Matthew's Story

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 CHEMOTHERAPY AND SURGERY

JUNE TO DECEMBER 1993

Treatments

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, however, was questionable, as the tumor involved major vessels at the entrance to the liver. We had to rely on chemotherapy to kill the cancer. 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.

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 Matthew in the best possible way. The doctors soon came to respect her opinion and rely on her information.

Matthew has become something of a medical expert also. He can 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.

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 songs and stories. 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."

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 allowing him to go to sleep by himself.

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.

 

Surgery

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!

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.

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 when he got into a room on sixth floor and one by one the tubes were removed. 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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