Seeking advice for best friend's grandson

[Liz J.]

Hi all,

I am asking if anyone here has any experience with or knowledge of a brain malignancy known as Medulla Blastoma. My dearest and closest friend's 3 1/2 year old grandson was diagnosed with this last Thursday. They live in Port St. Lucie, Florida. The baby was operated on Saturday in Miami Children's Hospital. I don't know all of the details, but am trying to do anything I can to help them. Pat and I grew up together and have been like sisters since 9 years of age. When I was diagnosed with BC she flew up to New York faster than the plane. I know her daughter and son in law will be seeing an Onc. somewhere in their area, but so many here are so knowledgeable I thought someone might have some advice. If anyone has any input please let me know. I know we are all dealing with our own BC and I don't mean to go on and on, but if anyone feels inclined to do so please pray for baby Kyle.

Thank you.
Sincerely,

Liz J.

[Soccermom]

Dear Liz,
The late Dr Fred Epstein who pioneered numerous techniques in pediatric neurosurgery started this facility for children.(1)..I hope they might be helpful. There is an organization that helps with financial issue for those who need it (2)



http://www.nyneurosurgery.org/

http://www.needlers.org/whowehelp.html

I will, of course,keep Kyle in my prayers,

Marcia

[heblaj01]

Liz,
Harvard's Children's Hospital in Boston may be a good place to consult.
It is where Dr M.J. Folkman & DR Mark Kieran & others are continuing cancer research & inovative treatments (such as Stem cells).
A quick search of the hospital web site gives these specialits names:

Brain tumours:
http://children.photobooks.com/directory/list.asp?shellid=248&service=52&view=program&setsize=5
(Mark Kieran, director)
Click on "Faculty" for the names of over 20 specialists.

neuroblastoma:
http://children.photobooks.com/directory/list.asp?shellid=395&service=702&view=program&setsize=5

<TABLE id=702_Faculty style="DISPLAY: block" border=0><TBODY><TR><TD class=main_text></TD><TD class=main_text>Lisa R. Diller, MD (http://children.photobooks.com/directory/profile.asp?dbase=main&setsize=5&service=702&shellid=395&view=program&department=&classification_deptview=Faculty&pict_id=9903530)</TD></TR><TR><TD class=main_text> </TD><TD class=main_text>Suzanne Shusterman, MD (http://children.photobooks.com/directory/profile.asp?dbase=main&setsize=5&service=702&shellid=395&view=program&department=&classification_deptview=Faculty&pict_id=1646844)</TD></TR></TBODY></TABLE>
The main page of the web site is
http://www.childrenshospital.org/az/Site1084/mainpageS1084P0.html

And for second opinions:
http://www.childrenshospital.org/clinicalservices/Site1991/mainpageS1991P9.html

[RhondaH]

I'm sorry, I do not have any information, but I WILL provide prayers for this little one. Take care and God bless.

Rhonda

[anne2]

I always support St.Jude's and I think they have lots of cutting edge treatment and support for sick kids. I do pray for this little child.
Anne