Some of you have told me that you can’t access my blog posts about The Teen’s road to recovery from her bone marrow transplant at our COTA site. I usually post the links on my Facebook page, but I’m going to re-print them here as well. Her journey is our whole family’s journey, and we’ve all changed forever. You’ll see some of the changes in both this blog, and my secondhand style.
* * *
I know it’s been a while since we’ve posted. Sometimes minutes, hours, and days pass in such a blur of activity, I turn around and find the months have changed – but I’m still stuck in the last one, at least in my head.
|The Teen in June 2013
For months, our lives have revolved around The Teen’s transplant, and all of the necessary care-taking activities and home-preparatory tasks that go with it. As we approach the 100th day marker post-transplant, I can honestly say we’re all grateful – but tired, so very tired. I’ve started telling people who ask that this is the hardest miracle we’ve ever experienced.
More than anything, The Teen just wants to go home. She wants the Hickman catheter, now only 50% functional, removed. Lab draws from the catheter are nearly impossible for everyone, whether it be parent or experienced nurse. The last couple of draws have been done via peripheral stick.
Still, even a partially functional catheter is a fact of life for a while longer. Minorities who receive cord blood transplants from mismatched donors are at the highest risk of post-transplant complications, including Graft vs. Host Disease. Her attending physician is conservative – when he says she can go home, we’ll know it’s truly the optimal time.
We had hoped for even a day pass soon, which meant an even more intense flurry of activities around our home this week, including getting the carpet and duct cleaners in. For months now, when I’m not in Durham, I’ve been at home, cleaning. Yes, we have pets, and our small home needed a good spring-cleaning, but I’m thinking of this as more of a life-cleaning. On the plus side, I’m getting in the best physical shape I’ve been in my life. Sometimes I imagine myself running in a half-marathon, wearing rubber gloves, and pushing a vacuum cleaner while simultaneously sani-wiping every surface along the way. (I don’t think I’m getting a Nike commercial out of this lovely image, huh?)
Even though The Teen is doing well for a recipient of unrelated cord blood cells, the days are still long. Catching up on three online Advanced Placement classes is no picnic. Self-administering insulin while counting carbs – yet still trying to keep weight on – take even the comfort of most comfort foods out of the picture for a while. This week, hearing that the wonky, hated catheter stays in for longer than hoped, and that the much-desired home pass is still a bit in the future, wasn’t easy. A long sleepless night from a flare of symptoms, and an unscheduled day long clinic visit weren’t highlights of the week, to say the least. The necessary isolation due to her still low lymphocytes is frustrating – and honestly, kind of soul-sucking at times.
Most of the parents of bone marrow transplant patients will say the same thing, “It’s baby steps all the time, a few forward, then a few backwards.” Sometimes there are signs of amazing progress, followed by the complications inherent in growing a brand new autoimmune system.
So if you haven’t heard from us, we’re taking baby steps – or sometimes, running, running, running, running, wearing rubber gloves, spreading bleach ’round like peanut butter, and wearing out the motor on the vacuum cleaner. Or picking glass out of a window broken by a furniture mishap. (There is a country music song in here somewhere.)
Godspeed on your own life journeys, and please know that we’re so very grateful for your interest in ours.
Love, peace & grace,