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I failed to mention last time that we were heading to NYC for a full workup on June 7-9. Anyone following Eli’s Twitter updates obviously knew and they also know that the results from his MIBG, MRIs, and CT are clear (no evidence of disease)! We are definitely thankful for that. The real stress point however, is the bone marrow results which we won’t have for a little while. Obviously we are praying that those show NED as well, but we are also hoping that it shows less translocation of the chromosomes to indicate that maybe things are improving in that area. It’s impossible to predict what will happen as Eli has a cough now, and so his counts are staying low (he’s technically neutropenic right now). Now that we have been off of any chemo for 5 months, his counts should definitely be recovering, but they don’t seem to be. So these bone marrow results are pretty critical in helping determine if a bone marrow transplant is on the horizon.
Speaking of bone marrow transplant, we have officially ‘formalized the search’ for a match for Eli as none of us were perfect matches. Of all of us, Lacey was the closest match, which Eli points out is proof that he’s a momma’s boy. Indeed. So the search has been expanded to the entire bone marrow registry. Thankfully, it appears as though finding a match for him shouldn’t be too tough. They test for 6 HLA types in the registry, although there are a total of 10. So they found 6 people that had all 6 HLA types that match and had them go into their local clinic to have more bloodwork done to see if any of them are a perfect 10 out of 10. We should find that out in a few weeks. All of this is being done “just in case” we have to proceed with a bone marrow transplant.
As you may recall, Eli’s Ferritin (Iron) levels are extremely high from all of the blood transfusions (something we discovered thanks to Dr. Rokes at Blank in Des Moines suggesting we test him). Since we started Eli on an oral chelation drug (called Exjade), the doctors wanted to get a baseline iron level test on Eli’s heart and liver. This was a specialized MRI that they couldn’t do at Memorial Sloan Kettering, so they sent us up the street a block to Weill-Cornell Medical College to have it done there. When we showed up for our appointment, they told us that their MRI machine was down and they’d have to reschedule us. The only time they had available was Wednesday night at 9pm! Yeah, that’s a pm, not an am. I actually thought it would work out perfectly since Eli typically sleeps through his MRIs anyway. Having a 9pm MRI would all but guarantee that he’d sleep right through it. He seemed happy with this plan as well, but it all changed as we were walking into the room for his MRI. The tech explained that he would have to pay attention to the breathing instructions that the machine gave him. I asked the tech if he really had to follow those since the CT folks always told him it didn’t matter. He said it did matter because if he didn’t hold his breath when told, the pictures could come out blurry. So that was understandably upsetting to Eli, but then it was topped off when the guy put heart monitors on his chest. Eli can’t stand those since they are so sticky, but he rolled with the changes in routine very well. Did I mention that MRI’s take 45-60 minutes? I always sit in the room with him when he does his MRIs, so I watched his chest rising and falling to make sure he was holding his breath when instructed. Sure enough, whenever the machine would say “Breathe in”, I would see his chest raise. “Breathe out” and his little chest would lower. Then it would say “Hold your breath” and I would see his chest stay perfectly still for anywhere from 9 seconds up to 24 seconds until the machine would say “Relax”. I held my breath with him every time and some of them felt like an eternity, but he did fantastic every time. He even held back coughing when he really had to. I was very proud of him as he did such a great job on all three of his MRIs this trip! I haven’t heard back on the official results, although Dr. Basu did say that she saw the report and it indicated high levels of iron in his heart and liver, but that was expected. It was essentially a baseline so we can see if it’s going down after a few months of chelation treatment. Another effect of the chelation has been a high bilirubin level (over 3), so we are watching that as well to see if we need to start another medication to counter act that.
Corporate Angels was able to help us get out there at the last minute. It’s always very stressful trying to use their services, but when it works out, it really saves us a lot of money in airline tickets. This time, they saved us $750 in airfare and from having to drive to Chicago for the cheapest flights. We are really thankful for that organization. We are also very thankful for Candlelighters NYC (Barbara) as they had a babysitting service for kids while the parents went to a Band of Parents meeting being held at the hospital Thursday night. We were able to learn about the status of some of the projects being funded by the Band of Parents at MSKCC from Dr. Cheung, Dr. Kushner, and Dr. Modak. It’s always extremely informative and exciting to hear what our donations are funding for Neuroblastoma. We learned about the status of Humanized 3F8 (they showed a picture of the vials, so it really exists, it’s just waiting final FDA approval), Turbo 3F8 (far more potent than regular 3F8), the vaccine, and other treatment options they are working on. It’s really great to see that our donations to the Band of Parents goes directly to funding new drugs for our kids (and it happens in an insanely short time frame, even though 2 years from beginning to end sounds like an eternity to parents looking for treatment options for their kids NOW).
I’ll leave you with some positive news. Eli is officially a 1st grader now! We were thrilled to get to see him walk across the stage and pick up his diploma as well as his award for being a great artist and for doing so much reading. Don’t ask where he gets his art talents from because neither Lacey nor I can draw to save our lives. I expect it’s due to years and years of practice in the hospital beds from the age of 3 and a half when he had nothing better to do than color and do crafts. 🙂 Obviously it was a huge milestone for us, but it was also a huge milestone for Eli’s doctors. When I told Eli’s primary Dr. at MSKCC (Dr. Kramer) about his upcoming kindergarten graduation, she wrote, “Thank you for always keeping us posted on Eli’s long distance milestones. Congrats on a big kindergarten graduation. I am sincerely choked up thinking about this event for him, knowing fully well what a successful war he has fought to help him achieve this special day. I will be thinking of him and your beautiful family on Thursday. Love to all (especially Eli’s wonderful mom, brother and the shining star himself).” I can’t tell you enough how fortunate we are to have doctors that care so much about Eli’s success. Our doctors in Des Moines have the same passion for making sure he survives and thrives and it makes all the difference in the world. It also means so much to have so many people like you that continue to pray for him and support us as we continue on this cancer journey. Thank you as always!
I am SO printing out this pic for my fridge!
Much love to all of you, my friends, but particularly to my little buddy. Sending nothing but prayers and positive thoughts!
Eli, you look great in your graduation picture. I know your mom and dad are very proud of you. It sounds like you did a great job during your MRI. Some of the adults couldn’t do as well as you do. I hope you and your brother have a wonderful summer doing things little boys enjoy doing together.
What a handsome young man. Good job, Eli. We’re so proud of you.
Grandpa & Grandma with Horses.
Hey Eli!! You are a very handsome young man!! I truly hope and pray you get better very soon!! You and your brother have a wonderful summer ok??
I will continue to pray that God keep the Horn family in His loving care.
WOW – what a fantastic job at those late night MRI’s!!! No wonder you made your dad so proud, Eli! Congratulations on your Kindergarten graduation.
Deb, from the Buffalo, NY area
That’s my guy!!!! Thanks for the update!! Always praying for you!!!
Miss ya, Bud!!!
Miss Brenner 🙂
To see that handsome boy wearing his graduation cap is heartwarming. I can only imagine how that makes you feel after experiencing such a long battle along side of him and what he has been through. He is one little warrior and you are his soldiers fighting right along with him. Congrats to all of you to reach this milestone in Eli’s life.
God bless you all.
Congratulations to Eli on graduating kindergarten! Awesome! Praying for Eli and the family as you await the results of the bone marrow testing.
Nate and Ingrid
Wow, love the picture of you in your graduation hat:) Congratulations!
We will be thinking of you and your family and praying for good results from the bone marrow tests.
The Becker Family
I love you Eli! you are the bravest boy I’ve ever met! Come back to our firepit soon okay?
You continue to be in my thoughts and prayers and congrats on the Graduation! You are 1 handsome boy! I look forward to more good news and good job on the MRIs too. You did an awesome job!
Saying lots of prayers! Eli — Congratulations on your graduation! You look so handsome in your picture!! Very proud of you, buddy <3
I’m so glad to have found Eli again. Super test results and we’ll be praying for the same on the bone marrow results! Congratulations on your graduation Eli!
Congrats Eli on moving up to the first grade! and its always great to hear good news. Thinking about you guys!