B is for biopsy
It’s been — a week.
And we are half-way through it.
Adahlia practices flushing the central line of her new stuffy puppy given to her by the Child Life specialists at Seattle Children’s on Monday.
Today, Adahlia had an infusion of Iohexol to check her central line and do a very specific evaluation of her kidney function. We showed up not realizing we’d be at the infusion center for nearly 6 hours as they measured how long it takes for her kidneys to clear the medicine from her blood… but, hey. As far as hospital days go, today is an easy one.
Yesterday, well, it was a very upsetting day. It is one thing to theorize and make a difficult choice, and quite another to actually carry out the action. (I suppose that’s why there are a million proverbial arm-chair quarterbacks for every actual one, and many millions more people wearing camouflage than those who actually take an oath to serve).
This week has been a reckoning for Adahlia and I. It is incredibly hard, as a mom, to hand over your very loved child to surgeons for serious procedures that feel strangely… elective. Remember, Adahlia doesn’t “seem” ill. She plays sports; she gets all-As; she loves nature and fashion and adventuring. We’ve had to come to grips with the reality of DBA and to weigh - one final time - if the risks of transplant and the future we hope to gain from it really is worth it. If DBA really is that dangerous. If her future really would most likely be better if we can have a successful, low-complication transplant now.
I was allowed back with her into the operating room to be with her as the anesthesia slowly put her to sleep. After she fell asleep and I was shown out, the door to the operating room shutting behind me, it was all I could not to turn around and say, “No! Don’t touch her! I’ve changed my mind! We aren’t doing this!”
But, I didn’t do that. And the procedure went very well - it went perfectly well and quickly and smoothly. Her surgeons are clearly experts in their fields. She did have some pain yesterday and since walking was painful, she rode in a wheelchair for the first time in her life. “Now I know how it feels to be in a wheelchair,” she observed.
If nothing else, this week has been powerful for emotional and personal growth. Adahlia not only has gained even deeper compassion, but also greater advocacy abilities for herself. For example, she was upfront with the anesthesiologist about her concerns and fears regarding yesterday’s procedure. The anesthesiologist gave us some options for anesthesia, and Adahlia had the final say on what combination she wanted to use. Today, I overheard a nurse asking another if it would be okay to let me (the mom) step out for a minute and leave Adahlia in the infusion room with just the nurse call button. “Oh yeah,” the second nurse said. “Adahlia is 10 going on 18.”
She isn’t, of course. But she is certainly making a name for herself as a kiddo who knows what she wants, who knows a lot about her own care, who trusts in her own reason, who asks timely questions, who is invested in getting the right care, and who is willing to share what she thinks and feels.
Today, Adahlia is recovering well. In fact, I just asked her and she says her pain is “not that bad” right now, a 3/10.
Please think of her tomorrow morning around 10:45 pacific coast time (1:45 EST), when she’ll be undergoing a bone marrow biopsy to make sure there are no surprises and that her bone marrow is still doing what we think it is doing (i.e., not making red blood cells). And sympathize with us over the fact that she has a dental appointment (!!) after it.
<sigh>
Thank you for being in this with us. We value your love and support.
