Michael S.

Diagnosis: PNET, primitive neuroectodermal brain tumor, April 1, 1998
Treatment: Surgery, chemotherapy, stem cell transplant

Jodi Sampson, Michael’s mother: During the month of March we all had a stomach virus. Michael was vomiting. Everybody but Michael got better. After two weeks of being sick, I knew something was terribly wrong. I remember saying to my sister, who’s a nurse, “What if he has a brain tumor?” Somehow, as a mother you just know these things.

We saw a pediatric gastroenterologist. Michael had lost five pounds. He said we should go to Mass. General. It was a Wednesday. He said, “Let’s get this cleared up before he’s lost too much weight.” I thought, “Thank goodness.”

We ended up in the emergency room at Mass. General April 1. His blood tests were all normal. But they had an order to admit him. I said I wanted a head scan done. I had the instinct to ask for it. At 3 p.m. they sent us to the CT-scan room and they were about to put him in but they had an emergency so we had to wait. I thought, “Thank God.” I was by myself. My husband, Mark, was traveling. So Michael had the scan later and my sister and husband were there with me. They said he had a brain tumor. It was devastating.

They removed it in surgery on a Monday, but it had spread to inoperable parts of his brain. And then he started chemotherapy. We sat down with the oncologist who said that aggressive chemotherapy doesn’t really work well. Radiation wasn’t an option; he’s too young. They’d have to radiate his whole brain and he wouldn’t recover. For someone under 3, it’s not a good idea. We didn’t feel radiation was an option.

So Michael had two rounds of oral chemotherapy. He was in the hospital for that. Then he had an MRI and nothing had changed. They really wanted to do radiation. We said no.

Then we opted for a higher-dose chemo. His bone marrow was taken out, frozen, and he was given chemotherapy through a central line and then he had his own frozen stem cells put back into his body. And then we waited for his white counts to come back up. Michael was behind double doors. We could go in with gowns and masks.

One week into the high-dose chemo he started seizures. He seized for one hour. They gave him anti-seizure medicine but it did not stop the seizures. I just held his hand and looked at him and said, “Don’t worry, Michael. God is going to get us through this.” God was working a miracle in Michael and me. Michael must have had some fluid on his brain. They had to put a tube in his head. They couldn’t operate to put a shunt in his head because his white counts were too low. So they just put a tube in his head and the fluid came out. He was in intensive care and his little hands were handcuffed to the bed and he was on morphine.

He had sores in his mouth and down his esophagus and he wasn’t talking, he wasn’t following us with his eyes. He wasn’t responding. But we couldn’t take him off the morphine. Finally, a little more than a week into it, his white count came up and he had surgery to put the shunt in and he was taken back up to his regular floor. He was then responsive, off the morphine. Our Michael was back. He was in the hospital for a month. His muscle tone was so bad he couldn’t even sit up.

In July we brought him home. We had to carry him around. He couldn’t stand or walk, yet he wanted to run around and follow his two sisters. Some brain damage affects his balance. The doctors weren’t sure what it meant for Michael.

We weren’t going to do any more high-dose chemotherapy, so the question was, what do we do now? We went to another drug, Irinotecan, which is given through a catheter. A month later he had to have a second shunt because there was more fluid on his brain. In March of 1999, he had a third shunt put into another part of his brain to drain more fluid. He lost his hair. He lost his eyebrows and he didn’t look as cute as his sisters wanted him to.

Today Michael is still on Irinotecan and his counts are like a normal child’s, which is remarkable. I mean, it’s incredible. So now he’s been on this medication a little more than a year and even the doctors are amazed. The tumor hasn’t grown and it hasn’t shrunk, so it’s just like it was at diagnosis. They consider him stable. He’s growing; he’s gaining weight. He goes to school two days a week. He has occupational therapy. He goes to the gym once a week and he gets physical therapy.

Our doctor, Dave Ebb, said he never thought Michael would be here a year later. He says with a disease as extensive as Michael’s, he’s thriving, he’s doing remarkably well. But they say the prognosis for Michael’s survival is not good. They don’t have the hope that I do. I’ve always had faith in God. I’ve always prayed. When Michael got sick I started reading the Bible. I would give myself something to think in my head when Michael was listless. I would read the Bible and meditate on that instead of my fears.

We’ll get through it all. I don’t know how, I don’t know when. Everything we’ve gone through as a family is making us strong. Once a month we go to healing services at the Mission Church in Roxbury. Our daughters, Jordan, 9, and Kaitlin, 7, are doing pretty well. There are so many people today with cancer. The girls ask God to take away their fears.

Michael is going to survive. I have a lot of faith in God. When Michael got sick I had this vision of Michael walking down the halls in school with his little backpack. About a month ago, he was walking down the hall in school and he turned and smiled at me and I said, “That’s the picture.” I used to have to walk cheek-to-cheek with him. So he has come a long way.

He has a balance problem. For example, he can’t climb up on a chair. When he would do something new, I’d say, “Girls, look at what Michael can do.” Now they say, “Mommy, Mommy, Michael is doing this.” My husband doesn’t have the strong faith that I do. I used to work. Now my husband has the whole financial burden and he’s doing OK with it.

In the beginning of his illness, Michael was very dependent on me. I couldn’t be out of the room. I couldn’t put him down. I ate supper with him on my lap. I had to sit and watch TV with him. I had dishes and laundry to do, but I had to sit with Michael. I was watching “Here Comes A Truck!” My mother and mother-in-law would come and stay so I could be with Michael and they would cook and clean. Now I am in heaven when I see him running around and being in another room from me. Slowly he’s starting to feel better. He really has done remarkably. I am now able to leave him for a couple of hours. We’ve come a long way.

I don’t think he understands much. He knows he goes to the hospital. He knows his doctor. Thank God it’s not my 9-year-old. She hears people die of cancer. He doesn’t know. I think he doesn’t understand he has limitations, although he sees other kids climbing and he might not be able to keep up.

I spoil him. My husband and I don’t say no. In the middle of the night, if he comes to our bed, he’s allowed in. My girls were never allowed. He’s gone through so much. The doctors come at him and I have to let it happen, so I don’t want to aggravate him more.

When I saw the Wall of Hope at Mass. General, I said, “I’ve got a story to tell. There’s so much hope in it.” I want to take this tragedy of Michael’s and make it awesome, make it something great.