Sorry it took me longer to update than I expected. There wasn’t really anything ground breaking to share. Wednesday went as expected. Eli was put to sleep, they did the radiation SIM (took about an hour) and then he woke up in a mood that would make Oscar from Sesame Street look like Prince Charming. I rushed him back to the room so he could destress a little. I was really glad they put him to sleep though, because when he was still out of it, I saw red marks all over him. Apparently they have to tape him up a lot for the mask fitting, which he would have HATED. Plus, the mold they use is really hot. Once he got over his grumpiness, it was the typical high energy Eli that wanted to run around and play in the playroom. Friday we went in for a 10am MRI of the brain that didn’t happen until 11:30am, which was odd because we don’t usually have to wait for MRIs. He slept through the entire wait and then was wide awake for the 30 minute scan. As always, he was as still as a statue. The reason for another MRI was so they could determine if that second really small lesion was anything to worry about. If it is, they will likely want to radiate that spot with a 30 grade boost as well as the spot of the original tumor.
There was MUCH debate over having Eli be the first kid to have the radiation dosage lowered from 21 grade to 18 grade. It is usually the Radiation team wanting to go higher with the radiation and the Neuroblastoma team wanting it to be lower. This time, it was Dr. Wolden, the radiologist, who was asking Neuroblastoma if she could go lower on the radiation because she thinks it could be just as effective against the Neuroblastoma as the 21 grade and of course less radiation, even if it’s a small amount, is better at preventing permanent side effects like slower brain development and such. I could tell Dr. Kramer wasn’t so sure, but mostly because she knows that 21 has been doing the trick for so many kids. However, she is putting her trust in Dr. Wolden that typically never wants to lower the radiation. So it was settled that Eli will be the first 5 year old Neuroblastoma 8H9 patient to get the 18 grade dosage instead of the 21 grade (they had done it for a 1 year old before). We are obviously praying that this amount of radiation will still be effective against the cancer, but also be less damaging to Eli’s body.
I didn’t get a call from anesthesia on Friday about a scheduled time on Monday, so I’m thinking that we might not be getting started on radiation until Tuesday. However, I am sure they will want to start chemo on Monday (irinotecan) because it is a 5 day chemo. It will take some premeds and then an hour infusion at the hospital. We are also back on Bactrim twice a day for three days a week. Normally we’ll come down and do the chemo after Eli has had radiation, but if there is no radiation on Monday, we’ll probably just go in sometime in the morning to get the chemo over with. Eli isn’t too excited about the prospect of chemo because he knows it makes him sick and it will make his hair fall out (especially in combination with radiation to the head). He doesn’t seem to be overly upset about it though since he knows he’ll get medicine to make him less nauseous and that his hair will grow back.
Other than that, we are keeping busy and having fun. Thursday we went to a great St. Baldrick’s party at FAO Schwarz. St. Baldrick’s is the event where people shave their head to raise money for Childhood Cancer Research and Barbara from Candlelighters, NYC has big parties every year for it. It was a big hit and the kids (and parents) had an absolute blast. We are planning on going to another one (an even bigger one) on Monday at the Boathouse in Central Park. We missed it last year because we were able to come home for a few weeks, so we’re excited to attend this year.
Thanks to everyone for keeping Eli in your prayers. We certainly need it during these upcoming weeks. Chemo and radiation are things we haven’t had to deal with in a long time and we aren’t exactly looking forward to being back in that world, but this is what dealing with this cancer is like. Ups and downs and doing whatever it takes to get rid of it once and for all. I’ll keep you posted on how chemo and radiation goes next week!
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