and novenas and prayers circles and lists at churches… Matt and I are just overwhelmed by all the love.
I feel so sad and helpless… but this outpouring of support for our little girl — THAT makes my heart feel such warmth and hopefulness.
So much love to you all.
Tomorrow is the big day. I wish I didn’t have to face it because I am so scared of the results…
Will touch base tomorrow.
Day 5 Morning Update
(Email update to family on Mar 26, recorded to blog on Mar 28)
Met with Dr. Martin this morning. He has postponed her MRI until tomorrow, as long as the pressures (ICP) stay in the teens. They have been frequently peaking in the twenties, higher than they would like which means he’s not ready for the monitor itself to come out. You can’t do an MRI with the monitor in. So, they are increasing the sodium solution to help the internal swelling come down, reducing the ICP.
We’ll meet later today with Dr Martin to discuss pathology report … so extremely nervous…
Day 6 Early Edition
(Message sent by email to family, close friends, and a few key individuals to communicate to school, work, etc on Mar 27, recorded to blog on Mar 28)
As we write this at 1:30 AM Tuesday (3/27) morning, the past 10 hours have been extra challenging for Amber. But she is again holding stable. Please, keep her in your thoughts and prayers, as we have a very difficult road ahead of us.
Monday (3/26) late afternoon, we received the results of the pathology report. The tumor was most likely an aggressive glioma (specifically, “glioblastoma”), which is not good. There is hope, but we have a long road ahead as we consider options for recovery.
Following this information, a CT scan was performed as a precaution and revealed that blood was not properly flowing to the right side of her brain, due to ongoing swelling of the brain from the tumor and it’s removal on Thursday (Mar 22). It was decided necessary to immediately go in for another surgery to reduce pressure by removing additional tissue from the brain.
This surgery started at 9:15 PM Monday night, and continued until a little after midnight. It was successful in reducing pressure and restoring blood flow. Her siblings were able to visit shortly after.
Now, we spend the next 3-4 days watching to make sure she remains stable, and meeting with different types of doctors to discuss possible next steps. If she does remain stable, we begin with an MRI to get a real detailed look at the state of things, and determine the appropriate path from there. We look forward to the point that she can begin waking from the sedation.
Please understand that this is pretty much all we know at the moment. We are sure you all have questions, and we probably have the same questions. But right now, we are very much focused on 24 hours at a time as that is about all we can fathom.
We truly appreciate all of the prayers and thoughts for Amber. Please keep them coming strong, as she will need all the help she can get for this journey.
We have great faith in the staff at the Connecticut Children’s Medical Center to do everything they can for Amber; and we have great Faith that God will do what is best for her.
Day 6, Evening Edition
(Email update to family Mar 27, recorded here Mar 28)
After the “excitement” of last night/early morning, today has been a very needed calming day, so to speak. Amber’s pressure numbers have been very very good (small but mighty wins) and her blood pressure has been a bit on the high side, however has been lower now for 1/2 the day (again, small but mighty wins).
Dr. Martin came in and liked the numbers he saw. Slow and steady wins the race.
We’re hopeful for a calm uneventful night.
Matt and I, as well as Amber can feel the flooding of prayers. Tomorrow night, at Saint Mary’s Church, some of the mothers at Saint Joseph’s school, along with Father Tito and Sister Patrick, coordinated a ceremony of healing for Amber!!! It is at 7:15pm.
Day 7, a blog
We are truly blessed with the support and love being shown during this very difficult time. We are starting this blog for Amber to capture the moments, the details, the experiences of this journey and share with everyone – instead of trying to communicate different stuff via different methods to different people. We will try to update this daily, but please do not be concerned if we miss a day.
We have titled this blog Amber’s Way. We (Caron and Matt, her parents) are going to do everything in our power to bring Amber through this. But, those that know our little girl understand that Amber will shape her own path for this Journey, in Amber’s Way – with some attitude, with some sass, with hope, with a smirk.
Today is Wednesday March 28 2018. Most of the posts before this one are just excerpts from messages we had sent before we decided to do this as a blog. But, since they are part of this story, we decided to include them here.
Day 7, Wed. March 28th
Amber did very well with her head pressure numbers. However, her blood pressure was on the high end throughout the day. They increased her sedation to help relax her more to try to bring it down. We are hoping she can get a restful night.
Tonight was the Saint Joseph healing prayer service for Amber. At 7:15PM, Matt and I said prayers with Amber. We also said a special prayer tonight, a prayer to Saint Peregrine, Patron Saint of persons suffering with cancer. This Saint was brought to my attention today by our very nice custodian, Maria.
Thank you all for taking the time and energy to go out to St. Mary’s to pray for our very sick little girl. That means the world…
In case you would like to say a prayer to Saint Peregrine:
O great St. Peregrine, you have been called “The Mighty,” “The Wonder-Worker,” because of the numerous miracles which you have obtained from God for those who have had recourse to you.
For so many years you bore in your own flesh this cancerous disease that destroys the very fibre of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favoured with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of the sick whom we entrust to you.
(Pause here and silently recall the names of the sick for whom you are praying)
Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy.
Day 8, Morning Edition
The night was pretty stable, some minor changes to her meds to manage the blood pressure. With that stability, this morning they removed the “bolt” (one of the monitors measuring her brain pressure [ICP]) and her drainage (hemovac), so she can go into the MRI this afternoon. She is comfortable. One step at a time, celebrate each small win. We are terrified of the potential results of the MRI, but we know it will only reveal the reality that has already existed, so this doesn’t change anything other than giving us a clearer view of what can be done to help her.
We continue to pray, asking God for this trial to pass quickly, to give us strength to carry Amber, and for Amber’s own strength to persevere through this.
Day 8, Late Edition
A little bit of good news tonight – preliminary results from the MRI show that we are in a relatively good spot (details further below).
Amber had about 7 nurses getting her ready for the big trip down for the MRI. This is a very complicated process where the nurses have to switch out all of the devices for portable MRI compatible devices. As the crew was prepping her, her numbers started elevating and her head pressure was getting a bit too high. There was a good chance the MRI wouldn’t be happening again. However, Dr. Martin came in, gave the okay, and off we went.
After signing some forms and removing all my earrings and security badge, I got to go in with her. I have never seen an MRI machine before and can tell you that it’s very intimidating. If Amber was awake I’m sure she’d be so scared (I was for her). Our fabulous nurse Alex, and 3 others finally assembled her on the machine, gave me some ear plugs and then it began.
The machine is huge and loud. While I was sitting there I was wearing Amber’s Magic Power Blanket and brown scapular around my neck, where I prayed until she was done, which was about an hour.
After she was done and Alex and crew got her assembled again, it was time to head back. On our way back to her room we ran into Dr. Martin…
He didn’t pull up a seat to sit and talk to us so we knew that maybe finally, we get some good news instead of devastating news.
The preliminary review of the MRI shows:
— no damage to the left hemisphere.
— no damage to the brain stem.
— no residual from the tumor
— some damage from where the stroke/tumor/bleeding was on the right side, but we already knew that there was some damage here.
Dr. Martin still needs to meet with the tumor review board to thoroughly go over the results, but this is a good start.
Matt and I are relieved but realistic. We celebrate this as a win, but we have a long road ahead. We’re just starting from a somewhat better spot than we could have been.
Our next step is to meet with Oncology, and start understanding what treatment may look like.
We continue to pray, for strength for Amber, and for the Doctors, Nurses, and other Medical Staff that are fighting this battle valiantly alongside us.
Day 9, Morning
It was a quiet night. Amber continues to sleep peacefully, though she does get agitated (blood pressure, heart rate, cranial pressure) whenever the nurses move her into a different position. Today, we look for continued stability, so that we can look to start reducing additional therapies (monitors, tubes, sedation, paralytic).
Today we reflect on Good Friday, on Amber’s trial here, and continue to pray that God bless her and provide her comfort, and that He bless the doctors, nurses, and all the staff here that are working so hard to restore her health.
And, I am reminded today, in light of all of this, of just how quickly life changes. It was just a short two weeks ago today that I was bringing all three of my daughters to the Daddy/Daughter Dance at their school …
Day 9, Evening Edition
Today was … emotionally turbulent. All of these days have been, of course, but different highs and lows.
We had a good (but difficult) conversation with the team of doctors today. Yes, seeing a healthy brainstem and left side of brain is very good. But, the damage to the right side from the stroke will require much work. Amber will need to relearn how to do many things, and it will take much time. But fortunately, young brains have “plasticity”, and the rest of the brain looks good, so we have a chance, hope, that she will be able to relearn.
We also began the process of waking her. Today, we have stopped the paralytic medication, and watch how she responds. We are watching to see if she breathes on her own, coughs to clear her throat, performs involuntary motions (especially on the left side of her body, which is at risk due to the damage in the right brain ). It will be many days, though, before the other medications are lifted and we see her start to actually wake up.
So, again, there is hope. It will be a long, difficult road, but Caron and I will do whatever it takes to bring her through it. And we know that the medical team here are in this with us too.
We go into this Easter weekend praying. We pray for strength for Amber. We pray for the medical professionals providing her care. We pray for our own strength to carry as much of this for her as we can.
We truly appreciate the amazing support from our friends and family, across our work, church, school communities, who again today continue to show us such kindness. Thank you.
So Much Love & Support
Amber’s room is feeling the LOVE!
💜 Thank you 💜
Father Charlie & A Blessed
Last Monday (3-26) I was introduced to Father Charlie. I was especially looking forward to this visit because Chrissy, our Family Support Clinician, had gone on and on about how much of a special guy he is and how we have to meet him. Matt had the opportunity to meet him prior, loved him and couldn’t wait until I got to meet him.
So in walks Father Charlie with a “Hi, you must be Caron” while embracing me in a big bear hug…”You know, I was told a lot about you but then I didn’t believe any of it because there’s no one that perfect! But I can see I was wrong!”. I loved this man already!!!
Chrissy was not kidding when she said Father Charlie is a character. Quite a character indeed; funny, loving, empathetic, and best of all, comforting. After chatting about various things, one including his pet-friendly Masses, he asked if he could say a special prayer over Amber.
He took out a small round red object. “This is a relic of the Blessed Stanley Rother” he said, “Blessed Stanley Rother was an Oklahoma priest martyred in Guatemala. In order for him to become a Saint, he needs one miracle… Maybe Amber, could be his”. Father Charlie places the relic on Amber’s head and he says the special prayer…
When we think miracles, we often think BIG, like cures. Matt and I, at this point, will take even a smaller miracle — like being able to remove Amber’s breathing tube, or seeing Amber flex the muscles in her left side, or having Amber open her eyes and recognize us. Anything positive that God gives us we will take in a heartbeat.
A couple more steps in the right direction.
We started the day with me (Matt) bringing Amber’s siblings to the St. Joseph road race in Baltic, CT. I’m very proud of Marie and Brianna for running so well. I’m also very thankful for all of our friends that asked about Amber and have been offering prayers for her, and pleased to hear from them today that this blog is helping everyone feel connected to Amber.
Caron stayed with Amber, and let me know that she (very briefly) opened her eyes several times, including once when the doctor stimulated her left leg (important because we know we will have challenges with her left side, due to her stroke). She also coughed several times today, an indication that she will be able to control her own breathing at some point. It’s still a very long road ahead of us, but we will celebrate each step in the right direction.
While there continue to be some minor hiccups in various numbers (ICP, Heart Rate, Blood Pressure, CO2, etc), things are overall trending positive there too. Generally, it’s just that Amber, in typical Amber fashion, doesn’t like being made to roll on her side a bit, or have her eyes checked, or have her nose suctioned – so she is giving us some sass by throwing off her numbers for a few minutes.
And we continue to be overwhelmed by the generosity of you all. The prayers, the kind messages, the cards, the gifts, the meals, the offers of help. We are blessed to have such good friends and family.
Tonight, Caron is taking the kids to the Easter Vigil Mass, and I hold my own vigil at Amber’s bedside as we have since we arrived. We reflect on the trial, sacrifice, and joy of Easter. And, we continue to pray that God grant Amber the strength to continue her forward progress, that He grant us the strength to carry as much of her burden as He will allow, and that He grant her caregivers here at the Medical Center the strength and clarity to continue advancing her in the right direction. And we pray in gratitude for all of you, for your families and friends, that you all enjoy a peaceful Easter.
Day 11, Easter
Today was a good day. Amber’s sisters and brother came to celebrate Easter with her, and her four grandparents came to join a bit later. Continued positive progress on her numbers, and so we continue to reduce various meds and therapies to see if she can self-regulate. Amber looked like a little angel today, “wearing” her beautiful Easter dress (draped over her in the bed). Her brother and sisters talked with her quite a bit, and got to see her open her eyes several times – for a couple minutes each time! She continues to move her right arm and leg, and a bit of her left leg, and a tiny bit of her left arm, including stretching out the right arm and grasping whatever is in her hand. She is still very heavily sedated, so we know she can’t exactly see and hear us, but it feels like she knows we are here. Small victories…
They say a picture is worth a thousand words – this is a tissue paper “stained glass” project Amber did at school last year, hanging in our window, reminding us of two things – what Easter is really all about, and what Amber is capable of.
Happy Easter, God bless.
Day 12, A Thumbs Up
Today was a Thumbs Up kind of day. Literally.
An uneventful morning with watching her numbers and making sure she was comfortable. With the lowered sodium intake her head pressure number has been staying in range. The doctors gave our nurse Alex the okay to lower her sedative even more. Her blood pressure has finally lowered a bit but her her heart rate has been sporadic most of the time and elevated when she is stressed out. When she is stressed out she shakes with muscle tremors and clearly looks scared, which breaks our heart. With a firm holding of her hand and whispers of comfort, she finally settles down.
She had her first visit from her Physical Therapist Lauren. One thing that Lauren did, was ask Amber to move her ankle…and Amber moved her right ankle!
Later in the day, Amber had her eyes open and Alex was checking her over. Alex held her hand and asked Amber to squeeze it… and she did! Alex went one step further with it, “Amber, can you wiggle your toes?”… Amber wiggled her right toes! Amazing. So then Matt asked, “Amber, would you like us to put the TV on? Squeeze Mama’s hand if you would like us to put it on”. Nothing. So Matt asks a different question. “Okay, how about some music, would you like us to play some music? Squeeze Mama’s hand if you want us to put some music on”… Big squeeze! Yes! So then I ask Amber “Oh Amber, how about some Minecraft with Pat and Jen (her favorite set of YouTube videos)? Would you like that?”…she nods her head, ever so slightly! Matt says “Amber, squeeze Mama’s hand if you want some Minecraft.”…she squeezes my hand! So, Matt takes it a step further — “Amber, if you can hear it, put one finger up”…Amber slowly puts one finger out! Wow — okay — so at this point I’m trying not to freak out. Matt takes it up a notch — “Okay Amber, good job with putting your finger up. If you can see the Minecraft video, put 3 fingers up.”…Amber uncurled 3 little fingers!!! I’m floored — I’m trying every ounce of to contain myself, I cannot believe she is communicating with us — WOW!!! So then Matt pushes it even further (yes, Matt is definitely persistent) — “Okay Amber, you are doing such a GREAT job, but one more thing, can you give us a thumbs up?”…and there goes the thumb. Slowly, weakly, but it was definite. Our baby girl, after 12 days of not communicating, has given us a Thumbs Up!
A Thumbs Up day for sure. A celebration. But making sure to keep everything in perspective. There will be ups and there will be downs, today was an up, but we don’t know yet what tomorrow may hold. I am simply hopeful for more ups than downs. To bring it back to Dr. Martin for a moment…he made a reference to Amber’s situation the day she came here by comparing it to eating an elephant. You can’t eat a whole elephant in one bite. The way you eat an elephant is to take small bites…lots and lots of bites, and eventually, that elephant will be almost all gone, but remember, it’s a BIG elephant. We have a massive amount of elephant yet to eat.
Patience, hope, and lots and lots of prayers…
And so, Amber continues on her way.
Day 13, the Elephant and the Whale
How do you eat an elephant? One bite at a time. Another good day today, but also reminders of what is still ahead of us.
Right from day #1, Dr. Martin cautioned us that we were going to be eating an elephant. Thinking about this process as a singular whole is terrifying, so we’ve been forcing ourselves to tackle this one day at a time, one bite at a time, one milestone at a time.
Today, Amber continued to improve her communication with us. She will wave when she wants us, will squeeze our hand or give us thumbs-up to yes and no questions, and can show us however many fingers (on her right hand) as we ask. But, as Caron noted yesterday, I can be a bit “persistent”. I know there is a risk to her memory from the original stroke and second surgery, so today I decided to see if we could test that. I asked her if she remembered the Daddy/Daughter dance from a few weeks back, and she squeezed my hand “yes”. Then I asked if she remembered the dress she wore, and again, she squeezed “yes”. Then I told her I was going to ask her about the color of her dress. Did you wear a red dress? No squeeze. Did you wear a yellow dress? No squeeze. Did you wear a green dress? Definitely got a good (correct!) squeeze from her! So let’s try this again — I ask if she remembers that we were going to go on vacation, and used the same process to ask if we were going to California, Texas, or Cape Cod. And again, she correctly answers “Cape Cod”. All definitely good steps. And so throughout the day, we’ve built up a small collection of hand movements — waving her hand means she wants us; a thumbs up or snap of the fingers (yep, she can do that too!) means “yes” or “I want that”; two fingers means she needs to make a “number two”; one finger means she wants me to go away and give her privacy while she tries to make a “number two”. She is, of course, frustrated that she can’t express everything she wants, but at least we have a start.
And I received lots of one-fingers and finger-snaps today; so while she can’t talk yet, her sass is definitely still there.
And some more good news – the sedative has been further reduced, and the final cranial line (an “EVD”) was removed. The next bite in eating this elephant is to reduce and eliminate the breathing machine and the breathing tube from her throat, and seeing how she does verbally. This should begin over the next several days. In parallel, we’ve also started working with PT and OT on some basics to work on muscle strength and dexterity.
We also discussed a bit more about the remaining elephant. Based on the impact to the brain up to this point, we expect that Amber’s left arm and left leg will suffer some long-term (possibly permanent) impairment – both weakness and poor fine motor skills. We also expect her to have poor, and possibly zero, left side vision (note – not left eye damage, but rather the left peripheral vision of each eye). Of course, we will work hard with PT, OT, and whatever else we can to continue to improve over time.
And then, there is still a whale to be eaten too. Once we stabilize her physical state (the elephant), we can begin treating the glioblastoma (the whale). We got the report from Dr. Martin today that he met with the Tumor Review Board here at CCMC, and they have begun putting together the plan. In a few weeks (three-ish), she will receive another MRI to confirm there has been no tumor regrowth. Then, the “skull flap” (the piece removed during the original surgery) will be replaced. After this, we can begin the first phase of cancer treatment – radiation therapy.
So, how do you eat an elephant and a whale? Still, just one bite at a time.
A closing thought – my dad said something profound to me yesterday. He has been praying for Amber, for her strength, for her recovery. But yesterday morning he mentioned that he paused to add a “thank you” — Thank You God for the time we spent with Amber on Sunday, and more generally for her being a blessing in our life. And so I would like to do the same here. God, Thank You for blessing us with Amber, for giving us the time with this beautiful little girl, no matter how long or short it may be. Thank You for the family you’ve given us, all of our beautiful children, and the time you’ve given us with them. Thank You for the incredible family and friends that are supporting us through this process, and Thank You for the people at the Connecticut Children’s Medical Center who have been working so hard and been so kind to Amber and to us. And Thank You for giving us hope that we can indeed eat this elephant, and this whale, one bite at a time. And maybe still have room for an ice cream sundae at the end.
Day 14, My Super Hero
Super Heroes have super powers right?
We have been watching (and blogging about) how Amber is doing as she travels this road to recovery, and taking special note of those things we find most interesting. Her communicating with us through our “own” sign language, things like: right hand squeezes, number of fingers up (#2 means well, #2 and #1 means privacy please), thumbs up, finger snapping, nodding and maybe, even a smirk. As well as trying to breathe on her own and moving her legs and right arm wonderfully. Having no experience with this ourselves, we figure that these are just the normal steps down this road. But to have multiple doctors come to her room today to see her because of this “profound recovery” (their words) and learning that this progress is well beyond their expectations, two even leaving with happy tears in their eyes — that is flooring. Yes, still a long long way to go, but definitely heartening to understand that Amber is off to a super start.
In that same vein:
I never thought in a million years that my daughter would be celebrating her 1/2 birthday not only in the hospital recovering from 2 brain surgeries, but also battling a terminal illness.
6 months ago, when she turned 6 years old, she received a D.C. Super Hero Girl doll — a Super Girl. A doll that hauntingly looks just like Amber; blonde hair, blue eyes. Not just any blue eyes mind you, but blue eyes with a twinkle of spunk in them…just like Amber. This doll is a special doll. Special yes, because it’s one of her favorite characters on the show but more like, it’s a doll that imitates her life currently. Amber is Super Girl. She is my true life super hero. For what she’s endured over these past 14 days…no one, (let alone a 6.5 year old girl) should ever have to go through something devastating like this. But reality is, she is. And reality is, she’s fighting this Amber’s Way. A Super Girl fighting her own form of kryptonite, and fighting it hard. For that, Amber is not only just Amber Grace, she’s Super Amber Grace…and she’s my hero.
Day 15, Elephant Steaks
Early update, as I didn’t want to wait until tonight.
Already today we have taken another big step – the breathing tube and food tube were both just removed! She is resting peacefully, much mouth and throat discomfort, but her breathing is strong. Speech therapy will be checking in a bit later to see how she is swallowing and if she is ready for talking!
Also had a CT Scan this morning, which looks good.
Not just another bite off the elephant – I think we ate a whole elephant steak today. And it’s not even noon yet!
Day 15, Evening Edition
The rest of the day was fairly quiet. Still coming down on the sedations; so she stays more awake and alert. We met with speech therapy in the afternoon. Amber was able to drink a little bit of water, and tasted just a little bit of applesauce – enough to show that she can swallow just fine. Tomorrow we will try some more, hopefully her throat is a bit less sore so she is more willing. No talking yet, but Mom caught a few vocal sounds coming out when she yawned.
But, the highlight for me today – Amber smiled! With all the tubes removed, Amber gave me that “oh Daddy, knock it off” trademark smirk. While physically it may still be a weak smile, it was the strongest smile I’ve ever seen.
Tonight, I came home to spend the night with the rest of our family. Marie, Brianna, and Ryan have been so brave, so incredibly strong through this all. Sometimes I wonder if they understand the magnitude of all this; then out of the blue they’ll say or ask something that proves that they do understand completely ( Ryan at a 3-year old level, of course ). Truly, we are blessed to have such a strong, tight family, and to be supported by our larger family and friends through this all.
So again, today we pray for strength for Amber to continue taking these great steps in the right direction, and for the medical staff who are providing such great care and support to Amber and to us. And we thank God for our children, our family, our friends; the time we have already had, and the time still ahead of us.
Day 16, Evening Edition
Amber received her first sponge bath today along with a very much needed shampooing.
After the bustle of her bath the “T” team came in in a swarm: Physical Therapy, Occupational Therapy, and Speech Therapy. They decided it was time for her to sit in a chair. So they lifted her gently making sure all of her tubing was out of the way yet still connected and put her in it. She looked like such a big girl and she looked a little relieved maybe to be out of that bed . . . who wouldn’t be after 16 days of being laid up? She ended up staying like that for 2 hours! She was definitely tired by the end of the session. While she was in her chair, the Speech Therapist tried giving her some sips of water. She did swallow a little bit but did end up coughing which the therapists think scared her because she made sure to keep her lips tight when the therapist tried apple sauce. Right now she is getting an IV with nutrients but Dr. Martin has warned us that she may require a feed tube through her belly to get the feeding that she really needs.
She has not done much communication today with us I think she is exhausted and frustrated from the past couple of days . . . that or maybe as she’s coming down from the sedation and reality is starting to sink in?
So, still moving forward, one step at a time, and many many steps still to go . . .
Day 17, a Note of Thanks
Just a short note this morning. I want to thank everyone for all the comments on this blog, the Facebook messages, the emails, the text messages, the phone calls, the cards, the packages, everything. I assure you that Caron and I do read, listen to, and use everything that you send, even though we may not have a chance to respond to most. Thank you all for the support, it truly helps us keep moving forward through this emotional rollercoaster.
Day 17, Evening Edition
After a sponge bath in the morning, the doctors felt that she needed to have the feeding tube put back in. As I’m standing there watching our nurses, Rose and Angie, struggle to get it placed correctly, Amber is clearly in discomfort, even with medication. I felt so bad and had to stop myself from crying several times. After what felt like an eternity, they were done.
We got to celebrate Matt’s father’s 70th Birthday with Amber today. After hanging out with her, Uncle Mark and Auntie Meg came up to look after her for a few hours so we could go out for lunch to celebrate than go to Mass at Father Charlie’s Church. After Mass, Father Charlie gave Matt and I big hugs and asked about Amber. He also let the kids pick out Koosh balls.
Back at the hospital, we find that the doctors have removed her a-line and one of her IV’s. Marie gives Amber a pink Koosh ball that she picked out for her as well as Ryan giving her the purple one he picked out. Amber loved it! Marie secured it to her finger and she was moving her arm and hand all around with it, touching it, squishing it, pincer grasping it…what a great toy (and therapy) For her!
~A Mother’s Self Doubt~
For almost three weeks now, we have been posting updates on Amber’s progress to this blog. It’s been a bumpy road for Amber, but the progress has been positive. But it’s also been a bumpy road for us, her parents. Emotional highs and lows, and deep tests of our Faith. I wrote something privately a few days ago describing (in raw emotional detail) one of those low moments, and decided to share to help others understand a little bit better.
Yesterday (Thursday April 5th) was a rough day for me emotionally. I was not at the hospital when her breathing and feed tubes were extubated, and I felt guilty about that. I had slept home the night before with the rest of the family and had some appointments during the day. I know Matt was there and he was good about keeping me well updated and even sent me a picture of her sans facial tubes, which helped but wasn’t the same.
Once everything was set at home, it was time to hit the road. As I’m driving through Hartford, I can’t help but feel anxious about seeing Amber.
Walking from the parking garage, my arms are full of gifts, a bag of food, a second bag of food, a big bag of clean laundry, and my purse. As I smoosh to the back of a cramped elevator, we arrive at Level 3, Amber’s floor. After practically knocking people down trying to get out, I can’t get to our sleep room fast enough to drop off all this stuff so I can get to my girl.
As I’m walking down the hall, and just as I’m about to enter her room, a man with a white plastic helmet excuses himself as he comes out of her room. “I was just in there fitting her with this helmet and we should have one for her soon”. I politely nod and say okay. Then walk into Amber’s room.
She looks good with no tubes on her face . . . but that’s not entirely what my mind and tightness of my belly was focusing on. As I look at her, lying straight in bed, I see the left side of her head kind of awkwardly in the pillow, and the right side shaved with several lines of staples. She’s awake but with her eyes mainly to the right, bubbles pooled in her mouth, and raspy breathing. When she yawns, it’s only the right side . . . and on further inspection, I see that the left side of her face and mouth clearly has a droop. It saddens me. Because even though I “knew” it was going to be a long road, seeing her like this validates just how really long the road will be.
Not knowing if Amber can get back to what Amber was, hurts my heart so much. It is so scary and I hate that there is doubt in my heart. I’m supposed to be strong for her but I was standing there with all these thoughts and emotions coursing through me, and in my mind’s eye, I saw myself high-tailing it out of this room, out of this hospital, and out of CT. What hurt my heart the most? Is the fact that I am a coward.
Self doubt. Doubt in everything. Just feeling low..
But then, when she saw me in her view, and gave me a little right sided smile with an ever so slight dimple showing…all of those feelings that were so strong just seconds ago, fizzled out just a tiny bit. Even though I know there is a good chance Amber will never be as she once was, I’m glad that God is giving me a little bit more extra time with her today.
Day 18, a Day of Rest
Sunday is a day of rest; and so today we kept things pretty quiet and rested.
We started with a pretty solid 7 hours of sleep (for her, not for me)! It’s pretty tough having been asleep for two weeks, and then waking up in a place where there is lights and noise at all times. But Amber finally fell off to sleep about midnight, and slept through till 7 AM with only one interruption about 4 AM to reposition her.
After a morning visitor and sponge bath, Amber took a short nap. Then early this afternoon, we turned off the last of her primary sedative (Fentanyl), reducing her to a much lower dose of an alternative, which is delivered as part of her feeding. This means that all IV medications are done, and they removed her “central line”. No more IV, everything just delivered via feeding tube! It is beautiful to see all that hardware removed – all that’s left is the feeding tube and a spare IV line in the ankle “just in case”.
Then Amber got to sit upright in her chair for about an hour and a half. We looked out the window for a bit, watched some Minecraft videos on the tablet, and read a Princess Jasmine (Disney’s Aladdin) story. And after all this activity, she is taking another short nap.
I had a good conversation with Dr. Paul, one of the neurosurgeons. From that first day she woke where she was giving us thumbs-up and finger snaps, we’ve noticed her slow down significantly, so I asked about that. He assures me that this is not unexpected – her head pressures are good (evidenced by the positive visible depression in her head where the skull flap is removed, which would be swollen and puffy otherwise) so there is no indication of problem. So he believes the lack of activity recently is just a result of her dealing with the exhaustion of breathing on her own and moving around more.
Of course, I trust Dr. Paul, he knows better than I do, and he has been straight with us throughout. I trust God too, that He will continue to do what is best for Amber, and that He will enable the medical staff here to provide the best possible care for her. But as Amber’s Dad … it’s incredibly difficult to watch my little girl go through this, unable to really communicate, unable to fully comprehend, unable to move much of her body or even swallow properly, unable to focus her vision.
And so I pray that God gives us the strength to do whatever we need to do for Amber, and to accept His will, whatever that may be.
Day 19, a Moving Day
I’d like to start with a thank you (again). We’ve shared some deep, truthful, raw feelings we’ve had through this process. While we have had other significant trials in our lives, this is by far the most difficult for us. But the comments, emails, texts, phone calls … all of this support for us as we support Amber … has been incredible. Today has been truly moving for us.
Several have commented on the strength of our Faith reflected in our posts here, which made us pause for a moment – we’ve never considered our Faith particularly strong. Sure, we were both raised Roman Catholic, bring our family to Church weekly, and do Believe. But, we’ve never been tested like this before, to understand ourselves how strong our Faith really is. This too has been a moving realization for us.
This morning, PT/OT came together and got Amber out of bed and into her chair. They did a whole bunch of exercises with her, which seemed to wake her up and energize her a bit. Still difficult watching her go through these basic muscle exercises, but was quite reassuring to take her down the hall in her chair, and see her enjoy the change in scenery and activity. She even got to pet a dog in the hospital for a bit. And then, Valentine the clown came to visit, and shortly behind was Father Charlie! Amber had a good time with her visitors, lots of smiles. Was very good to get her moving today.
But the biggest news – today, Amber was moved out of the ICU! With all the tubes out (except the feeding tube) and being stable, it was time to “graduate” to Recovery on the eighth floor. So we moved all of the cards, flowers, toys, clothes, and food up to the new room. Again, CCMC is a fantastic place – her new room is bright and cheery, private with a nice couch/bed for us to sleep on, and a private bathroom. It reminded me a little of Moving Day on the first and last days of college.
And lastly, we have a target we are moving towards. April 30 is the tentative date for Amber’s next MRI and surgery, to remove any tumor regrowth and replace the skull flap, and May 15 is tentatively when we begin the first round of cancer treatments, as radiation therapy.
So lots of moving today; and a prayer that we just keep moving forward.
Day 20, Cool Blue
Amber has been doing really well on the Recovery floor.
Amber is definitely being more active. Lots of smiles, even a few eye-rolls for Daddy.
We had a great session with physical therapy, occupational therapy, and speech therapy all together. They helped her sit up, and she started supporting her head herself. Then, they offered her a blue popsicle – and she opened her mouth WIDE and stuck out her tongue! A few licks later, she took a bite and swallowed! We even got her to stick out her tongue to show off how blue it was. That is the first food Amber has had in three weeks, and she clearly enjoyed it – so much, that shortly after we heard her trying to make sounds! PT/OT/ST were very happy with this (as were Mommy and Daddy), so tomorrow PT/OT are going to try giving her a shower and having her support herself (with assistance) on her arms.
Caron went home tonight to spend time with the rest of the family (we’ve been alternating nights at home), so we did a little video chat to say good night – and at the end, when I said “ok Amber, can you say good night to Mommy?”, I definitely heard some (weak) sounds from her mouth!
We continue to make good progress. Next week we’ll be looking to add a g-tube to make sure she is getting sufficient nutrition, and we’ve got 3 weeks to build her back up to be ready for the next major steps: MRI, surgery (replacing the skull flap) and then to begin the cancer treatments shortly after.
And so, we pray for strength and healing for Amber over these next few weeks, and the mental and emotional fortitude for all of us to start preparing for that next phase.
Day 21, Ice Cream For Breakfast?
Yes, Amber had ice cream for breakfast . . . Vanilla, to be exact! After a couple of bites she was done, and that’s okay — we’ll take it!
Later on for PT, Lauren had Amber standing in this very interesting contraption. Amber did well but her helmet was bothering her and soon, she was clearly done. I bet it felt so good to be out of bed and standing, as it has been 21 days since the last time she did.
A few hours later, Caitlin with OT came in with a nifty chair so that we could finally give Amber a proper shower. (We had to switch rooms again yesterday, to a room that has an accessible shower, not a tub).
After all this hard work she earned a well deserved nap!
Although it seems like small steps for us, it is huge steps for Amber. God is good by helping Amber to remain brave and strong-willed — but then again, we wouldn’t expect anything less from Super Amber Grace!
Day, 22, Snuggle Time
It is currently 2:35 PM. I am in a position (litterally) that I thought would never happen again, or best case scenario, wouldn’t happen until far out in the future.
I am sitting on the floor of Amber’s hospital room, on a gym mat covered in a bedsheet. My back is up against a pillow, up against her hospital bed. Amber is nestled on my belly and chest. My arm securely wrapped around her right shoulder and neck with my hand resting on her belly. She is fast asleep. . . in my arm, against me, snuggling. The feeling of her against me, warm and comfy, breathing peacefully — that is something I will never take for granted again.
Day 22, Evening Edition
It’s been quite a busy day. Amber continues to do well. PT with Lauren consisted of gym mat on the floor doing exercises. During Amber’s “rest time”, Lauren let me do snuggle time with Amber. Let me tell you, that meant THE world to me. The last time I got to “snuggle” Amber was in between her throwing up every hour 3 weeks ago. So snuggle time today meant more than you know. After exercises on the mat, Lauren was able to get Amber to do a tall kneeling (like when we pray) against the hospital bed. Amber was supported by Lauren but held herself up by herself too, Lauren seemed pretty amazed, as did I! After that was wheelchair time, where we took Amber for a tour of Floor 8.
Speech Therapy was next. While Amber was still in her chair, resting, Sara came in with a cup of chocolate ice cream. It did not seem promising at first as Amber was tightly pursing her lips together. After a bit of persuading, Amber took a small bite! After another small bite, and a few sips of water, Amber graduated to two big bites!
And lastly, OT time. Caitlin made good use of the floor mat as well. She had Amber sitting up against her and had me hold a stack of Legos. Amber took a block off the top! She did it again! Next I loosened a top Lego and Amber pushed it down twice. After that, Caitlin got Amber down on her side for a bit where it looked like she was about to conk off! Then, tummy time where Caitlin was helping Amber with her neck. Amber was starting to get uncomfortable, so it was back to her side and then back to sitting against Caitlin. Then Caitlin asked if we’d like to do snuggle time — Um, you don’t have to ask me twice!!
With Amber in my arms against me, Caitlin sets me up with my back against a pillow, and pillow against Amber’s hospital bed, so I could be more comfortable. With my baby girl laying against me again, I can’t help but feel like it’s been an eternity since she’s been in my arms like this. But we’re here in the now and I will cherish this day forever.
Day 23, She Blew Me A Kiss
Amber thoroughly made my day today . . .
I’m home with the kiddos today. This afternoon Ryan suggested a video chat with Amber and Daddy. I give them a call and Matt informs me that Amber had just fallen asleep (whoops!). As we’re talking, Amber wakes up, so Matt brings the phone over to her. As usual, I’m kissing into the phone and blowing her kisses. Matt says “Amber, can you blow Mama some kisses back?”. As I watch what happens next, I’m stunned. Amber is not only making the kiss noise (more movement than actual noise) but her beautiful little right hand comes up towards her mouth at the same time! Not quite all the way because her hand is restrained (she wants to scratch her healing head all the time). So, Matt frees her hand and asks her to do it again — AND SHE DOES — she brings that little hand all the way up to her mouth and blows me kisses!!! WHAT?? I am still shocked so I ask “Has she been doing this all day with you?” and he says “This is completely new, right now, what she’s doing with you!!”
I am STILL in disbelief right now even as I write this. Thank you Ryan for suggesting the video call. Thank you Amber for doing something new and amazing today. And Thank you God, for making this little miracle happen.
Day 23, Late Edition
Another busy, exhausting day for Amber – but again, forward progress.
Physical Therapy had her on the floor with me today, and tried a few positions. She did well propping herself up on her elbows (yes, both of them!), but was pretty worn out from yesterday’s PT so she didn’t last very long. She woke up a bit, though, with Speech Therapy. While she didn’t want the chocolate ice cream they tried first, she definitely liked the orange popsicle. After a bit of a nap, we got back on the floor with Occupational Therapy, and I got to snuggle with her a bit. Then it was nap time again.
A quiet evening, but then it was decided that Amber should have GI scan tomorrow morning to prep for the g-tube surgery on Monday. So, we are switching off her food at midnight tonight, and supplying only liquids, by IV – but of course, her one remaining IV decided it’s been in too long (3 weeks) and needed to be replaced. Amber’s veins decided not to cooperate too well (they’ve been through a lot lately), so it took 3 tries with lots of tears – but it’s done, and I sit here now watching her sleep peacefully.
I prayed the Rosary earlier tonight, reflecting on the Sorrowful Mysteries. I may not be able to understand exactly what Amber is going through herself, the fear, the pain, her trial. But as a parent, as Amber’s Dad, I find my own pain, my agony, in not being able to take this for her, in not being able to just fix this for her, in not being able understand why this must happen.
And so I have spent much time praying to Mary, asking for her intercession as a sympathetic parent. At this point, we know what Amber must go through (there is no looking back), so we just pray for the strength for her to continue forward, and the strength for us to carry her, to take as much of this burden as we are allowed. And as we have throughout our journey so far, we pray for those that are providing medical care to Amber, that they have the strength and clarity to continue to provide the best possible care they can.
Day 24, a Word is Worth a Thousand Pictures
We started the day with a trip to the imaging department, for a fluoroscopy to confirm all of her internals are flowing correctly, to prepare for the g-tube surgery on Monday. Was pretty cool watching in real-time as the contrast worked it’s way through her system, with the scanning machine snapping dozens of pictures. Everything looks good, so we are full steam ahead for Monday.
We returned to the room, and started to watch TV, when I decided to try something else – because too much TV isn’t good for anyone. I handed Amber a crayon, and held a coloring book in her lap. And she immediately started coloring! Not just scribbles across the page either – she stayed inside the lines, indicating (to me, anyway) both good vision and good control. She didn’t get very far on her picture before tiring out, but this work of art is going right on the fridge!!
But then, as I’m putting things away, I think I hear Amber breathing roughly, like she did when the breathing tube was removed. I look over, but she doesn’t seem to be struggling at all – when I realize that she is moving her lips and making sounds! I can’t quite make out what she is saying, but she is definitely trying to talk. So I encourage her and tell her I love her, and I ask if she can say “I love you” – AND SHE DOES! Very softly, but more than just a whisper, and very clear. It is pretty hard for her, but she is excited, we are excited, and she does it several more times during the day. This is another major milestone for her!
Then, we cap it all off by taking her for a stroll outside. It’s a beautiful sunny day, about 70°F, and Amber’s Physical Therapist got everything lined up so we could take her out in her wheelie chair for about 40 minutes. To make things even sweeter, her Speech Therapist lined up the permission for us to feed her a popsicle, so we are outside in the sun, eating the best tasting orange popsicle ever, with her brother and sisters, aunt and uncle visiting too. This was a wonderful picture to see.
Lots of beautiful pictures today, surpassed only by the beauty of a few words, delivered by our beautiful Amber. We thank God for letting us experience this beauty today.
Day 25, Sunday, Rest Day
Amber did a whole lotta nothing today, and that’s okay. The way this girl has been working hard this past week, a day of rest was very much earned and well deserved.
A little bit of talking, a little bit of writing, a little visiting, a little TV watching, and a little bit of coloring was about the extent of the day.
A day of relaxing is very much needed to prepare for the week ahead, starting with the biggest upcoming event, insertion of G-tube & removal of staples and stitches in the head tomorrow.
If you don’t mind, extra prayers for Amber’s surgery tomorrow would be very much appreciated!! Thank you everyone!! 💜
Day 26, Looking Good!
Amber just came out of the OR. G-tube installation was successful, and almost all of the stitches/staples have been removed from her head (just a few left in place to keep things healing properly). The feeding tube has also been removed from her nose, so there is nothing covering her beautiful face at all now. She is just waking up as I type, and is smiling. We will all be heading back to her room pretty soon.
Thank you all for the prayers, please keep ’em coming!! But for today so far, we are looking good!
Day 27, Pudding, A Graham Cracker & Juice — Oh My!
Amber’s G-Tube placement was a success. She was in a bit of discomfort during the night and a bit of today. However, the more annoying thing that bothered her today was wearing her helmet — which aggravated her healing (and very itchy) scalp.
After some OT on the mat that consisted of playing Legos and Squigz with our fill-in therapist Erin, Amber ended the session in her chair. She did well in the chair for a while. . . but that poor itchy scalp, being contained in a warm stifling helmet, was not making Amber a happy camper anymore. Once back in bed, helmetless, with a very much needed gentle head massage, and then cold damp facecloth, Amber was back to her content self.
A few hours later it was time for PT and ST together. The therapists were surprised and amazed by Amber’s words and communication! Amber went down with Lauren on the floor mat and worked on building her neck muscles. Lauren seemed pleasantly surprised at Amber’s controlled neck movements; an improvement since Friday. After some more PT, it was time for ST. Sara asked the question Amber has been waiting to hear since Saturday. . . “Amber are you hungry?”. Her eyes lit up with a big nod. But Sara wasn’t letting her off the hook “You have to tell me Amber, are you hungry?”. . . Amber looks at Sara, starts to nod again but catches it, “Yes!”. Sara gives her a list of items she can choose from and Amber settles on “Vanilla Pudding”. Next question was if she wanted something to drink. “Yes”. Amber chose “Apple Juice”.
After Sara came back with the items, she had Amber begin with the pudding. Sara took a spoonful, and Amber took a bite. Sara scooped up another spoonful and asked if Amber could feed it to herself. A head nod and “Yes”, so Sara hands it to Amber who proceeds to give herself a proper bite. Like, a direct hit into her mouth bite! After a few more like this Sara thinks out loud saying “I wonder if we should try Graham Crackers? Amber do you like Graham Crackers?”. Amber nods and says “Yes”. I run and grab some Graham Crackers and hand them to Sara. While Sara breaks off a piece she reminds Amber not to shove the whole thing in her mouth — and she doesn’t. Amber takes a perfect Amber-sized bite, chews it and swallows. Takes another bite, chews and swallows. Now if I wasn’t Amber’s mom and didn’t know the backstory of the fact that Amber hasn’t had solid food now for 27 days, I’d think this is just another healthy kid having a plain old typical snack. What she did was so effortless!
Rockstar. That’s what they all called Amber. After the Graham Crackers was Apple Juice, which Sara started off using a spoon for but by the end Amber was sipping from the cup. After some sips and a cough, she had some more. Then, she was done. . . She pointed to the bed and told them she was “tired”. She did well, really well. The girl deserves a break!
All I can say is, that’s my girl, that’s my Rockstar! Sara said that she is ready to try a lunch tray meal tomorrow!! Bring it on!!
So many blessings and miracles and happiness for Amber (and us). God is Good.
Day 28, The Voice Of An Angel
I wasn’t sure if she’d ever be able to speak again. It was a fear that ran through my mind constantly these past 3 1/2 weeks. It was possible right? I mean she had an unknown tumor that burst which caused a major stroke and 2 brain surgeries. So the possibility of not speaking again (among other fears) was right up there on my list of possible outcomes from all this.
I can tell you in fact that Amber has the voice of an angel. It is soft, sweet, gentle, and. . . well, angelic. It’s hers, it’s our Amber’s, and I will forever thank God for it.
Last night Amber told me that she misses home. I can’t blame her. I can’t even begin to imagine everything she has and is going through and how absolutely terrifying it must be for her. “What do you miss most about home?” I ask. She starts to cry. . . “Rea” she says. Rea is our 16 1/2 year old cat and Amber’s buddy.
This morning Amber says “I want to go home…” I cringe a little because I know what’s coming next. “Why do you want to go home?” I ask. “Because I want to do my homework”. That response completely sideswipes me!! Ha Ha!! Does she really maturely understand enough to put the fact of how long she’s been in here with how much school she’s missed which results in just how much work she needs to make up? Perhaps so.
Her G-Tube spot is still sore, especially when Lauren from PT got her in and out of beds, wheelchairs, and floor mats. We got to do PT down on the 6th floor where their gym is. On the wall in there it says “Super Heroes in Training”. Ain’t that the truth!
After a shower, Amber was exhausted but stayed awake enough to enjoy her 1st lunch tray meal! After some bites of Mac and Cheese, carrots, and chicken, she washed it all down with apple juice from a straw! She did so well that she has advanced to 3 soft food meals a day AND soft snacks and clear liquids with Matt or I!!!
I have to say that I am in awe of Amber Grace. She is so brave and so tough. I cannot thank God enough for her and for her being here with us today. I also cannot thank you all enough for your continued prayers, love, and support through this tumultuous journey. It helps us more than you will ever know. . . 💜
Day 29, 4 Weeks
Four weeks ago today, I carried an unconscious, lifeless Amber into the Backus Hospital Emergency Department, not having a clue what kind of journey was beginning for us. And worse, not sure if I would ever see her awake again. Four weeks later, Amber is not only awake, but is smiling, talking, and giving me sass. Yes, still a long road ahead. But for both Caron and me, our baseline has been dramatically reset; we are far more appreciative of every minute, of every action than we ever would have imagined.
Today was another day of progress, with several new “firsts”: sitting on a toilet, blowing bubbles, eating three meals (pancakes for breakfast, mac and cheese for lunch, and pasta for dinner), playing a board game. 30 days ago, these would have been a normal part of the day; today, I am ecstatic with each of these! She continues to make great progress day after day, and we will do whatever it takes to keep that momentum moving.
Her strength amazes me. She continues to work hard, until she falls asleep exhausted at the end of the day. But she also still gives me “the look”, that smirk and eye roll, the “did you really just say/do that daddy?” expression, reminding me that she is very much my little girl.
Every day she understands a little more about what is going on. Her biggest personal challenge right now is just that she misses home so much, she just wants to get back to her bed, with her cat Rea, with her toys, with her family. This brings her to tears multiple times a day – but it is also a source of motivation for her, because she knows that to go home, she has to “get strong”, and that’s what the hospital is helping her do.
She is a 6 year old (sorry, 6 “and a half” year old) supergirl.
Over the past few weeks, we have commented many times on our ongoing experience here with Connecticut Children’s Medical Center. But in this post marking our four week milestone, I’d like to express special thanks to the people at the Backus Hospital Emergency Department; Dr Adams, the ED team, the Lifestar team, and any others that March 22 morning – your quick assessment and actions that morning were the difference between hope and despair for us. I cannot express the depth of my appreciation for your work, your skill, and the fact that Amber is here with us today because of you. I ask that the prayerful readers of this post join me in praying that God bless these medical professionals, and all medical professionals around the globe, that they may have the strength, clarity, and will to apply their skill everytime the need arises, providing great care as they did for Amber.
Day 30, Getting into a Cycle
Today was a fairly routine day. Which is unusual, because we don’t really have much of a regular routine. But, one is starting to develop, and having some regularity, some predictability, is a good thing.
After a breakfast of oatmeal, Amber and I did a little bit of coloring. Again, she did a great job coloring inside the lines (better than me, anyway!), so that right-hand control and vision are recovering well. She can’t do it long, though, before it tires her hand out, but we are getting further each time.
But, as always, I like to push things a bit. At the bottom of the page she was coloring were a couple of words, so I asked her to read them. It took her a few seconds, but very clearly (and correctly) read them out as “Queen Cat”! This is an improvement from a few days ago, where reading was a frustrating exercise for her.
Occupational Therapy and Speech Therapy came to visit shortly after, and they brought Amber down to the Play Room to play some Connect Four. Between having her sit upright for the game, making her right hand support her left hand to pick up and drop the checkers, and having Amber speak to ask for more pieces or state how many were in a row, they were really pushing her – and she was pushing right through quite well, and having fun too.
She was pretty tired after, but enjoyed a pasta lunch, and then a trip to the PT gym, where she got to ride on a swing while exercising!
Finally a short nap before dinner, and some quiet TV time before prayers and bed.
She misses home terribly, misses her cat Rea, her friends, her toys. She even told us she wants to come home to catch up on homework, because she misses school so much. And unfortunately, we have at least a few more weeks in this hospital room. But, with a little bit of routine to make life less chaotic, she is establishing her own “new normal”.
Her courage and strength amaze me.
Day 31, Day 31 — Really?
As Matt noted reading this post before I published it – this post is a rollercoaster, just like the journey we are on.
Day 31 . . .
I can’t believe we are on day 31. On one hand, it’s all been a blur because I can’t believe we are already on day 31. However, my mind, body, energy, and even my spirit, are just exhausted . . . because it’s been 31 days. That’s me. So how does Amber feel? Her mind, body, energy, and most likely her spirit, are different; injured; foreign. My poor baby girl, this must be all too much for her. And all she wants to do is just go home. We tell her it’s only a couple more weeks, but is it? Are we all just naive and optimistic, when we really shouldn’t be? I’m trying to be hopeful in all this but it is truly hard. For me, it’s the unknown that’s defeating me and bringing me down.
I try not to use the word “hate” because it’s ugly. But I hate this situation so much. I hate seeing Amber suffer. I hate seeing the kids on her floor, Floor 8 (The Cancer Ward) suffering, and I hate for all kids in this hospital to be suffering. Kids are innocent, and this should NOT be happening to them. It’s just not right.
Amber’s been in pain after having the G-Tube put in but I have to chuckle because no matter how much discomfort she’s in, she is so darn polite! She’s cying from being jostled around and she still says her pleases and thank you’s to us and the nurses. I laugh because it’s cute but inside my heart it breaks. It breaks for her innocence and sweetness. And as I write this, I cry . . . because it’s just not right. It should be me in her place, not her.
There is so much to worry about and I’m trying not to let it consume me, but it’s really tough.
Thank God for Matt. My rock, my heart, my partner and my love. When I feel down he picks me up. I honestly couldn’t ask for a more perfect partner to be by my side during this topsey-turvey nightmare. He gives me strength when I need it so that I can have that extra strength for Amber; for our children; for him. Him and I, we’ve got this — together, as a team with Amber. God, I thank you for him; for them.
Day 32, Questions, and Some Spinach
Another fairly quiet day. No Physical, Occupational, or Speech Therapy today, just me and Amber spending the day together. But between meals, G-tube feedings, medications, checking vitals, it’s amazing how quickly the day flies by. We spent some time in the morning coloring together, and watched some Minecraft videos on YouTube together (she still has to explain to me everytime why she wants to watch someone else play, instead of just playing the game herself). And later in the afternoon, we got to take a walk outside, in the sun, with Mem and Pep visiting. A short nap afterwards, then her brother and sisters came to visit.
But during the quieter moments, scattered throughout the day, she would gather up the courage to ask a question or two. Big questions. The Questions. The questions no parent wants to ever have to address. The questions that show just how much your child does understand what’s going on, and how little you can actually shield them from.
What’s going to happen?
When can I go home?
Will this happen to my children?
And bigger questions, that I can’t quite bring myself to write here.
And of course, she wants answers. So I do my best to answer, to be honest, but to do so at a 6 year old level – and learn along the way that I apparently don’t give 6 year olds enough credit.
It’s hard. But it is necessary. She wants to know. She deserves to know. And she is showing the bravery and uncanny maturity of someone who understands there is trouble ahead, and is bracing herself to face it, head on. She is still a 6 year old, and she is scared, but it is clear to me that she knows 100% that Caron and I are with her every step, that she is not alone in this. And so a reasonable level of honest detail from us, and a ton of love and reassurance, helps keep her courage.
And her Faith is strong too – I have been saying the Rosary when I stay overnight with her (alternating with Caron), usually after she falls asleep. Caron, though, has been praying with her before she falls asleep. Earlier this week, Amber asked me if I would “pray the Rosary over her, like Mama does”, because she understands that we are asking for God’s help, through Mary, to help her get healthy. She knows that as long as we ask, God will help us.
Possibly most intriguing to me, though, is seeing her take ownership of the things in her control. Today, lunch was pasta with a side of mushy spinach. Surprisingly, she dove right into the spinach, ate up as much as she could. She never would have touched spinach like this at home, so I asked her why she was eating it instead of the pasta.
“Daddy, spinach makes you strong. And when I get strong, I can go home.”
God, please grant Amber strength for the journey ahead. I can’t wait for Amber to come home …
Day 33, Busy Monday
Today was a busy day. After attempting some (almost) 5 week old homework, Amber had a small speech therapy with a fill-in for Sara named Kiersten during breakfast.
Then Dr. Catie came in and removed the remaining stitches and staples.
We had PT down on Floor 5, and were able to see Amber swing. When she was sitting there she had her feet on the floor and was swinging the swing on her own, even her left leg and foot were helping a little! Then we got on the floor in a high kneel and pushed and pulled a big ball back and forth 5 times!
After that we had a nice visit with Grammy and Grammy back at her room. They brought up the Relic of the True Cross from Saint Patrick’s Cathedral where we said a couple beautiful prayers with Amber before her lunch. During the prayers, while Amber was in the wheelchair, I noticed she was struggling with her right hand to get her left arm and hand on to the top of her tray. I went over and helped place her left arm and hand there for her. I was thinking she was uncomfortable with it being on her lap, but no, that’s not what it was. As soon as I did that for her, she promptly takes her right hand and feeds those fingers through the non-responsive left fingers so that she could properly pray (out loud) those prayers with folded hands. That — that was tough. I choked out the last of the prayers and went to the opposite corner of the room to cry and try to put myself back together. Remember my post from a couple days ago about her. . . innocence and sweetness, yeah, same exact feeling going through me again. These moments are tremendously pure, but utterly heart wrenching.
After going outside to blow bubbles and eat some diced peaches, Grammy and Grampy said their goodbyes and Amber and I went back to her room where she took a much needed nap.
After said nap which lasted about a half hour, Caitlin from OT was ready for her. Down to Floor 6 we went to the little gym. Caitlin had Amber on the mat sitting playing a Grilling Game. At a couple points, Amber was sitting unsupported! She was able to do that all by herself while keeping her neck strong! Then she pushed and pulled a big ball a few times in a high kneel.
Her “button” (G-Tube) is still really bothering her which I feel like is delaying her with forward moving therapies. I think she’d be willing and wanting to do so much more if it wasn’t for the pain and soreness of the G-Tube.
All in all though, a good day for Amber, whose so unbelievably strong & tough!
Day 34, Stand Up & Cheer!
After a bit of a rough start to the morning — Amber threw her breakfast and supplemental feed up (her sibs shared some type of coughing/mucus germ) . . . She persevered. PT with Lauren and crew showed us just how bad Amber wants out of here. Not only did she kneel in a high kneel position (and at some points unsupported), she STOOD UP to stand against her bed with Lauren and Shannon supporting her! Yes, stood up and stayed that way for a few minutes!!! After that, after all that hard work, she literally crawled up into bed!!!
* SUPER AMBER GRACE!!!! *
Once situated back in bed, Amber had a lovely visit from a Volunteer named Michelle and her 14 year young dog named Carina. Carina got in bed with Amber and Amber was in her glory!
After some lunch of mac and cheese and spinach (still on a spinach kick — getting strong from it (and it’s obviously working!)), and bit of chocolate munchkin for dessert, it was time to go outside for some Vitamin D.
Little miracles and blessings everyday. Thank you God, Mary, and Jesus — Amber’s strength is heightened by you. And thanks to you; our families, friends, aquaintences, and even kind folks that don’t even know us (officially anyway) — your prayers and positive thoughts . . . we feel them! Our love to you all! 💜
Day 35, Bacon 🥓 !
Oatmeal and spinach are great, but … sometimes you just need a little bacon! Amber started the day with Speech Therapy bringing in some new breakfast items – things that are harder to chew and swallow, to see if Amber is ready for a “regular” menu. Waffles, whole strawberries, and … bacon! The bacon was a little tough, but Amber gnawed her way through. Following the successful breakfast test, Amber’s menu has been upgraded; she now can order hotdogs and hamburgers, carrot and celery sticks, chicken nuggets. She still needs to eat slowly and carefully, but it’s nice to have her eating pretty much back to normal.
Unfortunately, Amber has caught a bit of a cold along the way though. Lots of sniffling and coughing, enough to upset her stomach. So, breakfast didn’t stay in her stomach very long. But, the other meals stayed down, and she is doing well.
Then, as usual, on to OT and PT. Man, I wish I had Amber’s perseverance when it comes to exercise. An hour on the swings working her arms and balance, and an hour kneeling and standing, kicking her new rainbow-colored kickball.
We are just a handful of days away from the next big milestones – Monday is the MRI to see how the brain is doing and determine if there is any primary tumor regrowth (we won’t get the results until Tuesday, though), and Thursday (May 3) is the surgery to replace the skull flap. And then, we begin eating the whale shortly after.
But hopefully, with a little more perseverance over the next 2 weeks, we’ll have enough of the elephant eaten that we can come home before we tackle that whale. I think that’s just what we’ll need to renew Amber’s appetite, and re-energize all of our spirits.
Day 36, Tiny But Mighty Steps
Apparently, for Amber, standing just wasn’t good enough. She told Ms. Lauren and Ms. Caitlin at PT/OT today that she wanted to walk, and walk, she did.
Amber was sitting in her wheelchair, Ms. Lauren in front of her and Ms. Caitlin on the side of her. With all the practice yesterday, Amber was able to go from sitting to standing; almost with ease. With Ms. Lauren instructing her, she takes a step with her good foot, her right foot. Next is harder, but Amber is determined, and with some aid from Ms. Lauren, she brings that sleepy left leg and foot forward and takes a step. Then her right. Then her left . . . tiny but mighty. As Amber takes these steps, you can see the strength, the purpose, of all this hard work. She knows that if she continues to get strong, she can get out of this hospital and finally go home. Amber walked about 3 feet to her end destination, me, where I was kissing and praising her like only a proud Mama could do! Later on, she walked even further, with her end destination being her bed and by that point she was clearly exhausted — but not too exhausted because she was able to muster that last bit of energy to crawl into bed!
Tomorrow is a big day for CCMC. It’s the annual Superhero Day ! However, I believe that Superhero Day came a bit early. I believe we just saw a Superhero at her finest, today . . . and honestly, almost every day now, there’s been something worth celebrating by this Supergirl!
Day 37, Superhero Day!
When we first arrived at CCMC, a very long 37 days ago, I noticed an informational video looping repeatedly on a TV screen in the hallway, with a short segment showing many of the staff wearing superhero shirts or costumes. During the next week, I remember hearing about “Superhero Day”, and how it was coming on April 27. At the time, a few days into our journey, I remember having two conflicting reactions to this – one reaction stemming from my difficulty in accepting this surreal set of events, not believing that we could possibly still be here by the time April 27 arrives; the other stemming from the deep despair of the moment, worried that we may not still be here by April 27.
Well, we were definitely here today, and Amber fit right in among the Superheroes!!
Superhero Day is a special day at CCMC. As their site puts it,”In honor of National Superhero Day, caped crusaders took a break from fighting crime to visit with our patients who are fighting battles of their own.”
Amber is fighting a battle, fighting it hard. Today, PT brought a walker for her to try standing with. They helped her climb out of bed and grab onto it, and encouraged her to try to take a few steps. With them supporting her torso, and helping direct her left foot, she started pushing the walker forward, taking a few steps. And then a few more. Next thing we know, she is leading the way out the door of her room, into the hallway, and across to the nurses station, dragging the two therapists along with her! By the time she makes it back, a total trip of about 40-50 feet, she is exhausted and needs help climbing back into bed – but, she did it, and was proud of herself (almost as proud of herself as her Mom and Dad were of her!). Yes, she needed a lot of help from the therapists, but it doesn’t matter. She has the determination, and the motivation, to work real hard at this. And, over time, if we can maintain this momentum and the positive attitude, she will be more and more self-sufficient, and defeat both this evil villain and the next.
When I look back 37 days, and re-read some of our earliest posts to this blog, I am truly amazed at the distance we’ve already come. We have avoided posting pictures of Amber during this time – but feel it appropriate now, to contrast our current state against where we were at the beginning. Here is a link to a picture from March 22, hours after her first surgery. I am including this as a link, instead of putting the full picture right here, as some may find the image alarming, or at least may not wish to show it to children – it is of Amber lying in bed in a hospital gown, bandaged and hooked to many machines.
Next week is a big week. Monday we have an MRI, and are expecting to receive the results on Tuesday. This MRI is checking on the recovery of the brain, and looking for any tumor regrowth. Then on Thursday, we go into surgery – first removing any bits of tumor that have returned, then replacing the piece of skull that was removed on March 22.
In preparation for this big week, we ask for continued prayer for Amber, that she continues to be strong in her determination, motivation, and Faith (these are her superhero powers!); we pray that it is within God’s will to grant us a miracle, no matter how big or small, toward Amber’s recovery; we pray that God continue to provide strength and clarity to the medical professionals providing for Amber’s care; and we pray for the strength to accept God’s will, whatever it may be.
And we thank our friends for organizing a special prayer service for Amber, this Sunday night at 7 PM, at our Church, St. Mary’s in Baltic CT. If you cannot attend in person, we invite you to join us in prayer at this time, wherever you may be located.
“You’re much stronger than you think you are. Trust me.” (All-Star Superman) Amber is proving this true, both about herself, and about us, every step of this journey.
Day 38, Be Not Afraid
The weekends tend to be a bit quieter for Amber and for the hospital in general. A little PT with a fill-in for Ms. Lauren named Ms. Heather, a student nurse from Quinnipiac named Catherine (which was easy to remember since that’s Amber’s best friend’s name) hung out with us, and a lovely field trip outside, was basically the schedule of the day.
One of the reasons I love Saturdays, is because it’s Church day. I have grown to love our little routine of getting out to Mass while Amber is cared for by a family member. This Saturday though, Matt was back home with the kiddos so I asked my parents, a.k.a. Mem and Pep (to their grandchildren), if they would like to come hang out. Pep offered to gladly stay with Amber while Mem and I enjoyed the beautiful weather during our 10 minute walk to Father Charlie’s Church, Holy Trinity Mission Church.
I’ve always enjoyed going to church, but lately it means so much more. It’s the spiritual need to go. My soul just feels so good, so cleansed and refreshed. Under the recent circumstances, there’s been a sort of spiritual shift, a deepening with my relationship with God, Mary, and Jesus. They’ve done so much and I look forward to officially “thanking them” at Mass each week.
There were a few things that stood out to me at Mass this evening:
When I opened up the missilet to where they placed the weekly bulletin, the front page made me ponder a bit. Right there, with a beautiful picture of a field during sunrise (or sunset), was the title: 5th Sunday of Easter, which made me think of Amber’s 5th Sunday in the hospital. After everything Jesus went through to get to his peace, I can only pray that Amber finds her peace as well.
Father Charlie was telling us about an interview with a woman on the news recently. When the reporter asked her what she thought about the convicted killer that went to jail, her response was clever, witty, and meaningful, she said “I am too blessed to be stressed”. For most of us, that is so true. But there are people, take Hartford for instance, that don’t have shelter, or food or clothing and that aren’t necessarily “blessed”. Yes, Matt and I are going through a rough patch with Amber’s health but ultimately, we are blessed. Blessed to have the means to be with Amber during this terrible time; great support systems that help us with the other children, great co-workers that help take the load off Matt, great hospital care to help Amber thrive, great insurance to help offset the cost, great family friends and aquaintences to help pray for Amber — and the list just keeps going. At times life right now feels out of control, but it could be a lot worse. All we have to do is look around and realize, we’re too blessed to be stressed.
During Mass, when saying the prayers, I looked down in the pew in front of me and saw that the woman left her book opened to the song that would be sung in a few minutes. I read the title, and again pondered its words: ‘Be Not Afraid’. A beautiful song that I always look forward to hearing my daughter Brianna sing in her choir at school and our Church. The words struck me as more meaningful this evening though, more like an answer to my growing intrepidation of the next few days’ worth of fears . . . ‘Be Not Afraid‘ — ‘I am with you through it all’ . . .
Day 39, The Start To A Big Week Ahead
Amber and I had a low key day. We watched some Minecraft videos, I cut the huge mat out of her hair, I painted her nails and she painted mine, we took a field trip around Floor 8, tried to play XBox Football in the playroom (that was hilarious), read a couple pages of Superkids (as we snuggled in her bed), and then watched more Minecraft videos (yay). Very relaxing and uneventful, which is nice given what’s coming up in the week ahead.
However, there was something extra meaningful later on this evening. At 7PM, Amber and I were praying extra hard. We knew at this moment, and for the next hour, there was something very special happening — St. Mary’s Church in Baltic, our Church, was having an hour-long prayer service in honor of her, and because of that we wanted to make sure we prayed right along with everyone else.
(Added by Matt)
At 7:00 tonight, the kids and I attended the prayer service at St Mary’s in Baltic. It was a simple, peaceful hour of music and quiet prayer. But it was powerful, and overwhelming for me to see all the support. Thank you to everyone who attended, participated, and prayed with us.
When I returned to the hospital to be with Amber for the night, the nurses were working to put in an IV. Sadly, Amber’s poor veins have been through a lot over that past 6 weeks and didn’t want to cooperate. It took several very painful attempts, before having to give up and agree to use a gas sedative tomorrow morning and install the IV then. Watching Amber cry in pain was heart wrenching, knowing that I cannot take this pain for her really tears me up inside.
Caron pointed something out to me tonight. Tomorrow is day 40. This has been 40 days of suffering for Amber. I don’t know if I should draw deeper meaning from this, but I felt it was worth noting anyway.
So now we look to tomorrow’s MRI scan. The scan doesn’t change anything, it doesn’t change our risks. It just reveals what is already reality. We will get the results on Tuesday. So tonight, we pray for the strength to accept whatever the MRI shows, we pray that God grant Amber a path to health, and we pray that God grant Amber peace and comfort during this journey.
Day 40, Bracing Ourselves
We started our day around 6:30 AM, with final prep for the MRI, and our trip to radiology on the first floor for 7:30. Amber was asleep (sedated) for the scan. Everything went smoothly, and we were back in the room by 10.
Now, we wait for results. We are bracing ourselves, though we are not quite sure what we are bracing for. We already know we are facing a very serious, very aggressive brain cancer. We already know that a tumor grew and burst, causing the stroke we have been recovering from for 40 days. We know that Amber goes into surgery on Thursday to have the skull flap re-inserted, and that if there is any regrowth of the original tumor, it will be extracted at that time. And we know that we are going to start going on the attack against the cancer in a few weeks, with all the energy and Faith we have. But still, we brace ourselves for the possibility of new information, of some new direction or impact.
On a lighter note though – Amber’s physical recovery continues to improve, and today we got her new leg brace! This brace will help support her weight on her left leg while we continue to build up its strength, so she can begin walking sooner. And check out the design she picked out:
Just as this brace will help hold up Amber’s body, we pray that God will hold up Amber’s spirit, and will give us the strength to hold up Amber through this whole journey.
Day 41, It’s Not Quite Brain Surgery
(Warning: long but positive post ahead)
Actually, it’s not brain surgery at all — as far as anyone can tell, the MRI shows no tumor regrowth, so Thursday’s surgery will “just” be reinstallation of the skull flap, and no additional surgery to do anything to the brain is necessary!
This really is about as good as we could have hoped for, so we are celebrating this news!
As Dr. Martin was explaining the MRI results to us this morning, it struck me how he talks about the brain, about the surgical process. Clearly, he has been doing this for a while, so I joked with him that he makes this sound “simple”. His reply was a witty “well, it’s not quite rocket science!” And then he pointed me to this Brain Surgeon sketch on Youtube – it’s a good laugh, worth 2 minutes to watch.
Starting off with this good news, the day just seemed to accelerate from there.
We met with the Radiation Oncologist from Hartford Hospital, who will be coordinating the radiation therapy for Amber. We will be meeting with her to start the process next Thursday, and immediately jumping into 6 weeks of daily radiation treatments. Nicely enough, she is looking to coordinate with our local hospital (Backus in Norwich), so that we can receive the treatments with only a 15 minute drive, instead of 50 minutes up to Hartford!
Of course, receiving the treatments in Norwich only makes sense if Amber is back home … and we are indeed talking about bringing her home in the near future! We will assess things after this Thursday’s surgery, but if everything looks good, and PT/OT say she is ready, then we may be looking at next week! So the discharge nurse came and introduced herself, and started discussion with us about the equipment and supplies we’ll need. After 41 days here in CCMC, it’s weird to think about being back home, but this will a great boost to Amber’s emotional health.
And then with PT today, Amber got to try out that new leg brace, and was able to stand on her own two legs, with no support from anyone else (though we were all within 1/2 inch of her just in case, of course). After some exhausting exercise, we got a new wheel chair to prepare for home. A simple wheel chair, striking because of the symbolism – we no longer need all the crazy straps and supports of the one Amber has been using up to this point. We also got a walker for her, to continue exercising those legs until she no longer needs the assistance.
We then put the new wheelchair to good use, with a trip outside. Sunny, breezy, beautiful. Just what Amber (and I) needed.
We wrapped up the day with some family visitors, which kept Amber in high spirits. I’m hoping the food they brought for me wasn’t meant to be shared with Caron, because I destroyed the whole tray in one sitting.
By the way – thank you to those who commented here or reached out to us directly to suggest a port as a resolution to the challenges with the IV. That reminded me to discuss with the doctors here, as we had previously discussed a port as having application for some of the cancer treatments in the future. From today’s conversations, everyone has agreed that a port will be inserted during the surgery this Thursday, instead of during a separate surgery later. And my little girl has had more than enough procedures over the past 41 days, so we’re very happy to avoid additional surgeries!
So today is a day of thanks. Thanks to all of you who have been praying for Amber, thanks to the Doctors, Nurses, and all of the staff here at CCMC and at Backus hospital for getting us this far and putting us on a path toward recovery, and thanks to God for helping Amber stay strong, body and soul. The support for Amber has been overwhelming. The community of people that we have learned are praying for Amber, from many Churches, many schools, many organizations, is overwhelming. The personal notes we’ve received, privately and in the comments of this blog, from others who have gone through their own health battles, especially those with cancer experiences, has been incredibly touching. We are truly blessed to have this support for Amber.
But we are far from done. We continue to make great progress on the Elephant, as Amber continues to work hard to recover from the stroke. But the Whale is looming larger than ever now, becoming more real to us as we have formally scheduled the beginning of the cancer treatment. And let’s be very, very realistic – battling Glioblastoma Multiforme is going to be very, very hard. We are preparing to put everything we have and more into this fight. We will do whatever is necessary to see Amber through this.
So we ask for continued prayer. We ask for prayers for Amber, that she may continue to gain strength and progress toward a healthy future. And we ask for prayers for the medical professionals providing for Amber’s care, that they may be blessed for the work they do, and that they continue to have the knowledge, clarity, and will to propel Amber toward health.
Day 42, Steps in the Journey
Today ends our sixth week of this journey, this epic rollercoaster. While we realize we are not the first ones to have followed this path, we also recognize that it is not a common path that everyone finds themself on. We also recognize that the vast amount of support we’ve received, of prayer being offered for Amber, of love being expressed for our family, is not something that all on this path are fortunate enough to receive. We are truly appreciative for this blessing, and know that there will be a time in the future where we will be able to pay this forward ourselves.
Today was another busy day. I wake up this morning in Amber’s room, and see Amber starting to wake too. I see Amber shifting her legs around, bouncing them up and down a bit. Noting that this is before my first coffee of the day, it takes me a moment to realize that I used the word “legs”, in plural. While Amber has been able to muster some hip movement, and swing that left leg into a few steps before, this was different – the hip, the knee, the ankle were all moving, in sync. By the end of today, we had Amber walk almost 30 feet down the hall, with her leg brace and walker supporting her, and the therapist providing balance. That leg is rapidly coming back to strength at a pace surprising to even the therapists. We still have a lot of work on that left leg, but wow – incredible progress.
Still much work to do with the left arm too. Little intentional movement still, but “little” is far better than “zero”. The race, as I see it, is to see how much ground we can gain before we start the radiation treatment, which is now two weeks away. I expect that her physical recovery will slow when she is also undergoing these treatments. But again, “slow” is also far better than “stop”, and we will work with Amber for as long as it takes.
Tomorrow is a big day. Amber’s surgery to replace the skull flap and install a port is scheduled for 8:40AM – 1:00 PM, and she will recover in the ICU for the following 24 hours before returning to our normal room. All signs point toward a smooth, standard procedure. But please, we ask for prayer for a successful surgery, for the surgeons performing the surgery, for a rapid recovery, and for continued progress. We will post an update here as soon as we can after the surgery.
If all goes well tomorrow, we are hopeful for a return home next week!
Day 43, Surgery Went Well
Amber is out of surgery, and is resting comfortably in the PICU. Everything went well – both the port and the skull flap procedures were successful, with nothing unexpected. She’ll remain in the PICU overnight, and be back up to the “regular” room tomorrow afternoon. But now the PICU is far less terrifying than when we were here before, and we have some very friendly and familiar faces taking care of us (we are with Nurse Alex right now, one of our favorites).
And, at Amber’s request, the surgeons also took care of her doll, Lily. Lily also did well, also getting both a port and a skull flap, and is resting comfortably with Amber. And you if you look close, you’ll see that Cutie, Lily’s teddy bear, also received some surgical attention.
Now for some simple R&R, a normal food menu for dinner tonight, then we get back to the PT/OT maybe tomorrow (or Saturday), and keep working toward getting home …
Thank you, God, for bringing Amber through today’s surgery so well. And thank you to the large team of folks here at CCMC taking such good care of her.
Day 44, Here be Dragons!
Following the successful surgery yesterday, we spent the following 24 hours in the ICU. Unfortunately, between the after-effects of surgery, the variety of medications for pain; sedation, seizure, nausea, constipation, and the general constant noise of the monitors and business of the ICU, Amber decided she didn’t want to sleep. So while I went to bed around 10 PM and swapped with Caron at 2AM, we each got around 4 hours of sleep, Amber got a total of maybe 30 minutes of sleep. By the time morning rolled around, the combination of exhaustion and medications had her very disoriented, and was messing with her vision. She couldn’t remember where she was, at one point even thinking she was outside. She told me it looked like I had another nose coming out of my cheek, and then she thought there was a dragon flying around the room.
And – she was cranky, like any 6 year old would be after 24+ hours awake. Heck, I would be cranky too if I had gone through what she has been through. And this manifested itself repeatedly through the day with her breaking into sobs of despair, wailing through the tears about how much she misses home.
As her parents, this is all heartbreaking to watch. But oddly, it is much less concerning than it would have been 6 weeks ago when we started this. Our baseline has been reset. It’s not that we’ve become numb to this, it’s just that we have a better understanding and appreciation of the risks and impacts now, and we’ve come to know and trust the people taking care of Amber. We don’t jump every time one of the monitors beeps now. If the worst thing she experiences coming out of one of these surgeries is an imaginary dragon, then that is far better than what we thought our best cases might be 6 weeks ago.
But the real Dragons, the unknown, the uncharted territory, lie ahead of us, and not so far away anymore. Amber will be getting her wish of heading home soon. And while there is tremendous relief in this, it is also a bit terrifying to know we will be the sole caregivers for her again, with some new responsibilities beyond what our parenting role had been before. But, we embrace this, we will do whatever needs to be done. And we are very appreciative for the support of our family and friends in helping us through this, and through the scarier Dragons that loom further into the future.
Amber was cleared to return to her room on the eight floor shortly after 1:00, and got to take a short nap before dinner. A little real food in her system helped cheer her up a bit, and then she let me cuddle with her in her bed while we watched some TV (her favorite show: DC Super Hero Girls) until those little eyes couldn’t stay open any longer around 8:00. As Caron and I both do with Amber just before she falls asleep, we said the Rosary, and she is now in a deep, peaceful sleep.
And as I sit here next to her bed, writing this blog post, watching my beautiful little angel snooze, I thank God for this time with her. We have a sense of some of the major challenges ahead of us, but we don’t know what the future will be. We do know, however, what the past 6+ weeks have been, and what could have happened. Dragons or not, we are going to appreciate every day we get with our family.
Day 45, 50 Feet & Counting
After a restful night and a yummy well deserved breakfast of Cinnamon Toast Crunch, Amber was ready to tackle the day.
Our fill-in Physical Therapist was Ms. Sue. Ms. Sue had never had Amber before so she was taking it very careful, very gingerly with her. However at one point when Sue asked if Amber could try to stand up, and Amber did — tall and firm, Ms. Sue could now see that Amber was no delicate flower. And with that, the two of them went off, slowly but surely, down the hall, walker and Ms. Sue helping, for a total distance of around 50 feet!
Amber also got to enjoy some fresh Spring air outside today as well. The best part of being outside though? Amber didn’t have to wear her “stinkin” helmet!!!! She calls it that because it’s been nothing but problems and quite uncomfortable from the start. And what has Amber been telling everyone what she plans to do with that “stinkin’” helmet when she gets home? “I want Daddy to run it over with his truck and then I want to throw it in the fire pit”!
Day 46, Blessed
Amber and I had a nice quiet day together. So with that, I’ve decided to write about something else that’s been on my mind.
In the Pre-Op room on Thursday, we were introduced to the head nurse that would be in with Amber during her procedure. Her name was Beata. Beata, as it turns out, was the one that also took care of baby Lily (and Cutie) in the OR, adorning her head in wrappings and ports, to match Amber. Beata and Amber’s team did not have to do this extra thing, these extra steps. It most likely set the nurses and doctors back from their next appointments, and they probably fell behind in their schedule a bit. But instead, these doctors and nurses went above and beyond to take Amber’s comfort to the next level, to have her baby come out safe and sound with the same exact recovery as Amber herself. This sentiment speaks volumes of the hospital.
For me however, the sentiment goes further. Amber’s head nurse that day was Beata, as I mentioned earlier. When we were introduced to her and she told us her name, my mind immediately went to the word: Beatitudes. I took a mental note to look those up later because at this particular point, it was go time and I was able to go in the OR with Amber while she fell asleep. Later, in the waiting room, after I said my prayers in the hospital’s chapel, I finally got to look up the Beatitudes. You see, I couldn’t quite remember on my own what these were because it’s been a long time since my CCD and CYO classes.
According to Wikipedia, The Beatitudes are eight blessings recounted by Jesus in the Sermon on the Mount in the gospel of Matthew. The eight Beatitudes are:
* (1) Blessed are the poor in spirit: for theirs is the kingdom of Heaven.
* (2) Blessed are those who mourn: for they will be comforted.
* (3) Blessed are the meek: for they will inherit the earth.
* (4) Blessed are those who hunger and thirst for righteousness: for they will be filled.
* (5) Blessed are the merciful: for they will be shown mercy.
* (6) Blessed are the pure in heart: for they will see God.
* (7) Blessed are the peacemakers: for they will be called children of God.
* (8) Blessed are those who are persecuted for righteousness sake: for theirs is the kingdom of heaven.
Reading further into #5 about mercy, there is another notable devotion associated with the works of mercy, the Divine Mercy — which are reputed to be related to the apparitions of Jesus Christ that appeared to Saint Faustina Kowalska. I can’t help but think about how we prayed with Amber a few weeks ago with Saint Faustina’s relic . . .
Which brings me back to Beata. The name Beata, which derives from Latin and means beatus, or blessed. God blessed us with Beata watching over Amber, and Lily. Amber is blessed by God with her recovery thus far. And we are blessed for so much; Amber, the nurses, doctors, staff at CCMC, our families, our friends, our aquaintences. We are at the mercy of God in all of this — from the beginning to the end.
Day 47, Amber’s Way
Amber had an AWESOME day!
Getting ready this morning Amber chose her Supergirl pajamas, which basically set the bar for the rest of the day.
In PT with Ms. Lauren and Ms. Amanda, she blew their socks off by not only walking 100 feet with the walker and some assistance but when we went down to the gym on Floor 6, she walked UP and DOWN 4 steps, TWICE! Once assisted with Ms. Lauren and the last with me. 16 steps!
Then in OT with Ms. Caitlin, Amber MOVED her LEFT ARM and HAND! I kid you not! Amber’s been squeezing our fingers a little bit the past few days with her left hand but this was just amazing! She has a long way to go, like the way her left leg and foot were but, wow . . . just wow!
Amber’s Way: She’s Determined, Strong-Willed, Tough, and Ready To Get This Thing DONE. *~* She’s SUPER AMBER GRACE *~*
And to end the day, more great news. We got the word from Dr. Martin that Thursday — This Thursday, is the day Amber should be able to come home! Furthermore, how coincidental and appropriate that this Thursday is also Ascension Thursday; when Jesus’ body ascended into Heaven — He went home too!
Amber is on her way, fast and furious. The evidence is clear just how BIG her fighting spirit is — more than ever, especially with a discharge date only a few days away. Amber has proved which way she wants to go, and go she shall!
I will leave you with a fitting quote that was posted up in the Post-Op room last Thursday:
Good, better, best. Never let it rest.
‘Til your good is better and your better is best.
– St. Jerome
Day 48, Almost There …
Everything is lining up for discharge on Thursday! Of course, nothing is done until it’s done, but we are almost there!
As nurses stop in to say bye because we won’t see them over the next few days, it’s a bit funny to know we’ll miss them. We wish, more than anything, that we weren’t here, that this never happened. But – it did. And we met some incredible people who have helped us through this, who have become a part of our lives over the past 7 weeks. As anxious as we are to get home, and even knowing we will be back frequently as part of the ongoing treatment process, we will miss the people here. The nurses, the admins, the custodians, the techs, the security guards, the PCAs, the doctors, the social workers, the therapists – they have all been part of this with us. And we thank all of them so much for helping Amber recover so well.
Even in these last days here, Amber continues to push, to develop. Today she walked up and down the flight of stairs in the PT gym twice, then down the hall to the elevator with her walker, and from the elevator all the way down to her room. Then during OT, she is supporting herself on her LEFT elbow, and squeezing that LEFT hand, and moving the whole LEFT arm! I didn’t think we would see that before we left here, and was nervous about what that would mean. Still a lot of work to do with that arm and leg, but compared to where we were 48 days ago, it’s amazing progress! And even though she was exhausted from all that work, she still wanted to attend two art sessions today!
So, a few more days and we’ll be home. Now we pray that Amber is as strong, determined, and successful in this next phase of treatment.
Thank you all for being part of this with us.
Day 49, There’s No Place Like Home
There’s been a flurry of activity yesterday and today in preparation for Amber to come home. As terrifying as it is to leave this support — this crutch; the hospital, our nurses, and our doctors, there is something to be said for There’s No Place Like Home.
Matt and I know that going home is going to greatly help complete the task of devouring our elephant, and get us ready for the whale, which is the next phase. There’s nothing like home . . . Home sweet home, with Amber’s siblings, Amber’s own bed, and best of all, Amber’s best buddy Rea.
Amber has come so far and has made such great strides. It even seems that Amber’s recovery has come along a bit more quickly than some expected early on here. Yes, Amber worked her buns off making that possible but it wasn’t just her hard work and desire that got her to this place. As we’ve written several times, the medical care, the human care, provided here at Connecticut Children’s Medical Center has been incredible. But there’s more to it than that.
Matt and I would like to express our gratitude to you, our family and friends. You, who prayed. You, who supported. You who took the time to set up prayer services and send mass enrollment cards. For creating cards and decorations, making food, sending care packages and gifts, or even just offering a positive thought about her. All of this — this overwhelming adoration and care for our little girl and for our family, it makes our hearts and souls rejoice. I honestly wish I could open my heart and show you how full it is of love and joy.
You all helped in Amber’s recovery from a major stroke. You helped Amber wake up, and move her right side, and talk, drink and eat. You helped her color, read, move her left leg and foot. You helped Amber have amazing MRI results and safe surgeries. You helped Amber to stand, walk and go up stairs. You helped her move her left arm and hand. You helped Amber to get her spunk, sweetness and sass back. YOU helped her, and you helped us. Every single one of you. God brought us together for a reason . . .
💜 From the bottom of our hearts, Thank You 💜
Day 50, We’re Home!!
(We’ll write a separate post later about getting our mask for radiation treatments today)
Short and sweet – Amber came home today!!! It has been 50 days since all 7 of us (including Rea!) have been home at the same time – and it is wonderful to finally be here.
Here are a few pics from our day.
Day 51, Simple Laughter
A nice, quiet, simple day today. Lots of phone calls to make, appointments to schedule, etc., but just an easy day with Amber at home. Amber practiced her walking with us, played with her brother and sisters. And they all laughed together, beautifully.
And while we know that not every day will be like this, we’re going to enjoy every one we get.
Day 52, The First Bite of the Whale
Everything is alright in the world . . .
That’s how it feels having Amber home. Although, truth be told, these first few days have been a bit difficult and exhausting in regards to helping her with her ongoing recovery; Matt and I filling some of the role of PCA, PT/OT, and nurse, while also trying to schedule upcoming appointments, trying to maintain a “normal” schedule with the other children — all of this while trying to “settle” into our new way of life. It’s tough at times but totally worth it, to have her here with us, right here, right now.
Amber came home this past Thursday. Before we were discharged we said our goodbyes, took pictures, and gave hugs to everyone we could that took special care of Amber. The emotions were bittersweet. Sweet because, well, everyone was. CCMC took exceptional care of Amber, of us. Bitter because of the fact that we were even in this situation in the first place.
After we were discharged, we had to head over to Hartford Hospital to have a special mask created for Amber’s upcoming radiation treatments. Hartford Hospital is literally right next door to CCMC. So as Amber, Matt, and I are walking (and wheeling) past the outer edge of CCMC where we usually hung out when we took Amber out for an hour or two, Matt and I joked, saying that at any moment, the security alarms were going to blare and security was going to come and grab us because we’ve gone too much past CCMC’s boundary! However, there were no alarms nor security guards coming for us to take us back. We were — ~~ FREE ~~ –!!!!
So, for that first bite of the whale . . .
We found the Radiation Oncology department and proceeded inside with Dr. Bertsch and an RN named Kara. They took us into a room where there was a CT Scan and a few technicians (all women by the way so Matt was way outnumbered). Dr. Bertsch and crew explained to us how they were going to make her mask; a flat piece of plastic that is heated and molded to the face. In order to do this, Amber had to lay down on the CT Scan table/bed, with her head lined up just so. One of the technicians gave us a sample of the plastic that was heated up so that Amber (and us) knew what to expect. And quite honestly, when she gave me my little piece, oh man was that sucker hot! I’m thinking to myself, how is Amber going to be able to lay there with this hot piece of plastic molding her face? Yikes! Although it was alarming for the degree of heat of the plastic, I am very happy that the technician did this because I think it helped Amber. She now knew what to expect.
So there’s Amber, lying flat on this table/bed, covered in a nice new silky soft blanket, with this hot piece of plastic molding to her face. She did not, cry, she did not yell, she did not complain one bit, and all while being completely and perfectly still. She remained still even more so when it was time for Matt and I to step in the back room so that she could have her CT Scan done. Again, this little girl amazes me. Every day, it’s something new. When finished we got to see and keep the finished product, as it will be used every day for her radiation treatments, to make sure her head is in exactly the same position each time. Furthermore, Amber received that special blanket I told you about earlier, 2 large Kit Kats, AND she got to pick out a Princess Waffle Maker and Activity Cup, with a beautiful handmade pink bag to put it all in! Man oh man.
The next day, on Friday we did receive a call from Dr. Martin indicating that the CT Scan showed some excess fluid. So, this coming Tuesday we are going to have another CT Scan done to see about the fluid levels, and take it from there. Dr. Martin wants to make sure that everything is copacetic before the start of Radiation next week.
One last thing, I know I probably sound like a broken record but I have to just say how truly Blessed I am. Tomorrow is Mother’s Day. My Mother’s day wish came true. I am spending my Mother’s day with Matt, Marie, Brianna, Ryan, and AMBER, altogether, in OUR home under ONE roof. Oh! And Rea of course too! That’s pretty special right? Well that’s not all. Tomorrow night, also on Mother’s day, there is another prayer ceremony for Amber at our Church; St. Mary’s Church in Baltic at 7PM. A prayer ceremony in Thanksgiving. There is so much to give thanks for . . .
Day 53, Ultimate Mother’s Day
I’m sure it’s probably pretty obvious that today’s Mother’s Day is the Ultimate Mother’s Day for me.
Never ever, in a million-billion years, did I ever think there would be a time in my life, especially this early-on in my motherhood, where there could be a chance that I would be celebrating Mother’s Day with either (1) being in the hospital with a child, let alone with a child that has a new-found life-threatening illness or (2) at home “celebrating” Mother’s Day with a child that has passed. We lucked out that it was not the latter, and we lucked out that we are not currently in the hospital.
I believe earlier on when we started this blog, I mentioned that sometimes life throws us a curve ball. Where life as we know it suddenly changes. Sometimes for the good and sometimes for the bad. Even though I would prefer the kind of change that is good, I must admit that I’m not sure if these past 7 1/2 weeks have been necessarily “bad” either. I know this must sound crazy but honestly, in the beginning of Amber’s journey, all of this was bad, really really bad. But given where we started, given that new perspective on life, we are emerging good, really really good. And we have a new appreciation for every day, for our family, for our community, for our faith.
Look at where we are today, on Mother’s Day. Amber is with us, alive and literally kicking (we’ve been practicing!). She was able to come home from the hospital after a major stroke and she is AMBER. Yes we have a long way to go as far as the PT/OT and upcoming cancer treatments but she’s back home, in her surroundings and in her environment, and she’s her sweet sassy self. We were able to celebrate this morning by going to Mass at our Church, all together. It was beautiful, it was wonderful, it just felt complete. We owe so much to God, Jesus, and Mary. Mary granted me this absolute, wonderful, blessing of an Ultimate Mother’s Day gift and for that I am eternally grateful.
And tonight has completed my Ultimate Mother’s Day. Tonight was the Academy of the Holy Family Holy Hour for Amber. And Amber, her alive-and-kicking-sweet-and-sassy self, got to attend! The Holy Hour was beautiful; intervals of peaceful healing music mixed with prayerful silence. Thank you to everyone who took the time out of their busy Mother’s Day schedules to share this night with Amber and with us. What a perfect day. What more could I ask for on Mother’s Day?
Day 54, Adjusting Well
Amber is adjusting well to being home. While I was busy doing typical Monday morning stuff with the other kiddos, then on and off with phone calls, then sliding in a grocery shopping while their grandparents babysat, Amber and Ryan were able to keep themselves pretty much entertained (and annoyed with each other) for a while. Later on, while Ryan was napping, Amber and I were able to practice going up and down a flight of stairs as well as trying to motivate her left arm and hand with playing in some kinetic sand. After that, we opened up a Princess Math Workbook that her teacher had given her and ended up blowing through 6 pages before it was time to head outside to get her sisters off the bus.
Today was a good day 🙂
Amber working on her Princess Math Workbook
Day 55, A Better Understanding
We went for another CT Scan today at CCMC. After the CT Scan we went up to the 5th Floor to the Cancer and Blood Disorders Department to meet with Dr. Gillan, our Oncologist. After chatting with her a bit, Dr. Martin joined us to discuss the CT Scan. There is still some fluid build-up in Amber’s head but instead of it being in the main part of her brain, it has moved out and down towards her right cheek bone and temple area. For now, we are going to watch and make sure that the swelling doesn’t get bigger and make sure it stays soft, otherwise we may try steroids or a stint for drainage. Nothing too troubling, just something to watch.
We discussed a few questions that we had regarding upcoming treatments. The plan for now is that we will do radiation for 6 weeks. 4-6 weeks after that we will do an MRI to see if there are any new tumors. If all stays the same then we will continue to get MRI’s every few months. If those results stay the same and there is no new tumor growth than we continue with MRI’s every 6 months until we get to 5 years with no change and then she will be in remission. That would be the perfect scenario, and we pray for this kind of result. However, we know the chances of that are quite small, so we are prepared for additional treatments, and potential clinical trials – we discussed today a promising Oncolytic Virus Therapy which uses the Polio Vaccine, being trialed at the University of Alabama. We will follow Dr. Gillan’s lead on this (as hard as it is to trust someone else with Amber’s well-being, we have developed a deep trust in the doctors at CCMC – though we will also do our homework too, of course).
On our way out of the hospital we ran into Carina the therapy doggy that snuggled in bed with Amber a few weeks back! It was a nice way to wrap up our visit at CCMC today. But the day wasn’t quite done yet – we had one more stop to visit our pediatrician.
So, after a brief stop for some McD’s, we went to go see Dr. Gellar at the Norwich Pediatric Group in the Colchester branch. We are quite blessed to be surrounded by good doctors who are also good human beings. Dr. Gellar talked with us for quite a while, asking about Matt and me too, making sure we had everything we needed. And, he helped us close one remaining open issue for us – it’s been tough to find pediatric physical and occupational therapy around the Norwich area. Dr. Gellar checked with the team in the office, who indicated that Lawrence & Memorial Hospital would be the right place to go. This agrees with what we were hearing from others, so we’re going to go in that direction.
So, a good day. Some better understanding of where we are going, what we are hoping for, what the options are. Tomorrow with meet with the radiation team at Backus Hospital, and kick this into high gear. We pray for rapid, complete treatment, and also the strength to accept whatever outcomes we are delivered. And again, we thank God for every day He has given us here, and for connecting us to the people that will help give Amber the best chances through this.
Day 56, Therapies
Today we met with the Radiation Team at Backus. Everyone was so pleasant and welcoming! Amber is set to have her first radiation treatment tomorrow.
I was also able to finally set up PT and OT with L&M Hospital. Unfortunately for now, OT will be at the Pequot Health Center in Groton and PT will be with the Waterford Outpatient Rehabilitation Services. Turns out that the OT at Waterford ORS is on family leave and the PT at Pequot HC is leaving. So . . . for now we’ll do both places and hopefully, eventually, we’ll just end up at one place with back to back appointments.
As Amber starts her radiation treatments tomorrow, 5 times a week for 6 weeks, please continue to think of her and pray for her. It’s so scary to think that our little Amber Grace is having radiation. Radiation in hopes that it puts the cancer in remission — or at least puts us one more step in the right direction. I still honestly can’t even believe that I’m saying the word “cancer”. A Glioblastoma Multiforme Grade 4. Am I seriously even writing this right now or am I still in a really horrific nightmare and will wake up to everything being as it was before all this?
Day 57, Radiation Countdown
Today we had a visit from a couple of sweet ladies from the local Palliative Care* organization. They are another resource for us to use, as needed, to help with Amber’s care or for the rest of the family (ranging from pain management to family social work). After some very positive discussion with them, we are going to hold off for now and wait until a potential future time where we feel we need it more, so that we don’t unnecessarily exhaust what insurance will cover. But it is very comforting to know we have another local resource available to us.
Amber had her first radiation treatment today at Backus Hospital in Norwich. The team there had a little stuffed animal friend named Tasha waiting for her when she first arrived that kept her safe and did the therapy with her. Amber did great – she wore the mask, held real still, and was smiling (nervously) the whole time.
One down, 29 more to go . . .
* Palliative care is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.
Day 58, The Beat of Her Own Drum
Amber’s been asking to go to school to visit. Well, today was finally the day! It seemed like all of Amber’s friends were just as excited to see her as she was to see them! It was a beautiful moment in time for me to just step back and observe all the love.
We met with our new Occupational Therapist, Michelle. She seems promising and we are looking forward to having her work with Amber and hopefully continue the great progress that was already started with Caitlin.
At radiation therapy, Amber was in a bit of pain when they tried to put her mask on due to Amber’s healing stitches being tender and sore. However, not to worry, the ladies came to the rescue with an easy fix and all was right again. When we were walking out, Darlene and Shelly stopped in the hallway to show Amber a colorful link of papers with numbers on it. At the very bottom was a purple #29. The ladies created a countdown for Amber’s treatments! So every day Amber goes in for treatment, she gets to pull another link off. How creative!
Tonight was a very special night. Tonight was the girls’ Spring Concert. And as it turns out, Sister Patrick, principal of our school, dedicated it to Amber. I don’t think 58 days ago any of us thought Amber would be in the audience tonight enjoying her school’s concert, but she was. THAT is the healing power of prayer, of God’s love, and of course, pure determination from Amber. These past 58 days for me have been a reevaluation of myself and what’s important. So when hearing a few songs tonight that Brianna sang in particular — Amazing Grace, Somewhere Over The Rainbow and From A Distance — the words of these songs and the voices of these children struck a chord. The chord it struck was my baby girl sitting right next to me with her sleepy left hand nestled in mine. All I ever wanted in life was to be a mother and God has granted me this honor of being Amber’s mother one more day.
At the end of the concert, Amber was presented with a big card, maracas, and a beautiful Djembe drum from some of the Academy of the Holy Family students as well as Alice, their Spanish teacher. Now those instruments will help progress Amber’s sleepy left arm, hand and fingers! Thank you! Amber can now literally march to the beat of her own drum; which makes sense since this is Amber’s Way.
Day 59, Sundae Saturday
Saturdays are the best day of the week. They are usually low-key and laid-back. In between some leisure time, Amber practiced stairs, getting down on her hands and knees, left arm and hand movements, as well as my favorite of the day, taking a few independent steps back and forth between Matt and I!
With all that hard work and of course with the glorious Spring Concert last night that her sisters sang in — that calls for a celebration and a treat — Sundae time! Matt and I took the kiddos out to Friendly’s and got our fill of ice cream!
Amber’s Sundae: Mint Chocolate Chip with LOTS of Cherries
My Sundae: Reese’s Pieces with Forbidden Chocolate, Hunka PB Fudge, and Oreo. Instead of Marshmallow, Extra Peanut Butter! HEY — Don’t judge…A Mama Can Celebrate Too! 🙂
Day 60, Another Quiet Sunday
Sundays are for rest, and today was a quiet, restful day.
While Caron took the older girls to a birthday party today, Amber and Ryan stayed home with me. Ryan helped me with Amber’s exercises, making sure nothing was in her way as we walked around, and giving her something to reach for while stretching the arms. Steady progress as her confidence and balance grows, walking more, holding onto the table as she goes (with me hovering no more than 2 inches away, of course).
It’s challenging for me. We cheer her on, make a big deal out of each positive step. But it tears me up inside, watching this six year old’s strength and determination. Amber shouldn’t have to relearn to walk, to move. But she keeps at it, determined to keep progressing. I don’t know if I’d have the same determination in her place; at the very least, I’d have a few meltdowns along the way, crying over how unfair this is. But she doesn’t stop, doesn’t meltdown – she just keeping going, and does so with a smile.
I pray she keeps this determination and strength, and happiness. Tomorrow is the third day of radiation therapy, the third day of attacking the whale. And there are many days of this ahead. So we rest today, and get back at it tomorrow.
Day 61, An Almost-Perfect Day
What a beautiful spring day today. The sun is shining, the birds are chirping, the smell of fresh cut grass and flowering bushes are in the air. It is an almost-perfect day. Almost. In another realm this would be perfect because Amber would be a healthy six and a half year old with no cares in the world during this picturesque spring day. But it’s different now. Our lives are forever different. It’s going to take a lot to hopefully, eventually, get back to a somewhat perfect time in our lives. Where maybe, hopefully, I can really take in this beautiful flawless day with a relief that Amber’s battle is won, instead of what’s looming in the distance. It hasn’t been simple thus far nor will it be going forward. I know that, Matt knows that, and you know that. I also know sometimes Amber feels that way too. Like today —
Tonight at dinner Amber started to cry. “I don’t like my life. I wish I could just be back to normal again. I wish I could just do things on my own. I wish I could walk. I wish I could run. I wish I could use the potty by myself . . .”
Tough words coming from a six and a half year old. True words coming from a six and a half year old. I suppose even Super Amber Grace can feel down sometimes too. All we can do is reassure her that she will get there and that she’s come so far already. But that’s hard for a little one to comprehend. She doesn’t see the progress as it’s happening, she just wants the end result — which I can’t blame her. I am still in awe at her perseverance. I personally would have checked out (mentally) months ago. Sometimes, even for myself, it feels good to let it all out, and I believe that is what Amber had to do tonight. So with some positive encouragement, a hug, a kiss, and an ice cream sandwich, she was already moving on . . .
Day 62, Lives Touched
Sometimes our lives are touched by strangers, who then become so much more.
Today was one if those days. Yesterday we had a comment on this blog from Dr. Adams, Amber’s doctor at the Emergency Department at Backus, letting us know she would be working today if we were able to stop by and say “Hi” sometime when we were in the area. So Amber and I stopped by before her radiation. The overwhelming response from Dr. Adams and team was so beautiful and so touching. They were so happy to see Amber and to see how far she’s come since that first dreadful day back on Thursday, March 22nd. As I was watching the girls interact with Amber, I couldn’t help but feel such love and devotion to them, to these people who were “strangers” before all of this. I say the word strangers very loosely though, because honestly, since March 22nd, 62 days ago, I believe they instantly became a part of our family. Because we owe them so much — they aided in saving Amber’s life. Plain and simple. And because of that, they have blessed our lives immensely.
After that wonderful reunion, Amber and I headed to her radiation appointment. While we were in the waiting room, a lady that I briefly met yesterday came over and sat down next to me. After exchanging pleasantries (I honestly didn’t know if she actually remembered me from yesterday or not) she says to Amber, while looking in her purse for something, “There’s been someone crying in my purse that just needs to come out. I think she needs a new home.” So with that, the lady pulls out the cutest little gray Elephant with a TY heart tag that has the name “Ella” on it. The softest sweetest elephant. And an elephant to boot, how appropriate — as if this lovely lady knew our story of The Elephant! After chatting a bit, I found out that today was this lady’s last radiation treatment. How did she know that she would run into Amber? The timing was perfect and again, so very touching. After we chatted some more it was time for Amber to go into radiation. After Amber and I said our thank yous and I wished her good luck, she said that she will be thinking and praying for Amber.
These people, who were strangers to us before all of this, have forever touched our lives, and perhaps, Amber has touched theirs as well . . .
Day 63, Not Enough Time In The Day
Amber had a nice visit with Dr. Martin, Allison, and Dr. Paul today. Amber’s swelling on the right side of her face has gone down, so that’s really good. Dr. Martin took out 3 stitches today too, which Amber greatly appreciated as those 3 have been hurting her, especially when the tight radiation mask goes on.
Amber didn’t do much walking around in the beginning part of the day because we were in the car for a while going to and from Hartford and then as soon as we got home she was sitting again for a quick lunch before radiation. She ended up complaining to me that her buns were hurting. When we got to radiation she opted for walking (with me spotting) instead of the wheelchair! First stop before radiation though, the water fountain because she was a thirsty girl. On the way to the fountain, a nice lady looked at Amber then to me and said “I will pray to God for your daughter.” So meaningful . . . Then Amber continued on to the radiation suite. She did fantastic and I think she even impressed the radiation crew!
Originally today was supposed to be our first PT visit in Waterford but because of scheduling conflicts, it had to get pushed off to June 6th. I’m a bit bummed that it is 2 weeks away because it makes me nervous for whether that will regress Amber’s progress. Matt and I try to do as much as we can but on days like today where 2 appointments essentially took up the whole day, followed by a brief nap and then dinner, it’s hard to fit much else in. I feel very guilty that I can’t do more with her, especially OT wise; her left arm, hand, and fingers. Michelle our new OT suggested some exercises with her but again, it’s hard juggling everyone’s busy lives and fitting “quick” exercises in. However, with all this that I’m venting about, I will say that at the dinner table, Amber was able to relax her fingers and then make a fist, relax again then fist! Relaxing her fingers has been a real struggle for her, so seeing this made us all rejoice. Furthermore, later on, Matt called me into the family room showing me Amber shaking the maraca with a slight wrist movement!!!
Day 64, Vitamin D and Puppy Love
Amber had a good day. Watching some TV in the morning, then some PT, OT, and LT. What’s LT? Learning Therapy — coined by Amber! 🙂 After all that, Amber, Ryan and I got to go outside for a nice dose of Vitamin D while blowing some bubbles.
At radiation therapy, there was a therapy dog named Mugsly. He was a cute white pup with 3 legs and quite handsomely adorned in a bow tie! Amber and Ryan got the biggest kick out of him! Not only did Amber get to sit and pet him before radiation but luck had it that he was still there afterwards as well!
It’s refreshing to know what a little bit of Vitamin D and some puppy love can do for the soul!
Day 65, Amber’s Selfless Wish
Today was busy, I’ll admit it. But lately there’s been some . . . well, let’s just say “hmm” or “ah ha” moments in between all the chaos — which definitely puts life into perspective.
Today was field day for the girls. Hustle and bustle to get them out the door with both Amber and Ryan close behind. After dropping Ryan at my parent’s house and the girls off at field day it was time to go to OT. OT was great with Michelle, Maura, and McKenzie, a student from Quinnipiac. Michelle noticed that Amber’s left hand and wrist have loosened up since the last week which is great. Michelle and Maura showed me some more exercises to do with Amber to keep up with the stretching of her arm, elbow and shoulder, along with making sure that Amber gets her core muscles tight as well as her back straighter.
After OT was done Amber really wanted to go to field day to watch. So we hurry back towards home to try to make it in time, which was really close considering field day ended at 12:30 PM. We made it just in time to spend about 40 minutes having lunch with her class. Amber was in her glory!!
Then it was time for me to whisk the girls away from field day and drop them off to their grandparents’ house where Ryan was so that I could bring Amber to radiation. Radiations have been a little extra special because yesterday Amber’s Memere got to come with us and now today, her Pepere came with us. After radiation I had to run to Stop & Shop (thank you Pep for staying with Amber) to pick up some groceries as well as bouquets for the big dance recital that’s happening on Sunday.
After picking the rest of the kiddos up from my parent’s, and putting half of them down for naps, it was time to unload stuff from field day, groceries, and flowers. Later, while I was making cupcakes for this upcoming weekend, my mind kept pondering over something Amber said earlier in the day. Amber’s been coming up with “wishes” for the Make A Wish Foundation, where she has a special Wish Box to put them in. She says to me “Hey Mama, I have another wish for the wish box.” “Oh great Amber, what is it?” and she says “I wish for Cousin Jenn not to have Cystic Fibrosis anymore.” I stop what I’m doing and look at Amber. I’m dumbfounded. How can this six and a half year old have this level of maturity and selflessness to ask for, to even think of something like this? Her wish. My heart swells. My heart breaks. So special and so awe-inspiring. Makes me wonder how I can be less selfish, and further, on a grander scale, how the world can be less selfish; to think of others instead of just ourselves. There’s a lot to take from this very simple and very sweet request of a child’s personal wish. Perhaps we all could learn a thing or two from Amber.
Day 66, A Fairly Normal Day …
… and “normal” is a wonderful thing. While Caron and the older girls went off to their dress rehearsal for the upcoming dance recital, Amber and Ryan stayed home with me. A quiet day, eating lunch outside on the deck, and getting a little walking exercise with a trip down the driveway to get the mail. Ryan is a big help with Amber, making sure nothing is on the floor that she could trip on, getting her a drink, making sure she is comfortable.
It’s hard to fathom sometimes that the challenge in front of us is so huge, so critical. But, we have to just take one day at a time, and so having this kind of day is a beautiful thing. And we thank God for each day, and for all the people that are helping Amber – from the doctors and nurses, to those praying for her, to her little brother.
Day 67, Dance Recital
Today was a big day – the Dance Recital! Brianna and Marie put on great performances with their groups. Brianna has been studying hip-hop this year, and Marie has been studying acro. I’m very proud of both of them for sticking to the classes and rehearsals, getting up on stage in front of that audience, and doing so excellently. I might be a bit biased, but I think they were the best ones up there! And as a special treat, Caron and her sister-in-law Meg performed too, with their adult tap class! What a great show – I couldn’t be prouder of them too!
Today was also a somber reminder, as Amber should have been up there too for her ballet and tap numbers. But she had a good time, sitting with me in the audience. And a special thank you to the Luis Pabon Dance Arts Center, because at the end, Amber got to go up on stage and be part of the final bow, with all of the dancers and instructors. We appreciate all the support we’ve received from LPDAC over the past couple months too – thank you so much.
Amber says she wants to get back up there on stage next year – so let’s keep that motivation going and get her there!
Day 68, Memorial Day
A quiet holiday, recovering from the activity of yesterday. The weather cleared enough for the family to get out on the back deck to grill some hotdogs and hamburgers, and light off the fire pit for a while. It was a good day.
Today we remember those who made the ultimate sacrifice for the freedoms we enjoy. Our prayers of thanks go to them today.
Day 69, Until Next Time – Or Until We Have Something Interesting to Say
I guess it’s safe to say that our family is in our “New Normal”. Amber is thriving and healing everyday. She is as determined as ever to get back to her normal, although it may be a slightly different version in some regards, for now. So rather than bore you with our “new normal” tidbits of our family life, every day, we would rather write when something major has/is/will be happening. Be sure though, Matt and I are not ending this blog — we’ll just be posting less often than the daily routine we’ve been maintaining.
If you want to continue following us, you may want to check out the “Follow” button (you should see it in the bottom right corner of this page) where you can enter your email address to automatically get an email when we post, instead of having to check in everyday.
We thank everyone who has taken the time to follow Amber during her journey — during the ups, the downs, and the in between. God has sent Amber on a journey and she is on the right path to finding her way, whatever way that may be. Matt, Marie, Brianna, Ryan, and I are going to make sure that we continue to walk her path, her way, with her as best as we can. Family and friends, that’s what’s gotten us through this — truly our saving grace in so many ways. The support has been tremendous and greatly moving. Thank You. And so we ask if you could please continue to keep Amber in your daily thoughts and prayers. Amber’s journey is far from over but the fact that we don’t really have much to write about daily anymore, I think that speaks for itself and how far she’s come!
So my friends, until next time — or at least, until the next time we have something interesting to say!
Day 74, A Stranger with the Same Fight
Tomorrow is a big day, one that Amber’s been looking forward to for quite a while — she’s having her “SS’s” removed; her “Stinkin’ Stitches”. She will also have her G-Tube replaced. And, we’ll be meeting with Dr.Martin (NeuroSurg), Dr. Gillan (Oncology) and Dakota (Nutritionist). Big day indeed, especially with our day starting with an early trip to radiation. And after tomorrow’s radiation visit, there will be “only” 18 more to go.
This past Friday we met with Michelle, Maura, and student McKenzie for OT. Right off the bat, Michelle and Maura immediately noticed how much looser Amber’s left arm and hand were. They also couldn’t believe how Amber’s hand and fingers were loose and not in a tight fist. So any talk of having her wear a splint at night was now thrown out the window! The ladies were amazed at Amber’s progress, but I wasn’t. In my heart as they were assessing Amber and commenting on her positive progress, I just wasn’t “shocked”. Yes of course it’s because Matt and I are helping Amber with some exercises, and yes it’s Amber herself working hard, but it’s more than that. It’s bigger than that. It’s all the healing prayers and healing thoughts for her.
When we got done with radiation on Friday and were walking back into the waiting area, a stranger started chatting with Amber and I. This simple pleasantry turned into something special and very generous for Amber. What this kind stranger did was something that touched my heart so deeply that I nearly lost it with a flood of tears.
What posses a complete stranger to do something spontaneous from the heart that is so sincere, guileless and unselfish? A bond. It was an instant unlikely bond between him and Amber; an older man that has lived almost all of his life and an innocent little girl that is just starting hers, yet both possibly doomed by the same uncompromising disease. A special bond that only a certain few share. Amber didn’t see it but I did; a brief moment in time where both beautiful and sad collided.
To that kind stranger that is now a forever friend, thank you. Thank you for changing my life in more ways than you know.
Day 75, No More Stinkin’ Stitches
Wow, what a busy day today!
We were out the door by 7:20 this morning, for a 7:45 radiation treatment. Only 18 treatments left to go! It’s funny – as horrific as it is to have my 6-year old go through radiation treatments, the team at Backus is so nice, so good to Amber, so good to us, that it doesn’t feel as bad as it should. I guess that’s a good thing – it’s just the dichotomy that strikes me so much.
Then off to Children’s Medical Center in Hartford for a 10:30 check-in. By noon, Amber had her new g-tube in place, and had a couple dozen stiches removed from her scalp. All those Stinkin’ Stiches, as she liked to call them, are gone – and she is healing up really well. Again, the contrast between the very visible healing of her scalp and the unknown of what the GBM may be doing inside her her head strikes me deeply.
And then, after sleeping off the sedation for almost 2 hours, we headed upstairs for a combo visit with Oncology and Nutrition. Amber’s weight is doing very well, so we are starting to cut down the supplemental overnight feed. Even after the sedation and procedure, Amber was asking for a snack, so there are definitely no appetite challenges there! And no changes with Oncology, continuing the course with radiation until the end of June.
So we continue with this new status quo, each step showing positive progress, taking progressive bites of the whale (with much of the elephant carcass now behind us), but knowing that we are far from out of the woods. We pray to be shown that path out of the woods, no matter how many twists in that path, and no matter how often we stumble.
Day 78, A Special Ending to a Long Day
Yesterday Amber had her first official Physical Therapy appointment since being in the hospital. Our new physical therapist’s name is Elyce. As soon as we walked into her therapy room, Amber got excited because there, hanging in the middle of the room, was a swing! So while I caught Elyce up on Amber’s sudden life changing situation, Amber got to swing. Afterwards, Elyce had Amber on the floor rolling to get from point A to point B, which she did but it only lasted the one time because Amber’s G-Tube button was sore. Next Elyce had Amber pulling herself up to tall kneeling and then walking on her knees. Amber fell a couple times (on a mat) but got right back up and tried again. We ended up going over our session time with Elyce which I felt bad about but also, on the other hand, selfishly, I was glad it did because it was satisfying seeing Amber working so hard with a professional (in other words, not me trying to figure out what to do!). And as an added bonus, at the end of the session, Elyce allowed us to borrow a square roller scooter to take home and practice for the week (which all of us have been thoroughly enjoying!).
Just as soon as we got home and I dropped Amber with her grandparents, I ran down to the school to help with decorating for the eighth grader’s class night. Then I ran back home to grab Amber for radiation. After radiation it was back home where both of the littlest ones went down for naps and I had just enough time do a couple things before getting Marie off the bus. Shortly after that I ran to pick Brianna up from choir, helped her with her homework, got the littlest ones up from naps and made sure Marie was ready for Class Night, where she and her classmates were going to host the eighth graders. My plan was to essentially just drop off Marie, only stopping briefly to say “Hi” and then get the rest of the kids home for dinner than bed. However, I was informed that I may want to hang around for the beginning part of the ceremony — which I am so glad we did! Little did I know that after prayers and introductions, the eighth grade class got up and announced that this years year book was dedicated to Amber! What a thoughtful and sweet gesture by the eighth grade class! Our school, like Amber, may be small but man oh man, in the same vein, like Amber, boy is it MIGHTY! A BIG Thank you to the eighth grade graduation class for the honor of dedicating your 2018 year book to Amber — that touched us immensely, and personally made my very long crazy day, much more special and worthwhile!
Day 81, Our Church Away From Church
It’s hard to believe that a month ago on May 10th, we came home from the hospital! Here it is June 10th (already) and it’s getting to the point where our 50 long days of being in the hospital are beginning to take on that foggy distant memory type of feeling, fading a little bit more with each new day.
Yesterday evening we took the family to Holy Trinity Church in Hartford for Mass. Holy Trinity is where Matt and I went weekly while Amber was in the hospital — a very much needed healing spot for the two of us to go and take a break, even if only for an hour, to be able to reflect, breathe, and refresh our souls during such a turbulent time in our lives. Holy Trinity is Father Charlie‘s church, and while Amber has met Father Charlie in the hospital, she has not seen his church, and has been asking weekly to go and visit. Father Charlie has not seen Amber out of her hospital bed, hasn’t had the opportunity to see her talking or walking, and so we have been anticipating this visit for quite some time. We were very excited to not only see Father Charlie but the parishioners as well because we knew that they have all been praying for Amber and our family.
Right before Mass, Father Charlie comes right over to see us, to see Amber, with a big hug for each of us. He cannot take his eyes off Amber and keeps remarking about her being a miracle. And then, during his sermon; talking about Veronica and Simon’s aid to Jesus as he carried the Cross, he calls across the church “Matt, Matt, would you be willing to tell us Amber’s story, at the end of Mass?”. It occurred to us that this Church, this new part of our community, has helped us carry our Cross, and has helped Amber carry hers. Of course we would share the whole story with them. And so, after Communion and before the Recessional Hymn, Father invited our whole family up to the front, and Matt had the opportunity to address the Church. He talked about a few of our personal experiences, as well as emphasizing how hard it has been to accept that, as “The Dad”, he can’t just fix this by just working harder or longer, and therefore has to put his faith in those that can fix this; in Amber’s case, it’s putting trust in the doctors, nurses, and the people around us, and having faith that God brought us to them for a reason. Matt also made a point that you just don’t know if you can lift 300 pounds until you try, and in the same way, we didn’t know the strength of our faith until this test.
After applause and some tears, we headed back down to the pews where we finished Mass. Before leaving, we had many of the parishioners come up to us with kinds words and hugs. Holy Trinity has become a part of our community, our family in support of Amber — Our Church away from Church.
And after that, we said our farewell to Father Charlie and headed out for dinner at a spot we would often hit after Church, J’s Restaurant — another thing we HAD to do now that we had Amber with us! A celebration for sure!
It is so comforting to know that we have people cheering, praying, and rallying for Amber and our family. Amber has her army behind her helping her fight this battle, and it’s her battle that will be won, on her terms, in her way.
Day 85, With A Hug + I Love You
As Amber gets stronger and improves everyday I can’t help but ponder (again) what the future holds for her.
This past month, although going great with Amber’s positive improvements with things like walking on her own and “lefty” (which is her left arm, hand, and fingers) getting stronger, I can’t help but feel sad.
About a month ago we suddenly lost our daycare provider at Saint Joseph School. A gentle soul of a woman who clearly cared for the children she was watching over. And then almost a week ago, we lost another wonderful woman whose grandchildren attend Saint Joseph School. This particular woman was diagnosed with an illness not unlike Amber’s around the same time that we found out about Amber’s. That was 3 months ago (in a few days — June 21st). The first woman was sudden, and the second, although not as “sudden”, was also too soon. I can’t help but think about Amber in all this. What does this mean for her. I’m afraid to think of what this means for Amber, given the type of cancer she has where the outlook is particularly grim. I guess it just puts life once again into perspective. Cherish it, Enjoy it . . . while we still can. Life is precious — which is making itself very clear to me, especially with the passing of these two wonderful women. I know it sounds so cliche to “live life to the fullest” but do we? With the mundane nuances of the “same old same old” day to day living, are we really living our life to the fullest? To actually remember that our life, and the lives of our loved ones around us, are not going to be here on Earth forever. To think that they actually may be gone tomorrow . . . that’s a hard concept to digest and that’s a hard concept to actually consciously think about, every . . . single . . . day . . .
Our own mortality. Wouldn’t it make life so much less complicated if we knew when our time was up? Well, for someone like Amber, with the type of cancer she has, hers might be predictable . . . but the doctors are working hard to change that, and we pray for Divine Intervention for her to be Blessed Stanley Rother’s Miracle! I am optimistic for Amber but I am also realistic . . .
If you had a hard day, or a boring day, or even a great day today, give your loved ones an extra squeeze when you are hugging them and an “I love you”, because remember, we never know when that may be our last one to give.
Day 88, Father’s Day Determination
As we have done every year for the past many years, today on Father’s Day we went for a nice nature walk. We drove up past the Comstock Covered Bridge in Colchester, CT to a secluded parking area along the Airline Trail, which is an old railroad line converted to a beautiful trail perfect for walking, running, and biking.
Knowing that Amber isn’t quite ready for such a long walk, we dug out the old jogging stroller for her, which worked out well. In total, the family walked about a mile out on the trail, and a mile back, with a stop for snacks midway. It was sunny and hot, but enough shade all along to make it a wonderful way to spend the time.
Of course, thinking back to the 50 days spent in the hospital, and what we’ve gone through over the past 3 months, I am very thankful to have my whole family with me today. But even more noteworthy for today was Amber’s determination to get out of the stroller and walk.
The trail is very well maintained, but it is still a trail. Loose dirt and gravel is not nearly as level and stable as a wooden or linoleum floor. But Amber wanted to walk, and so she did. With nothing more than holding either my hand or Caron’s hand, Amber walked about a mile of the trek, in two half-mile spurts with a break in between. Not even two months ago, Amber took her first steps after 36 days in the hospital, and was exhausted by a yard of walking. Now, she is up to a half-mile at a time! Yes, she is still working on her balance, but that too is getting better, as she walks around the house (with us hovering within inches) unassisted. This 6-year-old’s determination is impressive!
And so I pray that her determination, her motivation continues. I pray for her left leg and foot, her left arm and hand to continue to regain their strength. I pray that she be cured of the cancer, that no tumors return, that there are no other developments that threaten her longevity.
But most of all, regardless of long-term outcome, I pray that God keeps her happy — just as she was today, holding my hand as I walked alongside her; as she put the effort, the focus into her journey today, one step at a time, and I provided her whatever support she needed on her way.
Yes, today’s walk was rather symbolic for me.
Day 95, The Truth Machine
This past week has proven to be yet another new “New Normal” for the Smith household. The girls were officially done for summer two Fridays ago, and normally the schedule we once had diminishes and we have to readjust to a new summer schedule. So the same is obviously true for this year too, however, add in Amber’s many appointments and her “at home duties” to the mix and it’s just plain chaos. Thank God, literally, for grandparents because without the help of them, I would be in the loony bin. Suffice to say, we made it through the week not too bruised or battered! (it’s funny how life has a way of doing that…)
In between all the chaos of this past week, I have to say that Super Amber Grace, is walking . . . by herself mind you, all over the place, and quite well. And, when she’s been sitting and is bored with it, she gets up out of her sitting place and walks around, just because. Walks to any place she can. And when we ask her where she’s walking to she just says “just around, I gotta get my PT in”! Well alrighty then — how can we argue with that? I mean seriously!!!
At the beginning of last week, Amber and I met with an APRN named Victoria from Dr. Gillan’s Oncology group and then Dr. Martin from Neurosurgery for some routine follow ups. Everything was good. One thing that was discussed at both appointments (and then later was confirmed) was Amber’s next MRI, or as I like to call it (and I believe it was Dr. Martin way back in the beginning who called it), “The Truth Machine“, which is scheduled for Wednesday, July 25th, 2018. That’s when we learn the truth of what’s happening inside Amber’s brain.
And . . . I am scared out of my mind, but in a numb kind of way. It’s the kind of physical feeling of combining the emotional feeling of actually being scared but mixed with my mind consciously saying “it is what it is”. Kind of like that giving up feeling. Because in truth, it is what it is. Amber’s outcome is either: status quo, no regrowth or: bad, there are more tumors lurking. Of course I’ve been praying like crazy and saying the Rosary every night asking for the impossible — for Amber to be completely healed and cured of cancer . . . but, what if it was possible? That’s what Hope is, right?
Please, if you can, say an extra prayer for Amber — especially as we near July 25th. As I’ve said in the past, I truly and wholeheartedly believe in the power of prayer — it’s been made apparent to me, especially over these past 3 months. And also, please don’t get annoyed with me as we get closer to her MRI date when I keep asking, and asking, and asking, for you to say an extra prayer for Amber. My father used to tell me I was really good at nagging him when I was a kid. My husband loves to tell me that I am the best at nagging him to death to get things done around the house and geez, don’t even get me started on what my kids thing of my nagging! What can I say — it’s a gift and a curse!
Thank you 🙂
Day 99, A Bittersweet Day
Never in my life did I think that I would be in a situation where (A) I would have to bring my youngest daughter for radiation treatments because she actually has cancer and (B) I am actually sad that today is Amber’s last day of treatment. Crazy, I know. Let me explain. Cancer sucks. Radiation sucks. However, the radiation crew at Backus Hospital in Norwich, they made it not suck. In fact, the emotion that I am physically having right now is a feeling of love, happiness, and admiration for the folks in the radiation department.
From the start of this part of Amber’s journey (the radiation treatments) this department has welcomed us with open and loving arms, and took us under their wings. All throughout her 30 treatments, they have treated Amber like a family member, not “just” a patient. But their kindness did not stop at just Amber. They were so thoughtful and sweet towards Ryan, Brianna, Marie, and Matt and me. They certainly went above and beyond. And for me, personally, since I was the one that mainly brought Amber to her appointments every day since May 17th, the radiation crew made me feel “human” again. With the way these past 3 months have been, it was nice to have people (who didn’t even know me) take interest in me and my well being, making sure that I was doing okay. But not just checking in on my sanity — actually taking the time to talk with me and ask how my weekend was or how my day was going or making me laugh. I honestly did not know going into this that I would be this torn inside with my feelings and emotions on Amber’s final day today. The kindness and love from a group of individuals that did not even know us at first, but wanted to get to know us, day after day — it blossomed into an awesome friendship.
And even more, the other patients at radiation — what a beautiful group of people. Sharing in something so sad and somber with Amber but also perhaps (hopefully) having their spirits lifted when they saw her; her positive progression, her smile, and her laugh each week. I hope seeing Amber in these ways gives a sense of Hope for those that especially need it right now.
So in short (too late) — Radiation itself sucks but the people that we’ve come to know at radiation, they totally rock! A truly Bittersweet moment for sure.
So God did it again. HE made something that has been so life-changing and at some points devastating, and He turned it into something wonderful. He put us in another situation that we were meant to be in . . . brought strangers together to become lifetime friends.
Why God has put us together specifically with these lovely wonderful people from our time during radiation . . . well, I haven’t figured it out, yet. But it is certain that HIS plan for Amber (and us) continues on. God’s way is Amber’s way and we just have to be patient to see where it leads us.
P.S. On a side note, un-radiation related, as I was triple checking this post and adding/changing its content, Amber’s loose tooth came out — not by her pulling it by fingers mind you, but by way of her tongue pushing it out! This is Amber’s 1st tooth!!!!!
Day 116, The Beach, It Soothes The Soul
This past week was extra special because we took our family on vacation. The whole family; the six of us, together. It was a vacation that has been planned since the beginning of February. A vacation that very well should have been canceled given the tumultuous months following that booking. Fortunately for us though, it was a vacation that was just meant to be — Amber is with us and is doing well AND it happened to be scheduled just right too, in between radiation and her next MRI. It was the vacation that was just meant to be.
This year’s summer family vacation was to Ogunquit, ME. A very quaint, small town bustling with all sorts of things to do: beaches, shopping, restaurants, antiquing, hiking a mountain, a theater with Broadway musicals, art galleries, trolleys, etc. This was the first time taking our family there as a whole. Ogunquit has always held a very special place in my heart and it was time to share that with my own family.
We found ourselves at the beach a few times throughout our vacation and I can say for sure that it certainly helps soothe the soul. The warm white sand beneath our toes, the ocean breeze, the ebb and flow of the waves . . . the children’s laughter, the scent of sunscreen in the air, the seagulls cawing — these wonderful things combined with our family getting to experience them together, that was soul soothing. And when it was evening and we got to witness the sun going down and casting a beautiful golden hue reflecting off the ocean and the beach, that too was soul soothing. A naturally gorgeous gift from God himself to help remind us just how precious and magnificent life can be. Thank you for that God and thank you for having Amber be apart of this year’s summer family vacation.
Now we are looking ahead to the next significant thing, which is Amber’s MRI. Her MRI is scheduled for Wednesday, July 25th, around 10AM. This is our next big step in discovering what our plan of action is. So now we pray, and we pray hard. We ask that if you wouldn’t mind saying extra prayers for Amber near/on Wednesday, July 25th, that would be greatly appreciated! Also, if anyone is interested, our friends have set up another Holy Hour for Amber’s approaching MRI. It is scheduled for this Friday, July 20th, from 7-8PM at our Church, St. Mary’s Church in Baltic.
Thank you again for everything — your positive thoughts and prayers have had such a positive impact on her, and on us!
Day 123, Amber’s Way Around
Matt and I want to thank everyone who took the time out of their busy Friday evening schedules to come and support Amber (and us) at the Holy Hour. Thank You!!!!
Amber is finding her way around all kinds of places this summer! I’d like to share some with you —
Amber’s Physical Therapist Elyce got in contact with a man named Frank from an organization called “Save The Kid” where they donate specially designed bikes to kids with special needs. So, lo and behold, Frank stopped by with a bike for Amber! He also gave us a special hand strap for “Lefty” so that it stays in place when she’s riding.
Salty The Unicorn!
Amber’s Occupational Therapist Michelle recommended a place in Windham, CT called Indian Hollow Stables, where there is an actual unicorn! She thought it might be something Amber would be interested in — which she totally was!
Stars & Stripes Kid!
Another super cool thing that happened in June is that Amber had the opportunity to be a Stars And Stripes Kid at the Connecticut Tigers Game! GO TIGERS!!!!
Amber The Mermaid!
Amber loves mermaids…like a lot. So, why not have her become one? Check this amazing bathing suit out! She can’t necessarily swim with the bottom part yet but she will soon enough.
Today is Sunday and in 3 days is Amber’s MRI. I can’t believe it’s here already but I definitely want it to just come so we can get it over with and move on — whatever that means.
Her MRI is now a bit later than first anticipated so I’m thinking it’s going to be around 11 AM instead of 10 AM on Wednesday. Regardless, we meet with Dr. Gillan, Dr. Martin, and Dr. Bertsch at 2:30 PM with the results.
Please pray for Amber. Please pray for a clean and healthy brain. Maybe even go a bit further and pray that she is miraculously cured and healed . . . I know I do.
Thank you ❤
Day 126, It’s a High Five Kind of Day!
Good News – Amber’s MRI scan came back looking good!
It was a pretty long day, with us leaving the house around 8:00 and getting back home about 5:00. We started with an early visit with Dr. Gillan in the Hem/Onc clinic, then went downstairs for the MRI, and returned to Hem/Onc to get the results.
The scan came back looking good – there are no signs of any regrowth, at all!! This isn’t just “good” – this is as good as it could have possibly been. As Dr Martin said to us today: there are times when we need to have detailed, serious conversations, but then there are days like today – today is a High Five Kind of Day!
We have used several metaphors and analogies over the past 4 months — Eating the Elephant and the Whale, a Superhero Battle, a Journey of Many Steps . Well, today we took a megasize bite of the Whale, won a significant battle against a Supervillain, and passed an important milemarker in our Journey.
But we are not done with this. Cancer is not so easy. A clean scan today does not mean she is cured — it just means that it isn’t aggressively attacking at this moment, but could be still hiding somewhere in that brain. We will be returning for MRIs frequently (every 6 weeks, for now) to watch carefully, and with the help of CCMC we will be ready to act when we need to. We still have a lot of Whale left on our plate, several Supervillains in this war, and much distance left of this Journey.
But today – we celebrate. We thank the doctors and all medical professionals that have helped get us this far. We thank everyone who has been praying, sending us positive thoughts, and supporting us through this. We offer a prayer of thanks to God for granting us such a blessing today. And we continue to pray, and ask others to pray, for Amber’s positive results to continue into the future – until we have devoured the Whale, finished off the final Supervillain in this war, and reached the point of this crazy Journey where all we see is smooth sailing ahead.
Thank you all, God Bless.
Day 130, Turns Out, This Week Was Pretty Awesome!
How life can take us by surprise sometimes . . . But good surprises this time.
We found Amber’s MRI this past Wednesday surprising in that she had nothing “new” going on. She has Glioblastoma Multiforme which is an aggressive type of cancer, surely something should have shown up on this MRI, right? There may still be something sinister going on that the MRI didn’t pick up, but even knowing that, I can easily say that I wasn’t the only one thrown off by Wednesday’s findings (or lack of). Therefore, we offer to God, family (past and present), and friends, a big THANK YOU – Matt and I are truly humbled by your outpouring of prayers and good positive thoughts for Amber. Along with the tremendous medical care Amber has been receiving, the prayers and thoughts clearly have had an impact, and so we celebrate these results.
Then came Friday, and another awesome surprise. Amber’s wish from Make-A-Wish has been granted. Did I say “wish”? I should have said wishes because not only is Amber going to be swimming with dolphins, she is going to be swimming with dolphins in Hawaii. And yes, I am still picking my jaw up off the floor.
Make-A-Wish is absolutely phenomenal. They wanted a special way to reveal Amber’s granted wishes. So, they had The Bridge Market Mobile Pizza Trailer come to our home to make fresh brick oven pizzas for us – cheese, pepperoni, veggie, and an incredible maple-bacon pizza. Then there was the first dessert – Ben & Jerry’s came and set up a sundae station inside our house. The sundae station had 4 types of ice cream, with Hot Fudge, Caramel, and Whipped Cream. Then there were the toppings: Mini M&M’s, Reeses Pieces, Oreos, Chocolate and Rainbow Sprinkles! And THEN, there was the second dessert. A gorgeous mermaid cake and cupcakes. Make-A-Wish certainly knew how to spoil us!!! How can a simple “Thank You” even suffice? . . .
Day 145, A Twist of Fate
Sunday, August 14th, 2016
It was 2 years ago, on this very day where Matt, the kiddos and I were celebrating our “biggest and grandest” summer family vacation yet — our first official trip to Walt Disney World with all 4 children! No cares in the world and the only thing we had to worry about is, what should we do next? And on this particular day, Sunday, August 14th 2016, was our extra special day because it was our Magic Kingdom Day. Extra special because before we could make our grand entrance to said Magic Kingdom, we had to prepare ourselves (and by ourselves I mean the children) appropriately. So, earlier that morning, we had all three of the ladies get all dolled up at The Bibbidi Bobbidi Boutique. The pampering and primping took three already beautiful girls and transformed them into three beautiful princesses! And what of Ryan you ask? Don’t you worry — I had him covered. He was transformed into Prince Ryan! Now we were ready for our official magical day to Magic Kingdom. And Magic it was . . . at first . . .
After meeting Ariel, Belle, and Cinderella, it was time to have an actual proper royal lunch at Cinderella’s Royal Table where we would not only dine on delicious fancy foods but where we also got to meet so many other wonderful princesses. Towards the end of our royal lunch, Matt received a phone call and excused himself while the rest of us finished our delectable desserts. Unbeknownst to me, it was during this particular time frame that our magical world would burst.
2 Years ago on this day, Sunday August 14th, Matt’s younger brother passed away unexpectedly. It was devastating and it was gut wrenching. When Matt pulled me aside, outside, after our special lunch to tell me the news, it felt as if someone poured ice water over my body. It made me numb. Still to this day it almost seems insanely comical that his passing happened on the same exact day where our family was celebrating in a place that is known as “The Happiest Place on Earth” — this happiest place on earth with all four of our children, surrounded by a glorious day of sunshine, laughter, and magic — now turned to darkness, crying, and sadness. It only takes seconds for a perfect situation to turn devastatingly awful.
Fast forward almost 2 years later . . .
On March 22, 2018 Amber had emergency brain surgery because of a previously unknown tumor that burst. I was too shocked to register anything at that time and knew I had to keep moving forward, for Amber’s sake. Then, 4 days later, when Dr. Martin told us the results of the pathology report: Glioblasoma Multiforme, Grade 4 cancer; I physically felt (again) that same ice water being poured over my head and body, that same icey-numb feeling I felt when Matt told me about his brother . . . and if that wasn’t a punch in the gut enough, hours later, Amber would be having her second brain surgery. For a family that has NEVER had as much as a broken anything — here is our youngest daughter having her SECOND brain surgery. Our family’s lives have changed dramatically forever; our youngest daughter recovering from not only a left side weakness due to the massive stroke from the tumor but also, and worst of all, she is now a child with a life-threatening disease. A terrible and devastating situation. However, for devastating situations there are glimpses of hope and happiness. For Matt and I, we found our deeper Faith. We also found a community of family, friends, strangers that went out of their way to help us, support us, pray for us, and encourage us when Matt and I were in our darkest place. Now fast forward to today . . .
Tuesday, August 14th, 2018
And here is the Twist Of Fate. Two years ago it went from a magical perfect day to misery and grief. Today however, Amber’s devastating situation brings us to paradise — O’ahu, Hawai’i (thanks to Make-a-Wish) and coincidentally enough, back to Disney. Although Amber’s future is unknown to us, what we do know is that God has her here, with us, TODAY. And today, we happen to be in a place that seems to be as close as we can get to Heaven on Earth; golden sun, sea breeze with swaying palm trees, tropical plants and sweet-smelling flowers, white sandy beaches with the most beautiful turquoise ocean waters you have ever seen . . . and the smell of the island, oh — perfection! Sweet and exquisite!
And even though right now we live with the shadow of concerns over Amber’s future health, what is very clear to us is that all of this is in God’s hands, it always has been. Nothing is perfect in this life; not a big trip to Disney World with all the frills and not one’s health. And although those things may seem meaningful and seem like everything at the moment, they are only bonuses. The real meaning is how you choose to live this life at every moment with the people you love.
Matt’s brother’s passing was dark on a bright sunny day. Amber’s health, although dark in the beginning seems pretty bright; pretty hopeful — especially with that golden Hawaiian sun shining down upon her. God’s sun.
Day 158, Wishes Do Come True
Warning — The blog post you are about to read is long. Like, really long. But how does one write a short blog post when so much cool stuff happened to us on our big trip? Of course I have to include all the details so that readers like you can live vicariously through us! So grab a comfy seat, perhaps a snack and drink, and enjoy!
The Make-A-Wish Foundation is an organization that grants “wishes” to children with life-threatening medical conditions. We have known about this organization prior to Amber because we have some family members that have had wishes granted. However, when I first heard that Make-A-Wish wanted to meet Amber and get to know her, I cringed. Thoughts like ‘I can’t believe this is so serious that Make-A-Wish is contacting us…’ and the ‘never thought it would happen to us’ went through my mind, and still does. The initial shock that, here we are, Matt and I, at this point in our lives where we are dealing with a child that is seriously sick is hard to swallow (still). But they really wanted to work with Amber and grant her wish(es). And we’re so glad they did.
Make-A-Wish is an absolute superb foundation. Hands Down. What I am about to share with you will have you understand why.
Friday, August 10th, 2018 had us start off very very early by serenading our oldest daughter Marie with a “Happy Birthday” song, as she was turning 12 this very day. Later on we had our “ride” come pick us up to bring us to Logan Airport in Boston. Our ride turned out to be a beautiful black stretch limo! So big in fact that we told him to stay down by the road because our driveway would be too hard to maneuver with it being long and curvy. Amber needed no help as she climbed into the limo, beaming ear-to-ear!
After drop off at the airport, with our Make-A-Wish shirts on, we had some assistance from the JetBlue personnel helping us navigate through the security checkpoints and showing us to our specific gate where we waited for our plane. Now, this is all four of our children’s first time at an airport and first time flying. It could have gone really really bad. But in fact, it went amazingly! They seemed like old pros! In fact, they did much better with all the travel (twelve hours in the air in each direction!) than most frequent fliers I know!
As we are on our descent into Honolulu, with the sunset casting its last shades of yellows and oranges, I started rousing Amber and Ryan as they have both fallen asleep on me. We gathered our goodies that were given to us special by the flight attendant because of our reason for being there that day as well as him getting to know Amber, and we head off the plane. As we were leaving, the pilot comes out to say hello and give the kids “official” passport books and their very own wings. As we were heading to our gate, Matt and a man he befriended on the plane, Officer Jones, were chatting and he tells us about how he’s been serving our Country and that he is coming home to O’ahu to see his baby girl and wife. He says he loves the Make-A-Wish Foundation and asks to take a picture with us.
After we were done taking the picture, the flight attendants from our flight pass by and come over for a “GROUP HUG”!!! We all get in there for big hugs — and why not? We are all happy and in good spirits, how could you not be being in Hawai’i? After officially getting our leis, we are whisked away to a van that is waiting to bring us to our hotel. It takes only about 40 minutes from the airport. I am surprised that everyone actually stays awake – because while it may be only 8PM in Hawai’i, our bodies think it is 2AM CT time. It’s either the good naps most had or just the sheer excitement of us being in Hawai’i and anticipation of getting to our resort, Disney’s Aulani.
We arrive at Aulani and are greeted with more leis and really cool Menehune necklaces for the kids. Legend has it that the Menehune are little mythical pranksters in Hawai’i but if you are wearing the necklace they will consider a you “foa” (friend) and not trick you. Ryan took this very seriously the whole week we were there! We are then brought up to our room. The room is spacious and beautiful. It has a kitchen with a full fridge, microwave, dishwasher, glassware, plates and utensils. A living room with a sofa that pulled out, a chair that pulled out, and a lanai. 2 bedrooms: the first having 2 queens with it’s own bathroom and lanai, and the second being the master with a spacious bathroom with a jetted tub and walk in shower (with 2 shower heads!) and of course, our own private lanai.
In addition to all this, there was also a 1/2 bath and a washer and dryer! Our lanais were perfect for seeing the picturesque ocean as well as Luaus! The Luaus were held right below us on the green.
Disney’s Aulani Resort was themed like I would expect Hawai’i to be –
very ornate, with lots of wooden/natural decor as well as beautifully hand painted Hawaiian wall murals that locals painted. The landscape was lush with tropical flowering plants and bushes, palm trees, koi ponds, and lit tiki torches at night. The resort had an abundance of pools, infinity pools, hot tubs, a lazy man river, water slides, and my favorite, access to the beautiful beach and Pacific Ocean.
It was hard to break away from the resort but sometimes we did. On our first full day there we spent a good amount of time down at the beach and then some water park time. After a while, it was time to leave for church.
We hired a driver and he took us to Saint Jude Church in Kapolei. Saint Jude? Really? Talk about things that sometimes just make you go “Hmm”. Very fitting I would say! A very welcoming and friendly church and church community.
The next day (Sunday) was set up for us to visit a place called Sea Life Park. The drive was about an hour but totally worth it. The scenes that passed before my eyes were wonderful. Greenery, mountains, tropical plants and bushes, and of course the gorgeous coast line. I am very thankful for that long car ride because we got to see quite a bit of the the island of O’ahu, even passing the famous Sandy Beach, with all the surfers in the water. Not sure if kids were too thrilled because the two oldest fell asleep! But Amber was glued to the window watching the scenery the whole way.
Sea Life Park is awesome! There was so much to do! We got to experience seeing ocean and animal life native to that part of the world. Sting rays, sharks, fish, dolphins, sea lions, penguins (yes, we saw penguins in Hawai’i!) and birds. The aviary was the coolest and a favorite among Brianna and Marie. Inside the aviary, you got to pick up a popsicle stick with bird seed on it and feed the birds. We were in luck too, because sometimes, the birds would land on your stick so you could observe them up close and personal!
And, what’s even more lucky, is when the birds actually land on you like they did to both Brianna and Matt! So cool! As we were walking along and checking everything out you just had to stop and take in the views and the scenes because they were breathtaking. After an awesome dolphin show it was time for Amber and I to get into our bathing suits and go to the Dolphin Encounter, which was set up for us by Make-A-Wish.
If you ask Amber what was one of her favorite parts about this vacation, she will tell you it was meeting the dolphin! It was the coolest thing ever! We got to pet, feed, kiss, get splashed by, and dance with a dolphin named Eanka!
Later on in the week, Make-A-Wish set up a program for the children to attend called “Fish are Friends” where they got to make special fish food, feed the fish around the resort, and learn all about the native fish. The kids enjoyed making fish food and feeding the fish – but we had to chuckle when they told us it was too “educational” to do on vacation!!!
Throughout our vacation we had the opportunity to meet some Disney characters. Amber was really looking forward to meeting Moana, which we did, and Ryan was really looking forward to meeting Pluto, which he did! The kids also got to meet Mickey, Minnie, and Goofy.
One of the things that I was most looking forward to was being able to witness, first hand, a Hawaiian sunset. I have always heard about them but didn’t think I would ever have the chance to see one. Now Matt can tell you that my thing is sunsets and sunrises. There is just something so special, and so glorious about them. The way the colors explode and cascade and melt together, it is truly a gift from God for us to witness. However, up until this point, I hadn’t experienced that yet. And my evenings were coming to an end. I caught some sunsets over the first few days, and they were pretty, but . . . it wasn’t thee Hawaiian sunset I had envisioned in my mind. Okay, so it’s very possible that my expectations were either too high or maybe I was just in the wrong spot at the right time. And luckily for me, it was the latter.
After a day of water park activities in mostly cloudy weather, my expectations for catching a sunset this night was really low. It was my last potential night because tomorrow night, our last night, we had a Luau planned for the kids. So this night was my only opportunity.
At around 6PM that evening we took the kids down to the beach for some pictures. I wanted to get pictures of a beautiful-magical Mer-Fairy named Amber Grace (another wish she had) and her beautiful-magical sisters. As I was getting some shots, the clouds had parted away to let a bit of the sunset shine through. When we finished up, I felt a pang of let down. Again, the sunset was pretty but not what I was hoping. Matt suggested I walk down the opposite side of the beach to an area that had a curve around it with a hill and jutted out point — and boy am I glad! As I started walking down the beach towards the point, I had to stop, stare, and pull my camera out because it was so beautiful! I grabbed Ryan’s hand and we started walking further down and up the hill, even closer to the point and every so often I had to just stop, because literally, the words “WOW” came out of my mouth. THIS is what I wanted, this is what I had envisioned — NO —
actually it was so much more than what I had envisioned . . . it was breathtaking and it was immaculate and it was glorious. To the point where once Ryan and I were at the top of the point watching this magnificent cascade of colors in front of us, I had to say a prayer to God. I had to thank him for everything; for this moment, for us being here in Hawai’i, for Amber being alive today and here today with us; for Amber’s health and that if somehow she could be miraculously healed and cured of cancer; and for my children and for my husband, and for all of the people on my prayer list that are in need of something right now. Thank you God for allowing me to witness such spectacular beauty.
Towards the last day of our vacation, we found ourselves, once again, hooked up by Make-A-Wish with our own personal Meet and Greet with none other than Mickey Mouse himself!
We got to hang out (just us!) and get lots and lots of pictures with Mickey! Later on that evening, Matt and I took the kids to that infamous Luau we kept seeing from way up on our lanai. We totally had to check it out! I am so glad we did. It was so much fun! They had traditional Hawaiian fare as well as a show. The Hula dancers and story tellers did an amazing job of mesmerizing us with the music, songs, and stories of the Hawaiian people. In the story they tell of the history of Hawai’i as well as what a deep impact our “ohana” (family) has in our lives and that Aloha does not only mean Hello and Goodbye but also the love that we hold inside of our hearts. And that is what we experienced this week in O’ahu, Hawai’i. The love that we hold in our hearts, especially when it comes to our family. And by the end of the night, Ryan was asleep in Matt’s lap, and Amber enjoying the show in my lap. It was a beautiful way to end our trip, with our ohana.
Make-A-Wish made a life-time of memories with this extraordinary trip to Hawai’i. We are so blessed and so extremely grateful for their generosity.
And now…it is back to reality. And reality being — SCHOOL STARTS TOMORROW!!! School starts tomorrow for everyone. I am so happy to announce that Amber will be going back to her school tomorrow, at Saint Joseph School! And also, because I said everyone, I also mean Ryan too. And as I am typing this, I am trying not to cry because my baby, Ryan, is actually starting Pre-K tomorrow. When did my baby get big enough to go to school? This is crazy right? Geesh!
Also, if you could please send positive thoughts and say extra prayers for Amber, her next MRI is scheduled for Friday, September 7th, 2018.
And lastly — a BIG ALOHA from our family to yours!!!
Did you really just read it all? The whole post? Congratulations!!! It must be what, like 2 hours later?
We so appreciate all of you that have taken the time to read about Amber’s journey, and spent the energy to send prayers, thoughts, and well-wishes for her and for us. Thank you 😉
Day 165, The Proof Is In The Prayer
Sometimes the thought of why we pray comes across my mind. For me, praying is the natural thing to do when something is heavy on my heart or I want to give thanks to God. In praying I find there is Hope. Hope, when all else feels lost. Prayer for me is a direct connection with God, and it fills my soul with a sense of comfort and encouragement.
I know that Amber is a strong, determined, feisty girl. I know how strong she is, I’ve seen her, (and still do see her), in action. However, I truly believe in my soul and in my heart that Amber’s strength and determination is nudged by all the prayers being said for her. I genuinely believe in prayer. The proof? Aside from the obvious — she is here with us, on Earth, after such a devastating start to this journey — but the fact that she went back to her own school this past Monday. Saint Joseph School. More proof? The fact that she walked into her school, and talked with her friends, and did her class assignments. That my friends, is a miracle — all due to hard-work, determination, and . . . prayer.
5 months ago, when this all first happened, I never would have thought I would be writing a post about Amber going back to school. At that time unfortunately, my thoughts were very grim.
But this Supergirl has made exceptional strides — leaps and bounds! Of course, she still has a bumpy road ahead. Regaining the parts of herself that are still weak and worse, continuing to fight the cancer within. However, with her continued perseverance she will succeed. Prayers have gotten us through the darkest of times and the happiest of times. And sometimes there will be situations where we will pray with a little more angst and passion. We have one of those coming up. This coming Friday, September 7th, is Amber’s next MRI. It is unfortunate that with Amber’s type of cancer there will always be the on-going threat of recurrence. I pray, and I ask you to pray, that this cancer stays away, that it continues to be in remission. So I ask of you, my friends and family, to please pray hard for Amber this upcoming Friday.
There is a Holy Hour for her on Wednesday, September 5th at 7PM. Due to another heat-wave, the Holy Hour will be in held in the Chapel (where it is air-conditioned). The Chapel is located in between St. Mary’s Church and The Academy of The Holy Family.
Day 170, Lost a Battle but the War isn’t Over …
The MRI results today did show “recurrence” – some regrowth of the tumor.
Of course, this isn’t the news we’ve been hoping and praying for. At the same time, though, this doesn’t mean we’ve lost the war. The regrowth is fairly small, and we know where it is and what we are dealing with. Over the next week, we’ll review options (some of which are already in motion), make decisions, and move forward with treatment. When I think back almost 6 months to the beginning of this journey, we are in a much better position now than then.
We have been preparing ourselves for this possibility. But it still hurts, a lot. This is not what any of us wanted. As her father, I just want to take this from her – my six year old daughter should not have to go through this. But, we also haven’t been fooling ourselves, we knew that recurrence was likely, this type of cancer (GBM) doesn’t go down without a fight. We are prepared for ongoing battle.
The next step is another MRI, looking at the spine to make sure this thing hasn’t spread. This hasn’t been scheduled yet, but should be early next week. This will help determine which of the potential next steps we are going to pursue.
I am so appreciative for Dr. Gillan and Dr. Martin (and all the innumerable staff that we’ve met at CCMC). They are very direct, yet sympathetic. They understand what kind of detail we need to hear, and how to convey it so we can understand it. They care about Amber, and about us. We know that we were brought to them for a reason, and that they are fighting this battle with us.
And we continue to be amazed at The Good that has come from this journey, in the community that has formed around Amber and the impact we have been told she has had on others.
And so we continue to pray, and ask for prayers for Amber and the medical professionals helping her. We continue to work with Amber on her physical recovery from the stroke (her progress continues to be incredible), and continue to attack this cancer with everything we have. And we’ll just keep moving forward, one step at a time.
Day 175, Next Step
Tomorrow evening Amber goes into the “Truth Machine” (MRI) again. Following the discovery of some tumor regrowth this past Friday, we now are going to check if there has been any spread – with a focus on her spine. Spreading to her spine would be a particularly bad development, so we are praying that this comes back clean.
Caron and I also want to thank everyone that has been part of this with us. While we rarely have the oppportunity to respond to them all, we do read every comment left for us on this blog, sent via Facebook, email, voicemail, text message, postal mail, and other messages, and we so appreciate the Masses and Holy Hours for Amber – the support means so much to us.
Thank you all, so much – while this has been a difficult time for Amber and the whole family, we do feel blessed to have such a community around us.
Day 176, Waiting …
Amber is getting her spinal MRI right now. She went in about 6:00 PM, and it will take roughly two hours. It looks like we will have to wait until tomorrow to learn the results, so please don’t worry if you don’t see us post about it tonight – but we will post as soon as we learn them.
Update – Amber is out of the MRI! But, no results tonight – we will post as soon as we hear, hopefully tomorrow.
Day 177, Good news!
The MRI of Amber’s spine came back clean! This is very good news!
We still have to go after that one tumor that was found last week, but for now, we wait. The MRIs and other results have already been sent out to a few places, and hopefully we hear back next week about which next steps may be appropriate based on these results. Then, we choose which we are going to pursue.
Some big decisions ahead.
Thank you to all that have been praying and thinking about Amber, and our whole family. Now, I ask if you could please pray that Caron and I be granted the clarity to make the right decisions for Amber.
Day 180, Superheroes Pay It Forward
I wish I could say that I came up with the concept but I did not. All credit goes to Amber’s teacher, Ms. Masucci, and administrative assistant, Mrs. O’Neil, at Saint Joseph School. They are selling t-shirts they designed to support the Connecticut Children’s Medical Center (CCMC), as a way to “pay it forward” for the incredible care they provided to our Supergirl Amber Grace. All proceeds will go to the Center for Cancer & Blood Disorders at CCMC, to help further their research toward finding a cure and continue their fantastic care so that Superkids like Amber can have a healthy future.
If you are interested, you can order the shirts on the donation site.
Orders are due by October 4th (which is coincidentally Amber’s 7th Birthday).
Thank you so much to Ms. Masucci and Mrs. O’Neil for taking on this initiative on behalf of Amber.
Day 188, A Rainy Day in NYC
Amber, Caron, and I jumped on a train into NYC this morning, to go visit Memorial Sloan Kettering and make a decision about the trial we are going to pursue. It was a gray, rainy day, kind of fitting our mood. It’s funny how Caron and I flip back and forth in our moods – sometimes sad or angry that Amber is in this situation, sometimes inspired by Amber’s determination and the support everyone is giving us, sometimes hopeful that there is a path forward and God is leading us in the right direction. And that whole emotional roller coaster repeats roughly every 5 minutes of every hour of every day.
Much work has gone into this visit with MSK already, with CCMC working with multiple hospitals to determine what trials Amber is eligible for, ultimately identifying a few at MSK that have the greatest potential. So today, we met with Dr. Kramer again, and then met with the geneticist. For now, we are pursuing two paths: genetic testing to determine if there is an underlying “predisposition” (a root cause) to attack, and a trial of a drug named “pembrolizumab“. While the doctors did a great job of explaining terminology while still going into depth, for sake of this blog post it boils down to this drug helping the immune system get past the defenses of the tumor and attack it.
So, next week (hopefully – schedule TBD) we return to MSK for an MRI, X-ray, and to begin the infusions. The infusion takes about 30 minutes, and then we return every 3 weeks for another infusion and an MRI on alternating visits, possibly for the next 2 years.
If this drug does not appear to be helping and the tumor continues to grow, our current “fallback” plan is to leave the trial and go in and surgically remove the tumor. But given the risk of brain surgery, even in Dr. Martin’s skilled hands, we are going to pursue this trial first.
And we will keep investigating other trials, treatments, options, trying to make the best decisions we can as we go. Please pray that we find the best options and make the best decisions along the way.
Day 191, Big Hope in the Big Apple (and some Big Sadness too)
Amber’s Way continues on, with all fingers pointing towards the West to NYC as we get ready to embark on her next step in fighting this cancer. Amber has an early morning set up with MSK on Monday to first take an X-Ray of her port, then a Brain and Spinal MRI. Then on Tuesday, she has her first infusion of the drug pembrolizumab. We are not sure of the time yet as we have to wait until Monday afternoon for MSK to give us a call when they have a bed available for her on Tuesday. Initially I was very upset when finding out that we have to go back into NYC for not just one day, but two. Still trying to get the dampness and exhaustion from Tuesday’s trip out of my bones. However, for Amber’s sake, we are trying to make the best out of this situation and decided (partly for our own sanity and energy) to spend a couple nights in a hotel (thank goodness for Matt’s hotel points!) and try to see some sights in our down-time. Of course I’m still freaking out a bit because of her missing school, and us not being home on school nights with after school activities with the other kiddos. Thank God for grandparents though!
Matt and I pray that we are going the correct way with all of this. We pray that God’s plan is this one, and that he is gently nudging us towards where we are supposed to be going. Amber’s Way is God’s Way and we pray for Big Hope in the Big Apple.
Matt and I have often written our posts in detail about our Hope and Faith, and other positive things we try to draw from all of this. But we also feel immense sadness. We want to share some of that sadness, in very raw truthful detail below. We know that many are going through this with us, or experiencing this (or something similar) in your own lives and families, and can empathize with the same deep sadness. This is the emotional highs and lows, spiritually and physically, of an incurable disease that a loved one is battling.
I know Matt posted a few days ago about our feelings, but I can’t reiterate it enough. Sometimes, the sadness is all-consuming. It’s been very emotional and trying on Matt and me. We honestly struggle every day. It hurts us so deep for our youngest daughter to have to go through something like this . . . for any child to have to go through something like this. For Amber though, she is the coolest of cool. This spunky girl is so laid back and nonchalant about everything it makes me wonder if she honestly understands the severity of what is going on in that little noggin of hers. And truth be told, yes — yes she does understand it, almost completely, at a six-year old’s level. When we ask her, she tells us she knows she has cancer, and that she has a tumor regrowing inside her brain. She tells us how we are going to be making lots of trips to New York to go get medicine to (hopefully) make the tumor go away. She ‘gets it’ all too well with a mature understanding that is quite remarkable for a (just about) 7 year old. She gets it all, almost.
One thing that I don’t think she quite grasps OR RATHER, perhaps I am too scared to even ask her, is if she knows that her cancer is deadly. Ugh, even just writing that word makes my eyes swell with tears. We’ve talked about death in our house at times, especially when loved ones pass away, which unfortunately for us, is all too recent with the passing of my cousin this past December and the passing of Matt’s younger brother two years ago. That was tough on the older kids especially, but also understandable for them in the grand scheme of things; there’s life, and then there’s death. But to have to talk and speak freely about the fact that, according to the research and statistics, Amber is probably going to
. . .(not survive). How do we do that? We’ve talked about it with the older girls (which I’m not sure they even get the magnitude of (yet)) but how does one have THAT conversation with the sick child that is so innocent and young in all of this? How? A beautiful little girl who is not so little anymore, growing up before our eyes, even with this behind-the-scenes horribleness growing inside of her. Amber’s at a point in her life now where the years are more meaningful because they are the youthful years that will stand out and will be remembered. Great, wonderful, and fun moments and experiences of her life that she will hold in her memory and heart for years to come. But How? How to tell her that she’s probably not going to make it past a few more years? Or that she’ll probably never experience high school or college? How? How do we tell her that she’s probably not going to fall in love, and get married, and have her own babies to take care of and love? How do we tell her this? . . . How?
I’m not actually looking for anyone to give me answers, because I know when the time comes, Matt and I will figure out what to do. Really, I’m just venting. I’m stomping my feet, screaming loudly, and beating my fists against my sides having a grown-up tantrum about why life is so unfair.
Cancer and Death. That should NEVER EVER have to come up in a conversation with a beautiful innocent child. The thing that hurts the most is simply knowing all of the good, the beauty, the glory of what Life is — especially with these upcoming milestone years — that she is probably never going to get to experience any of it. She’s being short-changed a potentially amazing life, and that sucks, big time.
Day 193, Superheroes Pay It Forward, And Then Some!
Superheroes pay it forward . . . and then some . . .
On behalf of Miss Masucci, Mrs. O’Neil, Amber, and myself, THANK YOU. Because of your extreme generosity — out of the 50 shirts that we were hoping to sell, we sold 74! And not only did we sell more shirts than we were hoping, but that mixed with the generous donations we’ve received, we’ve exceeded our initial expectation! Because of you, we are up to $1040 — and all before our end date of October 4th!!! How helpful for Connecticut Children’s Medical Center’s Cancer Unit!!! WOW!!!!
If you would like to purchase a shirt or make a donation, there’s still time! Please go to the donation page.
Day 195, Round 1
Just back from a couple of days in NYC for Amber’s first dose of pembrolizumab. We went in on Sunday so we could be well rested for a 7:45 AM start on Monday. After an x-ray to confirm her port is looking good, we continued on to a loooong MRI, looking at both the brain and the spine. Amber is a trooper, as always, and did great. Then, we walked through Central Park on the way back to the hotel, enjoying a little fresh air and exercise.
Today (Tuesday) we got to start a little later, going in at 11:30. While waiting for confirmation of lab results and getting the pembrolizumab prepared by the pharmacy, the doctors and nurses came into Amber’s room with a birthday cupcake, gifts, and sang Happy Birthday to her! It was a beautiful gesture by the group, as they get to know us and we get to know them. They are certainly doing everything they can to make Amber (and us) feel comfortable.
While we were waiting, Dr. Kramer also fills us in on the results of the MRIs – both show as expected. A little growth since the last, but nothing to cause any additional concern.
Then came the infusion. With all the build up to this, and with all the importance we place on it, it was remarkably (and thankfully) unimpressive. Amber is hooked up to an IV (via her port) for 30 minutes, and the medicine slowly pumps in. And then they disconnect her, and send us on our way. It was almost a “really, that’s it?” kind of moment – but I’m not complaining. These were incredibly long days for Amber (and for us). But if this works as we hope, and it can be this non-invasive, we will consider ourselves blessed.
So now, we have to come back to MSK weekly for the next 6 weeks for routine labs and vitals checks, and then we go to three week cycles. We pray this works, that the tumor’s growth halts and then begins shrinking. It’s going to take some time to see results, though, so for now we wait and pray.
Day 197, Happy 7th Year of Life, Amber Grace!
6 months ago, things were just as they were supposed to be; the hustle and bustle of our normal life with it being pretty near-perfect.
6 months ago, that pretty near-perfect life, it changed quite dramatically. It was life-altering.
6 months ago, Matt and I thought we had lost one of the most important — most special things in our life, Amber. In those first few days we thought that was it, that she wouldn’t make it through — or, if she did come through, Amber would be forever different, and not our “Amber” that once was. Those first few days were the hardest with grim thoughts swirling through our heads. One of those thoughts — not seeing Amber celebrate another birthday, ever. It’s dark and it’s sad, but as humans, it’s what our brain does. It tries to process the moments and put the future into perspective. But how different things turned out to be — God wasn’t ready for Amber to come home to Heaven just yet.
God has a very special plan for Amber, one that I believe has already, and is currently taking place. Our little Amber Grace has brought us all together. Family, friends, and strangers alike. We have, and are, coming together in our Faith and in our Hope. But God’s plan is beyond that. It’s simple yet complicated. So as we’ve all been brought together, my question is, what’s next in His grand plan? I hope it’s as simple as — Amber is cured by this clinical trial, which in turn gets this drug easily to other children to help cure them too. But God is mysterious . . . He may have other intentions. What I hope and pray is that God’s plan includes Amber celebrating many, many, many other birthdays here on Earth.
6 months ago, in those first few horrible unknown days and sleepless dark nights, Matt and I never thought we’d be sitting here, right now, eating Amber’s special birthday dinner of tacos, singing “Happy Birthday” to her smiling face, enjoying a piece of her delicious cake, and watching her excitedly open up her birthday gifts.
Thank you God for this extra special birthday day. It is truly a miracle that our Amber is alive and is enjoying all there is to enjoy about celebrating — especially, another year of life.
“Look at Lefty Mom!”
Day 214, A Heartfelt Thank You & What’s Next —
A truly heartfelt THANK YOU to all who supported the “Superheroes Pay it Forward” fundraiser. The result: 118 shirts sold and a final total amount resulting in $2050! WOW! That is so amazing and so generous! A truly wonderful donation going to an equally wonderful hospital: CT Children’s Medical Center. Helping to find a cure for present and future cancer Superheroes who are fighting for the win. Again, thank you!
The past few weeks have been moving forward with our new normal of weekly routine visits to NYC with MSK (Memorial Sloan Kettering). Amber’s blood work and other routine checkups have been good/normal thus far. Really the only thing that Amber has been complaining about, other than not wanting to go to New York, yet again, is small headaches above her right eyebrow that come and go. The doctors are aware but it doesn’t make it any less scary wondering what exactly is going on inside her brain on a day by day basis; is the pembrolizumab doing it’s thing or is the tumor getting bigger?
This week we return to NYC and MSK on Tuesday for her second infusion. In a couple of weeks is her MRI. Of course Matt and I are trying not to freak out wondering what we are going to see for the results. Honestly, if we could get a daily MRI, we probably would! We are just praying that the tumor isn’t growing out of control and/or that other tumors are making an appearance.
All we can do is pray for the best possible outcome for Amber, Heaven knows she deserves it.
Thank you for the continued thoughts, prayers, and support for Amber and our family!
Day 216, Round #2 in NYC
Today was another trip to MSK in NYC, for Amber’s second dose of pembrolizumab. As always, this started with checking Amber’s vitals, doing some blood work, then waiting around for a while until a room is available for the infusion. Amber had a little trouble with it this time, getting some flushed cheeks, a minor fever, and a little stomach ache. Nothing unexpected, nothing major (the list of potential side effects is very long and scary), but still meant needing to hang around a bit longer for observation – plus Benadryl, Tylenol, Famotidine, and Ceftriaxone (and antibiotic, just in case). Amber’s a trooper though, taking it all in stride.
I’m reminded of our time in the hospital room at Connecticut Children’s Medical Center. The beeping of the machines, Amber being connected up to the machine supplying her medicine, her lying in the bed napping. But beyond all of that, just as I was at CCMC, I am again amazed by the level of care the nurses provide. Not just the knowledge they have in their field, but the human, caring, supportive approach they take with Amber, and with us. At CCMC, our emotional state survived only through the help of the nurses; and while we certainly hope to not have to spend 50 days in a room here at MSK (or any other hospital), I see MSK’s nurses share that same critical quality.
We also got the results of the genetic testing from MSK’s genetics team. All the tests came back negative. This is a mixed blessing – on the positive side, this means that there is little chance of our other children being at risk due to genetics; however, this also means we still do not have any clear cause for all of this, and so cannot target her treatment to that cause.
So, we keep doing what we’re doing – weekly trips into NYC, weekly OT and PT sessions, watching Amber all the time for anything that causes concern, keeping her happy and moving forward, and praying – lots and lots of prayer.
Day 227, A Very Happy Halloween! & Next MRI
Happy Halloween From SuperGirl!!!
One of the best Halloween’s ever, why? Because Amber is HERE. Here to enjoy it. Period.
Monday is the day. Her much anticipated MRI. Not sure what it will show — 1 tumor the same size? 1 tumor, bigger size? 1 tumor, smaller size? OR maybe — Multiple tumors? Or maybe — no tumors? Perhaps it’s too soon to actually see a “difference”, or then again, maybe not. No matter what, Monday is the day — The Truth Machine will show something one way or the other. Please pray for us . . .
There is a Holy Hour for Amber at our church — Saint Mary Church in Baltic, on Sunday, November 4th, from 7PM-8PM.
And just a side note. November 4th is also my birthday. I’ve already received my very special gift: Amber Grace, alive and kicking. But I want more. I bet you know what I’ll be wishing for when I blow out those candles . . .
Day 229, … maybe?
Just when we think that we are in for a “yes” or “no” type of result, life reminds us that their is always room for “maybe”.
Amber had her MRI today. The results show some increased growth since last time, still in the same location as the original tumor. We were hoping to see some reduction, so of course this is disappointing. But, the Doctor gave us some interesting detail – it is not uncommon for this medicine to cause some inflammation of the tumor at first, and this would show up as we saw in today’s scan.
So unfortunately … we are squarely in “maybe” territory. It’s possible the medicine is having no effect and the tumor has grown a bit, and it’s possible the medicine is having a positive effect and has inflamed the tumor.
We had a good conversation with the Doctor, basically coming down to two options: we could abandon the current treatment and move to something else, or we can hold steady for now and continue to monitor the growth. More conversation will happen at next week’s appointment, but we are already fairly settled that we will continue with the current treatment for now.
So … “maybe” we are making progress? We pray that we are.
Day 249, Being Thankful
It’s been almost 3 weeks since our last post. It’s been an interesting few weeks, with ups and downs. But most importantly, this week was Thanksgiving. Even with the roller-coaster that life has been lately, we made sure to stop and enjoy the long Thanksgiving weekend as a family, and to really focus on what we are thankful for.
Since our last post, Amber had her third infusion 2 weeks ago. The infusion went smoothly, but while we were at MSK we discussed some pain Amber has been complaining about in her right eye. We were able to see the oncological ophthalmologist, who took a look and saw nothing immediately concerning, but gave us some ointment for a stye that had developed on Amber’s right eye. As the next couple of days continued, the pain increased, and Amber came home early from school twice. MSK advised us to see our pediatrician, who also didn’t see anything that should be causing pain, but he immediately got us into the ophthalmologist at Yale-New Haven. After almost two hours of different doctors and assistants looking in Amber’s eyes, they came back with their findings — she has dry eyes! So, we started giving her some simple eye-drops, and this has helped significantly. It hasn’t made the pain totally disappear, but it has made a huge difference. We are very thankful to be able to reduce her pain, and not have this be something more serious.
This past weekend, we got to visit the residence of Little Audrey Santo. Audrey died in 2007, but experienced miracles and may some day be Canonized. We met Audrey’s mom, and talked about Audrey’s life. Reverend Peter Joyce joined us, and gave a blessing over Amber, asking for Audrey’s intercession. Having Father Joyce is quite coincidental – he delivered the Wedding Mass when my brother got married in 2012, and the Funeral Mass when my brother died in 2016. There have been many similar “coincidences” over the past 249 days, so maybe his appearance at this most recent event in our lives wasn’t just accidental, but rather, is evidence of some larger plan in the works. Seeing Father Joyce, having Amber receive a blessing, and praying for Audrey’s intercession was all together an incredible experience, and we are very thankful to have some really good friends (who have helped us quite a bit through this entire ordeal), who set this up and joined us.
And then we had this beautiful Thanksgiving weekend. We hosted (and by “we”, I really mean Caron — I just try to stay out of the way) my parents, my aunt, Caron’s parents, her grandmother, and her brother and sister-in-law — along with our own family of 6. It was a beautiful time, some time to relax and enjoy a meal with the family, and ponder what we are most thankful for (I’ll say more on that a little later). On Friday, while many people were enjoying the chaos of the shopping malls, the six of us went and found our Christmas tree, and then decorated it on Saturday.
It was while decorating the tree that it hit me, what I’m really most thankful for right now.
As I’m watching the kids hang their special ornaments, I forgot for just a moment that Amber has a serious illness, most likely deadly. For a few minutes, she is “just” one of my children – laughing, enjoying herself, talking about Christmas. But then I remember, and struggle to maintain my composure as I realize that statistically, the odds are against Amber being with us to do this again next year. I remember that right now, the tumor is most likely still growing, and that we may be considering alternative plans over the next couple weeks.
But then I also remember that we have this time together. March 22 could have been it, could have the last time we had Amber with us. But she is still here. She is still happy, and we still have the possibility for a positive outcome. We have our whole family, right here, right now.
And so, even though the past 249 days have been difficult for all of us, and Amber most of all, I am thankful for this time we have together. However short or long it may be, we are going to appreciate every moment we have.
We now look to the next MRI, scheduled for next Monday (8 days away). This one should provide some direction — either the treatment is not working, the tumor is progressing, and so we need to consider alternative plans; or (somewhat less likely) the treatment is working and the “growth” that was apparent in the previous MRI was just “pseudo-progression” and we will start seeing the tumor shrink. So for now we pray simply to be pointed to the right path, whichever gives Amber the best chances.
Day 257, A Let Down Day
Wish we had better news to share with you today. In a nutshell, the day was a big let down. Amber had her MRI and unfortunately, the results came back with what we were fearing – growth. Because the Pembrolizmaub is not working, they decided not to have Amber do the infusion today, nor any others as she will not be on this particular clinical trial anymore.
We have been in contact with Dr. Gillan from CCMC and she has some backup plans in the works. One possibility is two oral medications: Chemo and a medication that will target GBM stem cells.
And meanwhile still, Dr. Gillan and the doctors from MSK are investigating other potential clinical trials.
We are grateful to have MSK and CCMC working with us, joining us in the fight. But still …
… I’m trying to be open minded and I’m trying not to be mad. But right now, I’m angry, sad, defeated, numb, exhausted, heart broken. This sucks. This sucks BIG TIME. This poor little girl. For what happened to her 8 months ago to what’s happening to her right now. It’s hard to hang onto hope when “hope” is literally a tiny little shred of a string . . . that’s fraying . . .
Day 262, Speed bump
Today was the annual Christmas Concert at the kids’ school. Amber, Ryan, Brianna, and Marie have been practicing their songs for weeks, and were ready to get up on stage. But, Amber wasn’t destined to perform today.
Yesterday, we had a follow-up with the opthalmologist. As the exam was wrapping up, and she told us that Amber’s eyes looked great, she took one quick last look and just sort of made an off-hand comment to the effect of “huh, she seems to have a very slight difference in pupil size”, but didn’t think it was anything of concern.
This morning after breakfast, because of that comment yesterday, Caron was looking at Amber’s eyes and noticed that the pupil of Amber’s right eye was a little larger than her left. On one hand, this immediately set off alarms for us both – when Amber was first brought to the ER at Backus Hospital, 262 days ago, the first thing Dr. Adams noticed was her enlarged right pupil; and then, during our next 50 days at CCMC the pupils were checked all the time for signs of pressure in the brain. On the other hand – we have witnessed this poor little girl go through so much, physically and mentally, that it can be tough to determine the right level of concern. But, even with the news this past week, this difference in the pupils was unexpected, so we called CCMC. After a quick exchange and deciding that while it /might/ not be anything of concern, it’s better to err on the side of caution, I brought Amber up to the ER at CCMC for a quick check, while Caron brought the other three children to their concert.
Once at the ER, they immediately start checking out Amber’s eyes, getting her vitals, reviewing the latest notes from MSK, and I end up repeating the story of the past 262 days several times as each new person enters the room, as it is probably faster for me to tell the story than for them to read the encyclopedic volumes of notes to get up to speed.
After some challenges getting the most recent MRI from MSK, they decide to put her through a quick CT Scan. Unfortunately, they do see some unexpected changes in the tumor/mass, which is causing some irritation and swelling, putting some pressure on the brain.
So we start discussing options while waiting for radiology to be ready for us for an MRI. Dependant on the results of the MRI, we might be considering something as simple as a steroid to reduce the inflammation, or might be considering immediate surgery. Or, possibly the worst case, doing nothing at all.
So then off into the MRI for the one-hour scan. As always, Amber is a trooper. She doesn’t want to be sedated, no movie or music, doesn’t even want ear protection (but she does eventually have to give in on that one).
Following the MRI, Amber has been admitted to the PICU, where we are right now (about 11PM). Amber is sleeping, receiving a steroid drip. We will determine in the morning if this works and gives us the time to develop and pursue a plan (as we have been anticipating), or if we go right into surgery tomorrow.
It’s rather surreal to be back here in the PICU, where we spent the first two weeks of this journey, starting 262 days ago. Nurse Alex is here, as well as Nurse Steve and Respitory Tech Craig. There are new faces too, of course, but these familiar faces are weirdly comforting. We wish we weren’t here at all, yet there is nowhere we’d feel more “comfortable” right now.
It’s going to be a long night. We hope that this is just a speed bump on the way to a better plan, but we won’t know till morning. Until then, we pray. There is nothing else Caron and I can do; this is in God’s hands. So as we have before, we pray that He gives strength and clarity to the skilled medical professionals who are determining the best course of action for Amber. And we pray that Amber rests comfortably and that God strengthens her for whatever comes next. And Caron and I will figure out what’s next after we hear from the team tomorrow morning.
Day 263, Morning update
Just a short update this morning.
We are going to stay at CCMC another night. Amber did well last night (well, at least as well as someone can do when being woken up every hour for checkups), and the steroid seems to be helping relieve the pressure. The steroid isn’t a cure – it reduces the brain inflammation, but does nothing to the tumor. So we are still assembling the plan, collecting options given the current state of things from various hospitals and medical centers and hope to have something more to work with tomorrow. We’ll post more as we figure it out.
Day 265, Heavy Hearts
It is with very heavy hearts that we share some difficult news.
Amber is home with us, happy and comfortable. However, after a number of discussions with the doctors, we have come to accept that this disease is progressing extremely rapidly, and there is nothing more that can be done to stop it. She is home with us right now and that is where she will remain until Our Father in Heaven calls her to his home.
We wish we had good news to share, but it is not. In fact, writing this, I am deeply struggling because there are so many raw emotions and thoughts swirling through us — our heads, our hearts, and our bodies — it’s all-consuming of our beings, and of our souls. My being . . . and my soul, was put here on Earth because of my children. I am their mother; their provider, their nurturer, and their protector. And as her parents, this is something that, no matter how hard we tried, we could not protect our child from.
We met with Dr. Gillan and Dr. Martin yesterday (Monday) around 10:30 AM. They brought us into a conference room with a couple of other nurses and a child life specialist. Dr. Martin pulls up the MRI from April on the big screen, which was taken shortly after the first surgery where the original tumor was removed, and then he pulls up the MRI taken this weekend to show us the comparison. The recent MRI will forever be embedded in our minds. Essentially, the entire right side of her brain has been overcome by this disease, this tumor, and the tumor and swelling is now putting pressure on the left part of her brain, skewing and compressing the relatively straight gap that splits the two halves of the brain into a curved hairline. You cannot even see the brain stem or the ventricles, as they have been compressed so significantly. With something like this, an aggressive Grade 4 Glioblastoma, it is hard to say how long Amber has. Dr. Martin indicates most likely days to weeks, but not months.
We’ve had so many doctors over the past few days as well as the doctors at MSK give a surprised “Huh” once they meet Amber, having just reviewed the MRIs before walking in the room, and we now really understand why this is their first word. They all expected to see a little girl in severe pain, barely functioning, and instead find a little girl breathing, talking, smiling, walking, not in pain, and still giving her parents sass like any 7 year old… how is this even medically possible? How is it that she is even still functioning?
Dr Gillan, Dr Martin, and the others at CCMC have learned much about us over the past 265 days, and were prepared to discuss this with us in the way they knew we needed. They were very direct with us, and walked us through what could be considered as options, but explained the downsides of each as they would impact us. The images and records have been reviewed by many doctors at several institutions that we trust, and there is agreement on the options (or lack of) currently available. One option was surgery to remove half of her brain, which is very risky and very likely leaves Amber with a very low quality of life – and, doesn’t cure her of the cancer, just buys more time to find a cure. Another option was to take a chance on another clinical trial, knowing that the trial we did already try was the “most promising” and did not work, and that the only other potentially viable trials will require significant travel, meaning a very high likelihood of Amber leaving this world while she is in a foreign place, nowhere near the people she loves most.
Or, the option that we have chosen – to go home and have her with us, keeping her comfortable and happy, enjoying what time remains with the people who love her. We struggled greatly with this, so much more than I can express here, but have decided that this is the best and only option that makes sense — Home here with her family before going to our ultimate home in Heaven.
Amber is doing well right now. She is very tired, sometimes continues to complain of a mild headache over her right eyebrow that comes and goes, and her right pupil is still a bit larger than her left. The hospital sent us home with anti seizure medicine, steroids, and stomach medicine. Amber might be capable of going to school, but due to her increasing tiredness and not knowing when symptoms may strike, we just feel that it is best for us to be with her at all times. We will have Hospice at our side, and are being educated in pain management. We will make sure she remains happy and comfortable, to the end.
We selfishly want our baby girl to remain here with us on Earth. We know she could change this world for the better. Heaven knows we need that. At first we were mad that what we’ve been praying for didn’t come true; for Amber to be miraculously healed and cured of brain cancer. But perhaps, we actually did have a miracle. Perhaps Amber was supposed to leave us on March 22nd, 2018. But instead, was given an extra 9 months to be with us and to enjoy our time together. And for this time we’ve had, we are truly grateful to God.
Matt and I ask that you still pray for Amber. Pray for her to get through these next days to weeks with comfort and peace, and to embrace the new life that awaits ahead.
Day 267, Peace, Calm, Comfort
Let me first start with some words of thanks. We truly appreciate all of the prayers, kind words, and support for Amber, for us, and for our family. This is an incredibly difficult time for us, but your support helps us avoid completely slipping into despair, and being able to enjoy our time with Amber. We read every comment on this blog and social media, every email, every letter, every IM, every text, and we listen to every voicemail. We haven’t had enough time or energy to respond to the vast majority as we would like, but we do appreciate every one.
It’s strangely calm right now. No more chaos, frenzy. No more trying to keep medical appointments or medications straight. No more hustle and bustle from Metro North, through Grand Central, to the 6 uptown, to the 68th St station. Just Caron and me, with Amber and the other children. As weird as it is to say, this is somehow beautiful.
And it’s a strange peace, too. For the first time since March 22, we know what is coming. There is no more question, no more rollercoaster of highs and lows. And as terrible, as hard as this is, we are making sure we are focused on celebrating the time we have with Amber, these days and weeks that maybe we weren’t initially supposed to have, and not mourning our loss before it happens. Yes, of course, we have our moments of absolute despair – but when we look back on this, that is not what we want to remember.
Today, Amber received her First Reconciliation. Normally, this would happen in January, to prepare for her First Communion which is in May – but we are fortunate enough to be able to celebrate both Sacraments with her now. Amber will receive her First Communion on Saturday.
Father Tito has been part of our life for a very long time — I was in 2nd or 3rd grade (33 years ago!) when he began at St. Patrick’s in Norwich. Caron received her Sacrament of Confirmation from him, he married Caron and me, he performed the Baptism of all four of our children, and has given our older children (Marie and Brianna) the Sacraments of Reconciliation and Communion, which Amber is now receiving. And, he gave Amber the Anointing of the Sick many months ago when this started, and again this week with this new downturn. He has been a big part of so much of our life, and it is both fitting and comforting that he is part of this with us too.
Today, we had THE talk with Amber, while the other children were at school. We’ve been struggling with trying to figure out how much she understands, how to talk with her about it, what to say. So we just asked her – “do you understand what’s going on?”, “do you know why we aren’t going to MSK or CCMC anymore?”, “do you know why we are having you do your Sacraments early?”, “what do you think happens if that tumor keeps growing?”. After many really good answers, she says it.
“Am I going to die?”
She doesn’t ask it like it’s a revelation of any sort. More like it’s the obvious conclusion, and if she knew we were trying to get to that obvious point, she would have just said it earlier.
I can’t quite describe how it felt, trying to talk about this. It was terrible, terrifying. It tore at my Soul with every word. For her to respond in such an anti-climatic way was almost a relief. She is not afraid, it is just the way it is.
We continued to talk about Heaven, which Amber described as Paradise. She can’t wait to see Uncle Ned (who passed in 2016) and Mo (our kitty who passed in 2012). And apparently, you can get all the marshmallows that you want, and everyone is happy and healthy there. We talked about how much we are going to miss her, but how time works different up there and she will barely blink before we are there with her. It was such an incredibly sad conversation, and yet comforting to know that she isn’t afraid.
We didn’t talk about exactly how much time she has (because, well, we aren’t exactly sure, and she has the literalness of a 7 year old) – but she understands that it isn’t too long. So, we started talking about what she wants. At the top of her list is having tacos (just cheese, no meat) and Domino’s Cheesy Bread for dinners; and visiting with her best friend Catherine. She also wants to watch a movie and snuggle with Mom on the couch; to go back to the Boston Children’s Museum with Dad (like we did last year); and to finally see her Uncle Keith and Auntie Mel who live in Texas with their children Noah and Autumn (the last time they visited she was still heavily sedated). She told us that she wants people to remember her as a nice person, and to remember her story going through all of this.
Again, this conversation was very matter-of-fact. Aside from the context, this was like any other conversation we would have had. It is just so strange, so surreal, to be talking like this. It is both the most disturbing conversation I’ve ever had, and the most comforting. Superficially, I am just talking with my daughter. Internally, my Soul was drowning in despair and burning with fear.
But then, the day continues, almost like any other. Her friend Catherine did come over to visit, and it made Amber happy (I love her laugh so much). Amber is comfortable, happy; if I hadn’t seen the MRI myself, I wouldn’t be able to accept the truth. She isn’t even complaining about her minor headaches right now. Aside from the physical constraints she has been dealing with from the beginning, and taking a few naps every day, she is just normal Amber. And we know we are blessed for this to be the case.
We have started reading this blog to Amber, with the whole family, from the beginning. We’ll try to read ~10 posts every night. I don’t know if we’ll make it through all 120 (now 121) posts, but we want to hear Amber’s reaction to all of this, to capture anything from her perspective that we may have missed. But just as much, we want her to know how many people have commented on these posts, and what they’ve said. Many of you have been following this blog for a long time, and have left comments. If there is anything you would like us to convey directly to Amber, please feel free to leave it in the comments of this post. We will read these comments to her right away, and won’t wait until we get to this 121st post.
Day 269, …
Amber is comfortable, sleeping, still with us for now. She (and we) will not be attending Mass this evening to receive her First Communion.
Day 270, Not much longer
Decadron. Keppra. Zantac. Ativan. Morphine. Compazine.
Every three hours. Every 6 hours. Every 12 hours. Nothing in sync means something every hour.
This morning, I realize we have done this so many times that we have this down to a routine, able to perform the motions without really thinking about it, even when exhausted. Clip the tube, open the cap, insert the syringe, unclip the tube, empty the syringe, clip the tube, remove the syringe, repeat for other syringes, flush with water, close the cap.
And then we just watch Amber, while we wait for the next cycle.
Friday night, Caron slept in bed with Amber. Amber was still talking and walking, but was increasingly tired and had vomited a couple times before bed and several more through the night. About 5:00 AM Saturday morning, Caron calls me into Amber’s bedroom. Amber looks like she is trying to talk, but no words will come out, just unintelligible mumbles. We place a call to the Hospice nurse, and she is at our house quickly. We know where this is going; we aren’t looking for the nurse to fix anything, we are just looking to make sure Amber isn’t in any pain. Heck, my signature is on the Advanced Directive paperwork, the DNR. No parent should have to experience the pain of that signature, trying to see the lines of the pen obscured by the tears.
After administering a round of meds, Amber settles a bit and can actually form a few words – but the sentences are coming out jumbled. She is confused, the words out of order. But her eyes aren’t confused – they look at us, no fear, just taking it all in.
By about 8:00 AM, Amber falls into a deep sleep. At first, she is just sleeping in the living room, and receives the surprise of her Aunt Mel, Uncle Keith, and two cousins arriving from Texas! This was one of the things Amber most wanted in her last days, and while she didn’t wake for this, we know she was aware of them. The grandparents and Uncle Mark and Aunt Meg also come over, and we spend the day all together, with Amber.
We accept pretty quickly that she will not make it to her First Communion that evening, so we call Father Tito, who immediately comes to the house. We pray over Amber, and while she isn’t able to receive the Eucharist by mouth, she is able to hold the pyx.
I also begin slowly realizing that there are other things I need to think about, coordination and logistics for the immediate future. My brain starts reverting to project management mode as I think through what comes next, and I have to ask Father about a Funeral Mass and Burial. And then I place a call to the Funeral Home. When this happens, what is the first thing I do, what is the second thing? On one hand, my brain clings to these things because they are structured, tactical, something I can do. On the other hand, again, no parent should have to make those calls, think about these things.
As of Sunday morning, Amber continues to be in a deep sleep. We’ve called Hospice a few times with questions about the medications, and they have been an incredible help. It’s less about the specifics of the medications, and more just the reassurance that we are doing the right things to keep her comfortable. Caron, Marie, and I “slept” in her room with her overnight, watching over her. Mostly motionless, with the occasional stretch or bend of the arm. We watch her chest move up and down as she breathes – four or five breaths, then she skips one, every time we think this might be it.
No, not yet, not this time. But not much longer.
I know how terrible this all sounds. It is terrible. We are watching our little Amber, our 7 year old daughter, die. THIS IS NOT HOW IT IS SUPPOSED TO BE. But still, somehow, we feel blessed to be doing this. She is home with the people who love her most. We’ve had nine additional months with her that we didn’t think we’d have after that first terrible day. We have these final days with her. We are ok, in a weird kind of way.
Amber, we will be ok. We love you, we will miss you, but we will be ok. Don’t worry about us. It is time for marshmallows, and time for you to see everyone who is waiting for you in the next life.
Day 271, Keeping it sassy
The title of this post was was chosen by Amber – as Caron and I were reading the draft and coming up with titles, Amber gave us a definitive “yeah” for this title.
After a 30 hour “nap”, almost completely unresponsive to us, overnight she started becoming more awake and aware – even through all the medications. This morning, she is talking with us – answering our questions, asking for water. It’s difficult for her to talk, and it’s very gravely, but it is intelligible.
She tells us that nothing hurts. That she wants chocolate milk. That she is really tired. That she wants to “go to the party”, and she invited Mom to the party too. And she scolds her brother or sisters if they make a loud noise. And, when she has had enough of our questions, the next one of us that asks “Amber?” gets only a very sharp and annoyed “WHAAAT????” in response. That sass continues right to the end.
And she asked to get up, out of bed, so she is comfortably relaxing in our living room right now, with her brother and sisters, Mom and Dad all near. She is in Caron’s arms, on the couch, snuggling.
We are happy to have these additional minutes and hours with her, but we are sad in knowing what is coming soon.
She continues to be comfortable, we continue to wait and pray.
Day 271, Monday December 17, 2018 4:55 PM EST
Today, Monday December 17, 2018 at 4:55 PM EST, Amber left this world and entered Heaven. Amber died peacefully, nestled in the arms of her Mom, with her Dad at her side and her siblings nearby. She has no more earthly worries, no more cancer, no more weakness. Her only concerns now are eating marshmallows and rehearsing with the Choir of Angels.
We’ll write more over the next few days, but for now, this is just about all the energy I can put into writing.
Day 272, Revisiting Day 271
Yesterday was a terrible day. I’m not sure I have much more energy today to write about it, but I want to capture it while it is all still crystal clear in my memory.
The night before (Sunday into Monday), Caron and I took shifts with Amber, swapping every few hours when it was time to give Amber her medications. In total, we each probably got about 2.5 hours of intermittent “sleep”, which is only slightly less than the past several nights. Amber did not sleep well either, but as the night wore on, she started coming out of her deep sleep and talking to us. This burst of energy and awareness lasted until around 1:00 in the afternoon, and it was beautiful. We even got to hear “I love you” several more times from her. This was an incredible blessing.
Through the night her breathing had become rough and irregular, but through the afternoon it really declined rapidly. She sounded kind of hoarse and would take 5 or 6 short breaths, and then a long 4-5 second pause. As the afternoon continued further, the number of breaths shrank, the length of the pause grew, and the “death rattle” started setting in. By 4:50, it became a regular rhythm of a short breath and long pause, and in her final minutes, the breaths slowly faded, and then stopped.
The nurses from Hospice prepared us as much as possible for this. We knew this was coming. Amber was comfortable and peaceful the whole time, and showed no signs of distress. But still – this was absolutely terrible. It was also absolutely the right thing to do, and something that we were only capable of doing because we love her so much. Caron held Amber in her arms the entire day, right to the very end, with me right next to her.
And then we cried. Deeper sorrow than I have felt at any time through this journey. The deepest sadness I have ever felt in my life. Amber was gone. Her soul departed, and we were left with just her limp body. The tears were a torrential downpour, our chests aching like someone just punched us.
I carried her back to her bedroom, laid her in her bed, and we prayed that she enter Heaven swiftly. My brain knows that she is no longer in any pain, that she no longer has any physical challenges. But my heart and my soul are shattered.
After an eternity, I call Hospice to let them know she passed. The nurse will come shortly to begin the process. Then, I call her grandparents and aunts and uncles to let them know.
Once the nurse arrives, she helps Caron and me begin preparing Amber. After bathing and dressing Amber for transport, Caron and Marie paint Amber’s nails one last time. Then the paperwork is filled out, and the funeral home is called.
Once the funeral director has arrived, after a few more pieces of administrivia, it is time to have Amber’s body removed. I am given the option, so I pick up Amber from her bed, and carry her out the front door to the waiting vehicle. It is dark, with only the house lights lighting our front yard and walk. I stop and turn to look back at the house with Amber. This is the last time she will see this house, the last time I will see her in this yard, the last time I will hold her in my arms. My little girl, who so bravely fought an aggressive brain cancer, and who made such significant recovery from initially losing the use of her left side. My little dancer, my love bug. My giggler, my sassy-pants. My Amber. I kiss her forehead and squeeze her for a few more seconds. Then I turn toward the vehicle again, lay her gently on the gurney, and watch her disappear down the driveway.
I can only describe what I am feeling as “broken”.
After a few more hours with Caron and our children, we all head to bed, with Caron and Brianna sleeping in Amber’s bed. Sleep does not come easily. But when it does, I sleep deeply, as deep as my despair has been.
This morning, we got out of bed to face our new life, our new reality. Now only 3 children need to be fed breakfast, to be dressed for school (yes, the kids wanted to go to school and see their friends today), to be kissed and sent out the door. And then, Caron and I started the next pieces of process – putting together a wake for Friday evening and a funeral Mass for Saturday morning, and visiting the cemetery where our little girl is to be buried (and someday, us alongside).
It has been an incredibly difficult couple of days.
Day 273, Planning the services
It’s weird to transition from grief to planning, but it’s also a little bit of welcome distraction. We’ve met with the Funeral Home Director, our Priest, and the Cemetery Manager. We have picked out a casket, a cemetery plot, and hymns for the choir to sing. It is all so surreal, and so very very sad.
We will hold a Wake for Amber Friday (Dec 21) evening in Taftville, and the Funeral Mass will be Saturday (Dec 22) morning in Baltic. A private family-only burial will follow. Anyone that would like details on the Wake or Mass, please contact me, Caron, or one of our family (off-blog, by email, phone/text, Facebook, or in-person please). The Wake will be Open Casket (parents – please note this in case children would be uncomfortable seeing Amber).
** Update – details published in Norwich Bulletin Obituary **
In lieu of flowers, please consider a donation to St. Joseph School in Baltic, CT or the Connecticut Children’s Medical Center in Hartford, CT.
Again, thank you all for the messages of support. We appreciate every single one of them.
Day 274, Obituary
Day 278, Angels Among Us
There is a sense of calm, a sense of peacefulness within us knowing Amber is safe and sound in her new surroundings, no longer battling this terrible disease.
This past Friday, December 21st, was Amber’s wake. On the ride there Matt and I looked at each other and asked ourselves if this was for real. Were we really riding to a funeral home for one of our children? Surreal. The whole thing is just surreal.
The wake was beautiful and touching. Amber looked absolutely angelic, surrounded in white from her 1st Communion dress, her veil cascading down over her shoulders, the white of the silk lining in her casket and the polished white of the casket itself. She sparkled from her tiara veil, her beautiful necklaces, bracelets, and ruby ring, with her purple rosary beads weaved in/out of her little hands. The casket was surrounded by gorgeous candles, poinsettias, and purple flower sprays and vases — and a gorgeous pine wreath with pink ballet shoes made of flowers that took our breath away. Amber must of loved this set up because there she lay, with just a hint of a smile on her little angel face.
The funeral home was adorned in things that were Amber. Two huge picture collages, Supergirl dolls and a Supergirl bracelet, special mementos from Amber’s prayer table at home, like her rosary beads from Rome, were spread throughout the funeral home. And there were other meaningful pictures too, and candles with sparkly purple hearts that made the funeral home setting more personal with these special touches of Amber.
The wake was set to start at 5PM and go until 7PM. However, because the weather wasn’t the best, and apparently the line was growing longer by the minute outside (so we were told), we decided to let our guests in early, about 4:45PM. Once we received the first person, we did not have a break again until our last guest around 7:45PM (45 minutes later than we expected). Matt and I looked at each other at one point and said that we didn’t even realize we knew this many people!
Wow . . . Matt and I, we are so humbled, we are so touched. Thank you to everyone who took a moment (a long moment especially when waiting in the rain) to come and give us your support, your sympathies and condolences for our little girl. It was so meaningful to us. We could just feel the love and emotions that were felt for Amber. Thank you so much.
We shared many tears through the night. But at the same time, we also shared many smiles and hugs. In a weird kind of way, this was one of the less tragic times of the past few weeks. Matt and I have found some solace in knowing that she isn’t fighting her battle anymore, that there is no more discomfort, that we don’t need to worry for her future condition, and instead can “just” feel the sadness of her not being here with us. It’s weird, but it does allow us to smile, to talk more about the love we have shared with her instead of dwelling on the disease.
The next day was Amber’s funeral. Saturday, December 22nd, 2018 — exactly 9 months to the day when ALL OF THIS started. What an appropriate way to end a journey, I guess.
I may be partial but Amber’s funeral was one of the most beautiful and perfect funerals I have ever been to. The spirituality of the whole thing was amazing; the alter lit up with candles and decorated with flowers; the pews filled with people who love Amber; our dear friend Angela lecturing; Father Tito’s homily; Marie, Brianna, and Ryan bringing up the gifts; and the music — oh, the music was just so moving. Sister Mary Patrick, Amber’s principal, and friend, helped us invite the Sisters of Charity of Our Lady Mother of the Church Choir as well as the Franciscan Sisters to make Amber’s funeral complete. It was magnificent.
Hearing the music and the Sisters singing, made me think of what Angels must sound like. Amber knows personally what the Angels sound like. Back on April 29th, on a night where a Holy Hour was going on for Amber at our Church, I was with her in the hospital. Just after 8PM that evening, after her and I were done saying our prayers knowing our friends and family were also saying prayers too, Amber turns to me and says “Mama, I hear the Angels singing…” What do you mean you hear the Angels Amber?” Is it loud or soft?” I ask. “They are singing softly, and it is SO BEAUTIFUL” she says. “Why do you think they are singing Amber?” “Probably because I am a sick person in here” she says. “Well, Amber, I think you are very lucky to be able to hear the Angels, not many people ever get to, I wish I could hear them too.” I said. Suddenly she blesses herself and puts her head down as if in prayer. “What are you doing Amber?” I ask. “I just said a prayer asking that you can hear the Angels too Mama.” she said.
Maybe one day I will hear the Angels singing, especially since Amber is an Angel among them. I have no doubt in my mind however that our little Amber Angel was singing right along with the Sisters this funeral day because it was just so beautiful and amazing. You could feel in your Soul how special and wonderful this day truly was.
After Mass was Amber’s burial at The Saint Mary Cemetery with our family and close friends.
To all of our friends and family, thank you. Thank you for making this journey with us and thank you for supporting and helping us through some very low lows and very high highs. Amber is at Peace. She is in Heaven. And she is watching and praying over all of us. Amber Grace Smith . . . she is the Lucky One.
Day 285, New Year’s Resolution
As happens every year about this time, we all think about New Year’s resolutions. Maybe we want to lose weight, or kick a bad habit, or budget better, or exercise more. For us, it has been a terribly difficult year – but we’ve also learned a lot about ourselves, about our communities, and about life in general. Over the past 10 days since Amber’s wake and funeral, we’ve had some time to reflect a bit, and came to a realization of what we need to do better in 2019.
The support we have received over the course of this journey has been incredible. Thank you to everyone that has thought about or prayed for Amber and for us, sent notes, messages, letters, packages, food, made phone calls, talked with us, or attended the wake or funeral. Truly, we are humbled by the love we’ve felt.
One thing that really struck us, though, was just how often people mentioned this blog. When we first started this blog, it was simply a way for Caron and me to spend less time sending out updates to everyone about how Amber was doing. We really only expected a few close friends and family to follow the blog, but even with that expectation, it was still uncomfortable for Caron and me to write. We are very private people, and the thought of sharing these details in writing was a bit scary.
But sharing the story became therapeutic for us, and the blog also became part of our support process as people reached out through the blog, or knew what we were going through because they read the blog and offered us assistance.
And this is where our recent realization comes in. As uncomfortable as it was, making our story public helped bring us much support. But we realize that many people going through difficult times suffer silently, and so do not receive the volume or quality of support that we received.
And so, this brings us to our resolution for 2019 – we will strive to be more aware when people around us are experiencing tragedies, difficulties, challenges, and try to find ways to support them as we have been supported, even if it is something as minor (but incredibly valuable) as a note or a hug to let them know they are being thought about.
Over the past few weeks, multiple people have shared touching stories with us where Amber teaches us this lesson. Even in the last month of her life, as her energy and patience was decreasing, Amber would check on her friends that were sick, and greet everyone with a sincere “how are you doing?”. If Amber can seek to understand other people’s challenges and provide support, in spite of everything she was facing, then so can we.
And we invite all of you to do the same. In Amber’s memory, in Amber’s Way, please look for those that need help, those that may be suffering in silence. And look to find ways to support them, knowing that sometimes even the smallest gestures of support can have incredible value.
Caron and I will be writing a couple more blog posts, but we are coming to an end for this blog. We will keep the blog online though, in case anyone else finds value in reading about Amber’s story, so please feel free to share with anyone that might find interest. Happy New Year to everyone – may 2019 bring peace to us all.
Day 366 — From Hell To Heaven
Today is Friday, March 22nd, 2019. Exactly 1 year ago, on Thursday, March 22nd, 2018, our Hell began . . .
2018 was the worst year of my entire 39 years. Throughout my life there has been the normal up and down days along with the good and bad days. But none could compare to Amber’s death. Not in a million years did I ever think to myself that Matt and I would have a child that, all of a sudden, is sick. But not just sick . . . cancer sick, and not just cancer sick, but the type of cancer that would most likely kill her . . . and on December 17th, it did. However, no matter how sucky and crappy it was for Amber and our family to go through this, I can say without hesitation that Amber died with Grace. She should have died on March 22nd, 2018, but she didn’t. With the Grace of God and endless prayers, Amber was granted a total of 9 extra months with us. And while she went through the works; several brain surgeries, several regular surgeries including a vascular port and g-tube, her re-learning how to use her left side, the countless MRIs, radiations, numerous trips to NYC, all this while attending school, PT, and OT — Amber did it all with Grace. Those hard yet special 9 months were fulfilling to our family, and God knew we needed that. Some may question why Amber still died even though we prayed and prayed – I know we have. God is Mysterious and God is All-Knowing. God has an exact plan for each and every one of us, and our questions will be answered on our own judgement day. God’s exact plan was always for Amber to be with him sooner than later, but to do so without pain and suffering. God also allowed her to have those extra 9 precious months with us, and THAT is how our prayers were answered.
Today also marks 3 months since Amber was laid to rest. Amber endured a lot over the course of those 9 months but everything she went through during her entire short 7 years ensured her a special spot in Heaven. And although not here physically with us, she will still be a great part of our lives. She gets to observe it from the best seat in the house — Heaven — watching how her family and friends’ lives progress.
The biggest goal in my life was to meet my soulmate and have children with him. I knew I was put on Earth to be a mom. Some people thought we were crazy for having so many children; their views like — the world is already overcrowded OR the world is a crummy place to raise even 1 child. My response to that was that I knew the type of children Matt and I would create; children that would change the world for the positive. I didn’t realize that that would mean one of our children (who was an actual child) would achieve that goal so early in her life, by losing her life. Amber was created by taking the best parts of Matt and mixing them with the best parts of me. And when Amber died, those parts of Matt and me died too — but not without some positive impact all around. Amber Grace has changed the world by touching so many lives. She has brought so many together, and has changed the world for the positive.
There was a school assignment in the beginning of the school year about who your Superhero is. Amber wrote that her Superhero is herself with her super powers being Faith and Love. Amber, without a doubt, was certainly a Superhero and she clearly has fulfilled her destiny on Earth by spreading Faith and Love, and continues to do from her special seat in Heaven.
Day 379, Life Doesn’t Stop After Death
I celebrate all of my children’s ½ birthdays and today, April 4th, 2019, is no exception.
~ Happy 7 ½ Birthday in Heaven Amber Grace ~
Life Doesn’t Stop After Death.
How dare life keep moving forward after the death of Amber. It should be stuck on pause — that horrendous day. It should be paused until Matt and I are ready for it to continue moving forward. There should be no laughter or smiles or happiness. How could there be when something so tragic just happened? What a cruel joke life plays on us though, because whether we want to pause things or not, life still moves forward and it doesn’t wait for our permission to do so. Life just keeps on going, even though we’re broken. Life forces us to move forward. It forces us to put our broken pieces back together and try to figure out this “new” life without Amber.
As our family scrambles around looking for each and every broken piece to glue back together, there will always be those little tiny missing pieces that you just didn’t find. And this “new” life is never fully put properly back together or perfectly complete; nor will it ever be again. And that glue that we used to place each piece just so — is now the only thing filling the gaps of where our missing pieces were supposed to go. Those gaps will forever be vulnerable and fragile. And if this broken life is somehow put back together again, it will not be worth the same as the original; it will never be completely perfect ever again.
And while we struggle with mending our broken family, I’m pretty sure Amber’s new life doesn’t stop after death either, and I’m pretty sure her new life is, without a doubt, Spectacular. A couple months ago, a very dear Aunt of mine shared with me a vision she had of Amber. She told me that Amber asked her “why is Mommy so sad? She helped me get to be with God . . .” My Aunt said that the way Amber said it was that of like — how could there be any question of (mom) still being sad — because she (Amber) is with God. So my Aunt said to Amber “she is sad because she can’t see you anymore.” To which Amber gave a little shrug of her right shoulder and said “but I am always with her…”
It brings my heart and soul peace knowing Amber is where I can only hope and pray to be one day, when it is my time. And each day brings me closer to seeing my beautiful and precious angel again. Thinking that way makes me feel giddy, like when I was a kid and seeing the Christmas tree surrounded by beautiful unknown gifts on Christmas Day. The beautiful unknown gift is my life leading up to seeing Amber again. And when I finally get to see what’s inside that beautiful gift — it will be the ultimate homecoming!
And honestly, in the grand scheme of things, Amber is truly the lucky one. She is in Heaven with God, and Jesus, and Mary, our cat Mo and her Uncle Ned. They are in Paradise surrounded by love and light and they still get to be with us in our hearts and in our minds.
3 weeks ago at my family’s annual reunion, I was reminded by my mom about the day we told our kids that their Uncle Ned passed away. It was August of 2016. We were in our hotel room, at the end of what was supposed to be the most magical trip for us all: a Walt Disney World vacation with all the bells and whistles. At the time, Marie was 10, Brianna 8, Amber 4 ½, and Ryan 1 ½. Marie and Brianna understood and took their Uncle Ned’s passing the hardest. Ryan was too young to understand. Amber however, even at the age of 4, was wise beyond her years. While the rest of us were all crying and embracing each other, Amber said to us “I don’t understand why you are all so sad, Uncle Ned is up in Heaven and he is happy . . .” And after she said that to us, she proceeded to hug each and every one of us. It was pure innocence and pure truth. How could I have forgotten such a moving and defining moment? And how omniscient and foreshadowing of the future. Amber’s statement of her Uncle Ned paired with my Aunt’s recent vision of Amber leaves no doubt in my mind that they are in Heaven with God.
So I end this post with some of Amber’s own sentiment —
Why are we so sad? Amber’s up in Heaven, and she is Happy . . .