A Big Decision To Make

I have had some news to share for about a week now. I have a couple of acceptable reasons for being late with this. I am drowning in work right now (not such a bad problem to have), the news is extremely medically detailed, and the real problem; it is good news wrapped in very hard shell. It is good news that also makes me sad. I feel like cancer has come around and punched me in the face.

Here are the facts. I will do my best to make this readable. :-)

The treatment plan Hannah is following is a clinical trial study. It is specially designed for children who were originally standard risk, then didn't respond to chemo. Most patients have zero cancer left at 29 days into Induction, the first phase of treatment. Obviously, Hannah did not. She is now on the high risk arm of that study. That plan was taken from a trial designed for kids who were high risk from the start. Age and presenting white blood count are the main determining factors for this group.

That high risk study was cancelled last week in favor of another study for high risk kids due to "far superior results". COG, the group of oncologists who make the studies, are considering it unethical to let the other group continue on, while there is a treatment plan available that is working so well. The study plan that works differs from ours in that they use a dramatically higher dose of the chemo drug methotrexate, HD Mtx for short, vs our study which uses the capizzi method of an escalating lower dose of Mtx. In our study, if your child's ANC was at 750 or higher, during the Interim Maintenance phase, they would receive increasingly higher doses, not to exceed 350mg. In the HD Mtx study during the IM phase, they receive 5000 mg of methotrexate. It is making a huge difference in their incidence of relapse.

In order to give that dose of methotrexate, without it being lethally toxic, patients are admitted to the hopspital for 3 to 4 days, hooked up to a round the clock IV and given a "rescue" drug shortly after the huge dose of Mtx. Methotrexate is a folic acid blocker. The rescue drug, Leucovorin, is a type of folinic acid, that can help the bone marrow and the stomach from the toxic effects of methotexate. It works because it is a form of tetrahydrofolate, the end result of folic acid in our bodies, that does not require the conversion action of dihydrofolate reductase, which Mtx blocks. Ok, that is confusing. It will have to stay for now due to time reasons. I will edit this paragraph later, promise.

Hannah is already finished with both phases of IM and heading into Delayed Intensification 2. What COG is recommending, is that we consider adding a HD Mtx phase to begin when DI2 ends. The choice is ours. Keep her on the plan that has all the relapses and hope she is not one of them or try the HD Mtx route with all it many and horrific possible side effects. Not to mention her quality of life this summer. Going from the DI2 right into eight weeks of HD Mtx is going to be more awful than I have words for. However, the potential alternative to is just unthinkable.

In the end we are lucky to have the opportunity to move to a study that is working. I will have to work out the mushy emo reactions separate from what is really best for Hannah's long term survival. It is heavy to say the least.