Re: New Scared, Intimidated, but Determined Mom

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Hi ,Wow, you and your little man have been through so much already. You definitely have one of the best docs out there and he'll do his best for Brady. My guess is that maybe they are doing the wait and see thing because of his other medical issues? What is a laminectomy? Perhaps this has to do with why he wanted to wait and see? You are definitely lucky that you are local to Rochester! Best of luck and I look forward to hearing how things go for Brady.Noelle (12-2-01)Ian (8-15-04) To: infantile_scoliosis Sent: Tue, January 26, 2010 10:39:05 PMSubject: New Scared, Intimidated, but Determined Mom

Hi all,

First I need to say how glad I am to have found this organziation and how grateful I am that called me personally to introdcue me to this whole new world.

Our background story is this. Our son Brady was diagnosed with Neuroblastoma in January of 2009. For those who don't know NB is a rare and very aggressive form of childhood cancer. His tumor was in his right chest wall and extended into his spinal column. His spinal cord was almost completely compressed by the tumor. On the day of diagnosis he had emergency surgery, laminectomy of T2-T7 to relieve pressure. In the months that followed he had surgery to place a Broviac catheter, two rounds of chemotherapy, and a final surgery at Sloan Kettering in NYC. He is now stable and has had clear scans for the past 9 months:)

His laminectomy has obviously left his spine very unstable. He had XRAYS three months ago, and again two weeks ago. He has a 15* scoliosis curve and a 50* kyphotic curve in his thoracic spine.

The kicker here is that our home hosptial is Strong (Golisano) in Rochester NY. We live only 45 minutes from there. We have seen Dr. Rubery two times and he has suggested a wait and see approach. My husband is a PT and has tirelessly researched less invasive approaches to treat Brady's curve and found out about Mehta and casting methods. Imagine our disbelief when we found out that the doctor we just saw is one of a few who does this treatment?!? !

We now have an appointment set up with Dr. at Strong for March 2nd. He has looked at his scans and is very interested in meeting with us. I guess we just want to know why or why not as far as casting Brady.

It has been very difficult to find others with similar circumstances to Brady. Although his curve is not terrible right now, we have been told by many doctors that it is only going to get get worse. We have seen him learn to walk after being totally paralyzed, fight through two life-threatening surgeries, and endure chemotherapy. We aren't about to give up and "wait and see" as his spine contiues to change for the worse.

Any advice or insight is greatly appreciated. We are really interested in learning more about this method applied to kyphotic curves.

Thank you so much!

Brady's story: stepsforbrady. blogspot. com