7 y/o with MDS

[Craig Rushing]

Eliot my 7 yo was just diagnosed with MDS a couple of weeks ago. He has 0 symptoms at this time. Thankfully we caught it early, however, there is no way of knowing if it will turn to AML before having BMT this summer. We are scared to death about it, but we are hopeful that everything will go well and that between now and procedure that he won't develop AML. The Dr. says he has 0 blasts at this time, but can't predict if any will show up in the near future. There is a 70% chance that it won't turn to AML, but we are certainly worried about the 30% chance of him getting AML. We are currently at Batsons Childrens Hospital in Jackson, MS, and are happy with our Dr and the care we receive there. However we have a huge decision to make about who will ultimately care for our boy. We will have a consultation with St. Jude in the next couple of weeks, and I believe they will ask us to come there. Our dilemma is that if we go to Memphis, we will have to spend 30 days in hospital and then ~70-100 days around the St. Jude campus rather than at home. At Batson, we will be able to go back to our own home immediately after our 30 day hospital stay. If the treatment is the same, which I think it will be, at both hospitals, I would like to stay at Batson. I think that would be better for Eliot and our family, however St. Jude is a top notch facility and if anything happened to Eliot I would be second guessing myself, the rest of my life. We are hoping his brother Parker is a match and should find out this week, but if he's not we will be looking nationally for a match. They plan to do the BMT this summer. Please keep us in your prayers for us to make the right decision for Eliot's future.

[Neil Cuadra]

Craig,

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.

[Craig Rushing]

Neil,

Thanks for your reply

Vanderbilt has looked at the results and agrees with Batson. We just recently sent St. Jude the results to hear what they have to say. Whoever we choose to use will do another biopsy before BMT as well to make sure there are no cell blasts present.

We just found out that Parker is a match and will be the donor. The doctor doesn't seem concerned about waiting until schools is out to do the BMT and according to her, it will take about that long to get all the testing done on Eliot and Parker. They like to wait until summer so there are fewer illnesses around.

Batson does around 20-30 Pediatric BMT every year.

As far as costs go. St. Jude would not cost us a dime as long as Eliot is under their care. They even pay for the housing after leaving the hospital. Batson however would cost around $2500 out of pocket, but we would get to go home after 30 days.