Today was a relatively good day for Eli. He slept fairly well last night and today he was still pretty sore with belly pains, but when Toradol took the edge off, he was up for playing games and doing some activities. Unfortunately we are approaching the time that he can no longer have Toradol, so they will probably be turning it off tomorrow morning. Isaiah got to spend some time with us in our private room today as well, so it usually makes Eli smile when he gets to see his little brother. One of the surgical doctors came by and checked Eli out and said that he heard good bowel sounds, so that is a good thing. He said that we will aim to take the dressings off of his belly sometime tomorrow.
There are two more boys we’d like prayers for today. Our blastoma brother Coleman Larson (he has Medulloblastoma and is a twin with his brother Caden) got news that even after transplant his spinal fluid showed positive for cancer. That is always a blow to hear after you’ve been through so much. We know the stress of having to make decisions on what course of action to take for your kid, and that is the stress that Peggy and Scott now face. Please pray for them. CarePage Name: ColemanScott
Also, the President of a group called “Band of Parents” and his wife found out that their son, Liam, has relapsed. Liam is the same age as Eli and went through 3F8 antibody treatments at Sloan. He was declared clean and was off treatment for 4-6 months when they found a new 1-2 centimeter tumor on his kidney, which turned out to be Neuroblastoma, which Dr. LaQuaglia had to operate on. http://princeliamthebrave.blogspot.com/
Band of Parents was formed by a group of parents that asked a simple question to Dr. Cheung at Sloan. “Why aren’t better drugs available for Neuroblastoma?” The answer was, “Because it’s an ‘orphan’ cancer. Pharmaceutical companies are not developing new treatments because there is not a large enough patient base to make development profitable.” The parents responded by saying, “So it is just money standing in the way of getting our kids better drugs? No problem, we’ll take care of it.” They proceeded to raise $1M so that a humanized antibody could be created so that kids won’t develop HAMA. The doctors were quite impressed, and sure enough, the drug was developed and is in the testing phase. The drug is expected to be available the latter part of 2010 (pretty darn fast for the drug world). As the doctors have more ideas for curing Neuroblastoma, the Band of Parents raise money to make it happen. Their current goal is to raise another $25,000 and within 2 days of joining change.org, they have already raised over $1k! If you have any interest in helping support this group, I created a fundraising page that you can use to donate $10 or more online to the group. Band of Parents is 501(c)3 of course, so it is tax-deductible.
http://www.change.org/myfundraising/hornit
Click “Older” for a food review. Yes, I know we are in the hospital, but I actually have a food review for today!
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