We're getting ready to wrap up our time here in Seattle. Mitchell's last day of radiation is Wednesday and depending on appointment times we should be home Thursday or Friday. The time has surprisingly flown by these last two months and although we look forward to going home and back to "real life," we have enjoyed this special time... with Mitchell. We pray it only gets better from here.
We've had some comments/questions that we thought we better clarify things a bit since I've given pieces at a time. Mitchell was diagnosed in November with a brainstem glioma. Typically brainstem gliomas are in the pons--the middle section of the brainstem/lower brain--and are high grade (III or IV) with a poor prognosis (10% survival). Mitchell's tumor is at the top of the brainstem in the midbrain where all the nerves come together. In this section, tumors are most often benign and have much better prognoses (65% survival). Mitchell's biopsy in November got enough sample to determine it is abnormal tissue--cancer--but not enough to grade the tumor. Because he had a MRI in April last year and another in November, the brain tumor team could see the rapidity of the tumor's progression (although they generally don't have those images to compare in other cases). Clearly from his symptoms, however, whether the tumor was high grade or low grade (benign) was irrelevant because Mitchell was severely ill and the tumor is in a terrible location. Because of that reason we pursued an aggressive treatment plan in hopes of stopping the tumor's growth (which, according to the doctors is all we should hope for). Even if the tumor is present, the brain can form alternate routes, etc. to compensate. This primary treatment (radiation) is a one time deal and will not be an option if the tumor grows back.
We are doing focal radiation through the University of Washington and go 5 days/week for a total of 30 days. In combination with radiation, Mitchell has taken temodar, an oral chemotherapy drug, in low doses. It optimizes the DNA breakdown of the cancer cells during radiation. Once this primary treatment is completed, he will get a 28 day break. Next we come back for a follow up MRI and begin a year of higher dosage temodar for 5 days each month by mouth at home. In addition to the temodar, our oncologist has recommended an additional bi-monthly combination of irinotecan (chemo) and bevacizumab (antibody) by IV , which means we will go to Seattle Children's for one day every two weeks. We are still considering the advantage to this additional therapy since there is no substantive evidence as it is in a Phase III trial.
So there are answers for those who are wondering. Mitchell will be doing a lot of PT/OT between Seattle and Children's Village in Yakima. He is improving every day. A couple days ago he woke up laying on his stomach and got up on all fours by himself! Chad has taken him swimming Friday night (after he gets his port-a-cath deaccessed) and Saturdays and he is using all four appendages wonderfully. He has made real progress and we are so proud of his efforts. We feel so hopeful. The other brainstem glioma patient at radiation (she has a DIPG in the pons) informed us of a natural medication called RUTA-6 shipped from India that from their research has shown real progress. A doctor at the NIH uses it with her DIPG patients. Our doctors here have given it out without real great success, but it's something I may try with him. I've also been reading about NUCCA chiropractors and may look more into that. Lots to think about and hope for! We are optimistic that Mitchell will continue to improve. He loves to say, "See! I'm getting better!" Our neuro-oncology nurse practitioner told us about a girl with a high grade glioma in the same place as Mitchell's who, six years later is a normal, symptom free teenager. The bottom line is we feel peace and hope in the future.
