Day 13, the Elephant and the Whale

How do you eat an elephant?  One bite at a time.  Another good day today, but also reminders of what is still ahead of us.

Right from day #1, Dr. Martin cautioned us that we were going to be eating an elephant.  Thinking about this process as a singular whole is terrifying, so we’ve been forcing ourselves to tackle this one day at a time, one bite at a time, one milestone at a time.

Today, Amber continued to improve her communication with us.  She will wave when she wants us, will squeeze our hand or give us thumbs-up to yes and no questions, and can show us however many fingers (on her right hand) as we ask.  But, as Caron noted yesterday, I can be a bit “persistent”.  I know there is a risk to her memory from the original stroke and second surgery, so today I decided to see if we could test that.  I asked her if she remembered the Daddy/Daughter dance from a few weeks back, and she squeezed my hand “yes”.  Then I asked if she remembered the dress she wore, and again, she squeezed “yes”.  Then I told her I was going to ask her about the color of her dress.  Did you wear a red dress? No squeeze.  Did you wear a yellow dress?  No squeeze.  Did you wear a green dress?  Definitely got a good (correct!) squeeze from her!   So let’s try this again — I ask if she remembers that we were going to go on vacation, and used the same process to ask if we were going to California, Texas, or Cape Cod.  And again, she correctly answers “Cape Cod”.  All definitely good steps.  And so throughout the day, we’ve built up a small collection of hand movements — waving her hand means she wants us; a thumbs up or snap of the fingers (yep, she can do that too!) means “yes” or “I want that”; two fingers means she needs to make a “number two”; one finger means she wants me to go away and give her privacy while she tries to make a “number two”.  She is, of course, frustrated that she can’t express everything she wants, but at least we have a start.

And I received lots of one-fingers and finger-snaps today; so while she can’t talk yet, her sass is definitely still there.

And some more good news – the sedative has been further reduced, and the final cranial line (an “EVD”) was removed.  The next bite in eating this elephant is to reduce and eliminate the breathing machine and the breathing tube from her throat, and seeing how she does verbally.  This should begin over the next several days.  In parallel, we’ve also started working with PT and OT on some basics to work on muscle strength and dexterity.

We also discussed a bit more about the remaining elephant.  Based on the impact to the brain up to this point, we expect that Amber’s left arm and left leg will suffer some long-term (possibly permanent) impairment – both weakness and poor fine motor skills.  We also expect her to have poor, and possibly zero, left side vision (note – not left eye damage, but rather the left peripheral vision of each eye).  Of course, we will work hard with PT, OT, and whatever else we can to continue to improve over time.

And then, there is still a whale to be eaten too.  Once we stabilize her physical state (the elephant), we can begin treating the glioblastoma (the whale).  We got the report from Dr. Martin today that he met with the Tumor Review Board here at CCMC, and they have begun putting together the plan.  In a few weeks (three-ish), she will receive another MRI to confirm there has been no tumor regrowth.  Then, the “skull flap” (the piece removed during the original surgery) will be replaced.  After this, we can begin the first phase of cancer treatment – radiation therapy.

So, how do you eat an elephant and a whale?  Still, just one bite at a time.

A closing thought – my dad said something profound to me yesterday.  He has been praying for Amber, for her strength, for her recovery.  But yesterday morning he mentioned that he paused to add a “thank you” — Thank You God for the time we spent with Amber on Sunday, and more generally for her being a blessing in our life.  And so I would like to do the same here.  God, Thank You for blessing us with Amber, for giving us the time with this beautiful little girl, no matter how long or short it may be.  Thank You for the family you’ve given us, all of our beautiful children, and the time you’ve given us with them.  Thank You for the incredible family and friends that are supporting us through this process, and Thank You for the people at the Connecticut Children’s Medical Center who have been working so hard and been so kind to Amber and to us.  And Thank You for giving us hope that we can indeed eat this elephant, and this whale, one bite at a time.  And maybe still have room for an ice cream sundae at the end.

18 thoughts on “Day 13, the Elephant and the Whale

  1. I am so happy to read such positive news. The Massachusetts clan continues to send prayers and positive thoughts. Tell Amber we love her.
    Amount Becky

  2. Continuing to send prayers for Amber to get through this, for you and Caron to have the strength to support her on this journey and for the grandparents and family taking care of the kids at home, God bless all of you!

  3. Sharing an ice cream sundae with Amber and family sounds glorious! Let’s go for it!

  4. Positive steps! One second, one minute, one hour, one day at a time. Y’all remain in my thoughts and prayers! When it’s time, Fudgy the Whale is on me! 🙏🏼 💛

  5. Thank you for these updates, Matt. This is all encouraging news. What an amazing little girl Amber is!
    As Amber progresses, I would encourage you to inquire about pet therapy that may be available at CCMC. Lots of research shows so many beneficial effects and I’ll bet she’d love to feel a furry head and a wet nose!

  6. Great job Amber, small person with big spirit. She’s tackling this elephant like a champ. Love you all and so thankful for Amber.

  7. This Sunday, my Pastor preached about being Easter people in a Good Friday world, and to look for Easter moments, no matter how small.
    Amber’s progress is a prime example for me of these “Easter moments”. It brings me great joy to read about her progress each day.
    You all continue to be in my prayers.
    💜

  8. Amber’s progress is so amazing! Keep up the great work Amber. I will remember you in my prayers every day and may you recover at light speed little sunshine 🙂

  9. my sweet little angel that God sent us…and still have. Pep cannot wait to see you and communicate with you. We can do this…together as a family. hugs&kisses

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