I was hoping that brain cancer was just something in Jude’s past and that it was just one really bad week a year and a half ago when he was 3-1/2. Since Jude’s littlest brother, Asher, was conceived in the brain cancer blur period, I had even convinced myself that it worked out for the best that Jude got the cancer since we wouldn’t have gotten beautiful little Asher without it. Our new reality is that Jude is not done battling brain cancer.
We went in today for one of Jude’s triannual MRIs and got the devestating news that his brain tumor is back. I’ve been so worried about it coming back since they always told us that if it came back, they would do do a resection followed by more aggressive treatment — including 6 weeks of proton radiation in some other state since Minnesota has no where to get such treatment. I hate the idea of radiation. The risks just seem too great to me — potential secondary cancer, potential vision problems, potential hearing problems, potential cognitive problems, etc. I hate the idea of my brilliant and amazing Jude losing functioning because of radition to kill some dumb smaller-than-microscopic cancer cells that just don’t want to die. I don’t think they’ll be able to convince me to go along with radiation without at least another attempt at resection only, unless, of course, tumor #2’s pathology is more aggressive than tumor #1’s.
I’m frustrated. I feel awful knowing that Jude’s cancer really never went away. Here I mistakenly thought I had a healthy 5 year old, just like a mistakenly thought I had a healthy 3-1/2 year old the first time the tumor appeared. It turns out that the bright spot they were watching on the MRIs and thinking was scar tissue from the first resection was really just the tumor back to attack. I hate that thing.
The neurosurgeon wants to do a functional MRI on Jude in the coming week, where Jude would have an IV to insert dyes to provide contrast on the MRI and where Jude would comply with the neurosurgeon’s instruction to touch this, do that, etc. Normally they never do such functional MRIs on children as young as Jude, but thought he could maybe handle it since his neuropsychological examination revealed that he has such a high IQ. We’ll see. Jude hates pokes and may just spend the time screaming, “Take out my poke! Right now!” like he did today after he realized they gave him an IV while he was, in his own words, “daydreaming” on nitrous oxide. The functional MRI would assist the neurosurgeon in determining how much of Jude’s brain can be removed while trying to get all the cancer cells that are visible under a microscope. They want to take out around the margins as much as possible without having a negative effect on function.
Jude will undergo brain surgery to remove the tumor likely in the next couple of weeks. The same neurosurgeon who operated on him 1-1/2 years ago will do the surgery. He was part of the team that stopped by to talk to me after the big reveal. I told him that I had been hoping that I would never need his services again. It sounds like the surgery should be simplier than the first time, since, kind of sad to say, the first surgery created a pathway through the brain to the tumor spot. The surgeon anticipates using that same pathway to get to this tumor that is located in the same place as the first one, unless the functional MRI reveals that the planned pathway would be too risky.
We haven’t told Jude the news yet. He knows he had a “head owie” when he was younger, but we never told him the seriousness of it and his memories of the week long stay in the hospital only involve great things like watching Astro Boy over and over and playing Kung Fu Panda on the XBOX. I’m not sure how we are going to explain to him that his owie is back and what that means for him.  Knowing him, he’ll hate the pokes, but love the TV and video game time.  I just wish he could be a healthy kid and that I could stop worrying about him.