Home         Forums  

Go Back   Marrowforums > Treatments > Pediatrics
Register FAQ Search Today's Posts Mark Forums Read

Pediatrics Treatment for juvenile patients

Reply
 
Thread Tools Search this Thread
  #1  
Old Sun Aug 20, 2006, 05:44 PM
skoopman skoopman is offline
Member
 
Join Date: Aug 2006
Location: CA
Posts: 54
6 year old daughter

Hi everyone,
My name is Suzanne. My daughter was diagnosed with AA June 1, 2005 at the age of 4 (almost 5) after three very long weeks. She underwent a round of rabbit ATG which was awful. In October we flew to Milwaukee from California to be under the care of Dr. Dave Margolis at Children's Hospital of Wisconsin. She had a MUD BMT on November 11, 2005. The only thing we know so far about her donor is he is a 35 year old male in Germany, O+, CMV-, with three kids. I can't wait until I get the opportunity to thank him for saving my daughter!

On a medical front she is now +290 (or so) days post transplant and doing well. She engrafted really quickly and was discharged at day 19. She was back in the hospital with what turned out to be be gut GvH at day +33. It took a long time to get that under control. While it was not life threatening it was certainly not good.

We are currently home and being followed long distance by Dr. Margolis. She started first grade this past week which is a huge accomplishment since her classroom for kindergarten was in the hospital.

If anyone has any questions, I would be happy to answer them. If you want LOTS more detail about what we / she has gone through I have set up a webpage at www.carepages.com and her page name is Michelle5

Good luck to everyone,
Suzanne
__________________
Mom to Michelle, age 7, SAA 6-1-05, rabbit ATG 6-3-05, MUD BMT 11-11-05
www.carepages.com Page name, Michelle5

Last edited by Marrowforums : Sat Dec 23, 2006 at 11:04 AM. Reason: added link
Reply With Quote
  #2  
Old Sat Aug 4, 2007, 01:22 PM
skoopman skoopman is offline
Member
 
Join Date: Aug 2006
Location: CA
Posts: 54
Update on Michelle

Hi everyone,

It has been a while since I have posted anything new about Michelle, but that is a good thing. To bring people up to speed she was diagnosed with SAA June 1, 2005 at the age of 4. She turned 5 a few weeks later. We did rabbit ATG which knocked out her counts and they never responded. She was heavily transfusion dependent (red blood every 2-3 weeks, platelets twice a week) until she went to transplant. We decided to temporarily move to Milwaukee so she could be treated by Dr. Margolis at Children's Hospital of Wisconsin. We lived at the Ronald McDonald House across the street from the hospital for 9.5 months. She had a 10/10 MUD (matched unrelated donor) transplant November 11, 2005. We know her donor is a 35 year old man from Germany, O+ CMV-

She engrafted really quickly and was discharged early from the hospital. She ended up having skin GvH that was easily controlled with steroids and steroid cream and then had gut GvH. That was harder to diagnose and treat but they did and she was fine afterwards.

She is currently doing fantastic! She turned 7 years old in June, just finished the season for the swim team where she went to practice 4-5 days a week, just performed in a dance recital, is in gymnastics, just started soccer and is about to start second grade. There are a few people who know about her history but she has reached the point I don't even mention it on medical forms anymore. She is 21 months post BMT with all normal counts (they have all been normal since day +21 or so). She is off all her medications. She has a slight touch of skin GvH but steroid cream on those locations takes care of it and it is mild enough that people don't really notice it. She has mild cataracts from all the steroids but as long as she doesn't go back on steroids they shouldn't get worse.

I know a BMT isn't for everyone, nor should it be. It is a huge decision but one we felt was the right choice for us.

Suzanne
__________________
Mom to Michelle, age 7, SAA 6-1-05, rabbit ATG 6-3-05, MUD BMT 11-11-05
www.carepages.com Page name, Michelle5
Reply With Quote
  #3  
Old Tue Aug 7, 2007, 02:14 PM
Tom M Tom M is offline
Member
 
Join Date: May 2007
Posts: 36
That is fantastic news. I am so happy for all of you. May God bless.
__________________
Tom, age 56, diagnosed with MDS RAEB Oct of 2006. Previously treated w/ vidaza, unsuccessfully. Revlimid successful 1 year. Progressed to AML 4/08 w/ 20% blasts, now in remission. BMT to take place 10/08.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Day + 7 BMT 27 year old daughter amyangel MDS 28 Fri Dec 5, 2014 05:41 AM
16 year old daughter with PNH and AA RosP Tell Your Story 2 Sat Oct 26, 2013 09:40 AM
16 year old tired for over a year bone marrow failure Gregsgrouo Tell Your Story 10 Wed Aug 28, 2013 02:26 PM
18 year old daughter with AA or MDS. Dr's can't tell difference. Holding her own anneman Bone Marrow Failure 1 Thu Feb 14, 2013 04:06 PM
17 year old Daughter with SAA - STILL FIGHTING Candy S Tell Your Story 1 Sat Sep 25, 2010 04:18 AM


All times are GMT -4. The time now is 03:16 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2018 Marrowforums.org