In the last few weeks, Campbell has had major disease progression. There is no known cure for multiple recurrent anaplastic ependymoma, what Campbell has. When Cam first recurred in 2011, we were in unchartered waters. Since then, we have tried a total of five clinical trials, one multiple drug protocol, one experimental usage of a drug based on research being done at St. Jude, and one compassionate usage of an adult medication. We have tried all clinical trials available to Campbell. Only one worked for about 11 months. The others have failed miserably, with massive growth in her brain tumors. This year alone, Campbell has tried three treatments, without luck. She has now had a total of nine major brain surgeries and one spine surgery. We have had full gene sequencing done on all of her tumors ever removed, to help guide treatment choices.
We have one last protocol available to try to kill Campbell's cancer. This protocol has not been arbitrarily chosen. Sick Kids hospital in Toronto, Canada, a premier center for ependymoma treatment and research, found that these two drugs when sprinkled on PF primary ependymoma cells (what Cam's are) in a lab, had a remarkable death rate. This rate was increased when the two drugs were used in combination. I am not being melodramatic when I say, this is our last hope. Cam's tumors are growing rapidly, including one that has now infiltrated her brain stem, rendering it inoperable.
Both of these drugs are FDA approved for use in children. Azacitadine, an IV chemotherapy, has been approved. The second agent, Vorinostat (also known as Zolinza or SAHA), is an oral chemotherapy, has been denied. The reason given is that it is not FDA approved for treatment of ependymoma. Here's the catch - nothing is. There is no known effective chemotherapy for ependymoma.
Not only do we have the Sick Kids research data, and also two other patients who have successfully used this therapy for disease stabilization, but we have Campbell's gene sequencing. This sequencing provides extra evidence that this two drug combo is a good choice for Campbell. Good is almost irrelevant. It is her only choice at this point; that or death. By not allowing her take this medication, Anthem, our insurance company, is giving Campbell a death sentence.
We do not have time to waste on the lengthy appeals process, which can take months. She is declining rapidly. Campbell is supposed to start this oral chemotherapy tomorrow. We can pay for the medication out of pocket, $5,000 per month. However, seeking all possible treatments for Campbell over the last five years has depleted our savings. We don't have the $10,000 needed to cover the first two cycles of medication. Then Campbell will have scans to determine if the medications are working.
We are humbly asking if you even have a few dollars to help, to please donate.
Much love and gratitude,
Greg, Robin and Cam
Posted by Robin Metcalf Hoyt
Posted by Robin Metcalf Hoyt