BMT Locations (St. Louis vs. Milwaukee)

[us6inks]

Hello All,

We are visiting the Dr. today to discuss treatment for our 8 yr. old daughter Lillie who was diagnosed w/ AA this week. I have spent hours (feels like days) on the web researching BMT treatment and different Drs. that specialize in AA. My wife, Vickie & I are expecting to test ourselves and our other 3 kids for a BMT donor match. My big thing now is where to go.

I've researched Barnes-Jewish/Children's Hospital in St. Louis, but I've also seen & read alot about great things from Childrens Hosp in Milwaukee. Dr. David Margolis' name has come up a lot in my research. When I review the stats on each center in the Nat. Marrow Donor Program site (marrow.org), I find that they perform 4 times the number of BMT's for AA patients in Milwaukee compared to St. Louis. We live in St. Louis & I know Barnes-Jewish is EXCELLENT! Being new to AA, we just want to have the best possible people working with Lillie.

Any advice!

Thanks, Robbie (p.s.-this forum is a huge comfort, thanks!)

[sandra]

Hi Robbie,

Sorry to hear about your daughter. You can try to have it both ways, by asking the team at Barnes Jewish to have Dr. Margolis as a consultant. Other thing to keep in mind is not to get too excited about the transplant possibility, there is no guarantee about a sibling match (although chances are high with 4 kids). Either way, you should prepare yourself emotionally for a long journey.

You might also try to contact Valerie Loughran, her son Bobby was diagnosed with AA and they are treated at Barnes Jewish. She does not visit here often, she posts on the Aplastic Central forum.

http://aplasticcentral.com/test/toas...n=topics&fid=2

www.caringbridge.org/visit/bobbyloughran

The following I copy/pasted from an old posting that I wrote on Aplastic Central:

Couple of things about supportive care:
1. You want to keep the transfusions to an absolute minimum! The less, the better, since she can become alloimmunized (developing antibodies)! Every patient is different, but general accepted safe numbers are hgb 7 and plt between 5 and 10.
2. You might want to request fresh blood product (especially for plateles). A bag of platelets has a life shelf of about 5 days, if you receive one that is 4 days old is not going to last her long! Also, platelets should be preferably from a single donor (not pooled donors), since pooled donors increase the alloimmunization risk. All blood products should be irradiated.
3.Very important, ask about CMV negative products (not CMV safe). There is a post "CMV negative blood", use the subject in the search feature of the forum (Aplastic Central) to find it, that explains in detail the issue.
You cannot talk to the blood bank, but if you talk to your doctor and explain exactly your concerns, he/she can contact the blood bank and ask for special handling of the blood products. There should be a standing order in the chart also, so this issue does not need to be brought up again with every transfusion!

About treatment:
1. First line of treatment for children is bone marrow transplant if she has a matched sibling donor.
2. Second line of treatment is IST (immunosupressive treatment with ATG/cyclosporine). The response rate (if there is one) varies from 4 to 6 and sometimes 9 months.
3. If IST fails you are in a grey area, depending on a multiple of factors you might go for a second round of ATG or you can go for a transplant from an unrelated donor.

And finally, some piece of advice.
1. Try to prepare yourself and your family emotionally for a LONG ordeal. This is NOT going to go away in a month! However, think positive: AA can be beat and is has been beaten! Positive thinking does wonders when coupled with knowledge!
2. About knowledge: try to learn as much as possible about this disease. Read the postings on this forums or different medical articles out there. This might prove difficult, but I know people that now can called themselves "experts" and started out with no background at all! If you post your e-amil address on the forum, I can sent you couple of relevant articles to read, in particular a 2005 review article about AA in children that is quite straightforward and an excellent source of info. Even if you don't understand everything, you can still get the relevant info and then ask your doctor.
3. Stay away from illness! Even if she's not neutropenic, any viral infection can literally knock down her counts. Try to be proactive, avoid crowds, wash hands, make sure her friends don't have a cold, etc. You don't want to get ANYTHING if possible, just stay healthy!


Sandra

[ljvoight]

Hi Robbie,

My prayers go to you and your family. My Daughter Danica (12 years old) had vsAA. She was diagnosed on 10/07/06 we had a sibling match and she had her BMT(bone marrow transplant) 11/29/06. Our Dr.'s at Childrens Hospital in San Diego consulted with Dr. Margolis. In Danica's case we could not have had a better outcome. She is back in school and playing soccer. If you have any questions please ask!!! There is a wealth of information from individuals whom have been there. The support is great !!!

Linda V.

[us6inks]

Thanks for the info Linda. We just found out yesterday that none of our other 3 kids were an HLA match for Lillie. Dissappointing, considering the increased possibility with 3 chances. We are moving forward in consideration of "Plan B" being IST. We have to wait for one more lab to rule out the possibility that Lillie has a rare form of Inherited AA (from Amegakaryocytic Thrombocytopenia). If she test negative for Amega, we move to IST. If we find that she has Inherited AA rather than Acquired, then IST may be ruled out and we are looking at a MUD BMT. Either way, my wife Vickie & I are firmly resolved in the fact that God is in complete control of everything, at all times. While we want to fix this & make it go away, it's not in our power to do so. We simply pray and ask for God to continue shining our way along his path so that his will be done. For the time being we enjoy every day that we are given.

Thanks Again,
Robbie Inks

[skoopman]

Robbie,

I posted on your other message but wanted to respond to you here as well since you specifically asked about Milwaukee. I live in California and we went to Milwaukee to have Michelle treated by Dr. Margolis (lived in the Ronald McDonald House) and we would do it again if we had to...so that tells you what we think of him and his program.

He is happy to consult with other dr's so that is an option to get his expertise without having to change cities. One thing I have found with him is he doesn't want to step on other dr's toes, so it works best if your primary dr is open to outside help. Sadly, that's not always the case.

Why did we go to Milwaukee, specifically because we wanted the dr who had the most experience with pediatric AA BMT's and that's him. On tp of that is a wonderful person and dr, tells you upfront how it is, asks you what you think and takes your opinion and what the child says into the mix, and comes up with the best plan for the specific child.

Good luck and let me know if you have any questions,
Suzanne