MDS pediatric cases

[DaveT]

I'm new to the Forum. My 15-month old granddaughter was very recently diagnosed with MDS, Monosomy 7. I've done lots of research and made lots of contacts with pediatric centers in the last couple of weeks. Locally (Northwest) I'd say we're a bit frustrated; but, really feel her best chances might lie with children's hospitals in Houston, Wisconsin, and Minnesota. Do any of you have children or grandchildren with this condition and can you offer any advice. We are still overwhelmed as you might imagine, and I'm planning in attending the conference in Las Vegas in mid-August. I'd really appreciate your thoughts.

[Wendy Beltrami]

Hi Dave,
Well, you've done a great job in researching and certainly have gotten the best information. Attending the conference in Las Vegas will be tremendously helpful for you. Dr. Margolis from Children's Hospital of Wisconsin is scheduled to be a speaker.

My son has AA so I cannot address any questions about MDS, but I just wanted to let you know you are on the right track.

I live in Northern California and my son has been treated at both UCSF and Stanford. Unfortunately, they just do not have the experience with these diseases. I encourage you to contact the doctors at the centers you mentioned. You will be pleased at how accessible they are.

Wendy/mom to Grant
dx 12/4/98 AA

[DaveT]

Wendy,

Since my original post, my daughter has heard from the research team At Fred Hutchinson Cancer Research Center in Seattle. She, her husband and daughter will be going over there for a consultation on the 20-21st of this month (June). I would like to say to all that read this post that the responses to me from Dr. David Margolis in Wisconsin, Dr. Zoanne Dreyer in Texas, and Dr. Margaret Macmillan in Minnesota have been very helpful; and, our family will continue to look to them if things don't pan out with Seattle. Their quick and compassionate responses to my emails provided a sense of warmth and understanding that strengthened my hope for my granddaughter. There are very obviously some great doctors out there. I am very much looking forward to meeting Dr. Margolis in August at Las Vegas. Thanks for your kind words also. I hope that we can meet at this year's conference if you are attending. Sincerely - DaveT

[ginabarrett]

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

[Neil Cuadra]

Hi Gina.

Thanks for letting everyone know not to take "there's no treatment" for an answer and how important it is to get to an experienced treatment center.

Originally Posted by ginabarrett

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)

Forum members who want to exchange email with you can also click "Send a message via email to ginabarrett" on your forum profile page.