My son’s tumors

This morning I have to take my boy to the doctor for a physical. This is a requirement for high school athletic teams.

We have a long history of doctor visits, this boy and I.

I’m a little nervous telling this story. The experience was tedious and stressful. The story may be so too. I’ll do my best.

When my baby was 2 he had a CAT scan because he had bulges on his temples. We were told it was nothing to worry about.

When he was 5 one side grew noticably bigger than the other. We had moved from Colorado to California, and I was pushing the doctor.

“If it makes you feel better, we’ll order an MRI.” The doctor seemed certain it was just a case of children’s growing disproportionately.

My son was afraid of the MRI. Weeks went by waiting for appointments. Then we would come home without having had the imaging. He wouldn’t get on the machine. Sedation didn’t work on him. I was falling apart.

On the third try we went to UCLA Medical Center. A nurse named Julie Lopez put him in a swivel chair and kicked it into a spin, talking casually to him about little boy things. She took away his fear. She was magic.

After an agonizing 10 days the results came in. Our doctor asked me to come in. I begged him to tell me on the phone.

I was alone in my hallway when I heard, “Your son has at least three tumors in his head. Two of them are outside of his skull. The others are intracranial.”

I’m ashamed to admit I felt a little relief. They had identified the cause of the deformity. They could fix it now.

Children at school were being cruel to him. He seemed strong enough to handle it, but I wasn’t.

This was early December, a couple of weeks before his 6th birthday. We didn’t know how to tell him. We took him and his friends to Disneyland as a salve to all our emotions.

This was followed by months of “We’ll know what’s wrong with him after….” There was an x-ray and another CAT scan before the doctor threw his hands up and said he needed a biopsy. “That will be the definitive diagnosis tool,” he said.

The insurance company said no biopsy. We fought. It was long and painful. We won, and we got to go to UCLA, where the magic people work.

My son’s biopsy was on a Monday in July. It was supposed to be two hours. It was six. There were extra layers of inpenetrable stuff on his skull the surgeon couldn’t drill through.

The tumors were drawing the bone into them in spicules.

We would have a diagnosis by Wednesday.

On Friday morning the surgeon told me they still didn’t know what my son has. The biopsy wasn’t revealing. Doctors in Europe were being consulted. No one has seen anything like this.

On Saturday morning my grandfather had a heart attack and died.

At some point the doctors gave up and named the condition after my son. The good news is that the tumors were benign. The bad news is that they couldn’t tell me what would happen.

In a year they would remove the extracranial ones, but they didn’t think they could get inside my son’s skull to get at the others. At least he would look normal.

I have to live with knowing that for a moment in that hallway I felt relief.

link to photos

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10 Responses to “My son’s tumors”

  1. gunky Says:

    good job in the telling.
    how is he now? 10 years later . . .
    do you know my stepmom’s name is julie lopez?

  2. T. Says:

    We deal with it constantly. The tumors are now in his left ear canal and his soft palate.
    Everytime his grades or behavior fluctuate, we wonder if the tumors are growing.
    He was supposed to have surgery on his ear but when he grew last summer the doctor said a little bit of sound was getting through, so he wanted to wait.
    He just an MRI last month, which showed one large tumor is denting the brain considerably. He has an enlarged pituitary gland. We’re waiting to find out what effect this has.
    There’s a lot of waiting. We’re waiting for UCLA to send his previous MRIs to his local doctor for comparison. We’re waiting for answers to the 17 questions we had about his most recent MRI report.
    He is otherwise healthy and normal — smart, loving, athletic and musical.
    Thanks for asking.

  3. The custody story « Stories O’ Mine Says:

    […] of luck, she was my son’s teacher when he went through his second surgery, the one to remove the tumors. It eased my mind that she was who I was turning him over to during this emotional […]

  4. My grampa’s death « Stories O’ Mine Says:

    […] three months after we discovered the tumors in my son’s head, my grampa was diagnosed with terminal lung […]

  5. The horse riding story « Stories O' Mine Says:

    […] particularly fun: Her boys are the same ages as my kids, and her oldest boy has dealt with tumors in his head, too. This makes me wonder if we were exposed to something together during our teens. The other two […]

  6. The diner story « Stories O' Mine Says:

    […] center for hearing tests — he has to have his hearing monitored; there are issues because of the tumors. The tests were taking a long time and we were […]

  7. Disneyland « Stories O' Mine Says:

    […] 1999 we took all my son’s friends to the park to celebrate his 7th birthday. My daughter had turned 5 the week before, and was a wee 3 feet, 3.75 […]

  8. The story story « Stories O' Mine Says:

    […] of luck, she was my son’s teacher when he went through his second surgery, the one to remove the tumors. It eased my mind that she was who I was turning him over to during this emotional […]

  9. My son’s second surgery « Stories O' Mine Says:

    […] Anyway this calls to mind my son’s second surgery, which I had meant to tell you about way back when I told you about his tumors. […]

  10. My grampa’s death « Stories O' Mine Says:

    […] three months after we discovered the tumors in my son’s head, my grampa was diagnosed with terminal lung […]

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