Lyon's Story:

Lyon had his first Desmoid tumor when he was 4 years old. The doctors did not have a reason for its occurrence, so they removed it and let it go. For the next several years, Lyon complained of stomach pains and had many bowel problems. After years of misdiagnosing, his mom found a gastroenterologist at UCLA who then performed a colonoscopy in December of 1999. What they found was unheard of and very rare for a child of his age. There were thousands of pre-malignant polyps lining his colon and rectum. The doctors then diagnosed him with a rare genetic disease called familial adometosis polyposis (fap), or Gardner Syndrome. The family had no idea how this disease would dramatically impact their lives.

The doctors insisted that Lyon have a full colectomy of the colon and the rectum. His mom, Barbie, did not feel comfortable removing anything until she absolutely knew more about this condition and was able to explore alternative treatments.

For the next 4 months, Lyon was on a very strict honamanian diet, taking many herbs and tinctures as well as visiting many healers. The aggressiveness of his disease gave them a very small window to work any magic. So on April 4th, 2000, Lyon underwent a seven hour surgery to remove his colon and rectum. The doctor did a procedure called the ileoanal pull through. This is a procedure to try to avoid an ileostomy bag. His body rejected this procedure so two months later they gave him an ileostomy bag. He had the bag until September 2000, when they went back in and reversed it back to the original procedure.

That year Lyon spent most of the year in and out of hospitals due to surgeries and obstructions. He was home-schooled his 2nd grade year.

About a year after his colectomy, his parents started noticing a growth forming on each side of his abdominal scar. Again this growth was misdiagnosed as scar tissue for over a year. Finally, a surgeon requested an MRI and they discovered a tumor the size of a grapefruit growing within his abdominal wall and all through his pelvic cavity.
His parents and the team of doctors decided that surgery would be the very last option due to the possible morbidity rate and the risks associated with removing the abdominal muscles, in which the tumor was intertwined.

In November 2003, Lyon started a year-long protocol of chemotherapy, Methotrexate and Vinblastine. He did have some shrinkage in the very beginning of his treatment, but the tumor then began to grow again. During his quarterly CT scans and MRIs, they discovered two more tumors in his chest cavity, as well as one on his left hip. A recurrence of the first one was removed. They also discovered osteomas on his skull.

After the year he was taken off of the chemo and the tumors were labeled stable. Two months later they began to rapidly grow again so he was put back on the chemo for another year. During his chemo, Barbie and Darrell, his step-dad, took him to Brazil to go see a healer by the name of Jon of God. This was an amazing time for Lyon; his tumors did not shrink but there was a lot of emotional healing for him.

He finished the second year protocol and was off of the chemo for about four months when the tumors started growing again. UCLA decided to open a case study for him and put him on a very high dose of Tamoxifen and Sulindec. He took 300 mg of each per day for almost 10 months. This combination was very toxic for his liver and other organs. The side effects were very hard on him. Besides his liver having problems, the Tamoxifen started to deplete the calcium out of his bones, which gave him a condition called osteopenia.

He was taken out of the study in December, 2006. Barbie took him to the Optimum Health Institute in San Diego in February for three weeks. There he went through a very intense, raw foods and juice detoxification. Lyon came home feeling great and looking great.

In April, 2007 he had a CT Scan, requested by a specialist at the Cleveland Clinic. The results showed rapid growth once again. The tumor had grown 10% to 50% in certain areas. His oncologist here at UCLA requested a PET scan to check for malignancy, because of the rapid growth and change in shape of his tumors.

After flying to Cleveland in the beginning of June and meeting with the specialist there, they have decided that it is in Lyon's best interest to remove these tumors surgically as soon as possible.

The surgery will entail the removal of his abdominal tumors as well as his hip tumor. They will also remove his chemo port-a-cath. Surgery is scheduled for July 11th. The family will be in Cleveland with Lyon from July 8 and will be out there for 2-3 weeks.