Sunday, December 4, 2011

Cancer at Christmas

It's the Christmas season, but one thing is still constantly on our mind.
Childhood Cancer.

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'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.      

When Zoe was first diagnosed a lot of people immediately asked "are you taking her to St. Jude?"  If that was the best option for her, we would be there right now.  But, even though St. Jude confesses that it's "the only pediatric cancer research center where families never pay for treatment not covered by insurance. No child is ever denied treatment because of the family’s inability to pay*" it's not always the best option.  Sometimes it's about more than the bills to be incurred.  We had a 1 1/2  year old at the time of Zoe's diagnosis and the stress of moving somewhere with or without her would have been monumental.   Unknown to most people is that there is a COG hospital in their own area, not just St. Jude in Memphis. St. Jude has marketed themselves so well that most people have no idea of any other treatments that are available in their own backyard.  Kudos to St. Jude and their wonderful marketing campaign.  Kudos to St. Jude and their Hollywood affiliation.  Today, more than 90% of 13,500 children and adolescents diagnosed with cancer each year in the United States are cared for at Children’s Oncology Group member institutions*. St. John's Children's Hospital has been great to Zoe and the Children's Oncology Group needs financial support.  While St. Jude annually receives $700 million in philanthropic donations, the COG receives only $13 million...Zoe's doctor told me these figures and I may be off by a few million in my not quite verbatim quote.  The COG doesn't have super star support, but does have some super doctors that care just as much as the famous Memphis Hospital and it's doctors.  My ultimate goal is to get star support for COG.  It may take time, but I have some connections..hee-hee.  

 the beautiful faces of  brain and blood
cancer that is so very ugly
So, the next time you want to do a fundraiser for children's cancer, maybe you can switch it up a little and support the Children's Oncology Group, with doctors and hospitals all over the country.  Help raise awareness that there are other doctors who are doing just as much research for childhood cancer as St. Jude doctors.  In Illinois the COG are located in Springfield, Chicago and three of it's suburbs, and Peoria.   All doing great work for childhood cancer research and making a difference in children's lives.

You can start a fundraiser or donate today by visiting CureSearch       

where you can learn about The Children's Oncology Group program and where you can soon donate directly to them for 100% support of your dollars going to research. 

*CureSearch facts
* St. Jude facts

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