During Zoe's last doctor visit where she had to endure being sedated with propofol (the drug of choice for pediatric spinal taps and Michael Jackson) and doped up with morphine, we had a chance to talk to one of her oncologists, Dr. Greg Brandt, about pediatric cancer research funding.
We talked about the protocol method that is used at St. John's Children's Hospital...it's based on a German treatment (I don't remember the exact name) for Acute Lymphoblastic Leukemia (Zoe has T-cell Acute Lymphoblastic Leukemia. It's not quite as common as B-Cell Acute Lymphoblastic Leukemia which is more widely diagnosed) and all of the COG hospitals use this protocol.
|Zoe and Dr. Brandt at the start of their relationship|
COG is the abbreviation for the Children's Oncology Group. Zoe's doctors at St. John's Hospital are a part of the COG team. They are not affiliated with St. Jude Children's Hospital in Memphis. Children’s Oncology Group was formed in 2000 when four pediatric cancer clinical trials groups joined forces. Comprised of 210 treatment centers in North America, Europe, Australia, New Zealand and South Africa, COG includes more than 6,500 individual members. The COG receives funding from the national non-profit foundation, CureSearch for Children’s Cancer which receives grants from the National Cancer Institute and raises funds through philanthropic donations from individuals, special events, corporations and private foundations. Children’s Oncology Group hospitals treat 90 percent of children with cancer in the United States, providing the unmatched combination of global expertise and local care. This means that every child and care team has complete access to the latest research and world-class treatment at hospitals close to home*.
St. Jude is a 100% research hospital. Children whose parents take them to St. Jude have resigned themselves to putting their child on a research study at some point. Not that anyone would know that when they are frantically searching for the best place to take their child with a new cancer diagnosis. All children's oncology protocols start out the same...for instance, if Zoe were at St. Jude or any other hospital in the nation she would be getting the same basic treatment that she is receiving right now. We were offered a chance to put Zoe on a research trial at the start of her treatment. As if it weren't enough that we were going to have to read up on and decide on every standard protocol drug that would go into her body, we were asked to sign a paper to try a research drug for ALL. We read the papers and in the whirlwind of information that we were given about EVERYTHING, we decided to not enroll her in the study. The possible side effect of "temporary blindness" was too much for us to bear. We couldn't do that to her on top of all of the other horrible side effects she would get from the regular treatment drugs. From what I understand, and I may be wrong about this, at St. Jude most children are put on a trial at some point. I understand that trial drugs have gotten us to the point where Zoe's specific cancer is now at a survival rate of 94%, but it's a tough decision to make. Our friend's son Jake, who has medullablastoma, is also being treated by doctors in the COG network. Things are moving rather slowly and sometimes backwards for him. His doctors had thought about sending him to St. Jude for an experimental treatment for his brain tumor, but it was deemed that he was too weak for the treatment and the outcome wouldn't be favorable.
| the beautiful faces of brain and blood |
cancer that is so very ugly