FOUR ROUNDS TO GO!
(and a ton of physical therapy)
of chemo was May 26. It was a short round because I have maxed
out on my life time cap for one of my chemos, Doxorubicin.
Apparently, they think the stuff is toxic. So without the Dox, what
used to be my three-day chemo is just a one day. I was home by
|I visited a first grade class at the Brairwood School on Wednesday, May 27. Ms.
DeLeeuw's first grade class has been following my progress and web page since
February. They sent me a great get well card after my surgery, and they all have my
Power and Determination wristbands. We talked about my cancer, and I answered
their questions. It was fun to see the kids. Thanks for supporting me and letting
me visit! Good luck with the rest of your school year. Always remember that you
can do anything if you put your mind to it and work hard.
We went to watch my middle
brother James' 8th grade
Graduation. It will be my turn in
three more years!
This is me with my brothers and my dad on graduation day.
Mom set up a "restaurant" at
home for James' graduation
dinner, and we had a great time.
School is out for the summer.
|Sharing the story on
Mom paints my hospital room door with something different each
time I am in-patient at CHOP.
My Upper School music teacher, Mr. Watson, came to visit and we played guitar.
Gaming with Abby. We were playing Xbox
Because it is summer vacation, my friends can finally come visit
me when I have a week of chemo! It is a 2 hour drive to CHOP.
It was great to have friends visit this time! My friend Tommy
came down on Thursday night, and Liam, Abby, and Devon came
Thanks for visiting!!!!!!
Playing guitar with Devon. She is taking lessons too.
Maybe one day we'll be really good.
Counting down the hours on Round 12.
I was playing Xbox 360 on-line with my brother who was at home. We teamed up with a bunch
of other guys and really had a blast. With the headsets we can talk to each other and form a
strategy. My doctor challenged me to reach level 50 on the game before my discharge on
Friday... and I did it!
My nurses Joy and Tiara enjoyed the music. Mr. Watson was playing "Sweet Home
Alabama" and Joy was dancing.
|Visit to Thomas Jefferson Elementary:
On Tuesday, I visited Ms. Baxter's 4th grade class. The kids
have been following my website, wearing my wristbands and
sent me a really great book of letters they wrote to me. It was
nice to meet everyone in the class. They were really nice
kids, and I was happy to be able to meet them and answer
their questions. Thank you for supporting me!
|Time to get out of the brace!
Dr. Dormans gave me permission to start working out of
the brace when I was in-patient last week. He said I could
work out of it slowly or just get rid of it. I was nervous
about injuring my hip without the support from the brace
and didn't know if my muscles were strong enough. I was
at CHOP yesterday, and when I was in Orthopaedics Ray
challenged me to get out of the brace. I got home at 9:30
that night, and took it off before I went to bed.
I have a bunch of crazy chemo skin on my legs, but it
peels off like sunburn.
In the morning, I got ready to try walking without
the brace for the first time. I have not walked
without the brace or cast since my surgery three
months ago. Half my brain was nervous and
telling me not to, but the other half said just do it.
So I just took a deep breath and did it. It felt
really weird, but was easier than I expected.
|It felt weird, but
I did it!
Walking for the first time with out a brace or cast!
|Chemo Round 13
was Thursday, June 25.
It was just a one day chemo at CHOP. We left
home at 5:30 am, and I was home by 9pm.
Thursday, July 2
Blood transfusion #15!
Thank you to all people who donate blood!
I watched a movie on mom's laptop, then I was
so bored I decided that a nap would kill some
time until I could go home.
I have physical therapy at home three times a week and nearly every day when I am
in-patient at CHOP. Mary is my in-home physical therapist. When she comes we work
on weight bearing, balance, and strength. Today we tried the stairs, and I made it to the
bottom and back up. It doesn't sound like such a big deal, but you try it without a hip!
It actually wasn't bad. There are certain movements and ranges I am not allowed to do
yet, but that will come. It has been two weeks since I took the brace off. So far, I can
balance and stand for a few minutes with no support, even when Mary throws a ball at
me and we have a catch.
I am using lofstran crutches-- my brother calls them my "cripple crutches" which makes
me laugh because it sounds funny when he says it. They are easier to use than the
walker and I can take bigger strides. At some point I won't need them anymore. But I
think a really cool cane or walking stick would be good for a hike.
|On the 4th of July, I was in our town's parade!
This was a great experience. The Jaycees were really nice and let me ride on their float this year. Our town newspaper, The Florham Park Eagle,
put information about me on the front page of the paper. The article explained about how I am trying to raise awareness and research funding for
pediatric cancer, and how I was going to be on the Jaycees float this year. A lot of people must have read the paper because when I was riding
through town on the float, there were tons of people clapping, shouting my name, cheering for me, and many even stood up to clap! It seemed
like people were waiting to see me. I tried to wave at everyone, but it was really hard trying to wave to both sides of the float. So if I missed you, I
am really sorry. My Mom and Dad said it was a moving experience and brought tears to their eyes to see so much support for me from our
community. It didn't make me cry, but I was really impressed. Thanks to the Eagle and the Jaycees for this opportunity!
If you want to read the article in the
Florham Park Eagle, click here:
|THIS WAS LINING UP TO START THE PARADE.
MY BROTHERS, HARRY AND JAMES, CARRIED THE BANNER OUT IN FRONT OF THE FLOAT,
and there was another on the back of the float.
This year's Parade theme was baseball, in case you couldn't tell!
Later on we watched the fireworks. Our town fireworks blow up in our backyard!
Chemo Round 14
|It was a great day for the
parade too. It is usually
REALLY hot and humid in
New Jersey in July, but
today was only about 82
and not very humid!
|It isn't everyday that the
people in your town cheer for
you! Thank you to everyone
for showing your support!
Thursday night my friend Leo came to visit. His mom and brother Keenan came
too. We played video games then Keenan had to leave for his baseball game.
When Leo's mom came back, she brought burritos for dinner and we played a
game of Alias. It was really great to see them. We were having so much fun that
mom forgot to take a photo of me and Leo.
This is me hanging out waiting for Leo
A bottle of Chemo on my IV pole
Taking a walk around the oncology floor with my physical
therapist on Saturday
Morning Rounds with Oncology on Monday, I went down for Orthopaedics Clinic
with Dr. Dormans later Monday morning.
Mr. Mortensen drove down to CHOP to visit on Saturday night. He
is my woodworking teacher at school, and a great friend. He
brought me food and a cool Monty Python t-shirt. On Sunday night,
mom and I had "movie night" and ate the Ben & Jerry's that Mr.
Mortensen had given me. It tasted really good!
On Monday, my friend Belle and her sister Maddy came down to visit.
It was really great to see them on Monday-- they stayed until it was
almost time for discharge! Belle and Maddy even walked around the
unit with me during PT. Thanks guys, it was nice to have friends
Monday night, just one hour to go on the last round of
chemo. I was playing Xbox on-line with my brother,
James while mom loaded the car.
Meet Trey and Chelsea, they are CHOP Oncology patients
too. Trey was leaving to go home for a week and had
some balloon animals, so he took them around the
oncology floor to share with his friends. He has been
fighting Neuroblastoma Stage 4 for a year and a half.
When it was time to leave, several of my oncology nurses made a high five line and
held up signs they made congratulating me on my last round of chemo. That was neat.
They let me keep the signs they made. My Oncology nurses were all really great.
The Chemotherapy protocol for Ewing's Sarcoma is 6 rounds,
scans, surgery, 8 rounds, then scans. I just finished Round
14, so I have scans in two weeks. If they are clear, then
surgery will be scheduled to remove the central line from my
heart. If not, then more treatment.
|So, while we wait for scans, tests and results...
"Please Stand By"!
We went to the local zoo for an outing. This is a great place to visit when you have no white blood cells because it is
outdoors and there is neat stuff to see. The cougar was very cool, I wanted to take her home. The Budgie aviary
was fun, especially when the employees rubbed a stick on the bars, and they all flew over our heads.
While we wait:
|A really nice lady from town wanted to do something to help,
so she had a jewelery party in town on July 21 to raise funds
for my pediatric cancer research fund at CHOP. She raised
over $1,000 for pediatric cancer research at the party. Thank
you to everyone who went to the party and bought jewelery
for my cause.
Thank you very much Mrs. Waters!!
|CT SCAN to check my lungs
For PT on Thursday, I tried my
backyard for the first time. I
have been in the backyard
before, just not walking on my
own. Mom sometimes puts me
in a chair in the badminten court
and gives me a racquet. I can
return anything that comes
Up until now I have only walked
on hard floors. Mary and Mom
thought my first time trying to
walk on uneven stuff would be
hard for me, but mulch, hill, and
grass was no problem. I even
kicked a soccer ball in the yard.
My main goal was blackberries. I
went to my favorite blackberry
patch, and picked berries. Then
I went into the woods to my tree
Meet Sean! Sean is two years old and we met him last
week in Oncology Clinic. He was just diagnosed with
Neuroblastoma, which is the same cancer Gia, Trey, and
Brooke have. We ran into him in Nuclear Medicine today
while his dad was pulling him around in one of CHOP's
wagons. We saw Alex today too, and she said Gia got her
Today was my post-treatment test and scan day to see if I am in remission.
|BONE SCAN to check my... duh, bones!
I watched "Transformers"
|Echocardiogram for my heart evaluation
|Getting geared up for the MRI. This time I picked "Finding
Nemo" for my movie. The movie goggles and headset are really
cool, but after about an hour and a half, my tail bone started
getting REALLY sore! I made it through the whole time though.
It was definitely easier to do the long MRI BEFORE the surgery!
|MRI to scan my hip
I had an X-Ray for my hip too.
That is Mary, she is really nice!
|My scans last week were inconclusive so I went back on Monday for a PET
scan. They found something on my tail bone but they don't know what it is. It
could be cancer or it could be fine. They will scan again in three weeks to see.
In the meantime, think "remission" and:
I have had some friends over for visits this is Mark and Mr. Kowalik, Mr. Sigrist came over too. Me and Riley
This is my friend Adam
PT with Mary
Mrs. Sharma and Mrs. Pelaez come over to pick on me.
Abby and Liam
The Clarks came down from Connecticut
I went to the Eagles' training camp on Thursday, and met all the players after practice! So look for a ton of pictures on my Eagles page.
Click here for all the photos:
PT on my street with Mary. Like the blue ribbons on the trees?
My doctors at CHOP told us to take a family vacation before the
next scan, so we packed up for our annual trip to Seattle and
boating in the San Juans and the Golf Islands of British Columbia.
|To see a lot of photos from my trip to Seattle
and the x-ray from my broken femur:
To see pictures of my meeting with B.B. King on Aug 25th:
I went to CHOP on Tues Aug 25th to see Dr. Dormans about my broken femur. Then I went back on Thursday August 27th for my
PET/CT scan to see if they can tell what is in my tailbone. This is me in the PET/CT. I have been in it a few times before, but this was
my first time doing a scan in a spica cast. Being moved around for all the right positions for X-Rays are painful with a broken femur
in a spica cast, but the scan was not bad because you don't have to move.
August 8 - Aug 24
Mom and Dad met with Oncology on Friday
afternoon to hear results from the scan, and it was
inconclusive again. The area of concern is still
there and has not changed. If it had grown it would
be Ewing's and if it had shrunken we could call it
remission. It didn't change so we still do not know
and the next scan is scheduled for two months. But
we are going to meet with Orthopaedics on Sept. 8
to hear if they can come up with a plan to find out
|Reporter, Jake Remaly interviewed me on Sept. 4th
for an article he wrote in the Daily Record.
Click here to:
Working on my summer math homework
Driving my RC motorcycle at the park. It goes pretty fast and can do wheelies.
September 8, 2009 Orthopaedics
I went to CHOP to meet with Dr. Dormans to see how my femur is
healing, and find out if they can determine what is in my tailbone.
Radiology had recommended a different scan of my tailbone, a CT
instead of a PET/CT. Nuclear Medicine was able to get me in the
same day even though it was getting late.
I barely fit into the CT with the spica cast. We should
hear results in a few days.
The contrast this time was oral, not IV, so I had to drink it and then
wait two hours in the sedation unit before the scan to allow it to
settle into my tail bone. The scan was around 8pm on the night
before the first day of school, and I was in Philadelphia not at home
getting ready for school! I got home at midnight.
Here's the new spica cast for the broken femur. Deja-vu. It is healing
really well, especially since I am only off chemo for a month or so.
September 9, 2009
BACK TO SCHOOL!
I went back to Peck for the first day of the school year. I am in 6th
I really wanted to be at school and I tried going to school in the wheel
chair. After the first few days, I couldn't take sitting in the wheel chair
for that long. It is hard to sit in the same position for a long time and
not be able to shift your weight. So, I will have to skype into classes
again like last year, until the cast comes off. It was nice to be
physically in classes with my teachers and friends.
In the words of Arnold Schwarzenegger: I'll be back!!
FOR RESULTS FROM THE CT!
Dress Code Disclaimer: I got permission to break dress code because I
couldn't get khakis over the spica and my blue blazer made me too hot
with the cast.