BENEFITING: MASSACHUSETTS GENERAL HOSPITAL
ORGANIZER: MASSACHUSETTS GENERAL HOSPITAL
EVENT: 2015 Boston Marathon
EVENT DATE: Apr 20, 2015
UPDATE: The MGH Team has an inspiring program that matches runners on the team with patients. Just recently I was matched up (along with my friend and fellow teammate Melissa Foley) with Christina, a 5 year old girl who is undergoing chemotherapy at MGH for a tumor on her spine. We met with Christina and her family last week for the first time and I am truly amazed at her strength and resilience. I am looking forward to more meetings and getting to know her and her family better and am looking forward to seeing Christina on Marathon Monday! I am honored to run for Christina and her family and share her story.
Below is her story as told by her father, Ryan.
A few weeks before her birthday last year, Christina began complaining of back pain. The pain started as nothing more than "daddy, my back hurts" and she would just continue to play. After about two weeks of this the pain started to progress to being more severe, culminating in her waking from a deep sleep in the middle of the night screaming and crying in pain. I couldn't touch her, she couldn't get comfortable, and she just cried all the time and laid on the couch.
During this time we kept on having easy tests done on her to try and figure out what was causing this. Everything was coming up negative. On Easter, after literally spending the entire day on the couch crying, I took her to the ER and she was admitted for being impacted. They thought that her lack of bowel movements could be causing all this pain. Two days later she was released after being cleaned out and her pain subsided. Two days after that it returned. At this point I demanded that she have an MRI done on her back. All of the doctors were a little reluctant but I insisted. So we went to have this done on Friday May 2 at Mass General Hospital in Boston. The plan was for her to have about a 4 hour scan of her entire back done to see what they could see.
Six hours later she came out. In a nutshell, we were told she wouldn't be going home and we immediately met with a pediatric neuro surgeon. They had found a tumor that was approximately 5cm tall and 2cm wide stuffed inside her spinal cord canal. Officially it was from T9 to L1 in her column. She's a bit of a peanut, so a tumor this size runs almost the length of her entire back. The doc told me it was "significantly sized" and he hadn't seen a tumor that large in someone this young before. So he wanted to be aggressive and start immediately. She was admitted that night and she had what turned about to be about a 9 hour surgery Monday to hopefully remove it.
Unfortunately, they weren't able to get it all during surgery. So he pulled out what he could, about 60% I learned later, but had to leave the rest. The reason was that this tumor was "mixed," exhibiting both benign and malignant features. The bottom portion of her tumor was infiltrating her cord, so they were not able to get it out.
The tumor is in the area of the cord that controls bowel, bladder, and motor function and feeling of her legs and feet. We now know this is why she was impacted. Immediately following her surgery, she couldn't feel or move anything below her hips. Needless to say, this scared her (and me) to death. We spent the first few days and nights awake with her confused and angry. She couldn't really comprehend what was happening and often screamed out "why can't I feel my legs! Daddy, you need to help me!" It was awful.
Day 3 post-op she really turned a corner emotionally. She's a very strong willed kid. It was on that day that she decided, finally, that she would walk again and began trying to move her toes and feet. This was a huge day for us. She smiled and it became a game for her to be able to show people how much she could wiggle things. At this point she progressed significantly each day in terms of how much she could move. She went home in a wheelchair May 10, still not able to walk but determined she would. Through PT and her desire to want to walk again, she now motors around at nearly full capacity.
When pathology on the tumor was completed, they finally classified it as a low grade astrocytoma with pilocytic features. This type of tumor is most commonly found in the brain in kids but can be in the cord, like hers. We are fortunate to be at Mass General as they are one of only two hospitals in the world with a proton- based radiation machine. This technology allows them to focus the radiation energy to with millimeters of the target, all-but eliminating harming anything surrounding the tumor. However, because she is so young, they are trying not to perform radiation on her until her early teens, if possible.
In the meantime, she is undergoing chemotherapy. Because of the location and size of what they were not able to remove, they did not feel comfortable just waiting and watching. So, in early summer of 2014 she had another surgery to implant a port under her skin and she began chemo. Her current chemo protocol will probably run through this summer. After that, she will get a break and we will watch the tumor closely and monitor her for changes.
Unfortunately, right this minute we don't know how long this will last. Some kids really respond well to this drug and in about 30% of cases the tumor will shrink and disappear. Hopefully she will be one of those. If not, the hope is to stop it from growing until she is old enough to undergo the radiation.
Her medical team (made up of a pedi-oncologist, a pedi-neurosurgeon and a pedi-radiogic oncologist) said to me "she will be cured of this, we are sure of it. This treatment plan is geared toward making sure that her very long term prognosis is the best it can be."
She does have some nausea for about two days post treatment and I noticed that her hair is starting to thin out a little. But over all, she is doing great. I think about all that she has been through and how she has handled herself and I am in awe. She is so much stronger than I could have ever imagined and definitely stronger than I am! When I start to feel down about all of this, I look at her, what she has had to endure, how she has handled herself and how happy she is now, and it gives me my strength....my brave little girl.
Reading her story and putting a name and an adorable face to the organization we are running for makes this experience much more personal and rewarding knowing that Christina and her family are going to benefit from your generous donations.
Friends and Family -
I am honored and humbled to have been selected to run the Boston Marathon with the Massachusetts General Hospital Pediatric Hematology and Oncology Team in 2015! Since 1998, with the partnership of John Hancock, the Mass General Marathon Team...Fighting Kids’ Cancer, One Step at a Time...has raised over $10 million to support the pediatric hematology-oncology program at MassGeneral Hospital for Children (MGHfC). Funds raised are directed to cancer care and research initiatives that enhance the quality of life for the hospital’s youngest cancer patients.
Cancer, in some form or fashion, has impacted all our lives. But I think we can all agree there’s a special place in our hearts for children fighting this disease…and those who are working to cure it. This is an opportunity for me to advance the cause of eliminating cancer from the face of the Earth! As a mother of two wonderful children, I couldn’t imagine running for a more worthy cause.
I have many cold, slippery days ahead of me to train for the marathon – something I gladly accept in support of fighting kids' cancer. Please consider giving to this program and helping me achieve my fundraising goal! I thank you in advance for your generosity.