Ok, for the most commonly asked question: “When are you coming home?” The answer, unfortunately, is still “We don’t know.” My optimism says maybe this weekend and Lacey’s intuition says we have a ways to go yet before they’ll be satisfied with his progress. The good news is that the blood pressure is finally under control. We haven’t received any training on the massive amounts of medicine we’ll have to give Eli at home and nobody has been throwing around the “D word” (Discharge) yet.
The good thing is that Eli is starting to be awake more, has started eating a little bit, and has shown more interest in getting out and going to the play room when they have activities. We are thankful for that because I think we’ve all seen every Disney movie ever made now and long for anything else to do besides watch movies. We are well known in the Patient Library on 8th floor. 🙂
Several people have asked about our stem cell transplant meeting yesterday. Many people just want to know what it’s all about. I’ll try to explain our 90 minute meeting in a paragraph or two. If you want to know even more, the term to Google is “Autologous Stem Cell Transplant”. Autologous is a key word, it basically means they will use Eli’s own stem cells that they will recover earlier in the process. Here’s a synopsis. We have 5 rounds of chemo to do (one week each and Round 1 is done). Between Rounds 3 and 4, they are going to do a “stem cell rescue”. They have a window of a day or two where Eli’s body will be recovering from chemo and will be making more stem cells. They will hook a machine up to his Central Line and pull blood out of his system, run it through a machine that spins the blood and takes out the good stem cells, then pumps the blood back into his system via the Central Line. They take these stem cells and freeze them for use later during the stem cell transplants (yes, plural, they have recently found that doing tandem transplants increases the chance of survival by 20%). After round 5 of chemo, they will prepare for the stem cell transplant. Hopefully the stem cells we pull after round 3 are neuroblastoma free!
The stem cell transplant will include major, major doses of chemotherapy. More than Eli experienced in all 5 earlier rounds combined. They also radiate his body from head to toe. This destroys all the blood cells, to the point where he can’t even create new ones. That is when they put his good stem cells back in. This is the real effort to absolutely rid his body of any remaining neuroblastoma cells. And yes, they do it twice because it’s even more effective, albeit extremely hard on his little body. Despite all of this, 45-55% of the time, the neuroblastoma cells return. That is a bad prognosis because that means they can withstand an insanely potent chemo and radiation treatment.
We saw the area where the bone marrow and stem cell transplant patients stay. Every room is HEPA filtered, the doors expel air when they are opened as opposed to drawing air into the room, and access is gained through a double set of sliding doors. Sorry, no visitors. The kids’ immune systems are essentially nonexistent at this point! This process is probably going to happen sometime around November/December if all goes according to plan. Eli will be here for 4-6 weeks for the treatment, and then they move him to the Ronald McDonald house in Iowa City for around 2-3 weeks because they need him close by for many follow up tests and to keep a watchful eye on him. Obviously all the time lines depend on how he does with the side effects of the chemo. Unfortunately we’ve been assured it will be very painful, but they will also do everything they can to make him comfortable with pain killers. It goes against every fiber of our beings as parents to agree to something that will be so painful, but we have been assured by the doctors that the alternative is to not do it and let the neuroblastoma win. Give you enough to pray about? 🙂

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