Matthew's Story

Liver Cancer
Chemotherapy, surgery
Cancer Recurrence
Waiting For A Liver


JUNE 1993

  "I’m brave, but sometimes I’m mean."

I was startled when my grandson made that pronouncement. Matthew was breaking what was, for him, a prolonged silence. He and I had abandoned the rest of the family in his sixth floor hospital room and now we were going up and down the escalators.

It had only been a week since Matthew got his new liver, and he had, not very politely, rejected everyone else and chosen me for a long-awaited escape from the sixth floor routine at the University of Nebraska Medical Center in Omaha. As we left the room, I had gently chided, "Matthew, you don’t have to tell them to shut up. They all love you and that makes them feel bad."

So there we were, a five and a half year old boy and his sixty year old grandma, using the escalator as our improvised playground. I was beginning to wonder how long it would be before I could persuade him to return to his room for more tests and medication. Matthew had been unusually quiet for a few minutes and when he made that statement, I realized that he, too, had been wondering about something. His thoughts, however, were more complex than Grandma’s immediate concerns. He was formulating an understanding of his very own actions and feelings.

What goes through the mind of a child who can’t possibly know the seriousness of his condition? Was he remembering how everyone had told him countless times how brave he was? Had he noticed the hurt looks he could produce on our faces when he finally rebelled at the countless blood draws, vital signs, painful dressing changes?

I think Matthew comprehended that day that we had all been truthful when we praised his courage. But, more important, he asserted that he reserved the right to be his own man. My heart soared when I realized Matthew had not lost his spirit. He had endured four years of having to submit to surgeries, chemotherapy, CT scans, MRI’s, IV’s, blood transfusions, ultra sounds, hours of waiting for all of the above, usually without food or drink, hundreds of strangers punching and probing. After all of this, Matthew gave himself permission to be "mean" sometimes. I wanted to salute and give him a medal.

Yes, it had been four years since we found out that Matthew was going to have to be a very brave little boy. We didn’t know at that time that he would have to be a very brave big boy. In fact, when he was eighteen months old and diagnosed with liver cancer, we thought he would either be cured or dead by his second birthday. The first miracle was that he did survive from June to December of 1993 but we didn’t realize that those six months were just a dress rehearsal. It is a second miracle that we didn’t know what lay ahead for Matthew and his parents.

It all started in June of 1993, when I took Matthew to his pediatrician. It was Saturday morning, the middle of a weekend that I was baby-sitting at Mathew’s Lincoln, Nebraska, home while his parents, my daughter Lynn and husband Dave, attended a wedding in Chicago. They had left on Friday and planned to return Sunday afternoon.

Friday afternoon, I began to notice that Matthew was quite lethargic and maybe he was rubbing his ear a little bit. Grandmas worry and, by Saturday morning, I began to worry about doctors’ offices being closed for the weekend and so I called the doctor and was informed that they would fit him in if I brought him immediately.

In retrospect, I believe I really wanted to get a doctor’s opinion about Matthew’s belly. When I saw Matthew that weekend for the first time in several weeks, I became somewhat concerned about the size of his belly. Earlier that spring Lynn and I had discussed it and how some clothes didn’t fit him very well, assuming is was "baby fat." But it now didn’t look like baby fat to me. As the doctor examined Matthew, I asked, "Is that normal?" I expected him to say it was normal or, at worst, perhaps a hernia. He replied, "No. His liver is enlarged."

I had to sit down. I was weak and dazed but I managed to ask him what would cause that. He mentioned about three things but all I heard was, "possibly cancer." The doctor then told me he would arrange for several tests to be done as soon as possible Monday morning. I told him to do what was necessary and his parents would check with him when they returned the following day.

As Matthew and I were leaving, it must have been obvious that I was quite shaken because the doctor and nurse expressed their concern if I was all right and would I be able to drive. I assured them that I could handle it and Matthew and I went home.

If Matthew had been his usual exuberant self that weekend, I would have had a difficult time keeping up with him. But he continued to be listless and he was content to have me push him in the stroller. Around and around the neighborhood, I pushed the stroller, allowing the tears to run down my cheeks whenever Matthew wasn’t looking at me or when he dozed. During his nap time, I called neighbors, I called Grandpa Bob at our home in Stromsburg, I called friends. All of the neighbors were gone for the weekend, friends were busy back in Stromsburg for the Swedish Festival, and I was at first unable to get Bob on the phone.

After more stroller pushing, it was finally Matthew’s bedtime. Bob returned my calls and I told him I needed him to come to Lincoln before I went completely crazy. He came and spent the night and Sunday finally arrived and with it came the hardest thing I ever had to do. I had to tell Lynn and Dave.

I’ll never forget the look on Lynn’s face when I told her, "Something’s wrong with Matthew’s liver." Lynn studied nursing for a while before deciding on a career as a dietitian, so she immediately grasped the significance. It broke my heart to place such a burden on my daughter’s shoulders, but I consoled myself that Matthew had the best parents in the world to deal with this. In the ensuing years they have never failed to live up to my expectations. My role from that moment to this has been to support them as much as I could.


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