Hi, my name is Kasey Harvey. I am 13 years old; on November 17 th 2014 I was diagnosed with Alveolar Rhabdomyosarcoma. A rhabdomyosarcoma, commonly referred to as RMS, is a type of cancer, specifically a sarcoma(cancer of connective tissues), in which the cancer cells are thought to arise from skeletal muscle progenitors. It can also be found attached to muscle tissue, wrapped around intestines, or in any anatomic location. It mostly occurs in areas naturally lacking in skeletal muscle, such as the head and neck. Its two most common forms are embryonal rhabdomyosarcoma and alveolar rhabdomyosarcoma. Embryonal rhabdomyosarcoma (ERMS) usually affects children in their first 5 years of life, but it is the most common type of RMS at all ages. Alveolar rhabdomyosarcoma (ARMS) typically affects all age groups equally. It makes up a larger portion of RMS in older children and teens than in younger children (because ERMS is less common at older ages). ARMS tends to grow faster than ERMS and usually requires more intense treatment.
Two weeks before I was diagnosed I woke up with a swollen face. My dad decided to take me to an Urgent Care; the Urgent Care doctor suggested we go to the dentist because he thought I might be something to do with my teeth.
So the next day my dad took me to the dentist where they did X-Rays and they said I had a sepsis on one of my back teeth and that I needed a root canal. The next day, which was a Friday, my dad and I headed down to the Endodontist where I received a root canal. After the root canal was complete the endodontist informed us that the tooth was perfectly healthy and that was not the source of the swelling and pain in my cheek.
We left the endodontist and went to the Scripps Emergency Room, where my dad and I sat in the parking lot debating whether or not to go in. We left the Emergency Room without going in, but as we were driving home about three fourths of the way home my dad looked at me and said ‘’something just isn’t right’’. He made a U-turn and we drove all the way back down to Scripps Emergency Room. The doctor gave us a choice to get stronger Antibiotics and go home, or get some IV pain medication, a CAT scan, and find out the source of the problem. We decided to stay and get some medicine and a scan. After the scan, the doctor came into the room and reviewed our results with us. He said that my left maxillary sinus was filled with infection. He gave us some stronger antibiotics and told us that if the swelling wasn’t down by Monday to go to Rady Children’s Hospital. When Monday came around the swelling wasn’t any better, so we headed down to Rady’s Emergency room. I was then admitted and started on IV antibiotics. On Wednesday they decided to do a surgery to drain the ‘’infection’’. They also took a biopsy. I was then discharged on Thursday. Then on that Sunday my whole family went down to Orange County to watch my soccer team play, and to tell them I was going to be back.
After the game was finished we pulled out of the complex parking lot, just as we were leaving my sister informed us that she left her chair on the field. So my dad made a U-turn and ran back down to the fields. A couple minutes passed and then my moms phone started to ring. She answered in, and then it look as though all the color had left her face, she then was crying as she left the car. She told my sister and I to stay in the car. We watched her on the side of the road flustered with her hands on her knees. As my dad was running up my mom waved her arms franticly at him as she yelled something. She then handed the phone to my dad who then started to pace in distress. Then the phone call ended and my sister and I got out of the car. Four of my soccer teammates were also there, as my mom told me three words that would change my life forever. My world came crashing down as she said ‘’you have cancer’’. Those three words are the worst words you could ever hear.
The next day we were back down at Rady Children’s Hospital, but this time in the Oncology Ward. On the Monday I arrived I got a Chest CT which both came back negative, which means the tumor hadn’t traveled yet. On Tuesday I had a Surgery to put in my port, which is a little piece of plastic in your chest which has a tube that goes through an artery in your neck and down into your heart. Also they attempted to do an MRI but sense I had braces it wouldn’t work because they metal made the pictures blurry, so they couldn’t get a clear view of the tumor. I had to get discharged from the hospital, go to my orthodontist, get my braces off, and then I finally got to sleep in m own bed, even though it was only one night. The next day we made our way back down to the hospital where I was admitted again. I then did the MRI, which took 2 whole hours to complete. I also had a lumbar puncture, where they take out some of my bone marrow from my hip bone and test to see if the cancer spread to my bone marrow. The MRI and the Lumbar Puncture both came back that the cancer hasn’t spread! On Thursday night I had my first chemo cycle, it would be the first of many many many chemo cycles. We were then given the ARMS protocol, which showed that I had 42 weeks of chemo ahead of me and 8 weeks of radiation, which started in February.
Just days after I was discharged my dad had me running miles on the treadmill and lifting weights. I’ve met so many amazing people throughout this journey, but one person really stands out. I’d just like to thank Clay Treska for all his help. In the very beginning, just a couple weeks after I was diagnosed he came over to my house and he helped us build a solid workout routine that would help get my heart rate up, without pulling a muscle. He showed my dad and I how to do certain band exercises and which cardio equipment would be good for my body. Working out during my treatment and the last ten months has helped my body tremendously. One of the reasons why working out while undergoing chemotherapy is so important is; chemo damages your heart, so its very important that while after chemo you need to get your heart rate to aCertain level so that it pumps out the remaining chemo. Also one of the chemo’s I receive causes something called neuropathy. Neuropathy affects the nerves throughout your body; it can cause numbness and tingling in your hands and feet. It also causes your muscles to tighten. By working out it has helped my neuropathy stay under control, and my muscles to not get extremely tight. Clay also taught us the importance of keeping weight on during treatment. At one point I got very skinny, and I refused to eat anything. But after Clay talked to me and explained how importance nutrition was I started to eat and gain weight again. I also have to drink these very gross protein shakes EVERY morning after my workouts, but when I’m drinking them I know that it’s helping my body and giving it nutrience. Someone once told us that it takes calories to help fight cancer and how important eating good food really is.
When I was first diagnosed I never thought I would ever be able to get trough this. Get through 32 cycles of chemotherapy, which has caused me to lose my hair, make me very sick, and be extremely fatigued, 24/7, and many more side effects. Get through 8 long long painful weeks of proton radiation, which also caused me to get sick, tired, and develop an extremely painful burn under my left eye. And get through 44 weeks being isolated from the outside world, not being able to go to school, see my friends, and play soccer. But I made it; I never gave up hope and always fought it with all I had!
Looking back at the first week I was diagnosed I feel like our family thought that we would have to fight this on our own. But we were very wrong! The support from so many people is incredible. I am so extremely grateful that all these people have been by my side the whole time. I’ve met so many amazing and extraordinary people I would have never ever met if it weren’t for cancer. Cancer has taken so much from me including my hair, my whole 7 thgrade year, soccer, my fitness, and pretty much my life. But it has also given me so much too, like; amazing experiences, a new puppy, and so many new friends who I will remember for the rest of my life. Thank you for letting me speak at this amazing event, I am so happy I was able to make it out today! Thank you!