Matthew Evan Passarella

Matthew (meaning): Gift of God

Even before we were married, my husband and I decided that if we ever had a son we would name him Matthew. On September 19, 1993 I gave birth to our first child, a boy! From the moment I held Matthew I felt an instant bond with him. I knew there was something very special about him. At the time I thought it was perhaps because of the clubfoot he was born with and what he would have to overcome with that disability. Even though it was difficult at times, we were always thankful that Matthew's condition was one that could be "fixed".

On December 28, 2000 Matthew had his second foot surgery. It was after this surgery that Matthew could not use his right hand or arm. His arm was so weak that he could not lift it off the bed. Prior to his foot surgery, Matthew had incidents of falling, which we attributed to his clubfoot. His teachers also noticed he hadn't been using his right hand. We had taken Matthew to the pediatrician in October but she assured us the strength in his right arm and hand was fine.

On January 11, 2001, two weeks after Matthew's foot surgery, we took him to the pediatrician because of his arm. We had no idea what could be wrong. We just knew something was not right. After her examination, the pediatrician told us she wanted us to get a CAT scan immediately and that we should be very worried. By 5:00 pm that day we learned Matthew had a mass in his brain. I felt myself spiraling down into this deep, dark pit, feeling alone and full of despair.

Matthew had a MRI the following morning that confirmed he had a tumor located in his brainstem. The doctor told us Matthew, our seven-year-old son, had a diffuse pontine brainstem glioma and had 6-9 months to live. We were told a biopsy would be too risky and pointless and that all we could do was have Matthew get radiation treatments which would alleviate his symptoms….not cure him.

We had nowhere to turn but to God. We have been given a miracle and I cannot tell Matthew's story without acknowledging what God has done for us. We were led to Johns Hopkins where, after reviewing Matthew's scans, the doctors felt a biopsy should be done. Matthew had surgery on February 5, 2001 during which the surgeon was able to remove over half his tumor. After the final pathology report was in, the doctor came to Matthew's room and told me, with tears in his eyes, that Matthew had a low-grade tumor, not an aggressive glioma. He told us Matthew would be able to celebrate many birthdays to come.

Matthew went through months of rehabilitation, learning to walk again and regaining strength in his right side. Matthew is now in school full-time, doing everything a nine-year-old boy should. Since his surgery, Matthew has taken karate and swimming lessons, enjoyed trips to the beach and Disney World. We feel blessed to see him growing up and playing with his five-year-old brother and best friend, Luke, and two-year-old sister, Emma (who was born on the night of his diagnosis).

Matthew is currently on a six month MRI follow up schedule. Since his tumor is so low grade we are taking a wait and see approach. Matthew's tumor has shrunk over 60% post surgery (without chemo or radiation) for which we thank God. We continue to pray for the day Matthew's tumor is completely gone. We have been given time-time to enjoy our son and for a cure to be found.

[FEBRUARY 19, 2007 UPDATE]

On June 21, 2005 Matthew underwent his second brain surgery to remove recurrent tumor. The operation was performed at Johns Hopkins by Dr. Ben Carson.

On October 25, 2005 Matthew underwent his third brain surgery to drain a cyst and remove more of his tumor. At this time, Matthew had an Ommaya reservoir installed.

December 20, 2005 Matthew had his fourth brain surgery to reposition the reservoir and drain the cyst.

In the hopes of stopping fluid from being produced, Matthew underwent 30 radiation treatments from February-April 2006.  Since ending radiation, Matthew has had his cyst drained several times.  Matthew is slowly improving—walking without assistance and using his right arm and hand.

-Andrea Passarella

Matthew's Story In Depth

Matthew's story, in pictures and words:

Diagnosis & Surgery: www.passarella.com/matthew.htm
Rehab & Recovery: www.passarella.com/matt2.htm
Latest Updates: www3.caringbridge.org/nj/matthew/
Matthew & Matthew's Miles Announcement Mailing List:
health.groups.yahoo.com/group/matthewsmiles/join

What Does Matthew Know?

When Matthew was first diagnosed with a brain tumor, the counselor at the hospital advised us that children may become frightened when confronted with strange, medical terminology. She told us to refer to the unnatural growth as a "lump" in his brain, rather than as a tumor, nor to refer to it by its more specific pathological name, which was thought to be a diffuse pontine glioma, although we now know he has a pilocytic astrocytoma.

To this day, we continue to talk to Matthew about the "lump" in his brain that shouldn't be there. He knows the lump was the reason for the extreme weakness in his right side. In addition, we decided that we would focus on the short-term concerns and not the (initial) grim prognosis. To this day, we have not told Matthew just how grim that early prognosis was. Matthew knows people all over our country and the world have been praying for his healing and for him to be tumor-free one day soon.

Please keep all this in mind if you should happen to speak to Matthew at the Matthew's Miles walk-a-thon or elsewhere.

All proceeds from the 7th Annual Matthew's Miles will benefit pediatric brain tumor research programs funded by the American Brain Tumor Association, a 501(c)(3) non-profit charity. Donations are tax deductible to the extent allowed by law.

PLEASE LINK TO MATTHEW'S MILES WITH THIS BANNER!