Saturday, October 29, 2011

I spent Friday on the phone and online, gathering information, researching options, and trying to educate myself on information and terminology that is difficult to understand, at least without a medical degree. I'm still trying to process and make sense of things. It has been daunting, overwhelming, tiring, and consuming. It's almost 3 am, and I've been reading about different kinds of radiation, anti-angiogenic agents, etc. I feel like I'm back in college, only the stakes are a million times higher.

Our oncologist called Friday morning to let us know that she had spoken to St. Judes. At this time they won't consider Collin for their Phase II trial because he is not yet three years old, and because he has not yet had radiation. (And as a side note, after reviewing the original tumor pathology, it is her hunch that Collin's tumor does not have the hedgehog pathway anyway). It seems so far that the general opinion is that radiation has the most potential to cure this, but our oncologist is hoping to be able to combine some other treatment with the radiation to enable Collin to have a lower dose of radiation. If he were to have the highest dose of radiation that would have the best likelihood of curing the disease, chances are good that he would never be able to live independently because of the cognitive deficits he would be left with. So the trick is to figure out what dose, and what kind of radiation to do that would have the best chance of attacking the cancer without leaving him debilitated. At this point, our oncologist's recommendation is to have a consult at Memorial Sloan Kettering. If Collin would qualify for their trial, perhaps combining a lower dose of IMRT or Proton Beam radiation along with or after administering intrathecal radioimmunotherapy (the radioactive iodine that would be injected directly into the ventricle in the brain) would have the desired effect of killing the cancer without such cognitively debilitating side effects. So, I spoke with MSK and provided them some basic info, and they will contact us to arrange a consultation after the insurance is worked out. It is possible that we could be headed there by the end of next week for a consultation.

After my first phone discussion with our oncologist Friday morning, I posted the information from that phone call on one of the online groups of parents of children with Medulloblastoma. Two parents called me to share their experiences with different kinds of treatment. These discussions were immensely helpful to me. I learned more information about different treatment options, and came up with some important questions to ask during consultations. I also sent email to a few other doctors to see if they'd consult with us.

I am quickly learning that dealing with relapse is in many ways harder than going through this the first time. As Collin's oncologist told me yesterday afternoon, after the initial diagnosis last year, she did the agonizing over what treatment would be best for Collin, and presented us with a plan. But for relapse, there are no proven protocols to follow. We must research the different trials and treatment options out there, see which ones Collin qualifies for, and make a decision based on the information and opinions we're given. Different treatment options work well for some, and not well for others. Different tumors respond differently. There is no rhyme or reason to it. In the end, you roll the dice and hope to God that the choices you make are the ones that will cure your child.