It's been a long time!!!

Treatments, Rehabilitation, and Recovery
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Ryan's mom
Posts: 3
Joined: Sat Jan 06, 2007 12:46 pm

It's been a long time!!!

Post by Ryan's mom »

Wow it has been a long time since I have posted anything. for those of you who remember us way back in 2001 My name is Renee and my son Ryan had a TBPI involving a snowmobile in Feb of 2001. He was 10 years old at the time. Total avulsion which left his right arm completely flacid. We attended the first camp in Colorado and met the most wonderful people that I consider family. Tracy I would love for you to contact me I lost your number and I think of you and Joe all the time. Well so much has happened in the last couple of years. Ryan had surgery with Dr. Bishop at the Mayo Clinic in Rochester with great results. His arm was getting stronger and they were talking about doing some more surgery on his hand since it had curled and was flacid. Unfortunately Ryan had a major setback. His physical therapist noticed his "good arm" was getting weaker. Mayo contacted us immediately and back to the hospital we went. Multiple MRI later it was discovered that Ryan had Brain and Spinal cord tumors. Malignant Astrocytoma. Last April Ryan underwent total brain and spinal cord radiation and started chemo. He was a very very sick boy. I am so proud of how brave he was and continues to be. He still takes chemo on a 28 day cycle and gets a little sick during his chemo days but nothing like the radiation. He lost almost 80 pounds and does not even look like the same kid. The radiation did the job by stunning the tumors and they are stable now. So that is the good news. Ryan and I are looking forward to more information on the next camp in Washington as we are both planning on attending. Ryan is really looking forward to it. I hope all is well with everyone and we both look forward to hearing from you all. Peace and love!! Ryan's mom Renee
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: It's been a long time!!!

Post by Kath »

Renee
I can't believe you and Ryan have been through so much.
I will add him to my prayer list and hopefully by the time Camp 2007 comes around he will be feeling good.

He is one very strong boy and I look forward to seeing you both at Camp 2007

Kath/adult/robpi
Kath robpi/adult

Kathleen Mallozzi
Karen McClune
Posts: 746
Joined: Wed Sep 10, 2003 4:58 pm

Re: It's been a long time!!!

Post by Karen McClune »

Hi Renee,

Oh wow, I just read all that you and Ryan have gone through, words can't express what I am feeling.

I am so excited you both will be at camp this year. I can't wait to see you.

If you have any question about camp please email me and I will answer you ASAP.

Please know that you both are in my thoughts,

Hugs,

Karen
UBPN camp cooridnator
karen@ubpn.org
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