Sarah's Story

by Sarah's mother, May 29, 2006

I ride in the PMC (explained below) as part of Team Eradicate. Sarah is a little girl who is the Pedal Partner for Team Eradicate. If you know about Team Eradicate, or if you know about my efforts to raise money for cancer research via TMG Utility, you might be interested in this letter from Sarah's mother.

Dear Friends,

I have been sitting in front of the computer for weeks trying to write a letter to acquaint you with or reacquaint you with Team Eradicate. They are a group 30 strong who ride the Pan Mass Challenge (PMC) each year to raise money for The Dana Farber Cancer Institute in Boston. They are an incredible group of people who put the needs of others before their own. They sacrifice their own time and money to train for the ride of a lifetime, each year, in order to bring the doctors closer to finding a cure for cancer. What makes this a hard task is that they are not riding for a nameless stranger who appears on a commercial, they are riding for a little girl named Sarah and she is my daughter.

Sarah's fight began two years ago when she was diagnosed with Acute Lymphoblastic Leukemia. She was a week shy of her third birthday; this was certainly not the birthday present any of us expected. We spent her third birthday on 7 West at Children's Hospital in Boston. The treatment for leukemia is a long protocol; it is two years and 29 days of chemotherapy. Sarah began hers on April 1, 2004.

Sarah was lucky, she responded well to the high dose chemo during the first 29 days of treatment. She was not too sick and the cancer did what it was supposed to do, a bone marrow biopsy determined that she was in remission on April 29th. We all took a breath and got ready for the long fight to keep her there.

Two years later she is still in remission and has just finished her treatment. Her final dose of chemo was a moment filled with both relief and terror. It is a very strange feeling. During the past two years we were just trying to get to the end of treatment. That was the carrot dangling at the end of the race. Just make it to the end, that was the mantra. I knew when the end was before she had gotten through the first 29 days! As the end of treatment grew closer, the fear and anxiety increased to a level for which I was totally unprepared. For 2 years the doctors assessed her blood each week and assured us that all was well, now we had to go for a whole month without that reassurance. The safety net of chemo is gone and now we have to wait and pray that the cancer does not return.

We also have to put our lives back together. We have to figure out what normal is going to be for our family and how we adjust to the changes that cancer brings. Cancer has brought many changes to Sarah and to our family.

Nothing comes for free when you deal with cancer, there is always a price to be paid, some bigger than others. Sarah has done well with the cancer but paid in side effects from the chemo. The doctors tell you all the things that could possibly happen as a result of chemo, but most of the bad things happen to only a tiny percentage (1-2%) of children on treatment. Someone had to be that 2% and Sarah was that someone. Sarah had severe effects from the prednisone. It thinned her bones so much that she broke both ankles going down a small Fisher Price slide. She broke again when she stumbled on a rug at her 4th birthday party and again when she fell off her bike. She had one break that we couldn't link to a cause. We had to stop doing x-rays each time she got hurt because the doctors were afraid the repeated radiation would harm her bones and make her prone to cancer in those areas. The price for remission was rising. Sarah was still walking; she wore a removable cast and eventually wore air casts for support. She seemed to be on the road to recovery and everything was going to work out just fine, but then the price rose again. On November 8th, Sarah had what looked like a small stumble; she has not walked on her own since that day. The cause, they believe, is neuropathy from Vincristine, one of the chemo drugs. It has caused damage to the long nerves of the legs so that she is not able to walk. They hope she will walk again, they hope she will run again, but they have no idea if it will happen. We have to wait and pray for a lot of things now.

Sarah is an amazing little girl; she just goes with the flow. She "walks" on her knees to get around and is darn fast! She has physical therapy twice a week and occupational therapy once a week at Children's Hospital. She doesn't complain; this is our new "normal" life. I have a daughter with a disability now, but I have my Sarah. I will do anything to keep my baby and give her a lifetime.

The doctors and Dana Farber have come a long way in 30 years. Thirty years ago Sarah would not have had a chance at a lifetime. Leukemia was a death sentence. Today that is not the case: 85% of children survive leukemia. The goal now is to help those fighting the disease pay a smaller price. The new research is aimed at making the treatment less toxic so that there will not be long term side effects.

This is where you can actively play a role in the war against cancer. Your financial support of Team Eradicate will allow the doctors to develop protocols that are less toxic and will do less damage to the healthy cells. They will develop new drugs that may work harder faster so the treatment time is decreased. Decreasing treatment time means less stress on the child as well as the family, therefore doing less damage to the healthy members of the family. Cancer is not just a disease for the person diagnosed but is a disease for the entire family.

There are many things that are unsure in our future. Will Sarah walk? Will she remain healthy? I don't know. What I do know with all of my heart is that we can all make a difference. We can all be part of the cure! I hope you will join Sarah and our family in our fight to find a cure for cancer in our lifetime by making a financial contribution to Team Eradicate. These amazing people will take the ride of their life to find a cure for cancer one mile and one child at a time.

Sincerely,

Michelle (and Eric, Rachel and Sarah)

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