Matthew's Story

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WAITING FOR A LIVER

NOVEMBER 1996 TO MARCH 1997

The List

Because of his excellent general health and the blessing that the cancer had still not metastasized, it was determined that Matthew was a candidate for a transplant. His name went on the list in November as a "Status 3" candidate. Status 1 and Status 2 candidates are defined as having a life expectancy of only a few days without a transplant. This meant that Matthew would not be considered as a recipient unless there were no compatible matches in the top two groups. His chemo treatments would continue in order to control the cancer.

In the meantime, Matthew became more and more informed and interested in heavy construction. Until the construction boss put a stop to it because of insurance concerns, the workers even let Matthew get into the machines. One time, he helped them lay bricks in a deep drainage hole. He knew the workers by name and they gave him caps and hard hats. Matthew’s construction book and video collection has grown to include everything available on the market. I have construction programs on the computer that he plays at our house. My nephew Keith receives equipment catalogs every month because he’s on the township board so Debby sends the catalogs to Matthew every month. They are often his choice for his bedtime stories. Do you know how hard it is to read backhoe, skid loader, and bulldozer descriptions for half an hour every night?

Matthew also has other interests. One of the big attractions on his visits to Stromsburg is his good friend, Leighton, who lives next door to Grandma and Grandpa. Most of the time, the two boys play nicely together but they have also had a few hair-raising and aggravating exploits. One day, they came into the house and asked for a ladder and a rope. I don’t know what they had in mind but Lynn said, "Next thing they’ll want is a knife and some poison." Playing with toads was a favorite activity until Grandpa had to rescue a toad from the roof and he put an end to that. They continue to collect bugs and spiders, not really Grandma’s favorite things but I supply the jars.

 

Trains

I’m not sure when Matthew’s fascination with trains began. I guess like most kids he has always liked them and he had several children’s trains but his absorption really became increasingly evident from about the age of four. Dave bought him an electric train and Grandpa mounted it on an elaborate board. In his wildest dreams, Matthew plans a huge railroad layout, all over the house and outside. We tell him, when he finishes school, he can go to San Diego and live with Uncle Steve and they can dedicate their whole house and lawn to railroading.

On travels to and from Stromsburg or Omaha, Lynn also began to cater to his interest by choosing routes that follow railway lines. A friend scheduled a visit to the Burlington- Northern freight yard a few months before his cancer recurred and so Matthew met a whole new group of friends. The railroad workers were amazed at his knowledge of engines and cars. There were subsequent visits when they lavished Matthew with railroad paraphernalia. Eventually, Matthew became a member of the Railroad Diesel Mechanics Union.

My sister’s family has joined us two times on the Fremont-Hooper train ride.

My cousin, who lives in St. Paul, Minnesota, told her friends about Matthew and about his interest in trains. One of her friends encouraged his fellow church members to include Matthew in their prayers. A few months passed and they wanted to do or give Matthew something else and Lynn suggested that they make a scrapbook of train pictures for him since he already had so many toys. Soon a box arrived full of old train magazines, catalogs, and other miscellaneous items, in addition to a beautiful scrapbook. Matthew was thrilled and he often shares these items with his friends.

My childhood church in Tekamah rarely let a week go by without mentioning Matthew in the bulletin or prayer. Many other individuals and church congregations have prayed for Matthew throughout these difficult years. It is a great comfort to know that they continue to do so.

Although I have shed many tears over Matthew, he has made me laugh much more than cry. I don’t know where Matthew got his tremendous joy of life and his sense of humor. Maybe from his Grandpa or his Aunt Elaine or just from a subconscious desire to make the most of each day. Soon after he was four, Grandpa taped some "Mr. Bean" programs and before long, Matthew was introducing all the hospital personnel to "Mr. Bean." He can also do a great imitation of some of Mr. Bean’s ridiculous antics.

And so Matthew’s days were filled with fun and pleasure, along with the cycles of chemotherapy, the shots, blood draws, and other tedious interruptions. We waited. Did I say that I had learned to live each day as it presented itself? Well, maybe I forgot that lesson for awhile because I began to get very impatient. Thanksgiving came and went, Christmas too, and I became obsessed that a liver would come available in January. No? Then maybe in February. Matthew needed this transplant soon, I figured, so he could be all well and perfect by fall when he was due to start kindergarten. No? But I "knew" Matthew should get a new liver soon, before his treatments made him so sick that a transplant would be more difficult.

Matthew's 5th birthday, December 28, 1996

In March, Matthew’s alphafeta protein count went way up. Alphafeta protein was the marker in Matthew’s blood that had been a reliable indicator of the status of Matthew’s cancer from the very beginning. Now the doctors confirmed what we had been worrying about; the various chemotherapy treatments were no longer controlling the growth. After several days of consulting with specialists around the country, the doctors decided to do a chemo-embolization. The procedure was performed March 16th at the Med Center. A tube was inserted into a vessel in Matthew’s upper leg, threaded into the tumor and chemical was squirted directly into the tumor. After a few days, Matthew was dismissed from the hospital. This was one of the few times that Matthew complained of pain and the pain continued for several days even with strong pain medicine. We dreaded the prospect of the projected plan of three more of the same procedure, interspersed with regular chemotherapy. We steeled ourselves for the next several months.

Later in March, we spent the Easter weekend in Tekamah with my sister and her family. On their farm, Matthew enjoyed seeing the pigs and fishing in the dam. Everyone took turns playing with Matthew with my nephew’s old dirt toys.

We waited. I began to accept that a transplant would happen when the time was right.

 

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