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I went back and checked to see what I had written last time and realized that we have basically swapped one issue with another. The painful sores are gone, which is great, but they have been replaced by very bad stomach pains and nausea. At first it was just nausea, so we had him on ’round the clock’ nausea meds such as zofran, visteril, and ativan. The downside to those of course is that it makes Eli sleepy, so he slept quite a bit last week. It also didn’t prevent him from throwing up multiple times a day and not eating a single bite of food. After xrays and CT scans, they think that Eli is constipated, so they are giving him a pill twice a day to try to improve that. It seems to have started working as far as making him go to the bathroom, but I can’t say I’ve seen much improvement in his belly pain. He still need dilaudid rescues and hot packs on his stomach quite often. It’s truly a case of ‘if it’s not one thing, it’s another’.
As you may recall, this is how I ended our last update, “Obviously our huge prayer request is that we will see some response from this chemo and that the leukemia blasts would go down significantly to increase the likelihood of a successful transplant.” Well consider that prayer answered. Much to the poorly restrained surprise of most of the Doctors, Eli’s leukemia blasts went down from 14% to 0%. That’s right, no blasts found. This was the best possible scenario for Eli that we didn’t expect would happen. The Doctors were obviously quite pleased because the statistics of a successful transplant are significantly higher when you go into the transplant without evidence of disease. No Neuroblastoma was found either, which of course is great news that we can’t take for granted. So it seems that Eli has a very good response to this drug called Clofarabine. Interestingly, I discovered that Clofarabine was actually discovered and developed, in part, by researchers working at MSKCC. They licensed the rights to a manufacturer, which of course means they get a cut of any sales. Potential conflicts of interest aside, we couldn’t care less because it seems to work well for Eli, which is great. This drug will also be used during his transplant.
Speaking of transplant plans, here is what we are expecting. We are going to officially get started on Wednesday, December 28th (yes, the day before the ISU football players come, but it couldn’t be delayed even one day.) Eli will get 5 days of Clofarabine chemo. The next day, Eli will get a chemo called Thiotepa. The following two days after that, Eli will get a third chemo called Melphalan. This is the high dose chemo regimen aimed at knocking his socks off. All of his cells should be shot and he would be unable to regenerate his own bone marrow. That’s when you bring in the donor’s marrow. So on Friday, January 6th, Eli will get the donor’s bone marrow. He will also get two drugs to try to prevent Graft vs. Host Disease (when the donor’s cells attacks the body because it sees it as foreign) called Tacrolimus and Methotrexate. G-CSF is also given to try to stimulate the stem cells.
There is one decision we are still waiting to hear on and probably won’t know until tomorrow. Originally the plan was to include T-cells in the donor’s bone marrow to help fight off the remaining leukemia. The downside to doing that is that it increases the likelihood of graft vs. host disease and means you need more toxic medicine to try to prevent that. Since Eli is now going in with no visible leukemia, the team needs to decide if they should do the transplant without T-cells instead to help lower the toxicity. They will debate and discuss and let us know soon. I have no idea which way they will go as it seems to be tricky to know which way is the right way. All we can do is pray that God will use whatever way they decide to go for Eli’s recovery and healing.
I won’t bother summarizing the 8+ pages of side effects and risks. As you would expect, they are no fun to read and would make great fodder for a Stephen King book. The whole process takes about 3 months in the hospital and another 3 months right next to the hospital at the Ronald McDonald House. We did get moved into our private room over the weekend, which has been nice. The move wasn’t fun in any way, shape, or form, but I got it done and even decorated the room for the ISU football players to see when they get here. Major thanks to everyone who sent Eli ISU stuff to hang up. We received some amazing posters, pom poms, shirts, stuffed animals, foam fingers, etc. It was especially funny to get them from quite a few HAWKEYE fans (who expressed a bit of pain in making the purchases, but knew it was all worth it for Eli’s happiness.) 🙂
For those that have asked, we don’t know who the donor is and might not never know. From what I’ve heard, if you want to be put in contact with the donor, you can call the bone marrow donor registry one year after transplant and request to be put in contact. They in turn will contact the donor and see if he/she wants to be contacted by the recipient. If they agree, the registry gives you the donor’s email address and you can reach out to them.
Eli hasn’t eaten anything for over a week now (well, anything that he has kept down since his one slice of ham yesterday didn’t last more than an hour after the docs made him try a liquid medicine with completely predictable results.) His weight is dropping and the Nutrition department is getting pretty nervous, so I’m expecting them to want to put him on TPN soon. TPN would definitely help with his nutrition, but it will also make him throw up and too much TPN is dangerous for the liver (which is already stressed with iron from all of his blood transfusions and could get worse if graft vs host disease kicks in.) So it’s a hard line to walk. If his stomach wasn’t hurting so much right now, he could eat just fine and build himself back up before the transplant starts, but since everything starts on Wednesday, I think that ship has sailed.
Eli did receive a cool Christmas gift on Christmas Eve. He needed red blood and I noticed that this blood had a pink tag on it, so I asked what it said. It said that it was a donor directed bag, which meant that the blood that our friend Rich gave several days ago had made its way up to Eli. Rich has started putting Eli’s name on the blood and platelets he donates so he knows it will go straight to him. Since Eli has been needing a lot of blood and platelets, it will be neat to know that he’s getting it from a friend.
Christmas was ok. I could tell that Eli was sad to be in the hospital, obviously, but we of course tried to make the most of it. It was great to have Rich stop by as well as Grandpa and Grandma Carter and Aunt Olivia from Iowa. He was never in the mood to video chat with people, but a few called to say Merry Christmas and he would at least squeeze out a ‘Hi’. It didn’t help that he was feeling pretty miserable as well, but we’re obviously doing everything we can to get him feeling better ASAP. Thanks to Nate and Ingrid for the Amazon Kindle Fire tablets for Christmas. Eli and I have been enjoying those as well.
Many of you know that there was a benefit put on at a local BBQ restaurant in Ankeny last week thanks to a lot of work done by Eli’s amazing Kindergarten teacher (Miss Brenner) from last year at Ankeny Christian Academy and supported by our friends the Hendersons and the the whole ACA community. We heard so many great stories about how packed the restaurant was and how they even ran out of pork and beef at one point! 🙂 I was also told that the restaurant predicted that 90% of their patrons that night were there in support of Eli. How great is that? All of the money raised will go towards our travel expenses including gas and the $245/week for the Ronald McDonald House. Thanks to everyone for the continued support. We are continually amazed by how many people still follow Eli’s journey after all of these years.
I didn’t necessarily intend for this to be such a long update, so kudos to anyone who is still reading at this point. I just wanted to make sure that everyone was up to speed on the answers to prayers as well as the continued prayer requests of figuring out Eli’s stomach pain and obviously a successful transplant. I’m sure I’ll have a post bowl game update later on. 🙂