NF Smarty Pants

Archive for the ‘Medical Procedures’ Category

10:00 AM
Clove Lakes Park
1150 Clove Road
Staten Island, NY 10301

Fees:

• Adult $10
• Child $5 (12 and under)
• Team $25 (up to 4 – additional members $10)
• Dog $5 (on leash)

Presented by the Children’s Tumor Foundation and the Staten Island University Hospital in honor of Jonathon White. Register here.

Dr. Roger Packer provides his summary on the state of childhood brain tumor research and treatment at HemOnc Today.

Catch up with the story by following these links:

• Jessica Stone’s brain tumor surgery will cause hearing loss.
• Jessica Stone featured on Good Morning America.

Earlier this month, Jessica underwent surgery to have a cochlear implant inserted and connected. The implant will be activated in October. Only then will she know how much sound she may be able to experience again.

She continues to chronicle her decisions at her MySpace page.

The Children’s Medical Center at Winthrop University Hospital (Mineola, NY) has gained a slit lamp. This will allow ophthalmologists to better examine the structures at the front of the eye. The devise is helpful in diagnosing and tracking neurofibromatosis in children.

Last May, we wrote about how Jessica Stone was sharing her final days as a person with hearing through video diaries. Her surgery to remove a life-threatening brain tumor would also take her hearing. Yesterday, Good Morning America featured her and her family on their program.

You can see the complete tv segment and read a text update on ABC’s website. Her local tv station, WZZM, is also reporting international interest in her story.

Face transplant surgeries are certainly in the news these days. The Times has a detailed article describing the stages and processes of this amazingly high-tech operation.

In 2007, French doctors completed an almost complete face transplant operation on Pascal Coler, who had facial tumors related to his NF1. This and other similar surgeries are giving surgeons a lot of information about the procedure.

The fundraising effort to collect donations to cover James O’Neal’s tumor removal surgeries has reached the national media. Read the coverage from:

• ABC News
• FOX News

Last month, I posted about shoppers in James’s Safeway coming together to raise funds for his future surgeries. The Seattle Times has an update on his story.

As of today, Katie Knopf and the Friends of James O’neal have raised $115,851 to cover his expenses. James is scheduled for his first 8-hour surgery in November.

Newsweek has a web story about the six amazing and unusual surgeries in modern times. They included the almost full-face transplant completed on Pascal Coler in January of 2007.

Coler’s facial tumors disfigured his features and created life threatening conditions. Doctor’s were able to replace his lips, mouth, cheeks, and nose with those of a donor.