We’re at the 4 year post-treatment point in the treatment protocol.
Monday was the visit for the chest CT and labwork, with surgery follow-up and clinic visit to go over results next week.
The note at the bottom of the CT instructions hit kinda hard this time. It’s a reminder, right there on the screen that it’s a child that has been going through all this. Yes, she handles it so, so well -but she was nine when it started and is still so young.
In spite of having a great team working with our girl, the IV insertion didn’t go as smoothly as we hoped. The first poke hit a valve, which resulted in some arm pain that has taken the rest of the week to resolve. After the first not working, they called the picc team to give it a try. Assisted by the ultrasond machine, poke # 2 was successful, but was done where there was no numbing cream. So, it hurt, too.
It was encouragning to hear the worker in the CT room tell Joanna that she remembers her and that she’ll push the saline slowly. (years ago Joanna figured out that when the saline goes in fast it makes her nauseous, but doing it slowly helps with that)
These empty cups are a sign of great loved being shown to our girl (and to us). A friend gave her a gift bag for scan day. It was filled with a few of her favorite things, including a gift card to Dunkin. The friend knew about our love of the pineapple mango lemonade Dunkin sells, and they are available on the 3rd floor at Children’s. So, after having to be npo (or starving, as she calls it) all morning, it was great to go get a drink. Each sip was a reminder that friends were thinking of us and praying for us Monday. What a gift!
There just aren’t words to describe all the emotions we feel as we continue this journey. There are some really, really hard parts still. The mental toll of going through this is significant, and largely unaddressed by any of the protocols. We appreciate each of you that continues to reach out, to pray, and to check on us. It means more than you know.