Friday, May 15, 2009

Not Just for Steven...

Steven's lived a relatively uncomplicated two wise...since his last brain surgery.

He's had a few more brain tumors show on scans. But they are still so small and so asymptomatic.

The brain stem tumor has continued to grow in it's dawdling slow way. The few symptoms that Steven's experienced from this tumor, namely odd yet irregular hiccups, gather nary a glance from neurosurgeons familiar with this disease. Surgery for that tumor has been mentioned, but in a very vague and futuristic manner.

His pancreas continues to function well despite the several cysts that reside there.

And Steven has a wonderful life...continuing his studies, playing soccer, living the college life, and being our sweet son.

Isn't it crazy that I continue to raise money and awareness for this rare disease when Steven's been relatively well?

It's not just for Steven...but for many more

Other young adults, not much older than my sweet boy, have had a horrible battle with von Hippel Lindau disease in recent months.

One young man, just a year or so older than Steven, is now struggling to learn to walk again. His studies have been on hold, his soccer playing days are over, and his life is lived out in rehab because a rather nasty hemangioblastoma took home inside his spinal cord.

It's not just for these young warriors...but for so many more.

Studies with VHL patients are producing chemotherapy drugs that are helping thousands of other cancer patients.

While not used with the VHL population yet, drugs like Sutent, Avastin, and Nexavar are being used to treat glioblastoma multiforme, advanced renal cell carcinoma, and metastatic cancers of the colon, lung, breat, ovary and liver.

These next generation of chemo therapies are being studied and produced because of a little crazy gene on the short arm of the third chromosome.

It's not just for so many's also for Steven.

His abdominal scan from early May is now showing VHL involvement in his left kidney.

It's very small spot...all of 4 mm...and not really newsworthy, but it's there. And it's the beginning of a new phase in our sweet boy's diseased body.
This never ends.

We'll continue to raise funds and awareness forever, or at least until my sweet boy can go to a scan and be fairly confident that nothing will show.

1 comment:

carole said...

Hi Beverly:
Yeah for Steven having family that is so good and kind for all.
I am concerned that my youngest daughter (31) has a healthy born 1st daughter in August. I hope I am a good Grandma; I will carry with me perception of strength you show!!!
Hi to Steven : )
peace & health


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