Skyping into Math class at home. The bean bag is the best way
to be comfortable in the cast.
Oops, fever... went to CHOP ER
and admitted for a few days.
Since I was there when I was in with the fever, they decided to take the cast off a
little early and put on my brace. Joe gave me headphones because the saw makes
some noise when he cuts casts off. They also gave me painkillers because there is
still a lot of healing going on in my hip area and moving out of the cast and into the
brace could be painful.
Looks like spaghetti... it is just IV lines, crazy looking isn't it??!
That is my new brace that you can see on my side. It goes from
my ribs to my ankle just like the cast did.
This is Joe, Chris, and Ray. They are three really smart guys and they were laughing that it
took all three of them to get the brace screwed together. The brace was custom made for me,
but had to be put together once I was in it. Chris had even brought power tools!
Joe has been putting on casts at CHOP for about 30 years. Chris is from the brace company,
and Ray is Dr. Dorman's Nurse Practitioner.
I will be in the brace for 6-8 weeks. It is locked so I
don't move, just like in the cast. In a couple of weeks,
I can unlock my knee. A few weeks after that they will
start letting my hip move a little at a time. Dr.
Dormans doesn't want it to move until scar tissue
forms where the surgery was. Some of the scarring
will make a kind of fake hip socket to help keep my
femur in place.
O.K., so sorry I wasn't smiling here, I was watching a movie
when mom took this picture. But you can see what the brace
looks like. I was watching Spy Kids.
JOURNEY PART III
I was invited to be a guest speaker for Ms. Torres’ Human Anatomy and Physiology
class at Pingry, which is a local private High School. I went to Pingry on Thursday,
April 23. I gave a run down of my cancer and treatment and then opened it up for
Q&A. We pulled up images of my MRI and X-Rays on the SMART Board for everyone
to be able to see what we were talking about. I was really happy to be able to have
the opportunity to do this. Sharing information about Pediatric cancer has become
important to me. I was surprised and happy to find that the class was interested in
what I had to say. Thanks for your support guys!
We saw this bumper sticker on a car at CHOP.
We are studying ancient cultures in school right now. For English, we wrote scripts
to act out and record skits on Greek Mythology. We were taping the skits on Friday,
but I was admitted that day for chemo, so my class skyped me in from CHOP so I
could play my part as Zeus. We brought some props with us to the hospital for the
Beware the wrath of Zeus... I am armed with lightning bolts,
and am not afraid to use them!
|CHEMO ROUND 9
My friend Leo is in Remission now! He
came to CHOP to visit on Friday night
and we played video games. It was
great to see him. Other good news: Gia
was discharged on Friday and went
home after 3 months of being in-patient!
Another fever with neutropenia. This is being loaded into an
ambulance at our local hospital for a trip down to CHOP at 1 am.
Fevers can be really risky when you have low white blood cell counts,
so they don't want to take any chances.
This is arriving at CHOP at 3am. When I get a fever, I stay at CHOP until
my white counts get up to an anc of 200.
My friend Justin came down from Connecticut for a sleep-over Saturday
night, that was fun.
I went to school to watch our Field Day. It is called Downey Redhead
Day. This is my class in the tug-o-war. I am a Redhead and we won the
tug-o-war, but the Downies got the overall win, again.
We roasted marshmallows on Mother's Day. We were going to do it outside but it
got dark before we remembered, so we had marshmallows in the family room.
Chemo Round 10
Moved in for a week of chemo.
|The Pantastic Kids Steel Pan Band
I am in the Pan Band, at school, and my brother is too. James has been in Pan Band for four years. We had a performance this week, and Mr. Cross
skyped me into the assembly so I could watch James and "The Pantastic Kids" perform. James is on the drums in the picture on the left, and on the lead
pan in the middle of the photo on the right. That was great. I felt like I was at school. When the assembly was over, my Upper School Headmaster, Mr.
Sigrist, turned the computer camera around to the student body for everyone to say hi to me. Thank you!
I skype into classes 2-3 hours a day, and then do my homework, but there
isn't much time when you are in the hospital. You get a lot of visitors. On a
normal week day, I have someone come into my room about every 15
minutes. They can be nurses, Oncology doctors, people from Orthopaedics,
technicians with portable testing machines like x-rays and ecco cardiograms,
physical therapists, occupational therapists, child-life specialists, music
therapy, case workers, volunteers, housekeeping, and other really nice
people who just come by to say "hello." Some days there is almost always
people in your room, but sometimes on the week ends you only really see
your nurse. They keep you busy at CHOP, and that is really good because
time goes by fast. Everyone is nice and smiles, but the people who like to
laugh and joke around are my favorites.
|Necessity is the mother of invention
Mom and I try to find ways that I can work on my homework by propping
things up so I can see and reach them.
|I finished Round 10, and I got my knee unlocked in the brace so it can move for the first
time in 9 weeks. Now I am moving to Seashore House at CHOP for in-patient physical
therapy. They call it physical therapy boot camp.
The physical therapist ordered my hip unocked so she could work on range of motion. She moved it back and forth from 0 degrees to about
80 degrees. Then she locked it again until the next session. She was pushing to get the brace off because that is what the orders were, but
the orders didn't have a time schedule on it. She didn't know it, but it turns out, that we weren't supposed to move it past 45 degrees yet, it is
too early. The hip has to really scar up to make the new hip work. Some people say all scar tissue is formed by 9 weeks, other doctors said
that it takes between 9-12 weeks for it to really scar up. I was at 9 weeks. My Attending Orthopaedic Surgeon was away for the week, so to try
to find answers, we asked for an MRI so we could know what is really going on in the hip before we start moving it too far too soon. Meanwhile,
I will just keep working on walking and strengthening everything else.
Seashore House was fun, but boring too. They don't have Xbox, and I was on room restrictions
because of getting VRE and being neutropenic. I liked the room because it was like a dorm not a
hospital. My physical therapist, occupational therapist, nurses, and doctors were all nice. It was too
much too soon to try to make a lot of progress on PT. I can't take the brace off yet, which is locked
at 30 degrees so I can't stand up to walk, I have to walk bent over, and working at PT rehab while
on chemo is really hard. There are days you cannot do much of anything because your blood counts
prevent it, and days you are too tired from the chemo. If you don't have enough hemoglobin then
your muscles don't get oxygen, and if you don't have enough platelets, then you really can't do much
without risking aneurysms and other stuff. When you are on chemo, you get tired about a week out
because your bone marrow is working hard trying to produce blood cells to replace the ones the
chemo just killed. The chemo and PT together really totalled me by the end of the week, plus I
injured my heel while doing full weight bearing heel-toe walking in PT. It was hard to try to do a
bunch of intense rehab while still fighting cancer with chemo and trying to get all my school work
done. I'll keep working on PT in oncology and at home.
Chemo Round 11 in a couple of days.
Walking by myself with
crutches. On Wednesday
I walked about 25 yards