Anna Update: Grinding It Out

October 28, 2016 - Day +72 Post Transplant  

Anna is doing very well, all things considered.  Fingers crossed, the nausea and vomiting has been gone for nearly two weeks.  She has started to eat although her sense of taste is still a little off.  Her labs show great progress with the cell growth and so far the EBV virus that was doing all the damage is not showing any signs of resurfacing.  She is still experiencing shortness of breath and has some congestion - not unusual post-transplant. Still no hair to speak of, although there may be a little peach fuzz sprouting on her dome. Things can change in a heartbeat, but we are grateful for her progress.  

Anna continues to approach each day as it comes with a positive outlook.  Homebound schooling and the occasional play date have kept given her things to look forward to.  She is generally a happy kid despite her situation.  

From my perspective, this phase of Anna’s recovery has been the most challenging mentally.  The time before her diagnosis was excruciating - nobody wants their kid to be sick - let alone with a mystery illness.  When you hear doctors speak of life-threatening disorders, your world begins to fall apart.  But we were so focused on the practical matters of arranging appointments and tests that the emotional part kind of took a back seat.  

Once we received a diagnosis and plan, a sort of relief set in.  You have a roadmap, albeit daunting, but you are past the darkness of the unknown.

 The transplant and subsequent 45 days in the hospital brought its own set of challenges, but the routine was our master.  We knew what each day would bring, and, we had the doctors, nurses, therapists and child-life specialists by our side for support 24/7.  The phase from diagnosis to discharge was met with so much resolve and determination by Anna and the entire family that it was almost empowering.

 Now we’ve been home for a month.  Patience is tested.  Boredom creeps in.  The ‘big rocks’ have been moved.  It’s a grind-it-out, day-to-day marathon to stay sane and maintain a sense of normalcy.  Melissa is our anchor.  She has taken on the lion’s share of home care, hospital appointments and activities to keep Anna busy. 

We've been told Anna will remain under her current restrictions for another seven months or so.  The immunosuppressive drugs she's on to fend off graft vs. host disease(https://en.wikipedia.org/wiki/Graft-versus-host_diseasemake her susceptible to infection and sickness.  Maladies that would be a nuisance to you and I could land Anna in the hospital, faced with a major setback.

Throwing out a request…. please send any ideas you and your families have come up with over the years to pass the time on a rainy day.  We are trying to limit TV and iPad time but are running out of ideas.  You can direct message me or write them in the comments section of this post on Facebook.

We thank all of your for your continued messages of support, donations to COTA and most importantly, prayers.  We appreciate each and every gesture of concern and kindness more than you'll ever know.  Our friends in Phoenix are beginning to put together a fund raiser for Anna, tentative for early December.  My parents and others are hoping to organize one in the Philadelphia area for early next year.  Stay tuned for more information.  

In the meantime, keep Anna in your thoughts.  She's got a long way to go, but she was built for the long-haul.  She's the one who will help the rest of us weather the storm.

Tim 

Comments

  • Lori Hack

    My boys like the games Spot It and Double Shutter to pass the time - LOTS of family fun!

Leave a Comment