I’m praying that Jude responds well to the spinal tap tomorrow and that we get confirmation that the cancer hasn’t spread to the spinal fluid. The last spinal tap he had when he was 3-1/2 didn’t go well. In fact, he thought he was going to die and said, “I think this day we’re going to heaven.â€Â When I asked why he thought that he said, “Because my head hurts so bad.â€Â He even had to get put on anti-nausea medicine since he kept throwing up everything, including his anti-seizure medication, which was very dangerous since it went on for days. The poor little darling!
We got an email from Jude’s oncologist today saying that she wasn’t going to be meeting with us tomorrow after the spinal tap because she doesn’t work Mondays and is booked with appointments for her and her kids. Weird since she was the one whose idea it was to have the spinal tap tomorrow and then to meet with us afterwards to answer our million questions as we consider whether to pursue proton radiation treatment. Here my mom had made a special trip to the cities to spend the night with us tonight so that she could watch the boys for us tomorrow while we met with the oncologist. I guess we’ll meet with her later this week. But, this isn’t good from a timing perspective since we need to make a decision ASAP regarding radiation and I bet I’ll have follow-up questions for her.
Jude’s oncologist did respond to some of my earlier questions and provided summaries of the various research papers on outcomes of children with supratentorial cortical ependymomas. Overall, I was pretty scared after reading her summaries. I hate reading about the children who have died battling the same tumor that Jude has. It’s very, very frightening to think we could lose him at any time. It’s very frightening that there is almost no research in this area and almost no data to pull from since this type of tumor in the location Jude has had it is so rare. Certainly radiation is no guaranteed cure, but she has recommended it, to increase the cure rate, after looking at the latest research. There is only one family that is attempting to do what I wanted to do — resection, resection and wait and see (i.e, no radiation). So far, after the 2nd resection, that kid’s ependymoma has not come back but the follow-up is only 15 months and these tumors like to keep popping back up to 23 years later.
The radiologist told us that they only like to do radiation one time. It’s scary knowing that this tumor doesn’t always respond to radiation. This would be our one shot.  Although my decision would scare the heck out of me, I think I would decide to take my chances on the 2nd full resection being the charm and not pursue radiation treatment. But, I may let Andy make the final call. He said something tonight that makes sense — God gave us all these doctors and they are all recommending radiation to increase the cure rate so maybe we should just listen to them. I’m just worried that they are so worried about curing him of his ependymoma and not fully considering the can of worms that radiation opens up.
On another front, I’ve noticed that Jude isn’t himself on this anti-seizure medication, which is troubling.  The main side effect of the medicine is “irritability.” He’s like Jude on steroids. He’s so jittery and can’t concentrate. My favorite thing to do with him has always been to have him sit on a lap and then we take turns reading pages of the books he picks out (he always looks ahead and picks to read the page with less words on it). He can’t sit still anymore and flails about. I hope it’s just his body adjusting to the medicine and that he’ll be used to it soon.