Myelodysplasia Support Group

I don't have any knowledge really on children with mds but have you by chance contacted md anderson in houston? I understand they are great with mds

I know I am late posting this but yesterday at chemo the nurse told me about a friend of hers whose son had mds. He had a transplant is doing fine. You should see his information on http://marrow.org/Home.aspx His name is Jacob Kowauk and his donor was Marshall Davis. They have been on several shows and different things. I hope you get this..
Cat

How is your son? What is happening? Please post so I know. I am a grandma and love my grandchildren so. I can't imagine what you are going through but I think about you and him and the rest f your family. Please leave a post....

I am so sorry I didn't send you this sooner but here is a site for MDS. They have a list of specialist for Mds.

http://www.mds-foundation.org/

I know I have the list some where on my computer but I can't find it right know I will look and send you another message with it.
Cat

found it

Arizona

Mayo Clinic Hospital
Phoenix, Arizona
Ruben Mesa, MD/ James Slack, MD

University of Arizona
Arizona Cancer Center
Tucson, Arizona
Daruka Mahadevan, MD, PhD

Hope this helps..

Thanks you all for the replies and post. Yes, we've looked into MD Anderson and University Medical Center in Tucson.

We've decided to stay put and have the BMT at Phoenix Children Hosptial. Noah transplant doctor is also affliated with Mayo in Scottsdale. We were notified that two donors have come forward.We are waiting on their lab results to see if they are an exact match. The tentative BMT date is for April, all depending on the donors and Noah's health.

As of right now, Noah is healthy! We are desperately trying to keep him well and way from any illness. The doctors are especially concerned with RSV season. As you all can image that is almost impossible with him having an older sibling in school.

Thanks again for all you well wishes and thoughts

I am glad to hear about the BMT. I have a place you can contact Jacob's mom. But it isn't working right now. I will try to get the right information for you. Have you talked to other parents whose children went through a BMT? I feel only anther parent can really understand your fears and worries. I think about him all the time and am saying prayers for him.
Cat

Thanks Cat, I appreciate it. No, unfortunately, I have not talked to any other parent whose child has gone through a BMT. I've read some of the other parents blogs through varies locations. I would love to have a conversion on what to expect.

Here's an update, both donors are not a good match for Noah. PCH is know seeking international donors for him. They are still hoping we will find a donor in time for an April transfer date. Thanks again for all the support. We'll need it!

Ask the bone marrow people to put you in contact with other parents. There is also a site you can check out and they should be able to help put you in touch with other parents. www.imermanangels.com
I hope ... Some times it seems it is only, us the older group that has more available help. Also try the www.leukemia.org/ There has to be something out there to help you through this time.
Think of you and and your son and daughter.
Cat

I made a mistake it should be..... imermanangels.org............... Sorry
Cat

My 20month old daughter just got diagnosed with MDS at Phoenix Children's as well.... Unfortunately we will not being having her BMT there due to it being out of network so we are looking at going up to Seattle. I hope that we both or I KNOW that we both will have great outcome stories to tell and our kiddos won't remember a thing!! My prayers are with your family!