Madeleine’s Story

Site created on June 26, 2005

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Madeleine O’Brien

Lake Oswego, Oregon

At age 5 ½, Madeleine was a clever, sweet, beautiful little girl who had a zest for life. She loved ballet, art, school, riding her bike, swimming, playing with her brother and friends. She loved to participate in everything – never passing up any opportunity. She still believed in Santa Clause, the Easter Bunny and the Tooth Fairy. Life for her was easy, fun and full of promise. Then one day in late December 2004, without warning, everything changed.

On Dec. 29, 2004, Madeleine went in for a routine eye exam. The Ophthalmologist saw “pressure” behind her eye and ordered an emergency MRI which was done the next day at Emanuel Hospital in Portland, Oregon. A brain tumor the size a lemon and a cyst the size of an orange were identified. The doctors could not believe a little girl could have such a large “collection” in her head and not be symptomatic. She was in imminent danger of strokes, seizures or death. Emergency brain surgery was performed that night. This is a parent’s worst nightmare.

The surgery, a “Craniotomy for Tumor Resection,” lasted more than five hours. The neurosurgeon said it was a total gross resection – they got it all. After surgery, Madeleine showed no neurological deficit. The tumor was identified as a “Supratentorial Primitive Neuroectodermal Tumor (PNET) at the right temporal Lobe.” This type of cancer at this location is quite rare. To obtain a sample of a hundred children with the same diagnosis, the physicians had to look back twenty years. This type of cancer is not staged -- it is simply termed “very aggressive.”

Despite “getting it all,” with surgery alone, the physicians gave the chance of recurrence to be 99%. Madeleine was left to fight cells you could only see under a microscope. With both chemotherapy and radiation, the chance of recurrence was stated at “about 50%.” Survival rates for recurrence are dismal – somewhere is the single digits.

We sought treatment opinions from five pediatric oncology teams around the country. Each institution gave us a different treatment recommendation. Because the cancer is so aggressive, treatment had to start immediately. After great debate and anguish, we decided on COG protocol 99701 which is a phase II protocol still under study. It was administered at Emanuel.

Protocol 99701 has two phases. Phase I entails six weeks of daily full brain and spine radiation. This was done under general anesthesia each day. Prior to radiation, Madeleine received chemo agents to sensitize the cancer cells. Each day, Madeleine arrived at Radiation Oncology at 5:30 AM. She received chemotherapy until 6:30 AM when she would go under general anesthesia to receive radiation. After phase I, Madeleine had a six week “rest” period.

Phase II consisted of six monthly courses of high dose chemotherapy administered in-patient (four days monthly) at the hospital. She was often re-admitted for “emergency visits” with fever and neutropenia. This is treated with IV antibiotics through her central line port. Also Madeleine needed scores of blood transfusions. Each transfusion involves day-long hospital visits. She also had many issues with feeding and needed supplements to fight malnutrition including food additives and steroids. Ultimately she needed feeding tubes and IV food therapy.

After phase II of her therapy, Madeleine goes into a “watch and wait” period where she will receive frequent MRI’s. The watch and wait period will last at least ten years; however, the physicians have said 90% of recurrences with this cancer happen in the first couple years following treatment. Each subsequent scan will cause great anxiety.

Assuming Madeleine survives her brain cancer, she faces many, long- term, permanent side effect. Side effects include kidney damage, permanent hair loss, hearing loss, stunted growth, visual field cuts, memory loss, multiple endocrine issues, sterility and multiple cognitive issues including IQ loss, learning issues and social functioning. The treatments she has received are also known to cause subsequent cancers. Many of these side effects have high probabilities of occurrence and some are currently presenting themselves. Others take decades to manifest. Upon completion of her therapy, Madeleine will have a twenty year “roadmap” to track her cancer treatment side effects and will be fighting these side effects for the rest of her life.

Madeleine is a brave, beautiful, spirited little girl who is facing a killer she cannot see. She is bearing more indignities than anyone should ever face, with a grace and courage that is amazing. This is Madeleine’s journey. We can only hope and pray, while difficult, it ultimately is a long and happy one. Come cry with us, come laugh with us, come pray with us, but most of all, go home and hug your own children for they are precious. Enjoy and appreciate each moment you have with them and never take anything for granted.

God Bless and Carpe Diem.

Newest Update

Journal entry by Katherine O'Brien

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.


God Bless.

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