Amber’s been asking to go to school to visit. Well, today was finally the day! It seemed like all of Amber’s friends were just as excited to see her as she was to see them! It was a beautiful moment in time for me to just step back and observe all the love.

We met with our new Occupational Therapist, Michelle. She seems promising and we are looking forward to having her work with Amber and hopefully continue the great progress that was already started with Caitlin.

At radiation therapy, Amber was in a bit of pain when they tried to put her mask on due to Amber’s healing stitches being tender and sore. However, not to worry, the ladies came to the rescue with an easy fix and all was right again. When we were walking out, Darlene and Shelly stopped in the hallway to show Amber a colorful link of papers with numbers on it. At the very bottom was a purple #29. The ladies created a countdown for Amber’s treatments! So every day Amber goes in for treatment, she gets to pull another link off. How creative!

Tonight was a very special night. Tonight was the girls’ Spring Concert. And as it turns out, Sister Patrick, principal of our school, dedicated it to Amber. I don’t think 58 days ago any of us thought Amber would be in the audience tonight enjoying her school’s concert, but she was. THAT is the healing power of prayer, of God’s love, and of course, pure determination from Amber. These past 58 days for me have been a reevaluation of myself and what’s important. So when hearing a few songs tonight that Brianna sang in particular — Amazing Grace, Somewhere Over The Rainbow and From A Distance — the words of these songs and the voices of these children struck a chord. The chord it struck was my baby girl sitting right next to me with her sleepy left hand nestled in mine. All I ever wanted in life was to be a mother and God has granted me this honor of being Amber’s mother one more day.

At the end of the concert, Amber was presented with a big card, maracas, and a beautiful Djembe drum from some of the Academy of the Holy Family students as well as Alice, their Spanish teacher. Now those instruments will help progress Amber’s sleepy left arm, hand and fingers! Thank you! Amber can now literally march to the beat of her own drum; which makes sense since this is Amber’s Way.

Today we had a visit from a couple of sweet ladies from the local Palliative Care* organization.  They are another resource for us to use, as needed, to help with Amber’s care or for the rest of the family (ranging from pain management to family social work).  After some very positive discussion with them, we are going to hold off for now and wait until a potential future time where we feel we need it more, so that we don’t unnecessarily exhaust what insurance will cover.  But it is very comforting to know we have another local resource available to us.

Amber had her first radiation treatment today at Backus Hospital in Norwich.  The team there had a little stuffed animal friend named Tasha waiting for her when she first arrived that kept her safe and did the therapy with her.  Amber did great – she wore the mask, held real still, and was smiling (nervously) the whole time.

One down, 29 more to go . . .

* Palliative care is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.

Today we met with the Radiation Team at Backus.  Everyone was so pleasant and welcoming!  Amber is set to have her first radiation treatment tomorrow.

I was also able to finally set up PT and OT with L&M Hospital.  Unfortunately for now, OT will be at the Pequot Health Center in Groton and PT will be with the Waterford Outpatient Rehabilitation Services.  Turns out that the OT at Waterford ORS is on family leave and the PT at Pequot HC is leaving.  So . . . for now we’ll do both places and hopefully, eventually, we’ll just end up at one place with back to back appointments.

As Amber starts her radiation treatments tomorrow, 5 times a week for 6 weeks, please continue to think of her and pray for her.  It’s so scary to think that our little Amber Grace is having radiation.  Radiation in hopes that it puts the cancer in remission — or at least puts us one more step in the right direction.  I still honestly can’t even believe that I’m saying the word “cancer”.  A Glioblastoma Multiforme Grade 4.  Am I seriously even writing this right now or am I still in a really horrific nightmare and will wake up to everything being as it was before all this?

We went for another CT Scan today at CCMC.  After the CT Scan we went up to the 5th Floor to the Cancer and Blood Disorders Department to meet with Dr. Gillan, our Oncologist.  After chatting with her a bit, Dr. Martin joined us to discuss the CT Scan.  There is still some fluid build-up in Amber’s head but instead of it being in the main part of her brain, it has moved out and down towards her right cheek bone and temple area.  For now, we are going to watch and make sure that the swelling doesn’t get bigger and make sure it stays soft, otherwise we may try steroids or a stint for drainage.  Nothing too troubling, just something to watch.

We discussed a few questions that we had regarding upcoming treatments.  The plan for now is that we will do radiation for 6 weeks.  4-6 weeks after that we will do an MRI to see if there are any new tumors.  If all stays the same then we will continue to get MRI’s every few months.  If those results stay the same and there is no new tumor growth than we continue with MRI’s every 6 months until we get to 5 years with no change and then she will be in remission.  That would be the perfect scenario, and we pray for this kind of result.  However, we know the chances of that are quite small, so we are prepared for additional treatments, and potential clinical trials – we discussed today a promising Oncolytic Virus Therapy which uses the Polio Vaccine, being trialed at the University of Alabama.  We will follow Dr. Gillan’s lead on this (as hard as it is to trust someone else with Amber’s well-being, we have developed a deep trust in the doctors at CCMC – though we will also do our homework too, of course).

On our way out of the hospital we ran into Carina the therapy doggy that snuggled in bed with Amber a few weeks back!  It was a nice way to wrap up our visit at CCMC today.  But the day wasn’t quite done yet – we had one more stop to visit our pediatrician.

So, after a brief stop for some McD’s, we went to go see Dr. Gellar at the Norwich Pediatric Group in the Colchester branch.  We are quite blessed to be surrounded by good doctors who are also good human beings.  Dr. Gellar talked with us for quite a while, asking about Matt and me too, making sure we had everything we needed.  And, he helped us close one remaining open issue for us – it’s been tough to find pediatric physical and occupational therapy around the Norwich area.  Dr. Gellar checked with the team in the office, who indicated that Lawrence & Memorial Hospital would be the right place to go.  This agrees with what we were hearing from others, so we’re going to go in that direction.

So, a good day.  Some better understanding of where we are going, what we are hoping for, what the options are.  Tomorrow with meet with the radiation team at Backus Hospital, and kick this into high gear.  We pray for rapid, complete treatment, and also the strength to accept whatever outcomes we are delivered.  And again, we thank God for every day He has given us here, and for connecting us to the people that will help give Amber the best chances through this.

Amber is adjusting well to being home.  While I was busy doing typical Monday morning stuff with the other kiddos, then on and off with phone calls, then sliding in a grocery shopping while their grandparents babysat, Amber and Ryan were able to keep themselves pretty much entertained (and annoyed with each other) for a while.  Later on, while Ryan was napping, Amber and I were able to practice going up and down a flight of stairs as well as trying to motivate her left arm and hand with playing in some kinetic sand.  After that, we opened up a Princess Math Workbook that her teacher had given her and ended up blowing through 6 pages before it was time to head outside to get her sisters off the bus.

Today was a good day 🙂

 

Amber working on her Princess Math Workbook

I’m sure it’s probably pretty obvious that today’s Mother’s Day is the Ultimate Mother’s Day for me.

Never ever, in a million-billion years, did I ever think there would be a time in my life, especially this early-on in my motherhood, where there could be a chance that I would be celebrating Mother’s Day with either (1) being in the hospital with a child, let alone with a child that has a new-found life-threatening illness or (2) at home “celebrating” Mother’s Day with a child that has passed. We lucked out that it was not the latter, and we lucked out that we are not currently in the hospital.

I believe earlier on when we started this blog, I mentioned that sometimes life throws us a curve ball. Where life as we know it suddenly changes. Sometimes for the good and sometimes for the bad. Even though I would prefer the kind of change that is good, I must admit that I’m not sure if these past 7 1/2 weeks have been necessarily “bad” either. I know this must sound crazy but honestly, in the beginning of Amber’s journey, all of this was bad, really really bad. But given where we started, given that new perspective on life, we are emerging good, really really good. And we have a new appreciation for every day, for our family, for our community, for our faith.

Look at where we are today, on Mother’s Day. Amber is with us, alive and literally kicking (we’ve been practicing!). She was able to come home from the hospital after a major stroke and she is AMBER. Yes we have a long way to go as far as the PT/OT and upcoming cancer treatments but she’s back home, in her surroundings and in her environment, and she’s her sweet sassy self. We were able to celebrate this morning by going to Mass at our Church, all together. It was beautiful, it was wonderful, it just felt complete. We owe so much to God, Jesus, and Mary. Mary granted me this absolute, wonderful, blessing of an Ultimate Mother’s Day gift and for that I am eternally grateful.

And tonight has completed my Ultimate Mother’s Day. Tonight was the Academy of the Holy Family Holy Hour for Amber. And Amber, her alive-and-kicking-sweet-and-sassy self, got to attend! The Holy Hour was beautiful; intervals of peaceful healing music mixed with prayerful silence. Thank you to everyone who took the time out of their busy Mother’s Day schedules to share this night with Amber and with us. What a perfect day. What more could I ask for on Mother’s Day?

Everything is alright in the world . . .

That’s how it feels having Amber home. Although, truth be told, these first few days have been a bit difficult and exhausting in regards to helping her with her ongoing recovery; Matt and I filling some of the role of PCA, PT/OT, and nurse, while also trying to schedule upcoming appointments, trying to maintain a “normal” schedule with the other children — all of this while trying to “settle” into our new way of life.  It’s tough at times but totally worth it, to have her here with us, right here, right now.

Amber came home this past Thursday.  Before we were discharged we said our goodbyes, took pictures, and gave hugs to everyone we could that took special care of Amber.  The emotions were bittersweet.  Sweet because, well, everyone was.  CCMC took exceptional care of Amber, of us.  Bitter because of the fact that we were even in this situation in the first place.

After we were discharged, we had to head over to Hartford Hospital to have a special mask created for Amber’s upcoming radiation treatments.  Hartford Hospital is literally right next door to CCMC.  So as Amber, Matt, and I are walking (and wheeling) past the outer edge of CCMC where we usually hung out when we took Amber out for an hour or two, Matt and I joked, saying that at any moment, the security alarms were going to blare and security was going to come and grab us because we’ve gone too much past CCMC’s boundary!  However, there were no alarms nor security guards coming for us to take us back.  We were — ~~ FREE ~~ –!!!!

So, for that first bite of the whale . . .

We found the Radiation Oncology department and proceeded inside with Dr. Bertsch and an RN named Kara.  They took us into a room where there was a CT Scan and a few technicians (all women by the way so Matt was way outnumbered).  Dr. Bertsch and crew explained to us how they were going to make her mask;  a flat piece of plastic that is heated and molded to the face.  In order to do this, Amber had to lay down on the CT Scan table/bed, with her head lined up just so.  One of the technicians gave us a sample of the plastic that was heated up so that Amber (and us) knew what to expect.  And quite honestly, when she gave me my little piece, oh man was that sucker hot!  I’m thinking to myself, how is Amber going to be able to lay there with this hot piece of plastic molding her face?  Yikes!  Although it was alarming for the degree of heat of the plastic, I am very happy that the technician did this because I think it helped Amber.  She now knew what to expect.

So there’s Amber, lying flat on this table/bed, covered in a nice new silky soft blanket, with this hot piece of plastic molding to her face.  She did not, cry, she did not yell, she did not complain one bit, and all while being completely and perfectly still.  She remained still even more so when it was time for Matt and I to step in the back room so that she could have her CT Scan done.  Again, this little girl amazes me.  Every day, it’s something new.  When finished we got to see and keep the finished product, as it will be used every day for her radiation treatments, to make sure her head is in exactly the same position each time.  Furthermore, Amber received that special blanket I told you about earlier, 2 large Kit Kats, AND she got to pick out a Princess Waffle Maker and Activity Cup, with a beautiful handmade pink bag to put it all in!  Man oh man.

The next day, on Friday we did receive a call from Dr. Martin indicating that the CT Scan showed some excess fluid.  So, this coming Tuesday we are going to have another CT Scan done to see about the fluid levels, and take it from there.  Dr. Martin wants to make sure that everything is copacetic before the start of Radiation next week.

One last thing, I know I probably sound like a broken record but I have to just say how truly Blessed I am.  Tomorrow is Mother’s Day.  My Mother’s day wish came true.  I am spending my Mother’s day with Matt, Marie, Brianna, Ryan, and AMBER, altogether, in OUR home under ONE roof.  Oh!  And Rea of course too!  That’s pretty special right?  Well that’s not all.  Tomorrow night, also on Mother’s day, there is another prayer ceremony for Amber at our Church; St. Mary’s Church in Baltic at 7PM.  A prayer ceremony in Thanksgiving.  There is so much to give thanks for . . .

There’s been a flurry of activity yesterday and today in preparation for Amber to come home. As terrifying as it is to leave this support — this crutch; the hospital, our nurses, and our doctors, there is something to be said for There’s No Place Like Home.

Matt and I know that going home is going to greatly help complete the task of devouring our elephant, and get us ready for the whale, which is the next phase. There’s nothing like home . . . Home sweet home, with Amber’s siblings, Amber’s own bed, and best of all, Amber’s best buddy Rea.

Amber has come so far and has made such great strides. It even seems that Amber’s recovery has come along a bit more quickly than some expected early on here. Yes, Amber worked her buns off making that possible but it wasn’t just her hard work and desire that got her to this place. As we’ve written several times, the medical care, the human care, provided here at Connecticut Children’s Medical Center has been incredible. But there’s more to it than that.

Matt and I would like to express our gratitude to you, our family and friends. You, who prayed. You, who supported. You who took the time to set up prayer services and send mass enrollment cards. For creating cards and decorations, making food, sending care packages and gifts, or even just offering a positive thought about her. All of this — this overwhelming adoration and care for our little girl and for our family, it makes our hearts and souls rejoice. I honestly wish I could open my heart and show you how full it is of love and joy.

You all helped in Amber’s recovery from a major stroke. You helped Amber wake up, and move her right side, and talk, drink and eat. You helped her color, read, move her left leg and foot. You helped Amber have amazing MRI results and safe surgeries. You helped Amber to stand, walk and go up stairs. You helped her move her left arm and hand. You helped Amber to get her spunk, sweetness and sass back. YOU helped her, and you helped us. Every single one of you. God brought us together for a reason . . .

💜 From the bottom of our hearts, Thank You 💜

Amber had an AWESOME day!

Getting ready this morning Amber chose her Supergirl pajamas, which basically set the bar for the rest of the day.

In PT with Ms. Lauren and Ms. Amanda, she blew their socks off by not only walking 100 feet with the walker and some assistance but when we went down to the gym on Floor 6, she walked UP and DOWN 4 steps, TWICE! Once assisted with Ms. Lauren and the last with me. 16 steps!

Then in OT with Ms. Caitlin, Amber MOVED her LEFT ARM and HAND! I kid you not! Amber’s been squeezing our fingers a little bit the past few days with her left hand but this was just amazing! She has a long way to go, like the way her left leg and foot were but, wow . . . just wow!

Amber’s Way: She’s Determined, Strong-Willed, Tough, and Ready To Get This Thing DONE. *~* She’s SUPER AMBER GRACE *~*

And to end the day, more great news. We got the word from Dr. Martin that Thursday — This Thursday, is the day Amber should be able to come home! Furthermore, how coincidental and appropriate that this Thursday is also Ascension Thursday; when Jesus’ body ascended into Heaven — He went home too!

Amber is on her way, fast and furious. The evidence is clear just how BIG her fighting spirit is — more than ever, especially with a discharge date only a few days away. Amber has proved which way she wants to go, and go she shall!

I will leave you with a fitting quote that was posted up in the Post-Op room last Thursday:

Good, better, best. Never let it rest.

‘Til your good is better and your better is best.

– St. Jerome

Amber and I had a nice quiet day together. So with that, I’ve decided to write about something else that’s been on my mind.

In the Pre-Op room on Thursday, we were introduced to the head nurse that would be in with Amber during her procedure. Her name was Beata. Beata, as it turns out, was the one that also took care of baby Lily (and Cutie) in the OR, adorning her head in wrappings and ports, to match Amber. Beata and Amber’s team did not have to do this extra thing, these extra steps. It most likely set the nurses and doctors back from their next appointments, and they probably fell behind in their schedule a bit. But instead, these doctors and nurses went above and beyond to take Amber’s comfort to the next level, to have her baby come out safe and sound with the same exact recovery as Amber herself. This sentiment speaks volumes of the hospital.

For me however, the sentiment goes further. Amber’s head nurse that day was Beata, as I mentioned earlier. When we were introduced to her and she told us her name, my mind immediately went to the word: Beatitudes. I took a mental note to look those up later because at this particular point, it was go time and I was able to go in the OR with Amber while she fell asleep. Later, in the waiting room, after I said my prayers in the hospital’s chapel, I finally got to look up the Beatitudes. You see, I couldn’t quite remember on my own what these were because it’s been a long time since my CCD and CYO classes.

According to Wikipedia, The Beatitudes are eight blessings recounted by Jesus in the Sermon on the Mount in the gospel of Matthew. The eight Beatitudes are:

* (1) Blessed are the poor in spirit: for theirs is the kingdom of Heaven.
* (2) Blessed are those who mourn: for they will be comforted.
* (3) Blessed are the meek: for they will inherit the earth.
* (4) Blessed are those who hunger and thirst for righteousness: for they will be filled.
* (5) Blessed are the merciful: for they will be shown mercy.
* (6) Blessed are the pure in heart: for they will see God.
* (7) Blessed are the peacemakers: for they will be called children of God.
* (8) Blessed are those who are persecuted for righteousness sake: for theirs is the kingdom of heaven.

Reading further into #5 about mercy, there is another notable devotion associated with the works of mercy, the Divine Mercy — which are reputed to be related to the apparitions of Jesus Christ that appeared to Saint Faustina Kowalska. I can’t help but think about how we prayed with Amber a few weeks ago with Saint Faustina’s relic . . .

Which brings me back to Beata. The name Beata, which derives from Latin and means beatus, or blessed. God blessed us with Beata watching over Amber, and Lily. Amber is blessed by God with her recovery thus far. And we are blessed for so much; Amber, the nurses, doctors, staff at CCMC, our families, our friends, our aquaintences. We are at the mercy of God in all of this — from the beginning to the end.