Sunday, December 8, 2013

In honor of an SEC team heading to the BCS ship, Eli wanted me to show his Aubie autographed helmet that Aubie sent him when he was in treatment, and he wanted to send a big WAR EAGLE to Coach Mulzahn and the Auburn Tigers. For those that don’t know me, I am an Auburn alum, but Vic is a TN alum, so we are a little divided, but the kids (minus HG) and I have enjoyed following the Tigers this year. It was a nice distraction today to have the game to watch, and then watch the MSU Spartans open the door - another nice underdog success. Vic got to talk in more detail with Eli’s doc today on the phone. Eli has 5 nodules less than 1cm that we can see located in the frontal lobe and on the sides. He believes there are more not showing up. The cerebral spinal fluid is not showing disease yet, but he said that it will. The thing that changed today was that he said we could wait until after Christmas to begin treatment. I’m assuming that changed because the CS fluid isn’t diseased yet, so that tells him that it is very early in the growth. The nodules are also small enough and located in areas that they are not pushing on anything or causing any symptoms yet. So, we have a couple of weeks before we have to go to begin treatment. Vic and I will go to St. Jude on Wednesday to review the images and discuss options with the doc - which are basically none. Only 5% of relapse survive 5 years, and I think I’ve read that 5% is not Eli’s subtype. St. Jude has two chemo drugs they wants to try, and one is a new one that they’ve added to the protocol they are under now. So, Eli’s body hasn’t seen it yet so it will not have developed a resistance. There are only 7 kids with St. Jude that have tried this and it is my understanding that there have been two results: no change or a slowing of tumor growth adding a few months to survival. We plan to see how to contact at least three or four other programs that show promise in relapse (if we can find them), but we also plan to try, try, try as much as you can with a 9-year-old to strictly follow our homeopathic prescription. We have been lazy with it, frankly because it was hard, nevertheless we do not want to leave anything on the table. We only have a couple of weeks to do it now because once he starts chemo of any sort he will not want to eat even a chemically-saturated chicken finger.
We love Legos... and all over the floor is how we roll with them.
He will go to school just for a couple hours in the morning mostly because he loves his friends and teachers, but I will keep him with me so that I can push the diet. We’ve also got a couple of bucket list things that we want to do, so not having to go this week helps give us time before chemo weakens him. And, of course, it will be nice to have Santa come here instead of Target House. He got upset for the first time tonight. He was watching the game and he said “I can’t remember exactly what the chemo therapy part is.” I said, well, it’s when they give you medicine that kills cells in your body, it does make you sick and you will lose your hair.” He started to cry and said “I don’t want to lose my hair again, I just got it back.” It was pitiful and just devastatingly painful to see him cry. It is going to be a terrifyingly painful journey. Thank you so much for following Eli and for your pleading prayers that we pioneer the answer.

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