SCAN DAY AT CHOP! Feb 7th 2011
I had also been down to CHOP on Jan 24 for Ortho Clinic with Dr. Dormans.
Scans showed nothing to worry about. Great news. Next scans day is in three months.
RACE FOR RACHEL!!!
February 19, 2011 Hosted by the Monmouth Barracudas at Neptune Aquatic Center, Neptune, NJ
The Monmouth Barracudas Swim Team hosted the "Race For Rachel" swim meet in honor of teammate 11-year-old, Rachel, who was diagnosed with
Ewing's Sarcoma in January. She is the second kid on the team to be diagnosed with Ewing's in a year and a half, (Lilly was the first). Rachel's teammates
hosted this meet to raise awareness and funding for pediatric cancer research. The support from the Monmouth Barracudas was tremendous, and they
were able to raise $20,000 for research in Rachel's name. Thank you to all the swimmers, their families and supporters, Coach Paul, and especially Rachel
and her family for designating Make Some Noise as the beneficiary of the meet. Rachel joined our Junior Board soon after the event, and her dad joined
our Board of Trustees. They want to help us make some noise!
This is Coach Paul with three Ewing's Sarcoma kids, me, Lilly and Rachel. We all had
Dr. Dorman's at CHOP for our amazing surgeon.
The Barracudas are an awesome team. They are great swimmers and they have
really big hearts and want to help. Thank you Barracudas!
On March 4, 2011, the Florham Park PBA presented me with a $1,000
check to the foundation for research.
Thank you FP PBA!
February I went to Dana-Farber, Boston Children's Hospital to meet one of my Scientific
Advisory Board members, Dr. Diller.
She is the Head of research there, and she allowed me to video tape her for our website.
She talked about Survivorship issues with kids cancer. I also got a lab tour!
For March Break I went to Disney World with my family. My mom's parents flew in
from Seattle and met us there.
Me and Papa, (my mom's dad), on the water ride in Animal
Papa, Tutu, (my mom's mom), and mom on the water ride.
Me and mom on Test Track in Epcot. This is one of our favorite
rides. I can't ride a lot of the rides I used to but this one is ok I
don't get too slammed around.
My oldest brother, Harry. He's a senior in High School.
James, (my middle brother), dad, Tutu, Papa and Harry on the "Living with
the land" ride in Epcot. I love to eat at The Land, it is one of my favorite
places to eat in Disney, but this year we couldn't get a reservation. Mom and
I were sitting in the back and got to sit up higher in the handicap seating
since I was in my wheel chair.
Andy's Room, (Toy Story Mania), at Hollywood
Studios was pretty cool. You get to have
pop-gun wars with 3-D glasses. It is kind of like
the Buzz Light Year ride in the Magic Kingdom.
Mom and Harry on the Toy Story ride.
On the Safari ride in Animal Kingdom.
Me and Tutu. I beat her score, (by a lot but I don't want to
embarrass her by saying how much).
We went kayaking on a fresh spring fed river in a State Park. We saw
turtles which you can see in this photograph. We saw some really cool
One night we went to Fantasia Mini-Golf in
Disney which is really more like Executive Golf
because it doesn't have any obstacles the way
regular mini golf does.
James and I built RC cars at the Ride Maker store. It is like
Build-A-Bear only for RC cars.
Mom and James at Pirates Cove Mini-Golf. We came here when I was in
treatment, and now I make it a tradition to go there every time I am in
It is a really good mini-golf course.
It was really important to me to get a "before and after" photo on the bridge at Pirate's
Cove Mini-Golf. I was here for the first time when I was in treatment. It was just three
days before my surgery to remove my hip. Almost exactly two years later, I am back
on the same bridge.
March 6, 2009 - On chemo and right before surgery
I was 10 years old.
March 19, 2011 - Post-Treatment
I was 12 years old.
Sunday, March 27, 2011, we started producing our next awareness video called "Pie."
This one is really good. It helps people understand that funding for kids cancer really
needs to be increased if we are going to help speed up the cures.
|Producing our Next Awareness Video!
| We had a lot of help to make this video. Nonna's of Florham
Park was really helpful and allowed us to shoot in the restaurant.
Joe Morton was in NJ so Joe and Christine came up so he could
be the narrator for the video. Thank you Joe and Christine!
Sidney Becker, came with her family and a lot of their friends
from Livingston to help fill the restaurant. Sydney is fighting
Osteo Sarcoma. She was diagnosed about the same time as
Rachel was. She was feeling pretty bad the day we were
shooting, but she stuck with it and stayed as long as she could
to be sure her part of the video was done. Thank you to Sydney,
her dad for being our "waiter" in the video, all of Sydney's
friends and family, to Kevin and Debbie, and to our Florham Park
friends who came to help too! Thank you everyone, you helped
make an important video.
Sydney joined our Junior Board in February and her dad joined
our Board of Trustees.
Follow Sydney: Sydney's Carepage
Sydney on Livingston Patch
Our video producer was Jeff Kubach, and he did a really great
job. He's pretty cool too. Thank you Jeff.
Shore Fire Studios in Long Branch NJ was really nice and let us use the studio to
record the sound track on Monday March 28, I couldn't go because I had to be at
school, but my mom went. Thank you to Shore Fire Studios!
|Now watch the finished video!
I'll catch up on the rest of the news
soon. We have been pretty busy.