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.

http://www.legacy.com/obituaries/norwichbulletin/obituary.aspx?pid=191039211

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.

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.

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.

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.

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.

Amber is comfortable, sleeping, still with us for now. She (and we) will not be attending Mass this evening to receive her First Communion.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

… 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.

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.

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.

(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.

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.

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.

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.

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!

(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.

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.

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.

https://amberswayblog.files.wordpress.com/2018/04/amber20180322.jpg

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.

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.

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 happened?

Why?

Why me?

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 …

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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!

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.

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.

God bless.

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.

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 …

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.

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.

(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.

(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.

(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…

(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.

(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.

(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.

(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.

(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.

(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…

(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.

(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…