Tom H.

Diagnosis: AML and ALL leukemia
Treatment: Chemotherapy

I had a really enlarged lymph node on my inner thigh. I thought I might have pulled a muscle.

Lorraine: We went to a local hospital and they transferred him the next day to Mass. General for a bone-marrow biopsy and a spinal. He went into the first hospital Friday, was transferred Saturday and by Tuesday they had started treatments. All this happened during summer vacation. They had trouble diagnosing whether it was AML or ALL. Because of this dilemma they recommended more of the chemo that is specific for AML, which is more serious.

Tom: I wasn't feeling bad.

Lorraine: When we first went to the doctor he had a fever, but it was 100 degrees outside.

Tom: One of the nurses at the first hospital said it might be extra tissue that had fluid in it.

Lorraine: The doctor there told me that the blood looked like he had leukemia.

Tom: I didn't know that at all.

Tom: When they were bringing me upstairs there was a big billboard with all these bald kids and I thought, "Wow, I hope I don't end up like that." I did.

Lorraine: Baldness was his biggest fear because he was afraid he wouldn't look like other kids his age. They were wonderful at Mass. General. As soon as we got there he was assigned primary nurses. They were always with us.

Tom: I wasn't really too scared right then. I had a great view from my window, but by nighttime my leg hurt so much I couldn't walk around. I stayed at Mass. General six weeks. My bone marrow was 99.7 percent full of leukemia.

Lorraine: If we had waited to check out the enlarged node he probably would have died.

Tom: I was like 120 pounds when it all started and I went to 94. Then they had to feed me through a tube in my arm.

Lorraine: They told me they would have done a bone marrow transplant if his brother's or my marrow matched. We were both tested but there was no match. They said they didn't want to take marrow for him from anyone else, not even anyone else in the family. The chemo put him in remission. After seven years with no cancer, they would say he is cured. For now, they say he's in remission.

Tom: My doctor is Dr. Howard Weinstein. He is one of the best cancer doctors in the world.

Lorraine: When they come into your room they talk to the kids, as well as the parents, even little kids.

Tom: When I went back to school - seventh grade - they put me in a special, small class because of my behavioral problems in sixth grade. Because the class was so small, the teacher was able to help me keep up, and I needed help because I missed so much school.

Lorraine: We called him OT and NT, Old Tom and New Tom. He changed dramatically.

Tom: My whole attitude changed. I never really figured out why.

Lorraine: I think it was a humbling thing. It's hard to be a teenager anyway. Now he's more appreciative, kinder. He was really nice to his brother, Georgie. Tom became more open with his feelings.

Tom: I don't really like to talk about my feelings.

Lorraine: He went to the Island of Hope summer camp and when they asked what he didn't like he answered, "Touchy-feely people."

Lorraine: Going back to a small class at school worked out well. He had a tutor too. And he had special permission to wear a hat in school. His teacher explained to the rest of the class what had happened to Thomas. His biggest fear was that he wouldn't fit in. His eyes were sunk in, he had dark circles and you could see his ribs and his bones in his neck.

Tom: I remember how bad the Port-A-Cath stuck out from my chest.

Lorraine: He was going to wear a bandanna or a hat for his school picture but he wore nothing. He wanted to be himself. He had every side-effect from chemotherapy he could have had. He was constipated, he had mouth sores and he had sores inside his chest.

Tom: At the same time every night I would wake up and throw up, then go back to sleep.

Lorraine: It seemed like he had a million blood transfusions.

Tom: I didn't like the platelets too much. They made me itch. One time I had a hard time breathing. I started shaking. I had a high fever.

I didn't really want too many people to know I had cancer. I didn't want them to pity me. I don't really know anybody who ever made fun of me to my face or behind my back. They might have acted a little weird in front of me. I would have acted weird in front of someone with cancer too. They got more relaxed when I told them some of what I had gone through.

Lorraine: I got laid off from work just before he was diagnosed. We had a year from hell.

Tom: At the same time my aunt died in a car accident and she was five months pregnant.

Lorraine: That was the same day I got laid off. We have a lot of family.

Tom: Everybody lives here, right down the road.

Lorraine: My mother stayed with him in the hospital Saturday nights so I could have a break. I had Georgie to take care of too. Sometimes Georgie would stay overnight in the hospital with Thomas. Sometimes his aunts would stay with him in the hospital to keep Tom company.

Tom: I wasn't really too worried about dying. It's not a big concern. I've already been to hell.

Lorraine: He had shingles, a blood clot in his leg and he had respiratory problems.

Tom: In the winter, I have exercise-induced asthma from treatment.

Lorraine: They have to watch his heart.

Tom: One of my friend's dad ran for me in the Boston Marathon. The most fun I had while I had cancer was the benefit dance friends gave to help us pay bills. I made $400 in the 50/50 raffle.

Lorraine: He wants to do an internship at the Island of Hope camp next summer.

Tom: I would get paid for that.

Lorraine: He also went to the Hole in the Wall Camp and Georgie went too. They had a week just for siblings.

Tom: I'm going to North Shore Vocational School in Middleton. The summer went by too fast.

Lorraine: This has been real hard. It still is. Every time he gets a sniffle or pain I worry.

Tom: I don't worry.

Lorraine: He did at first. Now he's pretty good.

Tom: If the cancer came back I wouldn't go through treatment again.

Lorraine: You say that but you don't know.

Tom: I don't want to go through that again. I couldn't do it again. The second time would be worse. I pray. But I don't really pray to get better. I pray about money. That doesn't work though.