Last week I was on my spring break and was fortunate enough to be able to go to Stuart, Florida with my family.

We had an amazing time. The men in my family are nature fanatics so we visited the Everglades. The wildlife that resides in the swamps attracts all kinds of visitors. We were happy to be among the crowds watching the alligators sun bathe and the hideous buzzards circle the skies as they scavenged carcasses. Though the buzzards landed too close for my mother’s comfort on many occasions, we all enjoyed ourselves there.

The rest of the trip we spent in and around the resort. We made some friends at the hot tub, and even though they were Mets fans, they were still pretty cool. On our visits to the beach my mother collected shells and I got some terrible sun burn. The sun has never been kind to my fair skin so at least I had expected it. I tore through the first Game of Thrones novel and had lofty aspirations of finishing the second one before season 3 starts March 31 on HBO, but those dreams have been dashed since then. My brothers and I fished one day, but it was just another day in the sun for me since nothing tugged on my line. Two manatees swam in front of my brothers while they fished. It made Adam’s day and I was jealous I missed them. My father gave Paul and me valuable critiques on our golf swings while we hit golf balls at the hotel’s lake driving range.

Last year I spent so much time researching about, saving money for and eventually spending money to book campsites for a month long excursion through the United States. It was a wonderful, approximately 9,000 mile long venture that had my friend and I hopping from national park to national park with a few cities sprinkled in. I had all the greats included, but as we were looking to purchase a used automobile for our journey, we had a little hiccup in the schedule. My lymphoma diagnosis and treatment coincided with the road trip, and unfortunately had to take precedent. It was the biggest bummer of my illness. My mother knew that the cancellation was going to be the biggest let down for me. Right when the radiologist told me at Abington Hospital that he thought it was cancer, my mother grabbed my hand, started crying, and said, “don’t worry, you’ll go on your trip.” I called and told all the National Parks where I had booked campsites at the sad news about my cancellation, promising them that I would return the next year.

Well that time has finally arrived, and this year it’s looking even better than last. I have had more time to plan and speak with my backpacking and traveling consiglieres, my father and my Uncle Pete, who had advised me on where to go and what to see, as well as what to pack. Probably the greatest improvement from last year though is the mode of transportation. My friend is planning on purchasing a new double cab Toyota Tacoma for the excursion.

The trip itself hits all the big national parks and some cities as well. We will see Bourbon Street in New Orleans, the Alamo in San Antonio, the Hoover Dam outside of Las Vegas, and Alcatraz in San Francisco. However, the majority of the trip will be camping. My father has told me only amazing things about these parks, and I will finally behold their glory for myself. We will hike to the bottom of the Grand Canyon, scale the half dome in Yosemite, see Old Faithful erupt in Yellowstone, and step foot on glaciers in Glacier.

Last blog I commented on my potential cirrhosis and how, as of now, the only thing I know that I have to do is cut out alcohol. I know abstaining from the bottle is a foreign concept to most 22-year-olds, especially after only being able to legally imbibe for a year. But for me, from now on, when I go to bars with my friends it will be Philly water on the rocks over rum and cokes.

I was fortunate enough to get to drink a few times over winter break, before I had to give it up for good. I had not been able to drink since the previous spring due to my chemotherapy regimen, as well as the blood thinners I had to take after my pulmonary embolism this summer. Going to the bar was fun, yet a little challenging though, I still was watching my intake and since it was my first time drinking again everyone offered to buy me drinks (and some people do not understand the concept of no thank you). So, for future reference, water will suffice if you see me at a bar and want to get me a drink.

Alcohol and I have had a rather tumultuous relationship since we met when I was sixteen in the woods by the bowling alley. It has put strains on my relationship with my family, and tightened the relationships I have with my friends. I have made plenty of mistakes while drinking, and had many great times as well, but it is nothing that I cannot do while I am sober. Once again I am going to take this restraint my health has put on my life in stride. I know that I do not need it, and it can only be beneficial to my health.

Last Monday January 28, 2013 I had my first checkup since I was declared to be in remission, and I am very happy to say that I am still cancer free. Every three months I have one of these visits to insure that there is no resurgence of my lymphoma. I know that I could relapse and that is scary to me, but I don’t let it cross my mind. I will cross that bridge only if I have to. If Burkitt’s lymphoma does come back, it usually happens early on. As time goes on the likelihood I will relapse becomes less and I will only have to be seen every six months.

On Monday I took the subway to my appointment. The appointment consisted of a CT scan of my neck and chest, blood work and a meeting with my oncologist, Sarah Tasian M.D. I am accustomed to having a PET scan with my CT scan, but to lessen the amount of radiation I am exposed I only have to get a CT scan now. With the exception of my platelets being low, everything came back clear from an oncological stand point.

Dr. Tasian and I spoke about a potential problem I may have with my heart physiology. The way that my heart was rebuilt causes a change of pressure in my liver, which may cause cirrhosis. Cirrhosis is a condition in which healthy liver tissue is replaced with fibrous scar tissue. In the future I will need to have a liver biopsy to see if this will afflict me. This also may be why my platelets are low. My liver has made more blood vessels between it and my spleen, which may be causing platelets to get stuck in my spleen.

Most recently my iPhone has kept “Sing about me, I’m dying of thirst” - a song from Kendrick Lamar’s album, good kid, m.A.A.d city - in constant rotation. The track is a combination of two songs, and I would love to talk about it in its entirety, but on here I will only be discussing the first song, “Sing about me.”

It is a beautiful song. Behind a very smooth beat Lamar rhymes in the first verse about a call he had with the brother of one of his friends, Dave, who had recently been gunned down due to gang violence. Dave’s brother is asking Kendrick to remember to put them in his album, because their story is important to guide other kids to be good, and have aspirations other than gang life. If you want to learn more about the song, rapgenius.com,is one of my favorite places to look at rap lyrics, butI must put a warning out asparental discretion is advised.

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).