Hussein's Story

My Story of Surviving Fanconia Anemia

I had a BMT last year. I didn't want to do it, but I had no choice in the matter. The reason I didn't want to do it is because it sounded scary. BMT means Bone Marrow Transplant.

I needed a BMT because my cells were getting weaker. As they get weaker, we get weaker. Good for me it wasn't too late! We had to take some of my cells and some from Mom, Dad and my brother Ali. They went through the laboratory to see which ones matched mine. Mom's bone marrow matched with my bone marrow. Because Dad and I like to do things together, I really wanted Dad to be my donor, but my wish didn't come true. I was happy that someone in my family matched. If there wasn't a donor, I would get weaker and weaker. Once we knew who the donor was, we went home and packed our suitcases. I packed all my favorite things while Mom packed our clothes and pajamas. We had to be at the hospital at 6:00 in the morning.

First we went up to our room to drop off our suitcases. Mom and I were in the same room. We had to go to the operating room to get the tube put in my chest to connect my IV. I woke up upstairs in my room! Next, Mom had to go to the operating room for the doctors to get the bone marrow from her back. Mom got to wake up in the operating room. Mom was dizzy and tired after her operation. The bone marrow gets put into an IV to be given to me. It doesn't hurt at all! It didn't make me sick, dizzy or tired.

I got to bring my favorite things--like a coloring book, a microphone and much more--to the hospital with me when I had the BMT. I had fun. What I did was color, play, watch the game shows on TV, and tell jokes.

Every Thursday morning after breakfast all the kids could play bingo on the TV. We got to do this because the hospital did not want us to feel lonely in the mornings. I played bingo every week. While playing bingo you can call in on your phone and tell jokes. One of my favorite jokes is: "Why is a tree and a dog the same? Because they have more bark!" To get a prize you either need to win a bingo or tell a joke. I got lots of prizes.

I had lots of other things to do too. Like painting on the window. One of the pictures Dad and I painted was a garden with trees, flowers, and the sun and clouds in the sky. Another one we did was a park with flowers and trees. We even had butterflies in it.

Mom knew that I didn't like the hospital food, so she decided to bring me food from home. She brought me homemade soup, popcorn and chips. I was excited. I told the doctor, "I'm not eating the hospital food anymore. I'm eating homemade food." He said, "Well, if she brings homemade food, the germs will get in it." I pointed out, "We can re-cook them in the microwave." So, I won.

Either Mom or Dad stayed with me the whole time I was in the hospital. I went into the hospital right after the 4th of July and I didn't get to go home until the fall. Mom stayed during the week and Dad would come and stay with us on the weekends. My brother Ali had to stay with Grandma. He really missed Mom. Sometimes Ali would come to visit me with Dad but he wouldn't wear a mask when he came.

When I finally got to go home in the fall I was so excited! Now that I have had the BMT I am very glad that I did it because without the BMT I would not be able to go to school.

Hussein resides in a suburb of Minneapolis with his mom, dad and his brother, Ali. He attends elementary school and enjoys computers, sports of all kinds, animals and playing with his brother. He will celebrate his 12th birthday November 22. Hussein received a transplant July 12, 2000, for the treatment of Fanconi Anemia. Hussein is a friendly and articulate young man who wanted to share his experience with others "so they won't be afraid."

Alex Thwaites Program Coordinator Care Partners