Our son, Joshua, was diagnosed with Ewings sarcoma in Oct. 04. He
was 4 years old. He followed the National Ewings protocol...14
rounds of chemo, 31 days of radiation. The tumor was inoperable.
It was in his c-6 neck vertebra. We opted for proton radiation in
LLUMC (Loma Linda University Medical Center) in CA. The tumor was
gone after 3-4 rounds of chemo, but his c-6 vertebra was near
collapse. At this time, it has been determined that his neck is
stable and he does not need fusion surgery. However, his neck is
closly monitored by 2 specialists.

He's had 2 complications, which started just 6 months post proton
radiation.
1: an esophagel web or stricture which has kept him from being able
to swallow/eat. he's been fed through an ng tube since March 05.
After numerous esophageal dilation procedures (stretching) his
esophagus is now open to approx. 10-11 mm. He has just started
swallowing therapy and is now able to drink liquids. However, it
appears from the swallowing study that the parastolic (spelling?)
function of the esophagus is impaired at this time. Hopefully, it
will improve.

2: Josh's trachea began to swell shut and he had to have a temporary
tracheostomy in Sept. 05. At this time the swelling has become hard
fibrous scar tissue. The airway opening is now the size of a
newborn's airway. The ENT wants to do a surgery called a "cricoid
split" in order to open his trachea and hopefully allow the
tracheostomy to be removed, so he can breath normally again.

So, my question is...Has anyone else dealt with similar problems due
to proton radiation?

Has anyone else chosen proton radiation over photon radiation and
what were the results?

Has anyone else had or known of a child who had a Ewings sarcoma
tumor in the neck vertebra?

Kyle said something about recurrance happening due to too much
radiation...is there a study on that? How much is too much
radiation? Are they speaking of proton or photon radiation?

Thanks,
Joshie's mom,
april




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