April 27, 2017: Day +254 Post Transplant
It’s been a long time since we provided an update on Anna’s condition. We have been in a perpetual state of limbo for months now, waiting to hit a big milestone or hear of the next step back to normalcy. None of that has come.
This is not to say Anna is doing poorly. She’s just stuck in 3rd gear and we’re all riding shotgun.
She has a condition called GVHD (Graft Versus Host Disease) https://en.wikipedia.org/wiki/Graft-versus-host_disease . It affects her skin, mostly, and also keeps her white blood cell counts very low. Therefore she is still on full restriction – no public places (with the occasional exception of a few wide open outdoor spaces). She’s still homebound unless she’s at one of her two hospital clinic visits each week. Any trips outdoors require a mask. Anna still has tri-weekly visits from her teacher, Allison, as well as dance lessons every Monday from her buddy, Heidi. Occasionally a friend will come over for a play date. We’ve been told returning to school in August is neither likely nor out of the question. We’ll just have to wait more, and see.
These last couple months have been the hardest for Melissa and I. Annas home-care needs have increased. Her energy wanes. She is now on a steroid that will cause weight gain (the puffy face!) and other side effects. We so want our girl to be able to return to life as it should be for an eight year old. We yearn to be able to go out and do family activities on weekends. We selfishly want a sense of normalcy to the adult side of our life – dinners out, traveling, gatherings with friends, ect. We try our best to get out and about, but typically this means an outing for one or the other – rarely both.
The point I’m getting to is this: so what? We’ve dipped into the realm of feeling sorry for ourselves. Our daughter fights daily to return to health and we have become “victims”. Meanwhile, she has maintained her positive attitude and is generally a happy kid. Tiny moments are incredibly meaningful to her, and yet, we have become calloused to these moments, wishing we could go back to our care free life before this.
The silver lining is that we can control how we feel, react and respond to our situation. Hopefully we get some good news soon. In the meantime, to borrow a line from a new friend who recently lost a child to cancer, we can do our best to have “the most best days”. After all, Anna has been given a gift, a gift that has every chance of providing her with a long, healthy life. We just need to be thankful and realize that gift is one that requires patience, positivity and perseverance.
Love,
Tim and Melissa