Painting the new Foundation Offices! Over 4th of July
week-end, we started painting the new offices. We used the
foundation colors, purple and gold.
We had me, my brothers, my mom and dad and help from
Ms. Bannan, (a friend of the foundation who we met through
the bike event), and her nephew R.J. Thank you very much
Ms. Bannan and RJ!
I had been trying to think of a good wish for my
Make-A-Wish, and I decided that the best thing I could do
would be to use my Make-A-Wish for an office make-over
for the foundation. We asked them a few weeks ago, and
last week they said yes. Now we have to wait until they have
time, so I do not no how long it will be before we can finally
move into the new offices. But when we do, it will be great!
4th of July-- actually the 5th of July because my town moved it this year
The 4th of July is one of my favorite days of the year. Last year, I was actually in the parade. I rode
to help raise awareness for kids cancer. I want to thank the Jaycee's again for letting me ride last year.
It meant a lot to me to be able to show people that kids get cancer too.
First, my town has a really good parade, I think it is the best in Morris County. Then there is a family picnic carnival type thing in the park with
food, music, rides, petting zoo, and other stuff. Then the town fireworks go off after 9pm. My backyard backs up to the park where they set them
off, so the town fireworks blow up in my back yard! It is really cool. We usually have a party because of the fireworks in our yard, and we have
lots of food. This year we didn't because too many people were either out of town or couldn't come because it was on Monday the 5th. I really
hope we will have a BIG party next year for the 4th! It is so much fun.
We went down to Maryland to visit my grand parents, (my dad's
parents), and we went to Salisbury one night to have dinner with
Brooke and her mom at her dad's restaurant. Brooke's dad has a
really good restaurant, and it was great to see Brooke and her
mom. Brooke will be starting kdg. in the fall, her hair is coming
back, and she lost a tooth!
We stopped in Philadelphia on the way home from Maryland that Sunday and met
Elizabeth and her family at the Philadelphia Zoo! You have met Elizabeth in the "1 in 320"
video. Elizabeth lives down south and goes to oncologists at UVA.
Elizabeth had Ewing's in her hip too, and Dr. Dormans also did
her surgery. She finished treatment around December, and
has clean scans!
We had fun looking at the animals... and even the Lego
animals. Can you believe that the zoo has Lego animals the
same size as the real ones?
It was pretty hot that day. I think the Polar Bear was wishing
he was back home in the Arctic. Elizabeth's sister Patricia
used the zoo fan to cool off.
Elizabeth and me. Mine was my right hip, hers was her left.
Elizabeth and I had a wheel chair race in the
Zoo. That was fun.
It was great to meet Elizabeth and her family.
I hope we get to see her again soon.
We went looking at colleges for my brother, and we were at Cornell when we met up with Mrs.
Tersinar who lives in the Mid-West.
We had dinner in Ithaca with Mrs. Tersinar. She was really nice, and I enjoyed meeting her. Her
middle daughter, Maddeson, had Pelvic Ewing's too, but it had metastasized and was really
aggressive. She didn't even make it to the end of treatment when she earned her angel wings. I
really wish Maddeson had lived long enough for a cure.
Mrs. Tersinar, thank you very much for the ice-cream. :) -Malcolm
We stopped in the Finger Lakes to visit my great aunt and uncle and see my cousins. We
had a great time with everyone. This is my uncle's dog, Lilly. I love Lilly and really wish I
could bring her home. I would like having a dog. Maybe one day I will have a dog like Lilly.
July 19, 2010
I get scans every 3 months for the first 5
years after treatment, then every 6 months
for the next five years.
On July 19, I went to CHOP for my 3 month
scans. This time it was my ONE YEAR
post-treatment scan and test day.
It has been a year since I finished treatment.
My scans are the same, nothing has
changed, so I am still in "Remission" and go
back for next scan day in October.
I will go down in August for a bone density test. We
were going to do that today, but had to cancel it
because I had IV contrast with my MRI and the
DexoScan would not be accurate because of the
HELP MAKE SOME NOISE!
September is Pediatric Cancer Awareness Month, and we are
asking people to help make some noise about it.
We launched a "Print & Plaster" campaign to raise awareness
across the country this September.
We have an arrangement with a printer in Utah, who will print
posters for you at a really low cast and them mail them to you.
You can help us PLASTER the country with Awareness posters!!
Just call and order TODAY!
"My Color Copies" (801) 491-6931
Speak to the owners, Janet or Dan, and ask for the kids cancer
poster. The posters are 11" x 17"
The minimum order is 50 posters.
50 posters - $28
100 posters - $42
150 posters - $63
200 posters - $84
We need your help to Make Some Noise! I hope you will help by
plastering Awareness posters in your community. Get your
friends and family involved to help spread as much awareness as
possible all across the country!
A kid in this country is diagnosed with
cancer every 40 minutes, and every 3.2
hours, one of those children dies of cancer.
Please help spread awareness.
Our 2010 Awareness Poster
|ANOTHER WAY YOU CAN HELP!
We are having an "Awareness Challenge" through the
foundation to help raise awareness and research funds.
Click here to learn more and
Join the Challenge
The Challenge starts now, and runs through September
to get attention for Pediatric Cancer Awareness Month.
We are trying to get as many people to learn about kids
cancer through this challenge and hopefully raise money
for research too! Everyone can win Visa Gift
Certificates through the challenge!
July 20, 2010
My 2010 trip to Seattle in July and August
This is me and my grandmother at their house in Blakely Harbor, Washington
My brother Harry is working on his pilot's license-- this is him
taking off at Bremerton Airport on the Olympic Peninsula.
One of my favorite things is
catching crab. My grandparents
live on Blakely Harbor, and we can
crab three days a week. Harry and
Papa went out in the dingy to check
the crab pots in the harbor at their
house, and we caught a bunch of
Bonfire in my grandfather's fire pit.
If I could, I would have a fire every night.
We went for a walk on the beach at their house, and we found a keel from a boat. I am not really sure how a keel was able
to wash up on the beach, they are pretty heavy!
Waling on the beach for the first time since my broken femur was a little tricky. The crutch sinks in the sand.
One of my grandmother's Siamese
cats. This is Amelia. The other one
is Lindy. They got their names
because they fly around a lot. Lindy
is an escape artist and has learned
how to open doors using the handle.
I love to pick berries. There is a pick your own blueberry farm on Bainbridge Island that we like
to go to when we visit my grandparents. I get pretty serious about it when I am picking berries.
Loading the boat and leaving on our annual trip. There was a pair of Bald Eagles on the mast of a boat next
to Pap's slip at the yacht club in Pouslbo. The seals use the log boom next to the slip for their nursery.
We left Eagle Harbor and went up to Anacortes the first night. When we came into the
harbor, we saw the Lady Washington and the Hawaiian Chieftan at the dock. The Lady
Washington was used in the Pirates of the Caribbean movie.
The reason we go to Anacortes is to eat dinner at a restaurant called Adrift and stop to
see my friend Darla. The clams and mussels at Adrift are the best I have ever had, and
I look really forward to them. This year, I ate two bowls!
This is my friend Darla. She works at the Calico
Cupboard in Anacortes, and we go there for
breakfast before we leave for the San Juan
Islands. Darla has a son a little younger than me.
We are in the San Juans!! I LOVE THE SAN JUAN ISLANDS. There
is a funny story about how the US came to own the San Juans. Both the British
and the Americans occupied the San Juan Islands, and everything was fine until a
an American pig got loose and ran amuck in an English garden, and a war started.
The Americans won the war, and we got the San Juan Islands.
If you look at a map, they sit in between the US and Canada.
The Ferry dock at Orcas Island
My brother Harry took the dingy into the harbor when we got into Roche
Harbor. The dingy davit lowers the dingy from the starboard side and we
wouldn't be able to get the dingy down in the slip once we were tied up. So
we put it in the water before we got in because we NEED it to go CRABBING!
Roche Harbor. Harry was Christened in the
chapel here when he was a baby. The grey boat
you can see in this picture is the guy who sells
the amazing spot prawns!
It is a good thing we took the dingy down. Crabbing in Roche this year was the best ever! We came in with 21
dungeoness the first day and 17 the next.
My dad is crazy about crabbing. He started joining my mom and grandparents on the annual boat trip back when he and my mom started
dating back in college. Back then Papa had sailboats instead of a Grand Banks, and dad's job on the boat was to get the bait when they
were in harbors, set the traps and bring in the haul. He also did most of the picking and cleaning. He was very serious and enthusiastic
about his job, and so mom gave him this "CRABMAN" t-shirt about 15 or 20 years ago. He brings it on every trip to Seattle and wears it for
good luck when he goes out to pick up the pots.
We all picked crabs and there were a
lot of them! Harry sat up on the fly
bridge for hours picking. He had his
ipod and speakers with him so he
listened to R&B while he cleaned
The Moulton's have a slip at Roche, and we
got a slip next to them last year and this
My brothers and I went over to the
Mouton's boat before dinner one night
when we all had dinner together on the
docks. It was like one GB was the kids boat,
and the other was the grown-ups boat.
We played Uno, and later that night we all
watched a movie on the Moulton's boat.
We sat on both the boats to watch "Colors."
This is the sunset flag lowering ceremony at
Roche every night. After the flags come
down and the bugle plays taps, it gets crazy
with all the boat horns.
More crab the next day. I
chopped the crabs on the dock
while dad held them.
James totally butchered his
first try at chopping crabs. But
he did pretty well after that.
Harry was bad though which is
funny because he wants to be
a surgeon. He said that an axe
is not his surgical tool of
Salmon Fishermen!! I LOVE SALMON We passed them on our
way up to Canada.
This is a Canadian Navy ship that we saw when we got to Canadian
waters. Harry said it was their whole fleet. He was just kidding.
This is Papa clearing customs in Canada.
Poet's Cove, B.C.
Keeping an eye out for deadheads. That is not
people who listen to the Grateful Dead, it is logs that
have broken loose from logging boats and get so full
of sea water that they kind of sink. They sink straight
up and down with the top just above the surface of
the water. It is not good for your boat to hit dead
heads. Well neither kind of deadhead for that matter.
Ganges Marina, B.C. Canada
Sidney Harbor, B.C., Canada
When we got to Sydney, there was a concert on the lawn by the fish market. It was
pretty fun, there were some musicians performing the Blues Brothers.
This is part of Sydney Spit. It is a really cool place. Before my cancer,
we used to go over here from Port Sydney and anchor out for a
night. We would hike all over the island. If you remember the part in
my video where I was standing in a driftwood fort I had built with my
brothers, this is where we always used to build our driftwood forts.
Back in the US. This is the Lady Washington and the Hawaiian
Chieftan. The Lady Washington was in Disney's Pirates of the
I am waiting to clear customs at Roche Harbor's Customs Dock.
We can't step off the boat until we are cleared by a US
T's!! This is me on the bow as we pull into Point Hudson Marina. There are a few
harbors that I really look forward to and this is one because T's Restaurant is here!
That is T's up on the sea wall. They have amazing seafood.
The Wooden Boat Center is here too. I got a cool red jacket in their store this year.
That red and yellow building is the new Wooden Boat
Center in Point Hudson/Port Townsend, WA
Here is Esperanza, Papa's boat.
MATH HOMEWORK! I don't think they should
give kids homework over the summer. I know they say
it is so we aren't thick headed when school starts in
September, but c'mon!
I actually liked my summer reading books this year, and
I don't mind the math workbook, but I wish it wasn't
required so there wouldn't be any pressure in the
I have to take calcium and Vitamin D for my bone density because it was destroyed
by all the chemo and then all the immobililty from the surgery and broken femur.
You get Vitamin D from sunshine, so I was trying to get a bunch of Vitamin D.
Back home to my grandparents house on Blakely Harbor on Bainbridge Island,
Washington. Sometimes the Lady Washington comes into Blakely Harbor. You can
see Seattle from here, and watch the ferry cross Puget Sound.
Me, Harry, and James in Papa's Canoe in Blakely Harbor
One day when we went for a walk on the beach in
Blakely Harbor, there was a house having some
construction work done and one of the workers
had a dog. The dog came down to the beach to
meet us and I could tell he really wanted to play
fetch. So I played fetch with him a bunch of times.
I really wish I had a dog, so it was fun. He was
pretty good at it and never gave up. He even
followed me back to my grandparents.
I LOVE MORA! Jerry Perez makes THE BEST ice Cream. You have to go there or
at least order some! I recommend the Banana Split or Swiss Chocolate.
Jerry will ship anywhere, and it is definitely worth the Fed-Ex charges!
Taking the ferry back to Seattle to fly home
to New Jersey.
THIS YEAR I DID NOT FLY HOME IN A NEW
BODY CAST WITH A BROKEN FEMUR!
August 24 Dexoscan at CHOP
This is a really fast scan to check bone density. Mine is now pretty bad but
now that I am starting to walk around a lot more it should start to get better.
This is me and Maggie working on the big painting for the Live auction. It is an
impressionist painting made with the thumb prints of kids with cancer. Maggie
fought Oseto Sarcoma
Me, Mom, Bethany, Lilly, and Maggie
Shannon, Bridget, and Mya working on paintings for the Silent Auction.
A bunch of us kids who have fought cancer got together down at
the New Jersey Shore to make sand castle centerpieces and make
paintings for the auction for the foundation's "Rockin' the
Jake and Shannon
I am back to doing chores for the first time in almost two years. I mow
the lawn again now and load the dishwasher when Mom asks me to.
Mya built the tallest sandcastle. We made them out
of wood and then glued sand on them.
Bethany making her sand castle
Here is a photo of the finished painting we made. It is a beach scene of the jersey
shore. It did pretty well in the Live Auction and raised money for research!
School Started the next week and I have been pretty busy. I am in 7th grade now.
Our fundraising events down the Shore on September 26 were great. We had a sand castle contest
and the Rockin' the Boardwalk event. We raised about $60,000 for research.
I had my 3 month scan/clinic day on October 25. Lungs were clear, but Oncology wants me to go back
down to CHOP and meet with Dr. Dormans my Orthopedic Attending to go over the results because a
bunch of stuff is lighting up in the MRI of my pelvis. I hope is it just because I have started walking
and getting around a lot more since the last round of scans in July. I have completely changed the
way I walk so that must be what is lighting up.