Anna Update: Day + 28, "Picking Apart The Pain"

August 14, 2016

Anna has been at Phoenix Children’s Hospital for 36 days.  It’s been nearly a month since her transplant, day +28 to be exact.  Her new cells are growing and rebuilding her immune system.  The doctors say she is making great progress.

The last 10 or so days have been the hardest.  Anna is beginning to come out of the shell of pain and depression that has had a grip on her during this harsh but necessary period.  Throughout that phase Anna had fleeting moments of joy and always managed to find her fighting spirit.  A few examples:

Last Saturday, Anna was paid a visit by a remarkable lady.  The evening before singing the National Anthem at the Cardinals home opener, Kristin Chenoweth made her way to room 7107 at PCH to meet one of her biggest young fans.  Backstory: Three months ago Anna and mom traveled to New York for a special trip before her transplant.  They took in Wicked on Broadway and ever since then Anna’s been hooked on the music.  You may know that Kristin was the original Glinda in the production.  Kristen also plays Maleficent in one of Anna’s favorite movies, “The Descendants” on Disney channel.  

Anna knew ahead of time of her special visitor.  Kristin walked into the room singing “Popular”, a number from Wicked.  This brought the first smile of the difficult week to Anna’s face, and the two had a few laughs.  

https://youtu.be/eWovBeZKv2Q

Kristin knocked it out of the park the next day as you may have seen on NBC’s “Sunday Night Football”.

https://www.youtube.com/watch?v=5L7EUUtUuYM

On Sunday, Anna awoke and proclaimed she’d like to do yoga.  We found a YouTube video to coach us along.  So dad and Anna did 40 minutes of yoga right there in her hospital room.

 

 

Also on Sunday, Anna's lifelong friend Emma spent several hours at PCH visiting with her buddy.  It was wonderful to see them both play and laugh like seven year old girls should.  

 

 

 

Just yesterday, Anna was finally allowed to leave the confines of her room for the first time.  With mask, gown and gloves she did four laps around the wing on a modified bicycle in the morning and another four on a scavenger hunt in the evening.  That was sandwiched around a school session with the wonderful “Teacher Mike”, an education specialist at PCH.

These moments have brought Anna energy and inspired us with hope and light at the end of the tunnel.

Anna might not be that far off from going home - perhaps a week or two.  The doctors want to get to the bottom of what’s causing her so much abdominal pain.  Today they will take a closer look at her enflamed gal bladder which may be the culprit.  Once they are able to treat and manage her pain then a plan for discharge will be on the horizon.  Then a whole new set of challenges - including almost daily visits to the bone marrow transplant clinic at the hospital - but we’ll gladly make that trade to be able to have our family under one roof again.

Finally, thank you to our dear friends Carrie and Brian Fox, and their children Sophie and Katy, for organizing a fun run in Anna’s honor this Saturday in the D.C. area. We only wish we could be there.  Here’s more information:

https://www.eventbrite.com/e/allinforanna-family-fun-run-tickets-27286034263?utm-medium=discovery&utm-campaign=social&utm-content=attendeeshare&aff=esfb&utm-source=fb&utm-term=listing

To be honest, I’ve hit some very low moments over the past week or so… times where I’ve felt sorry for myself.  All I’d need to do to snap out of that self pity is look over at Anna fighting through a bout with nausea or scraping herself out of bed to do her physical therapy.  To borrow a line from a good friend it’s like “a frying pan to the face” to realize if she can win this battle then certainly I can find the strength to get through these days.  If I could trade places with Anna I’d do it in a second.  But in all honesty, she’s the one who’s built for this fight.  I’m just a cheerleader along for the ride, in awe of a seven year old warrior.

 

Tim

Comments

  • pbolno

    Your depression is well expected. It is so difficult to witness your child being so ill. There is beauty in every sad moment - you see it when you see Anna smile. Focus on these moments of joy; albeit if they are brief as better days are coming. Maybe a Cardinals win this weekend will bring a smile to your face, too. Hang in there - we are all supporting you all. Phyl and Gary

  • vvsmith

    I guess that analogy says it all, doesn't it? I know when you're in the thick of things, like Anna's illness, it's hard to see the flickering light at the end of the tunnel, but it's there. You both need to remember to clear your heads, everyday, whether it's a run or yoga, to keep that depression at bay. No guilt...ok? Anna needs you both to take care of yourselves so that you can give her all the love and support that she needs...kids are so intuitive, so she'll know if your tank is running low. After all...she knew to ask to do yoga! She's filling her own tank so that she can go the distance! That little Warrior Princess is one amazing little girl! But you already know that, don't you? Love to you all from Bend, Oregon...Auntie Val ?

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