Bone Marrows

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I don’t even know where to begin. It’s been so long since I updated from scan week in NYC! Hopefully some people have been following along on the Twitter updates to see the most recent news, but I do feel bad for not updating sooner. The rest of scan week was interesting because Eli had a cough, so we were on ‘isolation’ and had to hang out in Urgent Care and in our room at the Ronald. In fact, the cough prevented Eli from getting bone marrow biopsies done in NY because it’s too dangerous to do anesthesia, so we elected to come home and do the bone marrows in Iowa at Blank. The note back from NY on the scans was three letters. NED (no evidence of disease), so we were very happy with that.

Unfortunately, the bone marrow results weren’t as straight forward. They didn’t show any signs of Neuroblastoma, so that’s the good news. The not so great news is that Mayo (which is where Blank sends the biopsies to be tested) feels that some of Eli’s chromosomes may be translocating. They noted this the last time and they think it may have progressed. The odd thing here is that NY hasn’t seen this and they do the same tests. NY feels that it would be rare for this to be happening to Eli, but they want to take precautions and bump up Eli’s bone marrows to be every other month rather than every three months. If it is true that this is happening in Eli’s bone marrow, the worst case scenario is that it could lead to something called myelodysplasia. To oversimplify things, it could essentially lead to leukemia, in which a bone marrow transplant from a donor would be required. Again, that is the worst case scenario and needless to say, we are praying it doesn’t come to that. Dr. Kramer said that this is something that sometimes they have to watch and it can come and go as the bone marrow struggles to keep up with making blood cells. Incidentally, Eli’s counts have been waxing and waning lately and since my last update, he has received red blood transfusions 3 times. Dr. Kramer would like to have her people do an analysis (not to take anything away from Mayo of course, she would just feel more comfortable having their eyes on it, which we agree with), so she asked us to bring Eli back just for a bone marrow biopsy at our earliest convenience.

SO, Eli and I will be making a very quick trip to NYC this week. We will fly out on Tuesday, do the bone marrows on Wednesday as well as have a chat with the bone marrow transplant doctor as a precaution in case it comes down to the worst case scenario, and then fly home on Thursday.

Obviously this translates to a prayer request quite easily. 🙂 Thanks to everyone who has been faithful for all of these years in following Eli’s progress. When we were in NYC last month, Dr. Kushner had mentioned that we should have a chat with the ‘long term effects’ doctor to explain the things that we’ll be dealing with in 5, 10, 15 years post high dose chemo and radiation. Things like growth, hearing, and brain development issues. He assured me that it was a good thing to be at the stage where we are talking about the long term effects, but of course we are praying this bone marrow issue is not going to turn into a severe one. Thanks for praying with us!