Next Steps

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Well, we are formulating some next steps with the doctors at MSKCC in NY and the doctors at Blank in IA. Notice, I didn’t say we have a “plan”. Those of us in the pediatric oncology world laugh at that word. 🙂

While the original results from Eli’s latest bone marrow biopsies looked good, the FISH test showed the same 3/8 chromosome translocation that Mayo saw (and it was very high – 96% translocated). The good news is that chromosome 7 had no involvement, which Dr. Prockop had told us would immediately require a transplant. So the plan for a bone marrow transplant boils down to “wait and see”. There is hope that the further away we get from Eli’s last round of Temodar (which we stopped in January due to a fever), the more likely the percentage of good cells will increase and the percentage of translocated cells will decrease. If that doesn’t happen and the mutated cells continue to rise and take over, we’ll likely need to go to a transplant. That decision won’t have to be made for several months, but meanwhile Dr. Prockop is having Lacey, Isaiah and I tested to see if we are bone marrow matches for Eli.

The wrench in the works is that Eli’s Ferritin (Iron) levels are very high. 2,200 when normal is 140. This can be dangerous to the heart and liver, but normally MSKCC would just watch this and hope for it to go down. What is the cause? Blood transfusions (of which Eli has had 12 in the past year and many more than that in the years before I actually started tracking them). There are a few options for trying to lower the iron levels, but some of them wouldn’t be good to do if we have to resort to a transplant later. So an oral chelation drug called Exjade is what we are going to try. It can have negative effects on the liver and on his vision, so we need to get some baseline tests done before we start the drug. Hopefully those can be done this week and we can get started on the Exjade soon. We will return to NYC for a full scan workup the first week in June to make sure the Neuroblastoma is staying away. At that time they will retest for translocation to make sure that isn’t getting any worse as well.

As an interesting side note, while I was having conversations with Dr. Prockop, Dr. Kramer, Dr. Rokes (from Blank) and Dr. Woods (also from Blank) last week, I received an email from the National Marrow Donor Program (NMDP). It was letting me know that I was a potential match for someone that needed a bone marrow transplant. I sent it on to NYC and told them that I assumed it was in regards to Eli, but they actually told me that they hadn’t submitted Eli yet, so this was someone different entirely! I haven’t heard a word from the NMDP since 2009 when Lacey and I got our cheeks swabbed at the Dance Marathon event, and now when we are being tested as matches for Eli, I am told I might be a match for someone else looking! Of course I called them back and said I’d be happy to donate if I could, so I should know more in 2-3 weeks if that is really going to happen. The doctors in NY and IA simply responded “wow” when they heard about it. Of course, I’m hoping that one of us will be a match for Eli as well, but we’ll have to wait a bit longer to find that out. Our real prayer is that Eli doesn’t need a donor at all!

It’s another sad time in the NB world as the Band of Parents President lost her teenage son who fought for many years ( Thanks to everyone for your continued prayers for Eli and for his buddies.

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3 Responses to Next Steps

  1. Colleen says:

    Still praying for that little guy and all the rest of you.

  2. BudWest says:

    I don’t think my reply from this morning came through. I will repost and add some more. Eli, I and the prayer warriors at my church Wesley UMC, Alex., VA are lifting you up in prayer.
    I attended Nick’s services last week.

    In Christ’s love,


  3. Kathryn West says:

    Sending prayers…….. he is such a little miracle.

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