Monday, March 31, 2014

Eli in class. That's his chair on the front waiting for him.
Eli ponied up for his first day back at school. He knew what he wanted to wear, so he had on his special Ford Mustang jacket that was given to him at the car show by one of the club members, and under it was a BOSS 302 red t-shirt that says “I’m the Boss” (indeed). On his back is a Mustang backpack given to him by the Flat Rock Assembly plant in Michigan. I am anxious that his ANC was lower than it usually is to begin a chemo cycle, as it was on Friday, but, his teacher is - just on a normal basis - diligent in her efforts to combat germs and does so using only natural cleaners, no chemicals (we just try to get it done with something). And, I imagine the entire school is a little more aware than they usual would be knowing he is back. The school is small and he is loved there, so it will be nice for him to feel that somewhere besides the isolation of home. He was conflicted about going himself, though, because he has had it sweet around the house, no homework, playing video games. But I could tell he was trying not to smile when he went into the classroom, because he just doesn’t like to show emotion, but all the kids were so sweet and excited for him to be back. They feel an ownership of him, the whole school does (parents, too) and it is precious. I picked him up at 1230 hours and he said everything was “normal.” Made me smile and tear a bit, even now, too, though I don’t know if they are happy or sad tears. So, we will send him on, unless I think he looks pale or seems tired. As with everything, we will deal with consequences, good or bad.
Eli's tutor's husband is an artist, so he helped Eli one morning
 with an art lesson. He was very excited.
We are hopeful that we may have the house done within the month - it’s not April fool’s yet, so I’m confident to say that. This is a pretty busy month, as they all are for us. We have our Lads to Leaders convention at the end of the month for which all the kids have been working toward. We are at about the 10th hour with speeches and song-leading and puppet mastering. We are not the most adept at any of it, but we try within our boundaries and constraints of talent and time and attention. Eli and Vic will also be going to some of the 50th birthday party for the Ford Mustang being hosted by the Mustang Club of America in South Carolina. Those events are the same weekend, then Eli and I will go to Memphis for his next scan the next weekend.
Eli's little puppet team. Eli is second from the left.
I may be just more aware, but I see so many relapse posts, and posts describing second relapses and so many seem to be the Group 3 subtype (Eli is either 3 or 4 they don’t really know, but he is likely 3). Keep in mind, that I know nothing. I am in the broad bottom of the heap of knowledge and understanding, but I think the subtyping that researchers are honing will eventually determine that medulloblastoma can be separated out into different diseases, not just subtypes, which could be why the treatment works for one and not the other (something that St. Jude is in the news for now having discovered that some chemos are affecting the Group 3 in the lab, but not another subtype). But to make it more confusing, then one kid’s tumor is Group 3 and the treatment is working, so then why is that? St. Jude, in my opinion, which again is only from my limited understanding and experience with Eli, puts all it’s guns in one basket. The researchers come out of the gate blasting to get rid of it the first time. And, if you are siting in that patient room, getting the news for the first time that your kid has the most common, one of the most deadly cancers they know of, but know the least about how to get rid of, the next thing you want to hear is that they are putting all their resources and efforts to get rid of it. They do not expect it to come back because they are doing everything they can do so that it doesn’t. So, why pull effort and resources away from their first line attack and prepare for something that they don’t expect or want to happen. But, now, with so many relapses, they are at the drawing board to figure out, first, why it didn’t work, and, now, second, what will work on something that resisted the first line. Many pediatric cancer advocates argue that researchers and Pharma do not do enough to discover new drugs. It takes, I think a decade or longer to get a new drug discovered, through FDA, and to clinic. So, if you are the parent sitting in a patient room that you have sat in every week for the last 24 months now to learn that the horrible nightmare your child just endured didn’t work, the last thing you want to hear is that they are working on a new drug and it will be available in 12 years if it works. Eli doesn’t have a decade. So, using St. Jude as an example again, it is trying to take existing drugs that are effective on other cancers and see if they can get something that works now. There is such a balance of resources and efforts needed. I don’t really know how anything gets done. Anyway, just some thoughts from me.
Still living with the upstairs down, and furniture just stuck in
weird places, things balancing against doorways, propped up
against other furniture, but today our dresser mirror feel to the
wood floor and busted and I thought, ok, please let the bad luck
be retroactive.



The DVD drive is on-going! Collect for a class or group and donate a “recent” and “popular” DVD to be taken to the Memphis campus in April. Kids or teen movies rated G or PG. They can be dropped off at The Grasshopper in downtown Athens, or at Midway Cycle on Highway 72 in Madison, just west of County Line Road.

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