My son, Liam, was diagnosed with MDS and monosomy 7 in October 2005. He was 3. We were told that he had no chance of survival and not to bother any treatments. However, we were not satisfied with that!!! We went to University of Minnesota and to St Jude Children's Research Hospital for consultations. Both claimed they could give him a good chance at a cure (you either cure it or you don't, you don't just treat it) We ended up going to St Jude's. It was the best decision we have ever made! Liam is now 5, he is 473 days post transplant (matched unrelated donor) St Jude will fly the patient and one caregiver plus put them up with meals and a hotel room plus all medical expenses for a consultation. I would HIGHLY recommed doing this, even if you end up going to the Hutch. They too have a great reputation. Having different opinions and having seen different locations really helped us in the decision process.
This is a terrible disease and we know so many kids who have had it and passed away. However, we have also been blessed to meet many wonderful children who are thriving!
Liam's site is
www.caringbridge.org/visit/liamreinier and if you choose on his links section, several of those kids have MDS too. I can get you a list of more people too.
If they do choose to do St Jude for a consult, please let me know. I'll give you more details. One thing we really liked about them is that they do a lot more tests on a MUCH more frequent basis. These tests can predict early relapse when there are still options to treat that and not lose the whole new marrow and have to start over. Also, there was never a problem with insurance. Our insurance orginially denied a BMT for him since it wasn't officially recognized as a treatment by our insurance. But I didn't even know this for a long time. They NEVER ask for a penny. NEVER. They did ask me to talk to insurance so they could get the paperwork filed, but that was it.
PLEASE PLEASE PLEASE feel free to contact me with any questions!!! I don't always check the forum though, my email is on our website though (the one I listed above)
Gina
www.caringbridge.org/visit/liamreinier