My Cancer Story

February 10, 2008
By
When I turned 12 years old I went from being an active kid who went roller skating every week, rode my bike everyday, swam, skateboarded and played every sport from basketball to hockey. Then to sleeping constantly and lying in bed watching TV. My mom took me to the doctors plenty of time requesting blood work, which came back fine. As time went by my mom took me to a research clinic and put me into a depression study. The sudy wasn’t working for me, so on my request we stopped going. This still didn`t change the fact that my fatigue wasn`t normal.

In May 2003 I got a cold and my mom took me to the doctors and she gave me antibiotics. But, as soon as I was finished them I got sick again. We didn’t want the doctor to tell us that I was fine again, so we waited until she was closed and went to the ER. The doctors at the hospital said I was dehydrated and put me on IV for fluids, but after 2 hours of fluids they still couldn’t get my sodium level back to normal and admitted me.

The next day they sent an oncologist to speak to my mom. The doctor told her that I had a huge brain tumor. When my mom told me that I might have cancer all I knew about it was whai I lived with at home with my grandfather.

Telling me that I might have cancer was the most difficult thing she could do, even though I took the news really well. My mom then explained to me that I would need to get a spinal tap, so the doctors could find out if the tumor was cancerous and I was fine with that. That night they did the procedure which was very painful. The results of the spinal tap came back inconclusive, and I was told by my mom a brain biopsy was necessary. Now that was terrifying!!

The biopsy was done the next day and within an hour after the surgery I was awake and eating. It then took another 2 days to get the results back, which came back positive. I had cancer of the brain and spine!

When they finally balanced my sodium level they sent me home with a plan to start out-patient chemo 3 days a week. The first round was actually 2 different cycles, of Carboplain. On June 3rd was when they first admitted me, and it took 2 weeks before I was released. But by June 17th a plan of attack on the cancer began! It would be a 6 month treatment plan. (4 months of chemo and 2 months of radiation.) It was on an out-patient basis, at least we thought it would be, but we mostly stayed in-patient because my sodium, thyroid and infection factors that always made me too sick to go home.



While I was waiting for chemo to start I was suppose to be released, but I was always too ill to leave. It was difficult for my mom to stay with me because I still had a brother, sister and grandfather at home who needed her. My grandfather’s cancer had progressed to the point of no return. My moms Uncle Russ was at the house with my grandfather and brother, and my sister was at her dads house. Even though they all needed her, it was working out well enough for her to be with me to.

We stayed in the hospital through the intial shock of it all. On June 19th they finally put a port in my chest. For the first 2 treatments of chemo was done through my already abused veins.The port seemed like the only choice before my arm veins collapsed. Putting in the port was a bit of a challenge because the main chest vein that was normally on the left side was on the right in my chest, so that is where they had to put it. That was the only drawback and because it was on the right it had to go in deeper than usual. Only one nurse could successfully access it because the needle had to be ¾ of an inch long instead of a ¼ inch long. We had to numb my chest when we left home, which was 1 ½ hour drive drive to the hospital from our house.


On June 20th I was finally released, after a 17 day stay, with plans to begin out-patient therapy. But after a regular visit 2 days later, they decided to keep me for 2 more days because of a fever.We got to go back home again on the 24th. I was able to have alot of family time after I got back before my 13th birthday on June 30th, which what my mom said was the luck of the Irish. But I started out-patient chemo on July 3rd which was uneventful and I was able to have a B-day party on July 5th. It was small, but nice. We have learned it`s to hard for people to deal with the big “C”, so it`s easier to just ignore it, and only about 3 people showed up! Lesson to all that read this, don’t avoid the subject, be there and don’t be afraid to ask questions. It’s all you can do, but nothing is nothing, you can’t take that back!!

When all was said and done, the Carboplatin didn’t show adequate signs of the tumor shrinking, so I then went through a round of Cisplatin, then VA16, and a final round of Cytoxan, which was, by no comparison, the worst! Then, I wound up in the transplant ward because my immune system was so bad, I couldn`t be exposed to ANY infection. When I finally finished chemo, I had to have 25 sessions of radiation. Radiation was 5 days a week for 5 months.

Earlier on I believe I mentioned, my grandfather had been diagnosed with lung cancer in 1999. Well, he was told to get his affairs in order, because he would only have about 6 weeks to live. Well, he decided he didn`t like those odds, and fought like hell to beat those odds.He stayed alive longer than the doctors thought he would, and proved to the military it was an Agent Orange side effect, and finally won 100% veterans disability. We probably would have lost him by August 2003. But he put every ounce of energy he had into seeing me through my cancer, and amazingly lived until Nov. 1, 2003.

Our whole family went through a horrible year, but we survived it! The day grandfather was buried my leg swelled up twice the size it should have been and the doctors found a DVT in my left leg and pelvic veins, which basically was a blood clot from my knee up to my thigh. It had to be surgically removed, even though it was extremely risky because they had to break the blood clot and vacuum it out, but if so much as a small piece of it went to my heart, it could have stopped the blood flow and I would need to have open heart surgery. Once again, the luck of the Irish, that didn`t happen and I made it through.

Well, 2004 remained uneventful. Radiation was done by the middle of January. I finished and began 8th grade with a home school teacher and in June I graduated with all A`s and B`s. At graduation when I received my diploma I got a standing ovation by the entire class!!

In Sept. 2004 I startd my freshman year while maintaining medications and good grades, I was doing great that year!! By this time I was taking alot of medications to make up for the fact that the tumor was so big it destroyed a bit of my brain factors. Some of the medications I was taking includes: Levoxyl for my thyroid, Cortef which was a steroid, growth hormones for my immune system and adrenal insufficiency(another part of brain affects), and I now had diabetes insipidus(it’s the same as diabetes but it effects sodium in take instead of sugar) Since I had a blood clot I had to take blood thinners for 1 year, ending in Nov, 2004.

Everything was great until about Dec. 11, 2004, when I got sick. My mom did all she could, but on the morning of the 12th, my mom couldn`t wake me up and had to take me to the ER. When she took me the doctors told her that I was dehydrated and they would probably let me go that night or the next day. By 6pm she was told I would have to be airlifted to DuPont that night. But, my mom was already in the process of working on switching me from DuPont to Philadelphia’s Children’s Hospital because C.H.O.P. was closer, so she told the doctors at the ER to forget it, and they airlifted me to Philadelphia instead of Delaware.

That was one of the best choices my mom have ever made during this because the doctors were absolutely awesome. It was also about ½ an hour closer than DuPont was!! The Children`s Hospital of Philadelphia was definitely going to be our new home away from home. Our local hospital that my mom took me to told her that, I would have to be airlifted to a hospital more aquired to deal with my needs.

Luckily for my mom, our grandma in Philadelphia, well into her 80`s, took care of everything and had the entire family there ready to be there for her.You see, her Aunt Gale and Uncle Tom were already there for her. Well, Aunt Gale and my Grandma were there, at the hospital, before my mom got there because she couldn’t go in the helicopter with me. So, the support system she had was there for her to take some of the weight off her shoulders.

What I had was basically a brain clot, a.k.a. a cerebral venous thrombosis with right temporal tube infractions, which explained what a reverse stroke was, at first even the doctors thought I would have to go through major in house therapy, so I can recover from the effects. But I was lucky enough to get through it. Even though I was admitted on Dec. 12, 2004 I was back in school by Jan. 4,2005 with no lasting effects other than medicines I was already on. I also made the hHgh HonorsRroll by the end of the school year, I made it!!

My moms rock through all of this was her stepdad. At any time that she started to loose track of reality or of what was important, he was always there to get her through it all and still is. He always stayed in touch with us, and somehow, he always knew what we should do, whether we knew for sure or not. Whether Pop said it or not. It always seemed like he had the right answer. Blind faith is not always bad!!

Well, now it`s almost all said and done, my family moved to Colorado, where my mom’s stepdad lives and seriously I have no regrets moving here. Other than being away from my sister who decided to stay in New Jersey with her dad. It was her choice to stay, just like it was for my brother and I to move out here, but I think our life out here si so much better than it was in New Jersey.





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CatherineK said...
Dec. 20, 2010 at 7:27 pm
That is a great story and it is very uplifting. I have a friend who was diagnosed with Rhabdomyosarcoma 6 months ago and so far things are going well. She really enjoys hearing stories like this so I will definitely share this with her.
 
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