Round 1 of 3F8 Antibody treatment with beta glucan is OVER! Ok, so we still have one more day of beta glucan since we were delayed one day in starting it, but that has become pretty routine and easy, so no big deal. Right now, Eli is just sleeping off the pain meds. The last two days he has had more and more hallucinations during the treatment.
For the benefit of those of you that know the significance of blood counts and obsess over them, here’s where Eli was on Monday. WBC = 5.9, HGB = 11.2, Platelets = 231. 3F8, unlike other treatments like chemo and radiation, doesn’t lower your counts, so it’s weird to be in a situation where we aren’t looking at them constantly and worrying about them!
Our time with my dad and sister was a lot of fun. On Tuesday, they were able to witness a 3F8 administration. It wasn’t something they liked to see, but it was good for someone else to see what it was like. That night, once Eli was over his nap, we went to Toys R Us and did some shopping and of course rode the huge ferris wheel. We ate dinner at T.G.I. Friday’s in Rockefeller Plaza. The fried green beans are highly recommended, and hey they are healthy, right? 🙂 Wednesday after Eli was starting to sleep off the 3F8, Dad, Anna, Isaiah and I went to the American Museum of Natural History and made use of our membership there. That night, we came back to the Ronald and they got to witness a “house dinner” and see all of the other cancer kids running around playing. Your food review this post comes from Jeff Horn who highly recommends the hot sausage covered in sauerkraut from the cart on York and 68th Street. He said, and I quote, “I loved it.” I’ll take his word for it.
Now for the big news: Wednesday afternoon, Dr. Modak (who wrote this beta glucan protocol that we are on) said, “We have an update. This protocol actually doesn’t allow radiating the legs after Round 1, you have to wait until after Round 2. You can radiate his abdomen next week if you want to, but you might as well wait and do it at the same time as the legs, there is no harm in waiting.” We said, “Does that mean we have nothing to do until Round 2 of 3F8 starts on March 31st?” He confirmed that was the case and we immediately started making arrangements to get packed up and head for home! We are actually taking off tonight and should be home for nearly 3 weeks. We haven’t been “home home” for more than 2 weeks straight since June 26th, 2007 when drove to Iowa City for the first time. Packing all of our stuff that we have accumulated since Thanksgiving in New York has taken hours! Getting it all in the rental minivan is going to be VERY interesting.
As we were starting to say some goodbyes last night, we realized how many good friends we have made here. We are excited to get Eli “home home” and watch him be “a normal kid” for a few weeks. No flushing of “pipes” every day, no bi-weekly blood counts, and no daily cocktail of half a dozen medications (he’ll still have Bactrim on M,T,W). We will have to go in to the Ames hospital and get blood drawn once for his HAMA test. They gave me the infamous “HAMA kit” the other day and I opened it up to see what it included. It was nothing but an empty vial. Basically we have to get the vial filled on March 20th and send it back UPS next day air so they can see if Eli is HAMA positive or not. Obviously we will be praying hard that he isn’t so we can come back for 3F8 Round 2. They are also sending us home with 6 bottles of beta glucan to take once a day starting March 26th.
Please keep our buddy Zach in prayer as he is having surgery today to remove a tumor in his head. Also, our blastoma brother (Medullablastoma) in Iowa City (Coleman Larson) was supposed to start his stem cell transplant today, but yesterday they got word that the last test showed positive for tumor cells in the spinal fluid, so now they aren’t sure how they want to proceed. Thanks for remembering our friends in prayer as well!
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