PLEASE CLICK ON THE LINK BELOW AND WATCH... AFTER YOUR DONE PLEASE PASS IT ALONG!!!!
http://www.youtube.com/watch?v=9WNdquhWdkA
THANK YOU
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I AM WINNING THE BATTLE AGAINST OMS
“You gain strength, courage, and confidence by every experience by which you really stop to look fear in the face
About Me
- The Woodman Family
- Middletown, Pa, United States
- My name is Makhi and I am just 6 years old. I suffer from a rare form of cancer Neuroblastoma and Opsoclonus-Myoclonus Syndrome
WE ARE PENN STATE
Another Long Day
Getting one of my treatments
5 comments:
Did you make that video? It is a very special video.
My daughter Sarah was diagnosed with OMS in March 2009.
Thanks for putting it together.
Yes I did make the video! Thank you for the nice comment. How is your daughter Sarah doing? OMS sucks and it is so hard.I just keep praying for a cure soon.
Tara
Hi Tara,
Sarah is doing well, but not perfect. 2-3 weeks into the start of her treatments, she came down with a cold and things are still progressing, but very slowly. She has a very severe case of OMS, but no neuroblastoma...yet. When the spinal tap was done, they said something like this: "the neuron specific enolase was three fold elevated which is a marker for the neuroblastoma tumor." So, we will have to have her checked every 6 months to look for the tumors.
As far as her OMS progress slowing, we were told that she should be running at the end of the 1st 4 weeks on ACTH. She is just finishing up week 6 (also had 3 IVIGs and 2 rituximab treatments) and she is still not walking. Her eyes are mostly steady, but still dart around a bit and her speach is still weak. My wife and I are hoping that the cold just caused a delay, but we don't know for certain.
Thanks for putting this site together for Makhi and we wish him (and your family) well.
Jim
Hi Tara,
I just read through your whole history here. Wow, you have been through a lot. My wife and I hope to have your strength.
We just missed you in Springfield - we saw Dr P (with Sarah) on March 6th. When I talked with Liz on the phone for the first time on March 3rd, she passed along the info to Dr P and he wanted to see her that Friday. Wow, that was fast.
Anyway, our paths almost crossed.
We live outside of Syracuse, NY and my father was born in Lancaster and grew up in York. I have passed through Harrisburg many times in my youth when visiting my grandparents and family in the York area.
Take care,
Jim
Hi Jim
That would have been nice if we would have meet while we were both in Springfield. Makhi was DX with OMS in July of 2007. He actually became ill in April of 2007 and litterly overnight start walk and talking. He then had very bad rage attacks for about 12 weeks. We where in and out of the hosptial and had every test imaginable done. It was only after I pused the doctor to do the full body MRI did I get the anwer I was so desperatly serching for. Makhi has OMS and Stage 1 Neuroblastoma.
We left for Springfield a week after the tumor was removed and his B-cell level was 7 times efolded so he also is a VERY serve case of OMS.
Are you on the online OMS support board. The is a chat site that is full of OMS parents all across america that belong to this group. It is wonderful to be on this board because OMS is so rare very few people really understand what you and your wife are facing. Please let me know if not I will send you the information to get signed up so that you can join. You can also contact me at my person e-mail which is tarawoodman@comcast.net. Please take care maybe sometime we could talk via the phone.
Tara Woodman
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