Thread: 7 y/o with MDS
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Old Thu Mar 30, 2017, 07:51 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,498

Given how new this diagnosis is, and the lack of symptoms, have you sought a second opinion? I'm sure you don't want to put Eliot though multiple bone marrow biopsies, but the lab data could be reviewed by another institution, so you're sure what you are dealing with. After all, pediatric MDS is pretty rare and nobody should go to transplant, or start any other kind of serious treatment, unless it's clearly necessary based on a confirmed diagnosis.

If Eliot needs a transplant, why wait until summer? Once you find a donor, delays might give you more time to prepare, but it could also mean an increased risk that symptoms could develop or that the donor (if it's not Parker) could become unavailable. My wife and I thought we'd schedule her transplants months in the future, but the doctor advised us to start as soon as possible.

You may already know this, but you can look up transplant statistics at Be The Match.

I understand your dilemma about a transplant center. My wife and I had a similar decision to make between a treatment center fairly close to us and one that was hours away by plane. If we chose the out-of-state center, we would have to relocate our family (with teenagers) to another city for months, and lose the support team of our other family members at home. We weighed the treatment center reputations and statistics and found that either could provide excellent medical services, so we ended up staying near home. That was the right decision for us.

One thing we learned is that before transplant you want a doctor who is expert at understanding and treating the disease (MDS). In the case of children, you'd also want a pediatric specialist. But once you start a transplant, which disease you started with may be less important than how good the center is at the transplant process.

In your case, the web page section named Why choose St. Jude for your child’s myelodysplasia treatment? has some convincing arguments, but of course there are a lot of advantages to staying near home with friends, family, school, work, and the local services you know.

You might make some lists to try to imagine how you would manage the logistics if you were in Memphis. Would the whole family be there or just one parent? If Parker would be there, where would he go to school and how would he keep in touch with his friends? Could both parents still work? Could anyone else in the family come to help and/or manage things for you at home? Is there any insurance issue with going for treatment in Tennessee? Could you afford the living expenses? If you have pets, who would take care of them? Would you really have to stay there for months aftewards, or could followup care be at home if the hospitals coordinate with each other?

Working through these types of details could help you see just what would be involved. Moving would produce a lot of disruption in your lives, but in the long-term it will be only a temporary disruption, and you'd get through it.

Once you have your questions in mind, I would talk to both hospitals about the details. Ask Batsons about their experience with pediatric transplants. The main University of Mississippi hospital has performed many tranplants, but what about children? Perhaps you've already evaluated this, but if not, give them a chance to make their case. Ask St. Jude's how they handle out of town families. For example, there's a Ronald McDonald House there.

I hope some of these suggestions will help you.
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