It's another long day here at clinic. It took awhile to get Fionn's chemo meds, so we are just getting started on our chemo regimen. Today Fionn will be receiving Vincristine and PEG-Asparaginase. Although Vincristine is a quick "push" into Fionn's port, the PEG takes 2 hours to drip and another hour for observation afterwards. PEG can also be a nasty drug in terms of its side effects, and these effects are cumulative. This means that, although Fionn has tolerated PEG beautifully so far, the doses build upon each other. You just never know how he might respond from one treatment to another. The good news is that today is Fionn's last dose of PEG...ever. Oh how I love it every time we leave one more drug in our dust!
Today we also learned that Fionn's counts are super-low. His ANC is 40, and his platelets are 22,000. Hemoglobin is 7.7. Although his platelets are not low enough to require a transfusion (10,000 and under = transfusion), they are low enough for Fionn to be in a "precarious spot," according to Dr. A. Low platelets put Fionn at risk for a brain hemorrhage if he was to have a head injury. The chance is 1%, but it's still there. Dr. A said that Fionn should keep one foot on the floor at all times during the next couple of weeks while his counts are bottoming out. This means no running, no jumping, no climbing, no wrestling. We are even supposed to limit car rides because it puts Fionn at a risk of getting in a car accident.
Ugh. I seriously want to wrap my child in bubble wrap. Conor and I are definitely considering having him wear a bike helmet at home because Baby Brother has a nasty toy-throwing habit right now. We'll see.
So I'm having a internal dilemma about preschool right now. Fionn usually sits pretty quietly at school except when they are on the playground. And he's already missing 2 full weeks starting next week due to the radiation. I just hate for him to miss another full week. But is it worth it to take the risk? Probably not. I'm just debating this in my head right now, and obviously Conor and I will continue to talk about it when I get home later. If he stays at home, I am also wondering how on earth to entertain both boys this week when their needs are so very different. Deaglan needs to run and run and run. And Fionn...well, he can't. Which is worse? The risk of school friends or the risk of his little brother's boredom leading to toy attacks? Hard to say.
Keeping Fionn relatively calm this week will especially be a challenge because he seems to feel great right now. His energy is high, and his mood is playful and good. We had a great weekend. Last Saturday Fionn and Deaglan had some "Crimmins Boy Time" with Daddy and hit up the Playseum in Bethesda. Here is a pic of Fionn with a feathery friend.
We have an update on Fionn's radiation schedule too. We will begin treatment on Tuesday, February 3rd. There will be 4 treatments the first week and 4 the following week. My wonderful mom will be arriving on February 2nd which will be such a help. Our appointments are at 8 am in Baltimore, so the logistics of finding care for Deaglan so early in the morning would be a wee bit challenging. We are very grateful to Mom for her assistance -- and we are really looking forward to spending time with her!
It has been very interesting to see Fionn's reaction to the upcoming radiation treatments. Our boy is PUMPED! Maybe it was the kindness of the technicians and Dr. Kwok. Maybe it was the cool futuristic-looking equipment. Or perhaps it was the promise of a Rescue Bot following treatment. Whatever is it, he has absolutely no anxiety about the radiation whatsoever. In fact, this morning as we packed up our bags for clinic, Fionn expressed disappointment that today was not the start of his radiation treatments. It went something like this:
Fionn: But Mama, I thought we were going to the radiologist today. To get the radiation in my brain. (He points to the crown of his head with his fingers like no biggie).
Me: No, Fionny, that doesn't start until next week.
Fionn: (Sighs and looks crushed) Okay, I guess I can wait a week.
He can hardly contain his excitement, folks. Meanwhile, I am having nightmares about the whole thing. It definitely puts the whole thing in perspective doesn't it? Man, kids are so resilient. Blows my mind sometimes.
Thanks as always for your support and love. We are so grateful for it!
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