It is with great sadness that I report Madeleine’s doctors found new tumor growth in her brain. On Dec. 30, 2015 – exactly eleven years to the date and time from her very first brain MRI and subsequent emergency brain surgery - Madeleine had a brain scan because of unexplained symptoms. The doctors discovered a new tumor growth on the left side of her brain near her inner ear canal. This is a random finding and does not explain the symptoms that led to the MRI. It is on the opposite side of her brain from her original tumor. I have known this for a while but didn’t want to upset either her or Connor during finals – and until some sort of plan is in place. I told them both last week but am not sure how much of it is actually sinking in. All of us are having a hard time coming to grip with a new diagnosis. It is so much easier to pretend this is not happening.
Next week we embark on seeing the gauntlet of doctors trying to determine what exactly we are dealing with and a treatment plan. The general guess is it is a new tumor, caused by the original treatment, namely radiation. The treatment options start with gamma knife radiation followed by surgery – neither of which are good options for Madeleine based on her treatment history. I was originally told she had received the lifetime maximum radiation to her brain and spine. Another brain surgery is a big risk also because of her previous radiation. Radiated tissue does not heal well. Further, despite all the typical risks of brain surgery such as strokes, hemorrhaging and seizures, based on the location, there is substantial risk of additional hearing loss, facial weakness, cognitive impairment and balance and coordination issues. Basically, treatment is not expected to improve anything, just perhaps save her life, once again.
Of course, the doctors do not really know what we are dealing with. As Madeleine’s original neurosurgeon pointed out, without biopsy, we do not what it is. However; if we do a biopsy, given the size and location of the tumor, it should most likely just should be removed. No clear options have been suggested. It is like gambling with my daughter’s life and quality of life.
We have spent the last month gathering records from her original treatment plan and radiation roadmap – no easy task. Next week, we see one specialist trying to determine next steps. We are first seeing a neurotologist out of the Legacy System as he has the best relationship with her original neurosurgeon. However, he actually doesn’t perform surgery in this area. His is just going to consult. In March, Madeleine’s case will be presented to Tumor Board at OHSU followed by a consult in April with a neurotologist at OHSU that has some experience in this area – mostly on adults in the 70+ age bracket. There is no pediatric specialist in Portland. Both of the doctors we are consulting admittedly have no experience in pediatric cancer.
I guess it is my job to pull the pediatric neruo-oncologists, neurosurgeons and neurotologists together. It is overwhelming to think about. My guess is this will be a watch and wait situation where we will continue to rescan until it is obvious that the risks of the tumor outweigh the risks of treatment. I don’t believe it is a matter of if, but when to treat.
Madeleine is a dear sweet girl that does not deserve this. My heart breaks to think I have to drag her through this once again. I hope I have it in me, as the thought is overwhelming. Madeleine works so hard to try to function in school and society and just fit in as a normal teenager. The thought of making this all more challenging is devastating. Being immersed once again in the world of pediatric cancer, medical specialists and medical facilities is isolating and lonely. What gets me through is her spirit and tenacity, and I feel she will need every ounce of her strength to persevere. She needs much support and many prayers. Please pray the tumor miraculously disappears. Please pray the doctors figure out a treatment plan. Please pray Madeleine has a long and happy life.