December 7, 2017: Day +477 Post Transplant
Two years ago this week Anna became sick. She’s been fighting ever since. Anna exhibits all of the behaviors you’d expect from an eight year old – both good and bad – but also, she has a wisdom and grace that only a warrior like her could know.
Many people have asked how Anna is doing. I’m sorry it’s been so long between updates. For the longest time our answer felt like the same one… month after month. I’m happy to report Anna has made some big strides in the past couple months. Back in September she started a new treatment called ECP. She has responded very well. Over the course of the treatment Anna was slowly weaned off of her steroids, which carried so many side effects. Her graft versus host (GVHD) has been held in check despite coming off the steroids, which is what the doctors were hoping for. She’s in a holding pattern now to make sure the GVHD stays away, and then, they’ll begin to wean her off of the Tacrolimus – which purposefully suppresses her immune system. That’s another huge step towards returning to school, although, it’s still looking like it won’t be until next school year.
These strides have allowed for a few restrictions to be loosened. We got the ok to go to a restaurant where we can sit outside. For the first time in almost a year and a half Anna got to order from a menu and eat out. One night we even joined a bunch of friends and their kids at a pizza place with a patio. That was the closest I’ve felt to normalcy for her in a long time. Anna is allowed to be outside without a mask, as long as it’s a low pollution day. She rides her bike and plays in the backyard with the dog. Three of her friends – Abbie, Ann Marie and Emma – have been great at coming over for play dates over the past year, and have really helped keep Anna’s spirits up. Now, Anna can go to their houses as well. She even had a sleep over at Emma’s last weekend.
Emotional adjustment is still a challenge, although Anna has had some tiny victories in that area as well. She has been taking piano lessons for five months and her teacher held a halloween recital at her house for all her students. Anna was understandably nervous being around a group of kids for the first time in 15 months. She battled through her anxiety and knocked it out of the park when it was her turn to take the stage. The very next night she won best costume for her age group at our neighborhood block party (as Nancy Drew – her current favorite series of books). The slow return to normal activities has boosted her self esteem. This is not to say she doesn’t have her bad days. Sometimes, she feels as if she’s been sick her entire life with no end in sight. The reality is that she has been sick for over a quarter of her life, which seems like forever to an eight year old. But Anna always seems to look at the positives once she’s let out her frustrations.
Our families continue to support us in every way possible. We are blessed with that, and the support of all of you. Thank you.
Personally, It’s been uplifting to watch her improvement. To see the “new normal” inch a bit closer to the “old normal” is like seeing the light at the end of a tunnel. After the last two years… every little bit counts. We certainly don’t take anything for granted.
-Tim