Well, the first 3 treatments of 3F8 are complete. Honestly, it is going pretty much exactly like I expected it to. Monday was really bad, Tuesday was pretty bad, and today was marginally bad. If the trend continues, tomorrow and Friday will be slightly better. While the pain is definitely still there, it tends to last for a shorter amount of time as the week goes on. Everyone on the 9th floor knew that Eli was back doing 3F8 on Monday afternoon because everyone could hear him no matter where they were. He was told by Child Life once that it was ok to yell, and he has held on to that permission slip from that day forward. Monday was a very busy day, so we didn’t get back to the Ronald until 7:30pm. He was out of it all night, but would wake up enough to ask me to put hot packs on his feet. As the kids get older, they have more problems with residual pain in their hands and feet. Tuesday he had a CT at noon and then an MRI at 12:30pm. We didn’t end up starting 3F8 until about 3pm, but we were able to get back in time for dinner at the house at 6:30pm. Chirping Chicken was being catered and I think they have the best chicken in town, even though I prefer Dallas BBQ and Brother Jimmy’s BBQ for anything else BBQ related. Today we came in early because he has an MIBG injection at 1:45pm and an MRI at 5:30pm. His 3F8 started by 10am and then he rested while he got his monthly dose of Pentamidine. The MIBG injection didn’t happen until 3pm, but then we went right up to MRI to see if they could get us in early and the got us straight in, so we were done by 3:45pm and walked back to the Ronald through several inches of slush. All NYC schools had cancelled by mid afternoon yesterday due to the coming storm. Thankfully it’s only a 5 block walk between the hospital and the Ronald McDonald House.
I posted some pictures of our trip here. One of them includes a picture of Eli screaming through his 3F8 pain and one is of him staring off after his Dilaudid dose, but everything else is more “fun” than medical.
I talked to Corporate Angels and Midwest Airlines yesterday. At first, nobody was going to really be able to help us with a flight, so I started looking into Priceline.com where tickets out of Newark were about $310/each. Corporate Angels said they could fly us to Columbus, Ohio Friday night, so I went ahead and said we’d take that and just drive the 10 hours home from there. However, they called back later and said they had someone that could fly us anywhere we wanted to go. They could pick us up in Teterboro and fly us right to Ames if we wanted! We still aren’t sure how this all came about, but we do know that they have arranged to pick us up in Teterboro, NJ at 2pm on Sunday afternoon, so we should be home in time for Eli’s birthday on Monday! Obviously we’re praying that the weather holds out and that everything goes as planned so we can be home this weekend.
Please keep Eli’s good buddy Ber in your prayers. They found a new suspicious spot on his rib and they are going to have to biopsy it and try to figure out what it is and what the plans will be from here. That kind of news after scans is always disheartening, so please pray for Ber and his family. They will be coming right back to NYC after they just went home Sunday night. http://www.caringbridge.org/visit/ber
We also met a new family at the Ronald McDonald House this week from South Carolina. Their boy, Bayler, is 7 and is just starting 8H9 (he did the ch14.18 protocol at home as well as a stem cell transplant). They are a super sweet family and their site is http://www.caringbridge.org/visit/baylerteal.
There is another boy here named Mitchel that is starting 8H9 as well, so we have been giving them some ideas as to what to expect with the protocol. There are many new families at the house, but we were really fortunate to come to NYC on a week where several of our ‘old school’ friends are also here this week. As you know, Justin and Sam are doing 3F8 this week, but so are Morgan, Maya, Brooklyn, Grier and Nathen. We always love getting to see Chloe when we are here as well. I’m sure I’m forgetting someone, so my apologies if I left someone out. I know we are going to miss seeing our good buddy Griffin by a few short hours, so we’ll be praying that they have great scan results.
Thank you for all of your prayers this week. We have greatly appreciated it.
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