Here's the bad news.

The long story is this:

Zoë lived in Eugene Oregon, for the first 4 and a half years of her life. At about the age of 3 years old she started getting sick frequently, and it seemed like it was always bad. She always had a high fever, and vomiting. We were told it was allergies. At this time she started showing signs of sleep apnea. Her Grandfather and I both have severe sleep apnea, so we took her to see a specialist. He gave her some nasal steroids and sent us home. Her frequent illnesses continued, as did her apnea.

In the summer of 2007 her apnea got even worse. In the Fall of 2007 we made the hard decision to move to Portland to attend Portland State University. Before the move Zoë inexplicably hurt her neck, the Dr. said that it was just a sprain and that it would go away. We also noticed a "bump" on the back of her neck, all of the Dr.'s thought that this was just some glands that were inflamed from the tonsil and adenoid irritation, even the Dr.'s in Portland.

We settled in to our new life in Portland and found a primary care Physician, who referred us to an Ear Nose and Throat specialist, Dr. Cuyler. He immediately thought that Zoë should have her Tonsils and Adenoids taken out. We felt like finally something was being done.

In March of 2008, Zoë had her Tonsillectomy at Legacy Emanuel Hospital. During the surgery Dr. Cuyler found a mass in her throat. So he took a biopsy, and told us about it. The biopsy results came back as a "Benign Plieomorphic Adenoma of the Salivary gland". This is very rare in children, it usually happens in middle aged men. So the plan was formed to get a CT scan, so that it could be mapped for removal. They took forever to get the CT scan scheduled, so Zoë's Primary Care Physician, Dr. Evan-Smith called and cracked the whip and got an appointment.

So on April 22 2008, she had her CT scan, and we waited to hear the results. On the 23rd we received a phone call from Dr. Cuyler and he said "wow" this tumor has wrapped around some blood vessels, has burrowed into the Spinal Column, and is trying to burrow into the brain. He wanted us to bring Zoë into the Hospital immediately.

When we arrived at the Hospital, Zoë was immediately put into a neck brace, and bed rest. She had an MRI that very night. A team was formed of: an Oncologist, Dr. Shardy, a Neurosurgeon, Dr. Wehby, A spinal trauma group, and the E.N.T., Dr. Cuyler. Everyone was worried because this type of tumor does not behave like this. There was much contemplation, and planning, but in the end it was decided, by my suggestion via Dr. Wehby, to take a biopsy from the back of the tumor, to see if the aggressive part of this tumor was maybe a different type of tumor. The Neurosurgeon felt that surgery was not an option at this time, due to the nerves and blood vessels that the tumor has wrapped around. The Radiation Oncologist felt that due to the same reason he could not use radiation and not damage the brain and blood vessels. The biopsy was done on Friday, the family was allowed to go home for the weekend, and an appointment was set with Dr. Shardy for the following Wednesday.

On Wednesday, they were told that when the scans were included with the biopsy another type of tumor matched up, Chordoma.

From Chordomafoundation.org

"Chordoma is a slow growing, relentless bone cancer that occurs in the head and spine in people of all ages. Chordoma is typically resistant to chemotherapy and radiation, and is prone to multiple recurrences. The average survival after diagnosis is 7 years; a statistic we are determined to improve."

"Chordoma is a primary malignant bone cancer that develops from remnants of embryonic notochord in the skull-base (head) and spine."

So, all of this new knowledge left us back at surgery as the only option. Dr. Wehby, the Neurosurgeon was out of town at a convention, and would call them on Thursday. When she called she had good news. She was confident that she could not do this surgery, but, at the convention, she ran into the one surgeon that can do this surgery. This type of tumor is his "thing", and he wanted to see Zoë on Friday.

On Friday, the MRI, and the CT scans were hand delivered to his office, and an appointment was scheduled for the following Monday.

Zoë's insurance is the Oregon Health Plan, which will have some difficulty in getting approval for out of state surgery, and experimental drugs.

Please give any donation that you can.

Thank You,
Henry Perreault (Zoe's Dad)