Dear Family and Friends

We would like to thank all of you for your support as we go through another difficult time with Tyler's health. We very much appreciate your generosity, prayers, & helpfulness! Words are so inadequate to express how touched we are by your kindness. Thank you for your time, energy and talents, from meals prepared to babysitting, to the silent auction and donations.

Relapse review

Last January Tyler had what looked like a black eye, although it didn't hurt. Our first thought was "it's back." The doctors thought it may be related to the sinusitis which he had since October of 1999. The scans didn't show anything definite until April 2000. The tumor is located behind his right eye, around the optic nerve and extending downward. Fortunately no cancer has been found anywhere else, which makes Tyler's case unique.

The cancer is more difficult to treat this time. Tyler isn't eligible for some protocols due to prior therapies. Some chemotherapy agents now would be too toxic to various organs, others have not been effective enough to continue to administer them. Cancer cells become resistant to chemo and radiation treatments given previously.

Tyler's oncologist searched for the best treatment among current available protocols. In June Tyler had a 21-day continuous infusion treatment which seemed pretty mild. He kept his hair, energy and sense of taste, but his blood counts were affected. Unfortunately the tumor didn't show enough response to the treatment to continue.

Jamie searched the internet trying to find answers and questioned if proton-beam radiation could destroy the tumor without costing Tyler the use of his eye. That led us to Loma Linda, California and one of a handful of operational proton-beam treatment centers in the world. Proton-beam radiation has little or no scatter compared to standard radiation, and the nature of protons allows a more controlled burst of radiation to be directed where it is needed most.

What we thought would be an opportunity to do some sightseeing turned out to be a "getting to know another hospital" trip. Tyler was admitted for 10 days because the tumor grew, causing pain and nausea. We decided to stay for an extra six days of proton radiation (the maximum he could have.) Thankfully the tumor shrunk enough to alleviate Tyler’s symptoms.

Off to New York

In October we went to Memorial Sloan Kettering in New York for their opinion since the doctors there treat the most cases of neuroblastoma. We hoped to get Tyler into their antibody treatment program, but found out it won't really work for "gross tumor" (visible cancer). Tyler had two rounds of a chemo regimen that their doctor suggested, but the cancer didn't show enough response to continue. The cancer team offered surgery and radiation implants. We didn't feel comfortable with that option because the surgeon wouldn't be able to get all of the cancer, although they would have to remove the eye. Also Tyler has had the maximum amount of radiation anyone should have. He can still see 20/40 in his affected left eye, according to the ophthalmologist.

One Option Left?

Only one study is left that may apply to Tyler's unusual neuroblastoma. This is a phase I protocol that is sponsored by the National Cancer Institute in Bethesda, MD. Ironically the treatment is only available if the tumor grows or NB is detected elsewhere in his body. Right now we are giving Tyler natural supplements to boost his immune system as we continue to hope and pray for a miracle.