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.

We checked into our hotel and relaxed a little before dinner. My dad made reservations for Easter dinner at Del Frisco’s Double Eagle Steak House. I had dinner there a few months ago, and it was great. I was really looking forward to dinner at Del Frisco’s.

When we got to the restaurant, Rich Furino, the General Manager, came to see me, and he was really nice. He had seen my blog and kind of knew why I was in town, and he made our experience at Del Frisco’s really special. Mr. Furino told me about the history of the building the restaurant was in and he gave me a Silver coin from Del Frisco’s that special guests get.

Mr. Furino’s daughter is a nurse at CHOP, and she gave him a shirt from CHOP to give me from the nurses. Mr. Furino also gave me a really nice shirt from Del Frisco’s. Dinner was awesome. I had the best steak ever. After dinner, Mr. Furino had Drew Carballo give us a tour of the restaurant. He showed us the wine tower, the kitchen and the wine room down stairs that used to be a bank vault … . Very cool. I can’t wait to go back.

Monday we went to CHOP to get started on my day of scans, blood work and a visit with Dr. Balamuth. The scans were a breeze, only took about 15 minutes. I’m getting used to getting these scans now. 

After scans, my parents took me over to the oncology clinic to start getting checked in, weighed in, blood pressure checked and stuff. I’m happy to tell you that I have grown almost two inches since my surgery last may and both of my legs are the same length. Dr. Dormans nailed it when he put in my prosthesis. When he cemented it in to my femur he stopped about 3mm short of the growth plate. This means that my leg continued to grow and my legs are the same length.

After triage, I went over to the oncology lab to get blood drawn to check my counts. We were pretty early to the clinic, but Dr. Balamuth was available early and she was able to see us right away. 

Things were kind of quiet in the clinic and the lab so the results of my blood work were done pretty quickly. Within a few minutes, we went in to see Dr. Balamuth, and she gave me the best news of all … . She said MY SCANS WERE PERFECT! My blood work and counts were perfect, too.

It’s always a little scary to go in for scans because I really don’t want the cancer to come back. Monday’s news was the perfect end to the Easter holiday. I have an appointment to see Dr. Dormans next month so he can check out how my leg and physical therapy are coming along.

I’ll keep you posted. Wish me luck!

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.

But my new normal with a prosthetic femur gets in the way. I’m pretty sure that jumping on a trampoline is one of those things that Dr. Dormans wants me to stay away from. That left me sort of sitting on the sidelines at the party. Eventually my friends came off of the trampoline and we hung out, but before long, they were back on the trampoline.

I know that my friends don’t intentionally leave me behind; they’re just doing what 12- and 13-year-old kids do. They’re playing.

To be honest, I knew that things would be different after my surgery and that there were things that I couldn’t do. I guess now the reality is sinking in. I know that all things considered, I’m lucky to be alive and to have the life that I have. I get to do most things and I can even compete with my swim team, which is more than many kids my age get to do.

But I do miss being just a normal kid.

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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.

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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.

I also wanted to mention that now everyone can check out my page on Facebook. Go up to the search box on Facebook and type in “onco girl.” If you see my cartoon character, you are in the right place. Don’t forget to “Like” my page.

To wrap everything up, now I have this cold. I have no idea how I got it. Six months ago I would have blamed this on having a challenged immune system from the chemotherapy, but I just had a full set of blood work done and my counts are rocking. I can’t blame this one on cancer or the treatment. This one is just from being a normal kid hanging out with my friends and not washing my hands enough (a lesson learned).

It's good to just be a normal kid again.

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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.

Every time you ask her how she is doing, she will say she is tired and then laugh. Every time you ask her to do an exercise or an activity, she will give you the look and then say, "OK" and laugh. Every time we reach a milestone (such as lifting her leg up against gravity), she will proudly say, despite the exhaustion, “Look what I did” and then laugh.

When Rachel is having a bad day and even some pain, she seems to always let it out and then move on and begin to laugh again.

Laughter is good exercise (it uses a lot of different muscles), but it is not the only exercise or activity Rachel does in physical therapy. 

When we started therapy, we worked in and out of the pool for Rachel’s treatment. Most recently, since Rachel is spending so much time in the pool with her swim team, we mostly work on land. 
Presently, she spends about an hour and half, three days a week, at our clinic. We are working on her strength with exercises, on her balance (she is getting very good at this) and her gait as well as her range of motion. At the same time, we are trying to keep her pain down and have a little bit of fun.

And, of course, there is the smiling and the laughing. But we don't have to work on that. It comes naturally. 

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Hello, my name is Paul Buerck. I am head coach of the Monmouth Barracudas, Rachel’s swim club. Rachel’s parents asked me to write a blog about coaching Rachel in her return to swimming.

The journey with Rachel has been one that was, sadly, too familiar.

Rachel has always been a hard worker. She loves to swim and dance. She would come into practice straight from dance class and apologize if she was even a minute late. Having had sisters that danced growing up, I respect the amount of strength and energy needed to dance. To have Rachel come directly to swim practice and jump right in without a complaint showed her drive and dedication. As we began the swim season last year, Rachel (who never complained) mentioned that her leg hurt. At first we thought maybe it was the kicking action in her breaststroke, and then thought maybe she had pulled a muscle while dancing and that it hurt more in the pool. The truth turned out to be more serious.

We have a great coaching staff and Coaches Cheryl Criscuolo (who was a college teammate at Monmouth University with Rachel’s dad, Kurt), and Coach Michelle Davidson tried to figure out if she was doing something incorrect in her swimming to cause the pain. We didn’t see anything wrong in her technique, so we thought maybe it was a badly pulled muscle.

I had an eerie feeling as Rachel continued to struggle at practice. The prior year another athlete Lilly Daneman (a dancer and swimmer) had the same kind of pain and was ultimately diagnosed with Ewing’s sarcoma. Because of that experience, I sensed that something was not right with Rachel, but didn't want to even consider the chance of a repeat. I mean what are the odds that two athletes on the same team will both have Ewing’s sarcoma? 

Then came the phone call from Rachel’s mom, Mari. Mari called me at home with news that Rachel had Ewing’s. I couldn’t believe what I was hearing. Could this be real? Mari asked me if that is what Lily was going through, and if I knew anything about the treatment.

I immediately connected her with Lily’s mom, Gerri Daneman. Sometimes the world works in strange ways, and to have a resource of a teammate's family to help in a journey like this was a wonderful stroke of fate.

From the beginning of her diagnosis, Rachel knew she wanted to return to swimming. Her teammates also took up the challenge, hosting a swim meet named Race for Rachel last February that raised over $18,000 for the Make Some Noise for Pediatric Cancer Research Foundation. Rachel attended, and, of course, wanted to race.

From the coaches' perspective, the most difficult challenge for us was not how we handle Rachel’s return to practice.  Rather, it was how to keep her from doing too much? Over the summer I had the chance to swim with Rachel at Seashore Day Camp along with some of her teammates. Lily Daneman, some former Barracuda swimmers who are also coaches at Seashore Day Camp, Rachel and I raced a length of the pool. Of course, Rachel beat me. What I couldn’t believe was how tremendous Rachel looked. Here was a young lady who literally had to lift her leg with her arms to get it in the pool. As I watched her move through the water with beauty and grace, I was truly impressed and amazed.

As we approached the swim season in September, Rachel was still going through treatment. Her parents and I made a plan to have her start slowly in our warm-up lanes and then take it one day at a time. Well, that lasted about one hour. Rachel would warm up and then join Coach Michelle and her group to take on as much as she could handle. Her desire and dedication were an inspiration. Her personality and sense of humor are tremendous. One day she was walking past my senior swimmers who were complaining about their workout. Rachel stopped and said to them, “I just came from chemo and then did swim practice and you think you have a complaint?” She proceeded to laugh and walk away.

Rachel is a reminder to us all that friendship, kindness and a sense of humor go a long way. She is practicing three or more days per week, and has already competed, performing her best time in the 50-yard butterfly. She is back to being just a Barracuda. We are excited for her as she continues to improve and get stronger each day.

I have been blessed to have Rachel touch my life and the life of all her coaches and teammates. She is an inspiration, and we love her.

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I hope everyone reading this is having a nice holiday season. We had a wonderful Christmas in my house this year. Santa was good to me and even Coco (my dog) was happy with her presents, though she destroyed a few of them in minutes.

I had a pretty big day this past Tuesday—a hospital visit for my three-month scans after finishing chemotherapy. My appointment was at 10:30 in the morning so we didn’t need to go the night before. It was pretty easy to leave in the morning at a reasonable hour and get to Children's Hospital of Philadelphia (CHOP) in plenty of time to make my appointment (I’m really not a morning person). I asked my Dad to stay home because he is still feeling a little under the weather, and I didn’t want him to be near any of the kids with compromised immune systems. He was pretty disappointed—we usually go to all of my appointments in force as a family—but he understood. The scans went off without a hitch, right on time, and then we were off to get an x-ray of my femur and prosthesis.

Not long after getting my scans, my mom’s cell phone rang. It was my oncologist, Dr. Naomi Balamuth with wonderful news; She said I am all clear and that my scans were "beautiful." This is such a relief and a great Christmas present.

Comment from Mom: For those of you reading this that are considering a course of action for your child's treatment, Rachel’s news today is an illustration of world-class treatment. Not only were we able to get this incredibly great news, but we got it with a personal phone call from Rachel's oncologist during her crazy-busy day. Dr. Balamuth knows the anxiety associated with waiting for the results of these scans. She knew Rachel was in for scans today, so she made it her business to immediately get the results and convey those results to us without delay. Another example of the world-class heath care we’ve experienced at CHOP.

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This week has been a big week for me. I’m back in school full time this year after missing a lot of the later part of sixth grade. I actually didn’t finish the sixth grade until around the end of July. My teacher at CHOP and my teachers from Mother Teresa were very patient with me and made sure that I worked hard once I felt good enough towards the end of my treatment. My days and weeks now are pretty busy with physical therapy to strengthen my leg, swim practice with the Monmouth Barracudas and lots of homework. I had to go from two physical therapy sessions a week to three because my physical therapist didn’t think I was progressing fast enough. Now that I have been going three times a week, I limp less and I feel stronger. I had to trade one day of swim practice per week to get in the third physical therapy session but first things first. All that said, finding time for 7th grade homework (we get lots of homework) is pretty tough but I make it work. Back to this being a big week, I got my report card this past week and I got all A(s). I worked hard for those grades and I feel pretty good about my report card.

I also felt good enough Sunday to swim in my first sanctioned swim meet this year. I swam the 50 yard freestyle, 50 yard butterfly and the 50 yard backstroke. Notice I swam every stroke except breast stroke. Dr. Dormans, my Orthopedic Surgeon said that because of my prosthetic femur, I shouldn’t swim breast stroke because the stress it would put on my hip joint might cause it to dislocate (not good). So, if you read this Dr. Dormans, I did listen. Back to the meet… take a look at the video of my 50 yard butterfly embedded in this blog. I’m in the closest lane in the video. I swam my fastest 50 fly by almost two seconds. That’s alot even though it doesn’t sound like it is. ☺

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Hello there. It’s been way too long since my last post. Getting back into the swing of things has taken up a lot of my “new normal” time. But the most important news is: I have hair!

Going back to school full time this September took some getting used to. It took me until the middle of the summer working with my teachers to finish the sixth grade so I could move along with my friends this year into seventh grade. I really like my teachers and it’s great to be back with my friends at school. Seventh grade is a lot different than sixth grade. There is a lot of homework, but so far so good.

Having a metal prosthetic “bone” in my leg, especially my hip joint, has given me a “new normal” walk. I still have a limp, but Dr. Dormans says that will go away with time as I get stronger. I really can’t run and jump with my friends or play in gym class yet because if I fall, that would be a really dangerous thing right now. Again, as I get stronger with time, this will be less of a problem. A friend of mine who a few years ago had just about the same surgery as mine is actually able to go to gym class now. It just takes time. Thankfully, I seem to have a lot of that now.

Let me tell you about my new hair. I was pretty much used to not having hair while I was getting chemotherapy. At first I was afraid that people would stare at me, so my parents got me a wig to wear if I wanted to. I also have a LOT of hats. When my hair first started to fall out, I asked one of the nurse practitioners at CHOP to get some shears and cut all my hair off. If I was going to be bald through all of this, it was going to be on my terms. I think I only wore my wig two or three times; after that, I pretty much didn’t care what people thought about me being bald. Fortunately, nobody ever gave me a hard time or even really stared. Now that my treatment is over, my hair is starting to grow back. My hair is really soft and all of my friends keep rubbing my head. My parents are ALWAYS rubbing my head and telling me how happy they are for me that my hair is starting to come back. I have eyebrows and eyelashes, too. I’m starting to feel truly normal again.

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