Diagnosis 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.

Hepatoblastoma

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.

The weekend

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.

Enlarged Liver

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.

1993 - The First Year

Liver Cancer

Hospital Stays and Coping

Infusa-Port and Chemo

Monday morning, the tests began at Bryan Memorial Hospital in Lincoln and by Monday afternoon, Matthew was admitted to Children’s Hospital in Omaha.

He had many doctors but the main ones were oncologists and surgeons. The bad news was that he had liver cancer but the good news was that it was hepatoblastoma, which is often curable. The

Monday morning, the tests began at Bryan Memorial Hospital in Lincoln and by Monday afternoon, Matthew was admitted to Children’s Hospital in Omaha.

He had many doctors but the main ones were oncologists and surgeons. The bad news was that he had liver cancer but the good news was that it was hepatoblastoma, which is often curable. The doctors told us they would shrink the tumor as much as possible with chemotherapy and then attempt surgery, following with additional chemotherapy.

Repeated tests showed that Matthew’s cancer had not spread beyond the liver. The prognosis of a successful surgery was hopeful, Any mention of a liver transplant was, at that time and to our relief, passed off as a last resort. Little did we realize that, four years later, we would be praying for a liver donor.

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Infusa-Port and Chemo

Hospital Stays and Coping

Infusa-Port and Chemo

We had a lot to learn. From day one, Lynn has kept a medical record. Two spiral notebooks include a day-by-day account of hospitalizations, tests, medications, reactions, questions and answers for doctors, and charts of blood test results for four years. Many times her records have helped her to help the doctors and technicians to treat M

Matthew became something of a medical expert also. He could tell the nurses which access to use for IV’s, which arm for blood pressure, and how much tape they need for dressings. No, he’s not going to be a doctor. Like all five year olds, he plans to be a construction equipment operator and/or a train engineer.

So, in the summer of 1993, Matthew had a series of intra-venous chemotherapy treatments. To facilitate these and avoid having to find a new vein each time, a minor surgery was performed and an Infusa-Port was inserted in his chest.

He would have the Port for about a year. The treatments necessitated overnight stays, usually two days, sometimes longer.

The family soon learned the best ways to cope. Although Matthew always preferred Mommy, and second down the line was Daddy, Grandma Goering and I sometimes took turns staying in the hospital overnight. Matthew’s "Teddy", however was always with him. "Teddy" gave him comfort and sometimes even had a shot or blood pressure when Matthew did.

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Hospital Stays and Coping

A stay in the hospital was like moving day. We always took his favorite construction toys and trains. For lack of dirt, we used everything for "construction" from macaroni to popcorn. At first, his favorite videos were all the "Barney" tapes but we were glad when he began to prefer "Thomas the Train Engine." We soon tired of the same old

Another thing he really enjoyed was balloons. People gave him so many balloons they filled up his covered crib. He had lots of fun kicking them and punching them around and really liked it when we played with them too. Grandma Goering was especially inventive at helping Matthew find interesting things to see out of the hospital window. Many of our wonderful friends came for visits and he always liked to see them and show them all of his wonderful toys.

Everyone was Matthew’s friend and we were glad he never developed a fear of the white-coated technicians and doctors. In fact, he always hugged and kissed them or gave them a "high 5" when we were checking out. Lynn said, "Matthew’s illness has made us share him with other people."

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More Long Hospital Days

Broken Arm

Liver Resection

In August, Matthew broke his arm. We never knew exactly how it happened but we figure the chemo treatments weakened the bones enough that it didn’t take much of a bump to cause a fracture. The cast was fairly loose and one night after they put him to bed, he took it off. After he got a new cast, this put an end to putting him to bed and a

The treatments made Matthew sick sometimes but he always bounced back. His old energy began to return and he could out-play any two-year old. Because the treatments zapped his white count, we all had to learn to wash our hands every time we turned around. Lynn and Dave also kept him away from large crowds of people.

One of Matthew’s favorite activities was watching construction work. Luckily, the school house across the street was undergoing additions and remodeling. He became friends with the work crews. He was especially enthralled with the crane. The crane operator called him "Buddy" and Matthew reciprocated. Thereafter, every crane operator was "Buddy" to Matthew, in more ways than one.

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Liver Resection

By September, Matthew’s tumor was sufficiently smaller and he had surgery. This was performed at the University of Nebraska Medical Center by members of the well-known liver transplant team. We felt fortunate and confident that they were the best surgeons. After all, Robert Redford’s son had chosen them for his two liver transplants!

Grand

Grandma Goering, my sister Elaine, her husband Delm, Bob, and I sat with Lynn and Dave during the long operation. Our friends, Bobbi, Mick, and Jeff, also helped us keep vigil. Many hours later, when surgery was completed, we conferred with Dr. Langnas and Dr. Raynor. They said that they had been able to remove all of the visible tumor. In doing so, they removed three-fourths of his liver but they assured us the liver would regenerate itself in just a few weeks. But, "Matthew has cancer. This is very serious," Dr. Langnas warned.

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More Chemo

Liver Resection

More Chemo

We hated the Med Center. Not that the nurses and other personnel weren’t wonderful; it was just so big and it was a miserable time. When I first saw Matthew in the pediatric intensive care unit, there were tubes sticking out of him every conceivable place. The unit was very crowded and he was scared and uncomfortable. It was much better w

In seven days he was home and on the go again, showing everyone his side-to-side incision. As we left the hospital, Lynn was carrying him and crying. Matthew asked her why and she said, "I’m just so happy to be going home." As the years went by and Matthew began talking more, one of his favorite sayings was, "Home is the best place to be."

Two more chemotherapy treatments followed and by Thanksgiving, we didn’t need to search long to know what we were thankful for. Although he had to have periodic CT scans and regular blood tests, it looked like Matthew had gone into remission. In the spring of 1994, his Infusa-Port was removed. It was a relief to be rid of that bump!

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1994 - 1995 Remission

Recovery & Remission

Living With Uncertainty

Recovery & Remission

1994 and 1995 were wonderful years. Dave took Matthew swimming and everyone helped him watch and play construction, farming, and whatever else captured his fancy. His favorite neighbors were the Kildare family and Ellen and Pete Pinkerton.

Matthew was fun to play with but he also began to show his three and four-year-old willfulness. Let’s face it -- sometimes he was naughty. One day we were all gathered around the dinner table at our house. One thing led to another until Lynn put him on a "time-out" chair in the other room. We proceeded with the meal, trying to ignore his periodic screams. After some time, when Matthew didn’t receive any reaction from us, he proclaimed, "I’m picking my nose!" He thought that would surely bring immediate attention but, when it didn’t, he repeated his announcement several times, even adding that he was eating his boogers. I’m sure that Matthew thought we’d never ignore such an admission! Little did he know, we were all almost bursting with suppressed laughter.

One Day At A Time

Living With Uncertainty

Recovery & Remission

I don’t know if Matthew learned his lesson that day or not. I do know that I had learned a lot. One of my hardest lessons was the old adage, "Take one day at a time." For someone like me, that was a big turn-around but I began to take hold of each good day, to savor it, and leave tomorrow where it belongs, to tomorrow.

Another thing I learned was to accept God’s care and wisdom. My prayers have become, "Please hold us all in your loving arms." I know that no matter how much I love Lynn, Matthew, and Dave, God’s love is greater and wiser.

Living With Uncertainty

Except for a few scares when blood tests showed some unusual liver activity, Matthew was in remission for two years. When x-rays failed to show any new tumors, those unusual blood counts were discounted as results of growth spurts, a cold, or other infection.

And yet, we all wanted some assurances from the doctors. Was Matthew cured? All they could say was that, statistically speaking, if there was no recurrence in three years, they would define a cure. Immediately, we were looking forward to his fifth birthday, December 28, 1996, three years away. It didn’t work out that way.