By Patrick Lipawen

The concept of “normal” is something I think about often.  As a music therapist, I’ve found that most patients have some connection to music, so their sessions with me allow them to focus on something normal and familiar.

Although I work with children of all ages, I think that music therapy can be a particularly good fit for adolescents and young adults like Alex.  In general, here are some things that might take place in my sessions with older patients at CHOP:

- Discussion of favorite musicians or songs.  There may be themes, messages or attitudes within music that resonate with the patient’s experience.  Sometimes it’s easier to talk about the musical world than the medical world, but the conversation can still be meaningful and therapeutic.

By Lamia P. Barakat, Ph.D.

When working with pediatric patients with cancer and their families, in an effort to support them in tapping their resiliencies and making meaning of the cancer experience, we often refer to cancer as “a coat”. At diagnosis, the cancer coat is brand new, with the tags still on. The coat is a bit stiff, uncomfortable, and does not yet feel like it belongs in your closet. During treatment, of course, patients and families must wear the cancer coat nearly every day during treatments, at clinic visits, when physical side effects (such as pain, fever, fatigue) intensify. Over time, the daily uniform gets broken in and it can become difficult to take it off regardless of the amount of distress and disruption that are associated with it. However, we encourage pediatric patients and families to take the coat off as much as possible to try on other clothes in their closet.

Time without the coat allows children and families distraction from the daily challenges of pediatric cancer to engage in everyday activities with friends and family. A break from cancer provides children and families with time to accomplish tasks, such as doing homework or paying bills, and time to have fun, laugh, and feel happiness again. Importantly, breaks from the coat give children an opportunity to engage in behaviors that support their continued development. This is particularly important for adolescents and young adults, who can so easily be derailed from important developmental tasks such as identity development, enhancing their social and romantic relationships, and identifying and achieving short- and long-term goals. Taking time off from the coat allows adolescents and young adults to recalibrate, get anchored, and move forward. For parents, it allows a chance for self-care and to focus on themselves, their partners, and the siblings.

by Anne Reilly, M.D.

I’ve been thinking about Alex, and how happy we all are that he is finished his chemotherapy and getting back to his regular life. I’m so glad his lymphoma responded so well to the therapy. It was such a tough six months for him! Even though it is so hard to get through, we are lucky that we have such effective therapy to offer for young people with lymphoma like Alex’s. Fifty years ago, most kinds of cancer were pretty much incurable; these days, about 80 percent of kids diagnosed with cancer will be cured. We all hope that someday that number is 100 percent.

Medicine has changed so much, and the therapies that we have available to us now to offer are the result of years of clinical research. Some of that research has happened at individual hospitals, like Children's Hospital of Philadelphia, where there are large numbers of doctors and nurses who learn and teach how to do good clinical research. Lots of it has been able to grow through large cooperative groups of multiple hospitals like the Children’s Oncology Group (COG). The COG includes over 8,000 experts at over 200 hospitals around the world, all working together to try to find cures for childhood cancers. Over the years, they have run trials in every type of childhood cancer to determine the best treatment at the time. Once they have the best they can do, they try to improve on it in another clinical trial. Each trial brings us closer to finding the cure for every child diagnosed with cancer.       

Throughout my entire life I have not been medically sound. It has always been something that I have been ok with, somewhat proud of really. I am different and I realize this, for the most part it just means that I cannot compete when it comes to physical activity. I have to do things at my own pace. Also it means I have a bunch of badass scars. I feel that having to go through so many different medical procedures has shaped my personality as well, and I am happy with who I am so even if things were different, I would not have had it any other way.

Before I was born in October of 1990 my parents knew that I was going to have cardiac issues. I was prenatally diagnosed with a hypoplastic right ventricle, a straddling tricuspid valve and pulmonary stenosis. In non-medical jargon, my right ventricle was underdeveloped and the tricuspid valve, which separates the right ventricle and atrium, was abnormal. My pulmonary valve, which allows non-oxygenated blood to travel from the right ventricle to the lungs, was narrower than it should have been.

When I was born no surgeries were needed-- well, at least not yet. My body was small enough at the time that my malformed “ticker” could manage to pump enough blood through it to keep me living. As I began to grow though, my heart would not be able to transport enough oxygen through my body and my heart would need to be operated on. In March of 1992 and in October of 1992, Dr. Norwood performed the parts of the Fontan procedure that I needed (the approach section of the wikipedia article for the Fontan Procedure describes the surgery in manageable terms and provides a picture if you are interested in how my heart currently functions http://en.wikipedia.org/wiki/Fontan_procedure).

On September 30, the Four Seasons held its yearly Parkway Run & Walk to benefit cancer research at the Children’s Hospital of Philadelphia. It was a beautiful Sunday morning, and I was running late.

I am an ambassador for CHOP and was asked to start the race. I caught the subway and made it down there just in time. My parents were not especially pleased (and I did not feel that great about it, either) that I did not make it there with enough time to see my squad members before the race. I did see all the members of Team Rotzy eventually, though. I immediately went to the stage next to the starting line, which took a little effort to locate in the midst of around 9,000 people.

During the opening ceremonies the other ambassadors and I were brought on stage and mentioned. Phillies pitcher Cliff Lee and his wife Kristen were event chairs, so Kristen as well as their son, Jaxon, were brought up on stage. (Cliff could not attend because the Phillies were in Florida finishing a series with the Marlins). Those who accumulated the most donations handed their giant novelty checks to CHOP representatives, and then it was time to start the race.

Quite possibly the worst thing about cancer is the uncertainty the disease brings. The first week was the worst of it for me. I had crucial questions that couldn't yet be answered. 

First, I was told I have this horrible illness that takes people out left and right, which didn't leave me in the greatest mind state. Worse, the doctors couldn't positively confirm anything until they took a biopsy, which is when a chunk of tumor is surgically removed for testing in a lab. Without the biopsy information, doctors can only assume a diagnosis based on demographics. When my parents and I met my oncologist, Sarah Tasian M.D., these were some of the things that were left unanswered.

Dr. Tasian explained that she thought I had Hodgkin’s Lymphoma based on my age and gender. She explained that with a chemotherapy regimen I could potentially be cancer free around November. However, it wasn't yet clear what stage the cancer was in.

by Sarah Tasian, M.D.

It has been my honor and delight to be Alex’s oncologist at the Children’s Hospital of Philadelphia. I met Alex in May 2012 when he first presented to our Pediatric Oncology clinic, and he has handled his Burkitt lymphoma diagnosis and intensive treatment with amazing courage and calm.

Considering everything that Alex had already endured with his heart since he was an infant, it seemed like terrible luck that he was then diagnosed with lymphoma. He has had some significant and unexpected complications during his therapy, but has remained perpetually upbeat and positive despite long hospitalizations, extra medicines and many blood tests. You just have to meet Alex – he takes everything in stride.

I discovered a lump on my neck in April. It was not too big, and it corresponded with the beginning of a sore throat, so I figured a cold was just irritating my lymph nodes. I had it checked out by Temple University Student Health, I wanted to make sure that I was not getting strep throat. They looked me over, and sent me on my way with a brown baggie full of Sudafed and acetaminophen.

Needless to say, after that prognosis I was not particularly worried. After a few weeks the lump had not gone away. In fact, it was growing in size. I became more curious and began researching it on the Internet. (As a side note, every doctor and nurse I have ever met has told me never to do your own research. The things that you can and will find on diseases are sometimes gruesome and disheartining.) I still wasn't under the impression it was anything serious, but if any of my friends asked me about it I would list what WebMD told me it could possibly be, always jokingly ending with lymphoma. They would usually say to me, "Relax, you don't have cancer." They did not have to tell me that though, I never thought I did.

My cardiologist, Marie Gleason, M.D., and my parents, seemed a little uneasier about my lump than I was. At a routine check up she told me to get an ultrasound of my neck. On May 14, I had an ultrasound at Abington Memorial Hospital and the radiologist there let me know he thought it was Hodgkins lymphoma. There was a lot running through my mind, but mostly I was bummed. All I could say to him was, "Wait, so you're telling me that I have cancer?"

Friday, September 21, was a big day for me. It was the day I had my imaging scans done to see if there were any remnants of cancer left in my system.

The scans themselves are boring to sit through. About an hour before they are done a technician injects radioactive glucose into my system. Then I sit around and watch TV or play on my phone. This downtime allows my muscles to relax while the radioactive sugar goes to the sites on my body with high metabolic uptake. The PET scanner is nothing but a large tube that emits gamma rays into my body while I lay still and am moved in and out of the tube. It takes about 40 minutes. The CT scanner is also a tube that I am moved in and out of, this one had jungle-themed stickers on it. The technician injects you with radioactive contrast while in the machine. It usually takes about a day or so for the radiologist to read the results. A long day or so.

While I was waiting, I couldn't help but think of another big moment a month earlier.