New Treatment Information
Eden is doing well and at school today. She is off to clinic after school for routine blood tests.
Today is a huge day for our friend, Sammy Hutchinson. Sammy has been trying a new neuroblastoma treatment, topetecan/cytoxan/nifurtimox in combination. He is doing his MIBG scan today to determine if this new treatment is fighting back against the cancer.
Sammy's dad, Neil and John London, father to Penelope London (another NB fighter) got this treatment approved for use in pediatric NB patients. They are proof that parents are going to be the ones who continue to push the limits with the doctors and researchers to find the cure for our children.
Nifurtimox is a therapy used to treat Chagas Disease. It is a disease seen mostly in South America. A young girl with NB had become transfusiondependentt and contracted Chagas through one of those transfusions. She was using topetecan and cytoxan to treat the NB and her doctor added in Nifurtimox to fight the Chagas disease. This young girl achieved NED status after this treatment regimen.
The doctor who treated this girl presented an abstract at a recent "Advances in Neuroblastoma Research (ANR)" conference. John and Neil researched and contacted the doctor and convinced her to allow this treatment to be tried on other NB fighters, who had little to no treatment options left. John London jumped through hoops and somehow managed to get the correct approvals through the FDA and other groups to get this treatment for Penelope. The doctors had sent Penelope home with no hope as she had exhausted all treatment options that her body could handle. Over eight weeks later, Penelope is doing very well and full of energy and life.
Neil managed to get Sammy started on the same treatment plan. Today is a huge day for the Hutchinson family. If the scans show stable disease or regression, then Neil will fly from California back to Vermont to pick up another supply of Nifurtimox for the next round. There is so much riding on the scan for Sammy and for the rest of the NB world.
Sammy and Penelope are heroes to us. They are on the cutting edge of new treatment. They could be the ones to prove that this treatment is a part of the cure for NB.
The TEAM SAM website is http://www.teamsam.com/.
The Caringbridge site for Penelope is http://www.caringbridge.org/ny/penelope/