Colorblind James Experience is much more obscure than Paul Simon, but fortunately they have a MySpace page, so anyone unfamiliar with the band can find their tune “Considering a Move to Memphis” online. Not surprisingly, the refrain chants:
I’m considering
I’m considering
A move to Memphis
A move to Memphis
Perhaps the one lesson that we have learned from this unexpected journey is the importance of flexibility. Intellectual rigidity, stubbornness and ego have no place in making good decisions, and a decision belongs in the moment it is made. As new information flows in, the fact of an earlier decision does not change the need to process and, possibly, adjust course again.
Today, there was an event at the Hassenfeld Clinic for survivors of the Head Start brain tumor chemotherapy protocols. The study leader, Dr. Finlay, came and spoke to parents about the goals of the protocol and how it works. Dr. Gardner, our oncologist here, encouraged us to go, as it was a tremendous opportunity for us to learn more about this protocol and speak with Dr. Finlay.
We were not disappointed and did manage to bend the doctor’s ear for quite a few minutes. In summary, we understand that the point of the protocol originally was to use chemo to delay (then-inevitable) radiation. Eventually, the idea was to replace the radiation with chemo when possible. The protocol embraces all pediatric brain tumors, and it has not, as we know, demonstrated much success with ependymoma.
The limited evidence shows that metastatic ependymoma does respond better than its less virulent counterpart. They speculate this is because chemo pursues fast-growing cells, and more aggressive tumors grow more quickly.
Dr. Finlay was not familiar with the St. Jude protocol and was surprised to hear first that they were offering us chemotherapy and second that they have integrated high-dose methotrexate into their study. I mentioned the adjustments they have made to the administration of the drug (infusing the same dose over a longer period of time to reduce the toxicity to the child) and the overall emphasis on making the regimen better tolerated by the patients.
During his presentation, Dr. Finlay mentioned the role of thiotepa in the Head Start protocol. This drug crosses the blood-brain barrier easily, so it is especially effective with brain tumors. However, it is also highly toxic to bone marrow, so its use requires an autologous stem cell transplant. He and others say that this part of the protocol, although it sounds awful, is actually well tolerated by the children. It’s not clear, however, if that refers simply to how the children feel or their resulting rate of complications. It is somehow not very reassuring to hear that the induction is the worst part.
At any rate, these facts all provide a lot of food for thought. First and foremost, it is critically important that we settle the issue of metastasis. If there is no metastasis and the tumor is localized, St. Jude definitely offers the most appealing option for us at this stage. If there is metastasis, then we need to consider whether we think that the thiotepa is important in treatment. The problem is that the stem cell rescue needs to start before chemo and within the first round if we are to go that route.
The role of thiotepa does not seem clear to us. Metastatic ependymoma responds well in the induction phase, before the thiotepa begins, but perhaps the thiotepa plays an important role in further staving off the disease. However, we also surmise that there must be a sound oncological reason for the St. Jude protocol for high risk tumors to not include the thiotepa (they certainly know about the blood-brain barrier issue!).
In short, today was an opportunity for us to take additional steps to make sure that we are making the best decision possible. Until we move Colin, we are able to change course (not that we think this is likely). Most importantly, we need to decide what to do and get Colin in treatment before the tumor has a chance to regroup.
Tomorrow, we have our list of questions and hopefully will get the answers we need to move ahead with confidence. The compass needle still seems pointed toward Memphis, but we have to allow it to find its magnetic truth.