The Mail Fairy!
Update:
Yesterday, we met with a new set of transplant doctors.
Believe it or not, Adahlia’s team here rotates once every 2 weeks. I was shocked when three new faces showed up in our room yesterday. Have we really been here for 5-6 weeks? Long enough to rotate through 3 separate teams?
It’s always a little disconcerting to have new providers. Physicians hold information and make important decisions. They also have different attitudes and mannerisms. Some docs have a quirky sense of humor - others are as hard as my Mother’s Day muffin.
Adahlia’s teams meet weekly (and share emails) about all their patients. They work together kind of like a large volleyball team, rotating through pre-BMT, inpatient, and post-BMT positions. It was clear that her large team has been discussing their own concerns about her transplant. They asked me, “how does she…” nodding at Adahlia… “feel about all this? Does she still want to do BMT?” They mentioned how sorry they were that transplant would now impact two of her childhood summers and acknowledged that childhood is short. They agreed it was best to remove the central line to give her as much of a summer as possible before we restart testing and procedures in mid-July.
They used the word “elective” when they discussed her BMT - which was both flooring and gratifying at once - because it illustrates the complex nature of it. Some think Adahlia could live on transfusions “indefinitely.” But could she? Really? The truth is, we don’t know how much longer her body will tolerate transfusions. Meanwhile, transplant is best done before adulthood, before complications from transfusions become too severe.
Adahlia vs. the infusion pole (Mar ‘24; SC)
Who would “elect” to take on the risks and isolation and pain of a transplant?
Only the very brave and very desperate.
Only someone who is willing to fight for the life she wants.
Only someone like Adahlia.
Doctors are people, too.
It was clear from our talk that the doctors aren’t going to transplant Adahlia haphazardly. They only want to do this if they have the best possible donor. The best possible shot of a super-successful transplant. They are willing to shelve it and come back to try again another year. Part of me suspects that they look at her and are a bit scared, too. She’s a smart, active, and funny kid. If you didn’t know her lab values, you’d never know that her bone marrow is failing to make blood. Her vitality is SO strong. She seems like someone with a bold and impactful future. It seems like this isn’t really necessary. It seems like it must be a mistake. The more you get to know Adahlia, the more impossible it is to believe that this is necessary at all.
I think there’s a part of them that would be relieved if we don’t go forward with it. They don’t want to do anything bad to her. They don’t want the medicines to have any bad effects for her, or for her to develop side effects or other illnesses as a result of transplant that would take away from her quality of life... which is frankly, quite good. They do want her to be free of DBA and transfusions. It’s so complicated.
So, they want on her board. I’d wager that their conscience needs her to be on board. If Adahlia doesn’t want to do this, we won’t do it.
But “electing” transplant or not is a very grown-up decision for a 10-year-old child.
Visits from “the mail fairy”
Before we go out to the park this afternoon, I’d like to say a hearty and heartfelt “thank you!” to our friends and family who have already sent cards and packages.
Adahlia LOVES her Pusheen stuffy (thanks, Jeff!) and all the weird and wacky Japanese candy and toys that accompanied Pusheen’s royal squishiness.
Pusheen had a blast going to the hospital with us and looking at the hospital fish.
While on the inpatient floor, a boy approximately Adahlia’s age (also clearly going through cancer or other chemotherapy treatment) asked Adahlia, “Is that Pusheen?!?”
We both answered, “Yes!” and “It sure is!”
His face lit up as he replied, “I LOVE Pusheen!”
“Me too!” Adahlia said enthusiastically. Then she broke into a conspiratorial grin. “I’m going to throw him at the doctor’s heads!”
“Ha-Ha!” the boy burst out, doubling over with glee at the idea of such sweet revenge.
Apparently, there’s more than one way to be a hero.
Thank you, again, for all the love and support
Adahlia isn’t your ordinary kid when it comes to school.
She actually loves school.
And she was SUPER mad when she realized that she could have finished out the school year with her teachers and friends instead of leaving at the end of 3rd quarter.
She was SO sad and mad when she realized she could have earned her “All As” certificate and been recognized during the end of year awards ceremony after all. (Only one person earned the honor in her homeroom last year, and she was determined to be that person this year.) She’s so disappointed to miss Field Day. (I am too - I volunteered at the last one).
We’re sad she was only able to play a few games of soccer with her team this past spring. And that she wasn’t able to be in the classical ballet performance of Aladdin (you should buy tickets - it is in just two weeks)! It really stinks that she had to say goodbye to her pets two months earlier than necessary, and she was pulled out of her life for…. what?
It’s at these times that we acknowledge “this stinks” as much as horse manure and worse than cat poop, and then return to gratitude for what we HAVE been able to experience.
And gratitude for the love and encouragement we’ve received from friends.
You all make these sour lemons a little sweeter.
And she is SO excited every time she gets a package or card.
We love the personal drawings, watercolor paintings, and short notes and postcards.
We turn our key in our mailbox every single day. :)
Please continue to send little notes.
We still don’t know when her central line will come out - it will be sometime in the next two weeks. We haven’t heard back yet from the donor and their transplant center, so we have no idea if the donor is still up for being Adahlia’s donor. We’ll probably find out in the next 2-3 weeks. During that time, we will continue to monitor her labs and get transfusions at Seattle Childrens, keeping the RMD House as our home base and mailing address.
If you’d like our mailing address, please send us a little note via our contact form.
As we wait to hear from you, we’ll keep our spirits up by reminding ourselves that there have been highlights to this adventure, too:
While her classmates were in stuck in hours of mandatory state testing and the local Seattle kids were riding home in school buses, she was playing cards alfresco.
Education comes in many forms.
More soon…
Love to you and yours.
