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TJ's Story:
Why we ride Dear Friends, Our family’s story begins in October of 2003 with a routine
CT scan for our 1 ½ year old son, Timothy (“TJ”),
to “just rule out some things.” TJ had not been gaining
weight through the summer and while specialists were convinced it was
a digestive issue, they could never get to a definitive diagnosis. Five hours earlier our most important family issue was choosing Halloween
costumes for the three boys. Thus began our new journey through an
8-hour brain surgery, two year-long chemotherapy treatments and no
guarantees on what tomorrow will bring. Fighting for TJ’s life Even the more fortunate children face tremendous challenges. Brain
tumors by definition are difficult to treat, and the most effective
treatments often have punishing and permanent adverse side effects.
Before starting chemotherapy, parents must sign a release form describing
the risks involved in the use of chemotherapy with children. Our release was 17 pages long. We had to laugh (and cry) when we were comparing the two treatment
options: Should we go with Treatment One, which had a high probability
of kidney damage, severe hearing loss, and sterility, or Treatment
Two, which has been known to cause severe liver damage and second-stage
leukemia? Neither was even guaranteed to help TJ. Unfortunately, our decision soon became moot. TJ’s tumor began
growing again after his first year long treatment ended in February
2005. TJ started the second treatment option in June of 2005 and finished
in May of 2006. He endured 110 weeks of toxic chemotherapy treatment.
Yes, over two years. Living Day to Day Most incredible through this whole ordeal has been TJ’s indomitable
spirit. He has been blessed with an enthusiasm for life and a courage
that is hard for us to fathom or fully articulate. We like to think
God has blessed TJ with a fortitude that he knew TJ would need for
his difficult journey. Remarkably, he has rarely complained despite
years of innumerable clinic visits, MRIs, middle-of-the-night hospital
trips, and a steady stream, until recently, of incredibly nasty medicines.
Even when we had to tell him recently that we thought he was going
to have to start more chemotherapy he answered in his typical easy
going way that it was ok, he didn’t mind going back to the clinic.
He is now in Kindergarten doing very well and spends his waking hours
smiling, laughing, running around the house at full speed, and playing
ball with his brothers, 9-year-old Michael and 10-year-old Jack. The
boys love for each other and the older boys’ kindness has been,
by far, the most effective therapy for TJ. Help is on the way – or is it? Throughout our ordeal, we were certain that major advances were being
made against TJ’s disease. How could there not be? We’d
all heard of the Genome project and cancer breakthroughs. We saw the
Pan Mass Challenge raise millions of dollar for Dana-Farber in their
last bike ride. We idyllically had this vision of researchers in labs
across the country cracking the code on more effective chemotherapies
and cures for children’s brain tumors and, specifically, Juvenile
Pilocytic Astrocytomas. And having three boys under the age of 6 at
the time, one with a brain tumor, we were just doing our best to keep
our head above water. We actually were comforted thinking the medical
cavalry was on its way that would save TJ’s life. Reality sets in The disturbing facts: Hope for progress Until Team TJ, and other parent families began this fight, there was
NO meaningful research occurring in PLGA tumors. A lonely orphan disease
with little hope of breaking the cycle of no funding leading to no
researchers being interested in the field. We are excited to report that we’ve made important strides in
getting the cancer research community to take notice and get involved – and
it is directly because of your kindness and financial support. Combined
with several other families, we raised over $1,000,000 in last year’s
Ride for Research that we’ve used to target research to directly
help TJ and children like him. Our progress includes: • Establishing a multi-year, $2 million pediatric brain tumor
program focused on Low Grade Astrocytomas at Dana-Farber Cancer Institute
with the major support of several other families in March, 2007. We need your help – Team TJ rides again! Many of you have asked over the many months how you can help our family.
We’ve always been uncomfortable imposing on friends and family
since everyone is faced with their own challenges. But we’ve
resolved that we owe it to TJ to put our apprehension aside because
he is in a race against time. We believe that these dedicated
fundraising dollars will result in research that could literally save
TJ’s
life. We hope you’ll consider making a donation in honor
of TJ. Please see the donation page. Our personal goal this year is for Team TJ to raise $300,000 from
the bike ride. With other families, we hope to raise targeted JPA research
funds from the ride of over $1,500,000. We also hope that, if possible,
you will consider joining TJ’s team as a rider and fundraiser.
The ride is a wonderful way to spend a Sunday morning and has rides
of 10, 25 or 50 miles which allow for people of all ages to ride in
the event. The ride requires a $500 fundraising amount and we are happy
to personally help support your efforts if the amount is a concern.
We can also guarantee some fun considering the wonderful people already
committed to riding. We are also hoping with your help to multiply the number of people
we can touch with TJ’s story. Please consider forwarding this
message along to your friends and family – we think that this
could be incredibly powerful in helping our son and raising awareness
of this neglected children’s disease.
Your support this past year and our initial progress makes us believe
even more strongly that miracles can happen and this dream can be a
reality. While we have just started on this journey and need significant
financial resources to make meaningful progress, we believe that we
can achieve great things together. From the bottom of our heart, we thank you for considering helping
TJ, our family and the thousands of other children fighting the good
fight and racing the clock for a cure.
Love, Liz and John ** We were fortunate to have our foundation’s efforts
profiled in a recent CNN.com health story “How to Save Your Own
Child” helping us get the message out more broadly. The story
can be found at: http://www.cnn.com/2007/HEALTH/12/27/ep.cure.child/index.html
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