In a New York State of Mind

"Some folks like to get away, take a holiday from the neighborhood..."

After being told that Henry would not continue the Duke clinical study, we sat down with Dr. G and Dr. S to discuss options. Dr G stressed that he still wanted to be Henry's Doctor, but some possible treatments could be administered at home. He had already prepared prescriptions for three chemo drugs to be taken orally: Tamoxifen, Temozolomide and Etoposide. Etoposide is one that Henry has taken (as part of a different drug combo) between his first two surgeries, and he did get some (undramatic) results.

"...Hop a flight to Miami Beach Or to Hollywood..."

As we continued discussing all the avenues that may be out there, Dr G, who had served a residency at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York, alerted us to a phase two clinical trial there, which includes epedymoma.

This treatment involves administering a radioactive antibody to the tumor sites and, as luck would have it, the treatment is administered through the same Ommaya-style reservoir that Henry had implanted for the study at Duke.

Once again we felt hopeful for a new treatment that sounds promising. Henry got excited at the prospect of going to New York (there is a big Nintendo center smack in Times Square). Dr. G warned us about the huge, complex bureaucracy that is MSKCC (and we thought Duke was big!). He explained that the workload of the pediatric tumor physician is immense, and that it can be difficult to get anyone to respond to phone calls or emails.

"...But I know what I'm needing and I don't want to waste more time..."

We decided to try for the MSKCC trial. Since there is a three-week waiting period between any previous treatment and beginning the new trial, we are holding off on the oral chemo drugs. It has already been two weeks since his last dose of chemo at Duke, so we would only have to wait one more week, but we do not want Henry to go too long without any treatment and certainly don't want to suffer any bureaucratic delays.

While Dr. G began attempting direct contact with the doctor at MSKCC (Dr. K...have we used that one yet?), we began a back-door approach. Our own local RET Foundation, which has already been amazingly helpful in the past, has a board advisor who is a physician at Sloan-Kettering, and Suzanne from the foundation jumped in and urged him to contact Dr. K.

Through whatever means, within 24 hours Drs. G and K were in active conversation and the application process begun. Consent forms have been faxed and tissue samples from St. Jude are being sent. If the tissue sample responds to the antibodies, we will go to NY for another flow test and, if successful, first treatment. While we don't know all the details of this protocol yet, treatment would involve going to NY only one day per month.

"...I'm in a New York state of mind."