Just a quick one to thank everyone for praying for Eli this week. The treatments are just as painful as ever. His heart rate has gone up to 200 each day, but his oxygen has stayed up enough to not really need assistance there. For the people that are new to our CarePage, 3F8 treatments are extremely painful because the 3F8 highlights the neuroblastoma cells, but it also highlights nerve endings, which makes Eli’s white blood cells attack both the neuroblastoma and the nerve endings. They equate the pain to a woman’s labor pains and it’s one of the hardest things to watch your child go through. Eli’s typical way of dealing with it is to yell at the top of his lungs (which the nurses encourage because it makes him breathe hard and keeps his oxygen up). They try to drug them up as much as they safely can with Dilaudid (a narcotic), but it’s still very painful. Eli is always apprehensive when they put the 3F8 in his IV. He knows the torture that is coming. The pain has been lasting 30-45 minutes this time. Today we both passed out on the bed together after the treatment. Today he had hives pretty badly and they even lasted until after we had returned to the Ronald McDonald House.
Yesterday, Eli was pretty much out of it until 10-11pm. Then he wanted to eat and go shopping for Big Red gum! Tonight we got in earlier (we are on afternoon 3F8, which means we don’t show up until noon and get started anywhere from 1-3pm) and was back at the Ronald by 4pm. He wanted to make his own soda at the Ronald, but was quite grumpy the entire time. He just kept saying, “I just had 3F8.” He knows it’s an excuse that everyone will forgive him for. He wasn’t really up for playing because he didn’t feel well, but I could tell it was killing him to see his buddies Ber, Griffin, Sam, Coleman and Caden having a great time without him. He decided to invite his other miserable feeling buddy Kieran to his room to watch movies. It was almost humorous to see the both of them go from cheery to crying at the snap of your fingers. They can go from being happy to miserable with no notice whatsoever. I can’t imagine what the after effects must be like for these guys.
Eli has been complaining of leg pain the last 2 days. During the last round of 3F8, he had “pins and needles” in his hands and feet. He says it isn’t like that this time, it’s a dull ache throughout both legs. A leg rub usually appeases him. We are just looking forward to getting this week in the record books and getting back home. It has been great seeing some of our old friends again and of course getting to see NY Grandma Barbara. Thanks again for the prayers, we really appreciate it!
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