Sean’s Story

It all started on a nice summer day at Otsiningo Park. My mother had taken us, my brothers and me that is, to go rollerblading around the park. My older brother Mat (11 at the time) and my younger brother Stephen (6 at the time) were speeding off ahead of me while I kind of hung back, but it wasn’t hanging back for any particular reason. I was too tired to keep up with them, which was not usual, I would usually be right there with them, but I wasn’t. Then, as they were still speeding off, I was stuck on a little hill, no steeper than a wheelchair ramp. My mother was next to me as I struggled up the little hill. I just couldn’t do it. I was so tired that every time I tried to get up it, I would have to stop, and each time I did I would be breathing heavily. It was like I had just run a couple mile laps around the park, and I am not a runner. We went home that night and didn’t really think anything of it at all.

The next morning I had woken up with a strange rash on one of my arms, I showed my mother and she just said to let it go and see what happens the next day. So the day after I woke up and it was gone from the one arm, but moved to my other arm…? Neither my mom nor my dad knew what it was so we went to the local hospital and did a couple tests and waited around for a while. The doctor came back and asked to speak to my parents alone in another room. At the time I was 8 years old and didn’t think anything of it. I was sitting there playing Duck Hunt on the regular Nintendo when my parents came in crying….I thought to myself, what is going on. First off, let me tell you one thing about my dad, he doesn’t cry unless something is really wrong, so I knew something was wrong. They came in, sat down on either side of me and told me, while crying, that I had cancer. The type of cancer that I was diagnosed with was Acute Lymphoblastic Leukemia (ALL). I was sitting there playing the game still, didn’t really know what to do or say, because what 8 year old kid truly knows what cancer is and what it entails….? They told me that the little red dots that were on my arm were known as Petechiae [pi-tee-kee-uh].

They wanted to ship me up to Syracuse University Hospital so I could start treatment. The doctors told me I could either go up in an ambulance with one of my parents or just go up with my parents in our Nissan Quest, I chose the mini-van. We got to the hospital and they immediately started to stick me with needles, or what seemed to me to be immediately. I was on the 7th floor of the hospital for one week, which felt like it was at least a month. I had an IV in my arm for the whole week and I had to keep my arm straight so they put a cardboard type thing under my elbow so I would keep my arm straight while I was getting the treatment. Once again I was 8 years old so I hated not being outside playing around with my buddies. Throughout that week there was an ambush of doctors and nurses that kept coming in and checking me out. I had gotten a lot of gifts from mostly family members like, get well cards and stuffed teddy bears, but I will never forget one gift that I got from my dad’s friend, Marty. He had gotten me a rusty-brown colored bear that was about the size of a desktop computer and I had an extra pair of boxers that I hadn’t used so I put them on the bear, and to this day they reside on the bear.

After the first week I got to go home and relax, only for a little while, still I had to go back up to Syracuse, and when I had gotten home there was a huge “Welcome Home” sign hanging on the back door and that really meant a lot because I knew my family and friends were thinking of me.

For an 8 year old boy, being stuck with a needle was like torture. Eventually I had minor surgery to put in what is called a “portacath” or “port” for short. A “port” is a small plastic, circular device with a rubbery center that could be placed under the skin, with a tube running to a main vein so that drugs can be put into a person’s system almost directly. After I had the port put in, it wasn’t as bad as being poked in the arm, but it still wasn’t the best thing. They gave me some cream that would numb the skin over the top of the port so that I wouldn’t feel anything when they inserted the needle. I would have to stay in the hospital for three or four days at a time to get drugged up with “mountain dew” because it looked exactly like it, but was not even close to it. During the three or four days that I would be in the hospital I would not eat or drink, I despised hospital food. Whenever the cafeteria people came around to give out food I would say no thank you, buy my neighbor would get it and let’s just say it made my stay worse because I could not stand the smell of it.

Some of the treatments that I had to go through were mostly the three or four day stays in the hospital but other things that I had to have done were getting spinal taps, and it’s exactly how it sounds. I would be partially sedated and they would curl me up so my spine would be better exposed and they would stick a needle in and remove spinal fluid and look at it for traces of Leukemia. Other things would be going to get blood taken every so often to make sure that my blood counts were where they were supposed to be. The good thing about the sedative they used for the spinal taps or bone marrows were that it had a special drug in it that would make me forget what happened for that short amount of time.

After undergoing 2 years of treatment, I had a bone marrow test done which is where you get partially sedated and they take a needle and stick it into your hip bone and take out marrow and analyze. Well they noticed that the cancer cells had come back, this is when I was ten years old. My doctor came into the room we were in and told my parents and I that I had relapsed (the cancer came back). After going through 2 years of, what I thought was rough treatment, I had to endure another 2 years of more intense treatment, such as general cranial radiation for 2 weeks straight which meant going every day to Syracuse to receive that treatment. I was considered cancer-free after the radiation but still had to go through more chemotherapy treatments to hit the cancer hard so it didn’t come back. I had my last treatment right around my birthday, March 30 or so in 2002. I would then continue to go to Syracuse every month to make sure everything was going right while having to go every 3 months to visit with my endocrinologist (growth doctor) because all of the chemotherapy and radiation treatments stunted my growth and hormone levels. From 2004 to about 2007 I had to self-inject myself every night with growth hormone to get my levels back to where they should be.

I was going to Syracuse every 3 months just to meet with my doctor in the KNOT (Kids Not On Treatment) clinic. Just after a recent visit to Syracuse in 2007, I was hanging out with one of my good friends, Shaun, just us two in the house watching TV and I started to slur my words and I was just laughing about it and didn’t think anything about it but then, I don’t remember this at all, but I collapsed to the ground and had a seizure. So my friend, Shaun went and got the neighbors and then called 911. I remember waking in the ambulance at my house and then arriving at Lourdes Hospital and then not remembering much after that till I was in Syracuse University Hospital again. My parents told me that I had had a more severe seizure while in the emergency room at Lourdes hospital that I didn’t remember either.

After doing some scans they found one main tumor along with 3 smaller tumors in my brain. Now, I had to go through a totally different protocol because it was a totally different cancer. The reason why I developed a brain tumor is because of the treatment that I had for the first and second Leukemia, but I had to get the treatment. Well, when we were up in Syracuse, the doctors wanted to do a biopsy of the tumor, so they went in took a little out and analyzed it and found out that it was a Glioma (Glahy-oh-muh) or Glioblastoma Multiforme (type of tumor). The doctors in Syracuse thought that the tumor was too close to my brain to operate on so we went for a second opinion, from one of the doctors in Syracuse that we were good friends with and she had a good friend at Duke University Hospital, so we got referred down there. When we were talking to the doctors down at Duke, they said to us, “What are you doing? You should be down here right now getting that tumor taken out.” So off we went down to Duke; luckily we have relative down in North Carolina so we stayed with them most of the time. The doctors from Duke cooperated with the doctors in Syracuse so I could receive my medicine at Syracuse, that way I wouldn’t have to go down to Duke and stay there while getting treatment.

The treatment consisted of 4 chemotherapy treatments (either intervenes or by pill). I was put into a 9 week base test trial, so there wasn’t even a proven treatment that worked for my disease. 1) Irinotecan-IV (intervenes) chemo, 2) Avastin-IV antibody, 3) Temadar – pill, 4) Etoposide-pill. I had to go to Syracuse every other Wednesday to receive the IV chemotherapies, but for the other two oral pills, I had to take Temadar for the first five days of the cycle, along with that pill for the first five days plus another five days, I would take the horse pill called Etoposide. I also had to take an anti-seizure med to make sure I don’t have another seizure. I went through a year’s worth of treatment with all four of those medicines, and then after a year I am currently only getting Avastin, every other week.

The main reason for writing this story is so that for those who don’t know about my situation, and for those who did know about it and were there day-in and day-out to help me fight it every step of the way. I don’t think I have thanked you all enough for being there when it really mattered to me. Even a big thank you for the Wegmans Deli crew for understanding about my situation and giving me the day off to get treatment or doctor’s appointments. Again, thank you all for putting me up for the night (Bill’s parents) and for putting up with me.

I want to say a HUGE thank you to my family members and a HUGE thank you to all my friends because without you guys, I wouldn’t be here today!