Rhabdo chronicle...

I am writing this blog not only for my own peace of mind, but also in hopes that anyone who either has a child with cancer, or is/has someone they know and love who has to go through chemo and radiation, maybe there is something I can share that will help you understand what this is like. And also maybe there is something that helped me cope with the whole process that I can share that will help them. Then I feel like there is purpose in what I had to go through.

And actually on a personal basis.. I learned so much from my experience with cancer I know for sure I am a better person for it.
I appreciate everything. Every day holds something new and exciting for me. I LOVE LIFE!

I was 11 years old when my Mom said to me, " if you eat all of the Easter candy now, the Easter Bunny won't bring you anymore."..

I said, "What candy?" .... She said, "come here".. And she felt my cheek, there was a fairly large hard lump there. If you look carefully you will see the "bump" on my right jaw, it kind of caused a little "wrinkle".. That was Good Friday...

On the Monday right after Easter. I went to both the pediatrician and our dentist. Both put me on antibiotics. When the bump wasn't gone in 5 days my Mom started to get worried. The doctors tried all kinds of things. Nothing worked. I had my surgery on my Dad's birthday in May of 2000. I am told that it is a good thing that I was diagnosed so quickly, as my cancer was a very aggressive one.

My Mom and Dad, worked hard to find out what was wrong with me. This is something very important to understand.. You must be your own advocate. I really want to encourage everyone to keep going, if something doesn't sound right to you. Keep looking for answers, you don't have to be satisfied with everything the doctors tell you.

Mom and Dad researched everything they could find. The Internet has a lot of good resources, but you have to be careful to find credible sources.

Finally they were afraid they had found some answers. Mom found not only what she thought was the diagnosis, but also my surgeon on the Internet.

I had my surgery, right after surgery I had a lot of bleeding so I had to go back to surgery because I hemorrhaged. It was quite an ordeal. I should say it was surreal. I was diagnosed with Rhabdomyosarcoma, a rare for of childhood cancer. The doctor's told my Mom and Dad that I would need chemotherapy for a year and that I would also need radiation. I remember my Mom telling me that I was very sick but that I was NOT going to die. She truly believed this and because of this, for the most part I did too. It wasn't until just after my radiation ended and I was super sick that I began to think... Well maybe.

I was started on chemotherapy right away. Within the first week I started to lose my hair. I remember sitting on the porch with my Mom and sister. The wind blew, and all of a sudden my hair was floating away on the breeze! I nearly started to cry.. When a bird came and picked up my hair for it's nest.. That made me feel so much better!

I had to go for chemotherapy and be checked out every week. Then every third week we had to go inpatient for 5 days of chemo-cocktail. That is a combination of chemotherapy drugs. What helped me was having a special routine, that was just for the hospital.

My Mom always had little craft projects for me to do.

My sister would also do crafts with me, or just sit and watch a movie with me. So would my brother. I think just having the people around me that I loved helped me a lot. Mom and Dad slept every night on a cot by my bed. I was never alone at the hospital. That helped me TONS because then I was never afraid.

We always watched movies. But what helped me was having my chemo at night. My Mom arranged for me to have it at night so I would basically sleep through the worst of the chemo. We instead getting chemo, we called it "movie night".. we always watched grumpy old men, Mom always got popcorn and soda (sometimes I was too sick to eat it, but it felt good just to have it) she would lie in bed with me and we would cuddle and watch the movie while the chemo drugs were given to me in an IV. I had something called a Medaport. That was a small device that was surgically inserted into my chest that was connected to my aorta. (chemo drugs are very caustic and would burn my veins in my arms, so that is why I need the Medaport) It felt weird but I got used to it. Just like I got used to a lot of things.

After my chemo cocktail I had to have shots everyday for 2 weeks, to boost my blood counts. This helped me fight infection, because the chemo would knock out my white blood cells. My Mom was taught how to give the shots to me. After a while she got so good at it, that I wouldn't let anyone else give me shots. So even in the hospital Mom gave me my shots.

I started my radiation oncology therapy in the fall of 2000. I had 6 weeks of daily radiation ahead of me. Truthfully radiation was the hardest of all of it. I was still getting chemo every week. A mold of my face was made, and a mask was designed just for me. Everyday they had me lay down on a special platform and then they screwed the mask into the platform, closed the four foot thick door behind them and zapped me with radiation. This is a photo of my mask you can't see the holes in the sides, but they are there, they would screw the mask with me in it, into the platform. By the end of the six weeks, I was burned on my face, inside my mouth, it's been nearly six years and my mouth is still recovering. It took a long time for me to be able to eat much. For anyone undergoing radiation or just chemotherapy. There were three things that helped me cope with the pain of mouth sores. That was something called Walter's wonderful.. which is a maalox based medicine that the pharmacist mixed for me. Biotene which is a mouth wash that helped me a lot. And also Nystatin, that keeps your mouth clear of fungal problems.

The emotional side of radiation is a HUGE one. Everyone thinks that chemo is the worst. Chemo is no fun, I was able to deal with nausea because I used Zofran. Zofran was basically the only way I could deal with the nausea. Radiation was miserable because of being burned. It is like getting a really bad sunburn, then going back out in the blazing sun everyday for six weeks. It wears you down physically, mentally and spiritually. The combination of the three is what made it really hard for me. I still get what is called scatter. It happens when the radiation cycles through my system. It shows up like bright red patches on my face. I've noticed that when this happens, I get tired. Along with all of this, I just could not eat. It hurt too much and I had had enough. A dietician came to see me and my Mom and basically told us she had calculated just how much weight I could lose before I need a tube in my stomach. She then told me I was within 8 ounces of that weight. That scared me. I didn't want a tube. So they started giving me Marinol, which is a synthetic form of THC (marijuana) that was an interesting experience! I at age 11 had what my Mom called the munchies! I found myself craving Ramen noodles, I ran hot water over them and sprinkled the flavoring on it! What was that? I joke about it, but it really helped me. I'll never smoke the stuff, I had it 3 times a day during the worst period of my life. YUCK!

Mom started bringing food from home. She made everything in the microwave at the hospital. We laugh at some of the things she can make in the microwave! Even cake!

At home we kept things pretty low key the thing that helped me so much were my pets. Above all else I was still me. I needed things to be the way they always were. Animals are a HUGE part of my life. If I didn't have them, I doubt I would have done as well as I did.

More about that in the next blog....