Monday, January 21, along with celebrating the life and work of Dr. Martin Luther King Jr. and inauguration day, marks the first day of National Teen Cancer awareness. While I don’t want to lessen the importance of these two great events, I don’t want to lose sight of the importance of Teen Cancer awareness. A bill introduced by Senators Robert Menendez of New Jersey and Pat Toomey of Pennsylvania was passed declaring this week National Teen Cancer Awareness Week. Senator Toomey kicked this off with an event at the Children’s Hospital Of Philadelphia last Friday.
Dr. Altschuler, the CEO of CHOP opened the event and introduced Senator Toomey who gave a very nice talk about the unique needs and challenges associated with teenage cancer patients. Then we heard from Alex Rotzal, who also writes a blog for Philly.com called “Living with the New Normal.” Alex went through treatment at the end of being a teenager, sort of the opposite end from me; I went through treatment just before becoming a teenager. Alex did a great job sharing his unique perspective of going through treatment in a pediatric hospital and being one of the older patients in the program at CHOP but getting the same awesome care that only CHOP can provide. Mrs. Liz Scott, co-founder of Alex’s Lemonade Stand. also gave a great talk. Alex’s Lemonade Stand, an awesome pediatric Cancer Research foundation that has been very good to CHOP, was founded in honor of her daughter Alex who died when she was 8 years old. Last Friday would have been Alex’s 17th birthday and that made this day even more special for all of us.
Teens, who really aren’t adults and really aren’t children, fall into a strange place and sometimes don’t get enough attention. Teens represent a really big part of the cancer patient population. The treatment protocols are mostly developed for adults and adopted for children. Teens kind of fall somewhere in the middle. Teens are going through all kinds of changes, physically, emotionally and socially. Although I was 11 when I was going through treatment, I’m 13 now and all kinds of crazy things are happening in and around me. This would have been really tough if I was going through treatment now. With the introduction of Teen Cancer Awareness Week, maybe we can help focus some much needed research and awareness on teenage cancer patient needs.
Many things have happened since my last update. I have been training hard at swim practice and gone to different doctors’ appointments at CHOP. I had a bit of a scare a few weeks ago when I was having back pain for several weeks. My parents told Dr. Dormans about this at my check up and he ordered a full body bone scan. I remember getting one of those when I was first diagnosed so I was pretty scared. A few days later, I had my bone scan and all is clear. My doctors think this is more due to training hard and my back does feel better now that I am training harder on a regular basis. You might think that a bone scan is kind of extreme to get to the bottom of back pain but after having Ewings, you can’t be too careful.
I have entered the 8th grade and will be graduating Middle School this year. My Make-A-Wish is getting closer to being granted. My wish was to have a public service announcement, with Mark Herzlich of the New York Giants, about raising awareness for pediatric cancer. We went over the first draft of the script with representatives from the Make-A-Wish chapter for New Jersey and the Script has been “Rachel-approved.” It will now be sent to Mark and the Giants for their approval.
As many of you know, I am a competitive swimmer. Training has been getting pretty hard over the past few weeks and I can definitely feel it afterwards. I have been introduced to new events this year such as the 100 butterfly, 200 butterfly, and the 200 backstroke (which I will be swimming in a few weeks). Dr. Dormans has now allowed me to swim Breaststroke. This has been such great news to me because now I can swim all four strokes.
I’m back ... from my first Ronald McDonald camp experience. I had a blast when I was out in the Poconos for RMC 2012. The 3-hour bus ride alone was fun. We talked for about an hour and a half and the rest of the way, I listened to music.
When we first pulled onto the campgrounds, I could tell I was going to have a lot of fun. The bus drove into a woodsy forest. and I felt right at home. When the buses stopped, there where so many counselors with names of different cabins on them. The cabin I was assigned to was “mango”. The girls in my cabin are all very nice and funny. We had some funny conversations and fun times in the cabin.
I was a senior camper, which means that I was old enough to choose the activities I would do for the next week. The activities I chose were going to the lake, fishing, beaded jewelry, and campfire cooking. I made lots of new friends in each of my activities. The food was great!
Since I last had a blog update, many things have happened. I went to Children's Hospital of Phiadelphia (CHOP) for a check-up with Dr. Dormans, had my last day of 7th grade, started summer swimming and golf lessons, and went to Puerto Rico for the first time.
Later on this summer I'm going to a camp at one of my counties vocational high schools - The Marine Academy of Science and Technology (M.A.S.T.) - and I'm going to the Ronald McDonald camp in the Poconos. I couldn’t go to camp last year because I had just gotten my brace off after surgery, and I was learning to walk with my new endo-prosthesis.
On May 14th, I went to CHOP for a Check-up with Dr. Dormans. He wanted me to get a scanogram to check that my legs were both growing at the same rate. If the leg that I had my surgery on stopped growing, Dr. Dormans would have to go in to my left leg and break the growth plate so that my legs would be as close to the same length as possible. This is something you have to keep an eye on when you have the kind of limb salvage surgery that I had.
Today it is one year since my limb salvage surgery, pretty much the scariest day of my life. It’s also one year now that I’m cancer free.
When I went in to surgery last year, I was afraid that I wouldn’t wake up and if I did, my right leg would be gone.
As much as Dr. Dormans and Dr. Balamuth told me that my leg wasn’t going to be cut off, I was afraid. After my surgery, Dr. Dormans took my parents in a small room outside the surgical waiting room and told them that my surgery went beautifully. Exactly as he and his team had planned. My parents both cried a bit (that’s what they told me), but still listened to every detail.
This was a great Easter holiday this year.
On Monday after Easter, I had to go to Children's Hospital of Philadelphia (CHOP) for my three-month scans, blood work and a follow up visit with my oncologist.
My parents and I decided to stay in Philadelphia Sunday night so we could get an early start at CHOP and not have to drive in from the shore Monday morning. After mass on Easter Sunday, my parents and I went to breakfast and then headed to Philadelphia.
I’m starting to realize what my new normal is after going through treatment and having my surgery.
Having a prosthetic femur has its limits and they are the kind of limits that get in the way of being 12.
A few days ago, I was at a party with a bunch of my friends. There was a trampoline in the yard and my friends just couldn’t help themselves from jumping on it and having a great time. I don’t blame them. if I could have been in there with them I would have.
This weekend is huge for my fellow swimmers and I; it’s time for the NJ 9/10 and 11/12 state swimming championships. I look forward to this meet every year because this meet is so fun to be at. The longest event I am swimming is the 200 yard freestyle, that’s 8 laps up and down the pool. I am swimming 5 other events and once I get the results, I will put them in my next blog.
Also I got my report card this week. I got all A’s and first honors at my school for the second time this year. I have to keep my grades up if I want to get into the high school I want to go to. The high school I want to apply to is sort of like a medical prep school. The curriculum there is supposed to be tough, but it is similar to my current curriculum in terms of how hard it is.
This Sunday my dad is participating in a parent panel at the CHOP Cancer Center Family Education Day. This event addresses the emotional and physical challenges associated with a child’s cancer diagnoses. My dad, along with other parents of children who have survived cancer, will share their experiences and answer questions.
Hello everyone. Since I last posted, a few interesting thing have happened. I got blue and pink hair extensions for a fund-raiser at school. Our principal, Mrs. Wisk, is an over-the-top Giants fan so there is a lot of blue and red around our school these days. Also, it’s been about one year since I was diagnosed with cancer. Last, but not least, I have a nasty cold.
The hair extension fund-raiser was to benefit the Mother Teresa Regional School and to celebrate the Giants winning the Super Bowl (sorry, Eagles fans). Before the Super Bowl, the school had a dress-down day where we were only allowed to wear Giants-related stuff, or the colors red, white, or blue. In my opinion, the Super Bowl was an awesome game between two great teams. I realize that there aren’t a lot of Giants fans in Philadelphia but cut me a little slack on this one … . I live really close to New York.
February 4th was the one-year anniversary since I was diagnosed with cancer. What a difference a year makes. Right after being diagnosed, we (my parents and I) weren’t sure how this was all going to turn out. I don’t think Dr. Dormans was sure that my leg could be saved at that point. My oncologist, Dr. Balamuth, and her team did a great job of shrinking my tumor so Dr. Dormans could work his magic. He saved my leg and the team at CHOP saved my life. Today I’m cancer free, back in school, back with my swim team and back to being a 12-year-old girl. It is hard to believe this nightmare started that long ago. It feels like time flies by so fast when you are surrounded by friends and family.
Hello, my name is Brad Cooper. I am the primary physical therapist working with Rachel in this outpatient setting. I am not writing because I was asked but because—after getting to know Rachel and reading the blog—I feel compelled to do so.
Yes, I am the physical therapist who suggested that Rachel increase her treatment sessions to three times per week instead of two. Although Rachel made a face and rolled her eyes a little (because she knew she would be giving up a day of swimming), she did not hesitate. Rachel has been very consistent and compliant with her treatment and exercises and has been progressing well because of her hard work.
Working with Rachel is all about her laugh and her smile.