November 14, 2016 – Day +89 post-transplant

This picture was from Anna’s first real venture outdoors, with the exception of a short round of trick-or-treating on Halloween.  Anna has been cleared to head outside for awhile now, but the mask that she’s required to wear was cumbersome and hot – especially with the shortness of breath she’s been experiencing since the transplant.  The weather has turned to nearly perfect over the past week or so, and Anna was ready for a little outing and some sunshine.  We played soccer, learned how to use Dad’s new camera, and chased the grandparent’s dog, Romy.  45 minutes out of the house… chicken soup for the seven-year old soul.

There have been other moments that provided glimpses of a kid just being a kid.  Anna has competed several drafts of her Christmas list.  I love this because she is looking forward – towards a future with happy thoughts.  She has enjoyed having her Uncle Mike, who recently moved to Phoenix from Philadelphia, close by.  He often drops by for a surprise visit to tease his beloved niece, and this makes her happy. Three sessions a week with Mrs. Johansson, Anna’s homebound teacher, are eagerly anticipated and have kept her mind stimulated. Anna has also enjoyed the activities suggested by so many of you, and we thank you for your ideas.  There are other examples, but these give you a picture of progress when it comes to Anna’s mental and emotional health.  She’s taken great strides amidst challenging circumstances.

As for her overall health – the long view is looking good. Cell growth is where it should be, almost 100 days out from transplant.  The ratio of her ‘old’ cells to donor cells is excellent, an important sign that the transplant was successful.  In the short term, Anna did come down with a virus that can lead to numerous complications for bone marrow transplant survivors.  Thankfully, it seems the anti-viral medication is doing it’s job.  There is a flip side, however.  The medicine can slow new cell growth and keep her counts low.  It’s a tricky balance, but the doctors are experts when it comes to the ebbs and flows of building a new immune system.  If the virus is undetectable within the next week or so, mission accomplished.  If it hangs around there may be changes in medicine which would require hospitalization.  We’ll take it and deal with it as it comes. 

We’ve been told that, around now, we as parents begin to process what we’ve just been through. I have noticed feeling as if I’m emerging from a fog – a months-long fog of isolation: head down, take-care-of-business, don’t let myself go ‘there’, don’t feel like talking to anyone.

Make no mistake – despite the bunker mentality, we felt your prayers, support and concern.  But it’s just now sinking in how remarkable our network of family, friends and co-workers are.  I hope to reach out to all of you in due time.

With gratitude,

Tim