I am writing this story in memory of my friend Paige who, like me, had neuroblastoma. Paige, Jessica and I, three California teens with cancer, went to Washington DC last year to speak out on behalf of Children's Hospice & Palliative Care Coalition. Paige was a light to all of us, a ray of hope and a great friend. I miss her very much.
When I was ten years old, and had already been in treatment for my cancer for 4 years, a doctor told my mom just before Halloween to celebrate Christmas early that year, because I would not make it until Christmas. I want to share my story with you to show that doctors know a lot, but they don't know everything. I have enjoyed every Christmas since that one and who knows, maybe I've got many more to celebrate. I hope my story lifts your heart and your hope.
My dad found a lump in my side when I was 6 years old. His eyes got really big and he showed it to my mom and they both got really worried. They took me to the doctor who took one look at the lump and told us that we needed to go to Children's Hospital right away. I remember my mom's face and felt really bad for her. I tried to smile to cheer her up.
The hospital was scary. They gave me lots of tests and lots of treats. I remember having to wait a long time in lots of waiting rooms and playing with other kids who looked really sick. Although I was curious about what was going on with me, I was more worried about my mom and dad.
On the second day, while we were waiting in the hallway at the hospital for a really long time, a doctor came by and told my mom we needed to go to the red team. My mom asked, "What's the red team?" The doctor said "oncology." We asked our nurse where pediatric oncology was, and she said, "Right here. This whole floor is oncology." It seemed like everyone knew I had cancer but me and my folks. That's when I asked my mom and dad, "Is what I have cancer?" I could see they wanted to cry, but we were all being super brave. They told me, "Yes, you have cancer, but it is easier to get better when you're a kid. You'll be okay." "Of course we are going to need to do more tests, but this is neuroblastoma and everyone dies from it. Nick will not survive this disease, no one does." One of my doctors - not my favorite.
All I wanted to do was go home and play the drums - which back then consisted of a bunch of my mom's old pots and pans, but the doctors had other plans. They said I could not go home, even to get my stuff. I needed surgery right away. Today.
In the operating room doctors and nurses kept telling me how brave I was. I wasn't doing anything - just sitting there waiting. Everybody was running around talking. Although I couldn't understand the words, I knew that what I had was really bad, that they thought I was going to die but everybody was smiling.
Before they even gave me any anesthesia and I was still awake I saw something in the corner of the room. Don't ask me what it was because there isn't any word to describe it. Some people might think it was an angel, some people might think it was Jesus or Buddha or Santa Claus. It doesn't really matter. All I know is, I felt absolute peace and from that moment on I have known I would be ok. Now, "ok" doesn't necessarily mean that I am going to live to be 100 years old or even to 18 for that matter. I just know that I am going to be ok - no matter what happens. From the moment I saw that "being" in the corner of the operating room before my first surgery, I have had a peace that I cannot describe in words. It has made it possible for me to go through 10 years of too many surgeries and chemotherapies to count, and all the terrible after effects from my treatments. Too many doctors telling me and my parents that I was going to die. So many ups and downs - pain and freedom - death and life.
My tumor was huge. They tried to get as much of it as they could but the cancer was everywhere. They thought treatment might buy me some time and I knew that my parents needed as much time as they could get with me.
For the next 7 years, we went through treatment. That is no small thing. I want to take a minute here to thank my parents. I was adopted because they wanted a baby so bad. I started out as a foster child. They loved me the minute I came to them and because I am of African decent and they are white, they had to fight extra hard to get me. My mom has been with me always. I think we were chosen for each other even though she didn't give birth to me. During all the treatment, my dad had to work so he couldn't be there full-time like my mom, and he worried a lot. He came to the hospital every single day even when he had to work. The first year, I was in the hospital for about 200 days. I wish every child in the world could have such awesome parents.
There would be more peace in the world if everyone had parents like mine. Now, back to my story. There were so many things that happened a long the way, but here are some that might be interesting to you.
One time when we were on our way to the hospital our car broke down. My mom said, "Well, here we are and here the hospital is not. You've got to be at your appointment. So, we'll just have to hitchhike." I was really nauseous from the chemo. I had no hair, I was skinny as a skeleton, I had a tube coming out of my chest and a bucket to throw up in. So there we were, looking really strange and probably very scary thumbing for a ride to children's hospital. We got picked up by a really nice family who was on vacation…from Sweden…they didn't speak any English. My mom kept saying, "Children's Hospital - go that way" and pointing. She pointed to me and said, "Very sick, hospital…doctor… big building…hospital." They were smiling a lot and nodding. Suddenly a light went off in the lady's head and she started to explain to the rest of them in Swedish that we needed to go to the children's hospital. Then they all started nodding really hard and talking in Swedish. We made it to my appointment on time. Mom and I love to tell that story and laugh. We wish we could find those people and thank them.
The bone marrow transplant was horrible…. augh, I would never wish it on anyone. I was 7 and they said that a bone marrow transplant was the only thing that could possibly give me a chance. I just wanted to get out of the stupid hospital and play basketball with my brother. Being in isolation was the worst; it's like being in prison. The rules say that you have to stay isolated for 100 days after a bone marrow transplant. My mom promised that I could go home when the daffodils bloomed. Every day in isolation I concentrated on daffodils blooming and making my body produce white blood cells. Well, the daffodils bloomed one month early that year and so did my blood counts! Sure enough, the doctors were baffled that one month earlier than "normal" my blood counts were strong enough to go home. The docs and nurses were blown away! Never before had they seen anything like it. My mom and dad left a bouquet of daffodils in the room for the nurses and we went home early.
I have been close to dying so many times. My big claim to fame is that I think I hold the world record for flunking hospice. I officially flunked hospice twice. Yippee! The doctors have told me so many times that I was "dying" and put me on hospice care. (If you think about it, we are all dying.) Being on hospice meant that we got home nursing, a social worker, a chaplain and volunteers who would come to our house and help us. It seems kind of strange that they would only come when I was "dying" and not when my family and I really needed it most like when I was going through all the hard treatment. I surprised everyone and got better on hospice care. I think all the support really helped me get better. But when I decided that I felt better enough to try a new treatment, hospice couldn't come any more. That was hard on all of us - to lose support just because I wanted to try to live.
It would be so great for families like mine if we had support like hospices provide even when we are going through the treatment. It seems strange to lose support just because you want to try to live. Last year I went to Washington DC with Children's Hospice & Palliative Care Coalition to speak out on behalf of families like mine and to urge the government to change the hospice eligibility rules when it involves kids. I spoke to Senators Feinstein and Boxer and Congressman Farr. I was scheduled to go to the White House and meet with Laura Bush too but I was too sick that morning. Some day, I really would like to stop by and tell the President and Mrs. Bush that the hospice rules need to be changed because right now they make things even harder for us and it is already really hard. Maybe I'll stop by and see them next time I am in town…maybe next Christmas.
Shannon has since met with California's governor and Nick's Bill is now law.
Shannon has since met with California's governor and Nick's Bill is now law.
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