Day -3

Ethan finished his total body radiation today. He had eight sessions in total. Overall this week he has felt good. He’s vomited once each day, but it comes quick and then goes quick.

Even today he had a lot of energy through the late afternoon. We converted part of the room into a “gym” this morning. We used a long day bed pillow as a ramp/slide, that Ethan would climb up, jump up, slide down or surf down. He got some great exercise. Because of his preexisting pneumonia and poor condition of his right lung, the doctor stressed how important it is to keep him as active as we can throughout this process, keep him from becoming sluggish in bed, as much as possible anyway. We’ll see how long we can continue exercise like that. Other mornings, he gets out of bed and plays his Nintendo Wii (new type of videogame that’s very interactive), a very generous and thoughtful gift from Uncle Joe, cousin Graham and family. It’s the perfect motivation for Ethan to get out of bed…hit some home runs, play some tennis, or do a bit of boxing. It’s great in bed too, providing him enough movement to get his heart rate going and move his little body around.

Side Effects
His bottom showed a bit of soreness/skin deterioration for the first time today. Although he hasn’t had diarrhea, which is common by now, it could be mucositis starting from the bottom area, which it sometimes does before it is present in the mouth.

Ethan is changing color slightly, looking a bit tan, yet without that summer glow. I realized the other day that a lot of this kids on this floor look tan, but it’s a different kind of tan, a grayish tan…Ethan is slowly transforming to that color…caused by the radiation. Apparently, it will peak in the next couple weeks, and then after 60 days of so, it will start to peel/flake, and then his skin will be blotchy with old tan/gray spots, and new pink baby skin spots.

Remaining Treatment
He begins his 1st of two chemotherapy treatments tomorrow (Saturday) @ 10:00 a.m. He will receive a drug called Cytoxan (cyclophosphamide). It runs for only an hour. He will receive a ton of IV fluid starting 6 hours before this, to minimize damage it could do to his kidneys. He’ll then be forced (?) to pee every hour for 6 hours after he receives the Cytoxan, and then every 3 hours until the next dose on Sunday, to ensure it’s moving through his body. Sunday will be his second and last dose of Cytoxan, and I’m guessing we’ll do the pee thing all over again. We currently have two shopping bags full of urinals in the bathroom J….fun weekend ahead!!! It’s hard to predict how fast the side-effects will hit Ethan, as everyone is different. But we’ll find out shortly…

What else?
Eliot is scheduled for a 7:30 am bone marrow harvest on Monday morning. He’ll have to arrive at the hospital at 6:00 a.m. He will be under for about 2-3 hours. They will penetrate his bone about 35-40 times and take out a syringe full of bone marrow each time. This will mean only 2 penetrations to the skin though…not that is makes it any better. I feel though that he’s a tough little guy (who’s not so little!), and he’ll do really well!

Emma’s on her way home tonight after spending a fun-filled week at her cousins’ house, attending a week of Tennis Camp! It’s a great break for her to have excitement like that throughout these times. I am excited to have her home, even though I’m not there. I’m happy to know she’s cozy in her own bed. She’ll be able to spend tomorrow playing with Eliot, on his birthday…even though we already celebrated his birthday. I’m happy to know they’re together…It’s all about togetherness…