I don’t think I have the words to convey the shocking turn of events that has landed The Teen back in the Pediatric Bone Marrow Unit, a/k/a 5200. I kept thinking of all the humorous ways I could spin this into an entertaining read, as I’m used to doing as a blogger. Then I thought, “Lynne, this just isn’t damn funny.”
An ultrasound this week revealed that The Teen has a large blood clot in her neck. (I could bore you with the medical terminology but I’ll spare you). The cause was likely a series of unfortunate events, including her central venous line, the steroids she takes for Graft vs. Host Disease, and her pre-existing narrow blood vessels due to her Sickle Cell Disease. That last condition was one of the main reasons she was a candidate for a bone marrow transplant to start with – but the good news is that her blood vessels should fully recover within a year or so of a successful transplant.
The bad news is that another series of unfortunate events prevents our medical team from using the anti-coagulant therapy normally used to treat blood clots, at least for right now. That wonky central line, so hated already, and now a huge contributor to the problem, cannot be removed, due to risk of moving the clot. Interventional measures are on hold due to the high risk to The Teen – but would be implemented if the situation gets worse.
So what IS happening? In many cases, this type of clot simply self-resolves (again, I’ll spare you the medical explanation). For now, we watch and/or wait and see. Our family is playing an imaginary drinking game every time one of the many specialists comes in, evaluates The Teen, and then says, “Well, we’re just gonna watch it, and wait and see.” (If you feel super sorry for me, please bring a cocktail shaker and the ingredients for a Cosmo by the hospital, so at least one of us can turn this into a real drinking game…)
On the bright side, The Teen’s new bone marrow is doing what it is supposed to, slowly coming fully to life and working to make all the different components of her blood, at different rates depending on the type of blood cell. She looks and feels a little more like her old self, and is able to work on her virtual high school classes. Some of the lingering side effects of chemotherapy and normal complications following a transplant result in some days being much better than others, but other than being back on the unit for very close observation of the blood clot, and administration of IV fluids and antibiotics, she IS recovering. We remind ourselves that she is getting better, regardless of our relocation back to 5200.
Thanksgiving is The Teen’s absolute most fave holiday, mostly because of the fabo traditional feast we gleefully prepare and consume. What she was hoping for the most was a pass to go home to Winston-Salem for Thanksgiving, even if only for the day. Whether she’ll get a pass to the Ronald McDonald House, much less home, is very up in the air right now, but we remind her that we’ll count our blessings to be together as a family, that she is recovering, albeit slowly, from a transplant, and that we can still gleefully prepare and consume a feast no matter where we are.
‘Cause that’s how we roll.
We can’t thank you enough for following our winding path, and the many ways you’ve all supported us along the way. We wish you Godspeed on your own journeys.
I’m publishing our COTA blog updates here as well, for those of you that have said you can’t access them.