Lindsey's Comfy Corner
I HAD A BONE MARROW TRANSPLANT
Hi! This page is all about me and what it is like to have a Bone Marrow Transplant. This page was written by me (but my Mom helped me type it). I had a disease (NOTICE I SAID "HAD"!) called Myelodysplastic Syndrome. My bone marrow stopped working, and it stopped making red blood cells. You cannot live without red blood cells. I got diagnosed on July 18, 1995. For about a year, I had lots of doctor appointments, hospital stays, surgeries, blood transfusions, medicine, and LOTS, I MEAN LOTS OF NEEDLES! I didn't like the needle pokes. But you have to get used to them and after awhile I got a port-a-cath, so it was better than having to get IV's all the time. It was in my chest, and it had to be stuck with a big needle too, but it was still better than getting IV's. My Mom put some Magic Cream on it that helped me not to feel the needle poke as much. I was sick most of the time and I had to quit going to school in the 5th grade, after I had only gone for about 2 months. Then I started homebound school, and my teachers came to my house to teach me. It was okay I guess, but I missed going to school and being with my friends. After about a year, a doctor in Houston (Dr. Ogden) told me I was going to have to have a Bone Marrow Transplant. I was very scared because I didn't know what it was, and I cried because I saw my Mom crying and I thought I was going to die. Dr. Ogden told my Mom about lots of bad things that might happen, but she also told her that I had no choice if I wanted to be cured, and I WANTED TO BE CURED! So, they took blood from my brother, my mom, and my dad, and guess what? - my brother Shane was a perfect match!!! My doctor in Austin (Dr. Sharp) told my Mom that was very unusual and he said it was very good for me that I had a match. So the doctors in Houston started making plans for me to have my bone marrow transplant. It was very hard because my Mom had to help me learn all about it, and she also had to help Shane to not be scared. He would have to have surgery for them to get the bone marrow out. He was really scared and sometimes he would cry about it. He wanted to help me and he knew that he could save my life, but he was still scared and I didn't blame him for being scared, because I was scared too.
My family had to move to Houston for the time I would be in the hospital and for awhile after I got out of the hospital. We stayed there about 4 months. I went in to the hospital on May 17, 1996. I had ten days of very high-dose chemotherapy. The first four days I had to take pills - 22 of them at one time - every six hours!!! I had to take lots of other medicine too; it seemed like a nurse was constantly coming in my room telling me to take another pill. My nurses were really cool though, and one of them made me learn which pills I had to take so I wouldn't take the wrong pill. I had to take the pill chemo for four days. It was called Busalfan. Then I had to take I.V. chemo for four days. It was called Cytoxan. All of the chemo made me very sick - I threw up all day long for many days, and then my hair all fell out. I knew that I would probably lose my hair, but I was really sad when it happened. My step-dad finally had to shave my head because when my hair started falling out, it was everywhere and was making a big mess. I was very sick and I was very sad that I had to go through this. Some scary things happened to me while I was in the hospital and it was really awful. But finally I started feeling better and I got out of the hospital after I had been there about a month. We had to rent an apartment to stay in for almost 3 months. I had to go to the clinic almost every day, and I had to be put back in the hospital a couple of times. One time I went back in for 10 days, and the other time I had something really bad happen - it's called Cyclosporine Toxicity - and it made me have seizures and my brain quit working and they had to put me in ICU on a respirator. My Mom said I almost died. But I got better from that and I'm glad that didn't happen again.
Finally we got to come home! It was the greatest day. I was still very weak and was sick a lot and had to go to the doctor every week. It was hard on my family and me. It took a very long time, almost a year, but slowly I got better. I have had a lot of complications from the chemo and the transplant. But it's okay, because pretty soon my doctor is going to tell me that I am cured. It will be the happiest day of my life when I hear that, and it will all be worth it if I will be cured from my disease.
About a month after I came home, I got to start back on home-bound schooling again, for 6th grade. My teachers came to my house a couple of times a week, and in between my Mom helped me with my homework. It was hard to keep up with it because I didn't feel good a lot. But I did keep up and I made all A's and B's for the whole rest of the year. Finally, my doctor let me go back to school, but only for the last 3 weeks of school. Two social workers that knew alot about kids with cancer went to my school and explained to the kids about my disease and about the transplant. The kids asked a lot of questions about me like if I my hair had grown back and if I still had to go to the doctor. One kid wanted to know if he could catch the cancer from me and they told him he couldn't. They explained that I would be very tired, and that I could not go to P.E., and I would still be missing some days because of going to the doctor. When I went to school, most of the kids were nice to me, but I still didn't feel like I fit in. It was very hard, and it is still hard because since school has been out for the summer, none of my friends has called me to ask me to do anything with them. It hurts my feelings because there is nothing wrong with me and I don't understand why they act like they don't like me. I am going to be a cheerleader next year, for 7th grade, and I hope that when I get to go back to school all the time that the kids will be nice to me and I hope I can make some good friends.
I have gotten to do some really cool things this summer because of having cancer. One thing is that I went to a camp in Connecticut for 9 days. The camp was started by Paul Newman, he is a famous actor. It was great, and I got to fly there. I had never flown on an airplane before and it was really cool. And also this summer, I am going to another camp for kids with cancer. My mom gets to go to this one with me and we are really excited. It's in Montana, close to Yellowstone National Park. We will get to go white water rafting, horseback riding, see Yellowstone National Park, and lots of other cool stuff. We will stay for 10 days and we are flying there too. Then at the end of the summer, me and my brother both get to go to a camp that the hospital runs where I had my transplant. I am very glad about that camp because Shane will get to go too, and I think he deserves to get to go, because, hey, he saved my life! Well, that's about all for now because I am really tired of talking about all this. I'll try to add more later and I'm working on some cool links to other neat stuff for kids with cancer. Also I will have a link to the American Girl Magazine, because they wrote a story about me and my brother. I collect American Girl stuff. Well, gotta go. See ya soon. Please stop by and sign my guest book, and thanks for taking the time to read my story.
A safe, cool place for sick kids
Kim's Marrow Links: A great page, shows need for bone marrow donors
Candlelighters Childhood Cancer Foundation: A great resource for parents of kids with cancer
Children's Organ Transplant Association: Good resource for financial help for transplant patients
Art Flatau's Leukemia Page:One of the best educational resources for leukemia
BMT-Talk Page: BMT-Talk is a support group on-line for BMT patients/families
Blood & Marrow Transplant Newsletter: The best newsletter about BMT issues
The Virtual Dolphin Project: A project worth reading about - see for yourself!
Miracle Kids: A site dedicated to kids with cancer...from the heart.
Make-A-Wish: Explains what the organization is all about...kids.
Pleasant Company/American Girls: Site about American Girl dolls and other cool stuff.
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