Yay! So, a family is willing to loan us their gerbils. I hadn't told Rene about the idea until today. He liked it! He asked what the gerbils' names are and when they could come visit. We'll pick a weekend soon and we can look forward to it.
Immediately after Rene relapsed a fellow parent from Oaklands contacted Luis and I to say that she had some fun things for Rene. We don't even know who all it is or how they got gifts together so quickly, but we have some people to thank at Oaklands. We even got to set some of the gifts aside to be from Santa, which was a nice help in that department.
Thank you, Oaklands elves!
I have ten seconds to get this written up before Rene gets out of the tub, so I apologize for how roughly written it's going to be. Rene was riding his bike on the bike trainer in the living room and I mentioned that he was like a gerbil in its wheel. Then I realized Rene has always wanted a hamster or a guinea pig. I don't want to commit to own one, but as part of the new no-regrets commitment, I've decided to try to make an effort on Rene's behalf. Does anyone have a hamster, guinea pig, or gerbil they will loan to us for a weekend? My wish is that it would be dropped off with all necessary supplies and instructions and training for proper care, then picked up again a day or two later. Anyone?
It's a gorgeous starry night and it gave me an idea of one thing that might be good for enjoying more. I remember being awestruck as a child by the stars on a moonless night when my family was camping. That night we were way up in the Cascades, having hiked in.
We don't have the equipment to do hike-in camping. Does anyone know of a place within an hour's drive of Victoria that has very little light pollution? I could plan ahead, using the moon's cycle and have everything ready to go. If we get a clear night on the new moon, we could bundle up and drive to see the stars.
Does anyone know of a place within an hour's drive of Victoria that has very little light pollution?
OK, so the conversation with Rene's doctor and nurse practitioner was heart-braking and it was hard to figure out what her words would really translate to as far as action taken by our family. It's hard to sleep and hard to concentrate. Rene is still going strong, it's just that the odds are strongly against him and she was finding a way to couch that into an area over which we have some power - into something that we can take action on. Rene might beat this relapse like he did the previous one. There is no known cure for neuroblastoma and all it will take is for the disease cells to become resistant to the chemo.
The MIBG treatment is kind of a last resort, but she is trying to get a jump on it while he's still healthy enough that it might work. She's looking for a way to mix the chemo with another treatment type. She says it sometimes works and I'm scared that "sometimes" is a euphemism for "occasionally" or even "rarely." I'm really freaked out that she has so few options. This is why I'm so happy that the Team 4 Hope is funding neuroblastoma research. There are only a few groups doing that and we have one right here on the island! It's desperately needed. I tried to figure out if the Canadian Cancer Society is funding some neuroblastoma research but I can't tell. It looks like they did in 2011. The James Fund does - always.
The Seattle Children's hospital wouldn't have set up the MIBG treatment room and program if it didn't have promise, but they're still figuring out how it works best and where the treatment might fit into a larger treatment protocol. You can't get MIBG treatment unless your disease is not responding to the standard treatment or you have relapsed. They won't put kids through it if the kids might be cured without it.
Anyways, so far so good. Rene is jumping, running, and having fun. If he weren't bald you'd never know he had cancer.
Scans went smoothly. Rene's results look about the same as they did before two rounds of chemotherapy. No new disease, no reduction. The fact that he seems to have no pain (I say seems because Rene has a high pain tolerance and is good at hiding it) would indicate that the chemo is working. Mature neuroblastoma is not malignant, but still uptakes the MIBG tracer that is used to scan him, so it's likely that the scans aren't yet showing the progress that has been made with the chemo.
Rene's doctor told us that she is going to refer Rene for high dose MIBG delivered radiation treatment. He might go to Philadelphia or to Seattle. I just googled Seattle MIBG, and this is likely it: http://www.seattlechildrens.org/healthcare-professionals/aar/2012/new-hope-for-neuroblastoma/. The doctor said it sometimes works.
She also said that she can keep giving Rene the chemo he's on for a few months (less than a year) before his healthy bone marrow won't be able to keep and that there is no other chemo that is as effective as the combination he's on.
She was pleased to see him so healthy and energetic. She advised us that working and making money are likely less important than having fun with Rene so we don't have any regrets.
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