Thursday, October 27, 2011 Recurrence, Options

Collin has a small nodule in his right lateral ventricle. It is new, and because of how it enhanced on the MRI, they know it is leptomeningeal recurrence. Basically a cancer cell was able to hide from all the chemo, and now that the chemo isn't there to keep the little bastard in check, it has started to grow.

The good news is that there are many treatment options that Collin hasn't had yet, and new treatments have been developed even since his original diagnosis last year. His oncologist feels this can still be curable. She went over a few different options with us today, and over the next week or so some additional testing and consultation will be done to determine which option will be the best one to try next.

Collin will have another spinal tap Tuesday to check his CSF for cancer cells. Despite the coating of cancer cells on his spine at the original diagnosis, he has never had cancer cells in his CSF, so his oncologist doesn't expect to find any now. But the presence of any cancer cells could disqualify him from some trials, so we must check again. In the meantime, slides and samples of the original tumor tissue will be shared with Memorial Sloan Kettering and St. Jude's to determine whether Collin will qualify for either of those hospitals' Phase II trials that would be appropriate.

At Memorial Sloan Kettering in NYC, there is a Phase II study of radio-immunotherapy given for recurrent medulloblastoma. If Collin's tumor has the presence of GD2, a certain protein not found on normal cells, there is an antibody that is attached to radioactive iodine. The radioactive iodine is then given directly into the spinal fluid, and it binds to the tumor cell and kills it. This brings the radiation therapy to the tumor cell without exposing normal tissues to radiation.

At St. Jude's there is Phase II study of the Hedgehog antagonist GDC-0449 in recurrent medulloblastoma. The hedgehog signaling pathway gives cells information that they need to develop. A subgroup of medulloblastoma patients have activation of the hedgehog pathway. If Collin's original tumor has this type of pathway, the current tumor would not be removed (to enable evaluation of effect), and a medication would be given orally for up to 2 years to disrupt the pathway.

Positive points to each of these therapies are that although Collin would need to be seen at one of these two hospitals at least initially, we would not need to stay at either place for extended periods of time. Some of the treatment can be done at home under the supervision of a more local hospital, like Hershey or CHOP. Collin wouldn't have to endure the nasty side effects of chemo such as vomiting and hair loss. There are also other chemo drugs that can be added to the treatment and given at home.

Some of the other questions we are left with looking at either of these options include whether insurance will cover treatment out of state (at least in the case of Sloan Kettering), and transportation. We can take a train to NYC, and there may be some organizations that can provide some assistance with travel expenses. In the case of St. Jude's, they evidently will provide their own transport there the first time, and then after that there may be some assistance from other organizations such as the Four Diamonds Fund, Angel Flight, etc. for the flights needed to get there and back.

Radiation is an option, but at this point it seems best to try other treatments first to give Collin the chance to get a little older so that the side effects wouldn't necessarily be so permanently devastating to his cognitive and physical development. If I understand correctly, getting him to the age of five before giving brain and spine radiation would be ideal.

So in the next week, we will wait for results of the spinal tap and tissue testing. Once we have more information, Collin will have a mediport reinserted, as well as any other ports/shunts/etc. needed for whatever option seems to be best for him. I'm asking for prayers that we will make the best decisions possible for his care, and that we will be able to cure this completely so that this beast cannot return. All children deserve to grow up and have happy, productive lives. Collin has been dealt an unfair hand, but he has proven to be strong and tough, and we will get through this one day at a time because that is our only option. I cannot thank you enough for the love and support that you have all shown us once again. It is so very humbling, and I don't know how I'll ever be able to repay it.