Linda Donnelly Gontko called Fred Hutchinson Cancer Research Center in March with a special request. She was visiting Seattle and wondered if we could help her find a bench that had been donated in gratitude for her late son’s treatment here in 1983. Yes, we could, and did.
Diagnosed with leukemia shortly before his 18th birthday, Gontko’s son, Chip, received a bone marrow transplant in the early, harrowing days of transplantation. Fred Hutch had then been located in Seattle’s First Hill neighborhood, and that’s where the original bench was installed. When the Hutch moved to its South Lake Union campus, a new bench was placed in Mundie Courtyard. The wording on the plaque – written by Chip – is the same.
Seeing the bench was “grand” Gontko said, as she was touring Fred Hutch and its treatment arm, Seattle Cancer Care Alliance. Afterwards, in a phone conversation filled with laughter and tears, she shared her story.
When Chip was growing up we lived in Saginaw, Michigan. That’s where he went to school and graduated, and where he died. Now we live on Lake Huron in the summer, at Point Lookout. He would have loved the lake house!
I was a financial advisor at Northwestern Mutual for almost 50 years. I didn’t work full-time for three or four years when the kids were small. We had three children: Chip, Mark and our daughter Debra.
Chip was my first-born. He was my difficult child. He and I never seemed to see eye to eye. He was rebellious and determined.
On my 40th birthday in December 1982, my husband, Larry, threw a little surprise party in the basement. I had Chip’s senior class picture on the piano. It was taken in August. Our friend Bob, who had moved to Florida and was in town for Christmas, said, “What a handsome looking kid!” Then Chip came downstairs, and Bob says, “Oh my gosh Chip, you don’t look at all like your picture!” It was December 27.
In the third week in January 1983, Chip had been having pain in his legs and back. He did not attend school and I decided to stay home with him. I was dusting the piano, looking over at him on the couch, and that sentence came back to me. “Chip, you don’t look at all like your picture.” And my heart sank to my ankles. I said, “What’s going on? You don’t look like your picture.” He jumped from the couch and showed me his belt still fit him. But he really did look pale and weak, and I was concerned.
My brother Denny died of leukemia when I was 7 years old. He was 12 when he was diagnosed. He lived three months. He was my mother’s first son, her mother’s first grandchild. I am the oldest daughter of 13.
My husband was already going to the doctor. And so having lived through this with Denny, I said, “Take Chip with you. Have Doc run a blood test.” Then I got a phone call at my office the next day, and they said, “We want to run another blood test.” That really concerned me and it was a long weekend. By the time Monday came around, they called and said, “It is acute myeloid leukemia.”
That was the beginning.
I had to go over and tell my mother. It was the hardest thing I’ve ever had to do in my life. She was coming home from morning Mass. She said, “You’ve got bad news, don’t you?” And I said, “Yes, we’ve got really bad news. It’s leukemia.”
And she said, “Well, guess what? There are a whole lot of things they can do now. I’ve been following it since Denny died in 1950. They have this thing called bone marrow transplant out in Seattle. We need to get him out there!” She was always optimistic.
I’ve got her gumption in me, thank God. And my husband is like a dog with a rag in his mouth when he has to do something. He called Fred Hutch every single day until we got Chip in.
We had to get him in remission, before we could take him to Seattle. We started treating him in February. He had his 18th birthday in April. He graduated. He was bald – it was the only time I made him wear his wig. He wasn’t very happy about that.
He and I went to Florida around Easter vacation. I wish we would have taken the whole family. I thought we didn’t have the money. I didn’t know what was coming around the bend.
But we had a great time, just the two of us. Here was this son of mine, who was not my best friend – and he turned out to be my best friend. It was another beginning.
It was July when we flew out to Seattle. Our son Mark, who was then 16, turned out to be the perfect donor. We stayed in this tiny little run-down motel. We walked in the door and the phone rang: Larry’s dad had passed away.
Larry spent that first day with us, then left to go to the funeral. Chip and Mark and I stayed. That night, Chip went out of remission and was in terrible pain. He went by ambulance to the hospital.
The doctors at the Hutch were dressed in jeans and shirts, not like the hospitals in Michigan, and Chip liked that. Dr. [Robert] Hickman [a founding member of the Hutch transplant team] put the Hickman catheter in him right away. Chip said, “Mom, you have to leave the room.” But Dr. Hickman said, “Chip, she’ll handle it just fine.”
They had to get him back in remission. They started the treatment.
The hardest part was when the elevator door opened, you saw this long hallway. If there was a nurse sitting in a chair out in front of the room, that person wasn’t going to make it. And it happened a lot. An awful lot. So every morning, when you went up that elevator and waited for that door to open, you would pray that you wouldn’t see any chairs. Because you knew everybody in every room.
One of the amazing things was the “family” we became at the Hutch. They were all ages and from all parts of the world. The first family we met was from New Jersey; we still keep in touch. We had a doctor from Afghanistan, and other patients from New York, Alaska, Wisconsin, Florida, Texas, Illinois and three from Michigan. There was a kitchen where we could sit, visit, dine and catch up.
I stayed the whole time— seven months. First it was hospital, hospital, hospital. Then they sent us back to our apartment. Everybody in treatment had IVAC machines [intravenous accurate control devices, or chemotherapy pumps]. The alarms would frequently go beep, beep, beep. The hospital told everybody, “Call room 221 if you have any trouble – she can fix those machines.” So I’d get a phone call in the middle of the night because somebody’s machine was beeping. And Chip would say, “Mom, do you have to help everybody?” And I said, “Yes, I do.”
Chip’s goal was to be home for Christmas. He made me promise if the leukemia came back, he wouldn’t have to undergo a transplant again. I promised.
We flew back to Saginaw in November, Chip and I. You weren’t supposed to have any crowds of people around – germs, germs, germs – but my husband decided that we should have a ”surprise” homecoming. And yes indeed, we had a homecoming! As we approached the airport entrance we could see lots of people waiting. “Why are there so many people?” Chip wondered. “Well,” I said, “I think your Dad is breaking the rule. After seven months you’re a celebrity!”
What a blessing it was. Lots of tears.
We had Christmas. And January. He lived a fairly normal life. He rested a lot. Eating was an issue. He never was a big eater. But he was getting better. His high school friends would take him for rides in the car. He’d ask, “What will I do? What kind of job will I have?” There was hope. It wasn’t like we thought he wasn’t going to make it. We were trying to get him strong again.
His blood was being regularly tested – I was able to take it myself from his Hickman catheter and drop it at the lab. One day in early February, he insisted I go visit a friend in another city. I was very apprehensive about it but he insisted. When I returned I found out the doctor had called and wanted me to call back no matter what time. Chip had relapsed.
I told Chip. He said, “Mom, you’re not going to pieces, are you?”
And I said, “Chip, I’m not going to pieces.” And through the grace of God I didn’t, at least not in front of him.
He said, “Remember Mom, you promised me I wouldn’t have to do another one.”
I said, “I remember.” I told Larry, “We’re not doing it. I promised him. He’s OK with it, and we’re going to be OK with it too.”
He lived 11 days after he knew the cancer was back. Once we found out, we had a hospital bed in the living room.
You can’t believe the constant stream of people that came. I have such admiration for people who have the guts to walk in, and make conversation when you know somebody’s going to die. It is tough. But it’s wonderful, and it’s warm, and it’s loving and it’s caring. It’s one of the good things. Thank God for such people.
He died on Feb. 19. The funeral was quite large – out the funeral home and down the street. It was so new then – bone marrow transplant. My mom was so sure we were going to make it.
You do what you’ve got to do. We went back to work. We went back to living. We went back to our family. We all miss him. I cry a little sometimes.
But life is good! I’m 72, and very proud of that. When your son dies at 18, a birthday means everything to you. You’re so lucky to have them.
I had open heart surgery last year. They did a five-way bypass out here in Arizona where Larry and I winter. I am doing well. When you watch your son go through what he did, you can do anything.
I had a dream one night after the heart surgery: I could feel my son right there, in my room. He was with me. I felt sad that he had suffered so much. That bone marrow transplant was tough, let me tell you. He gave it his all.
Now, to go back and see this beautiful complex [Seattle Cancer Care Alliance and the SCCA House, a nearby apartment for patients and families], the patients aren’t even spending the night in the hospital. Have we come a long way. Lots of people with AML are living.
I had a high school classmate who created the Hougen Foundation. They sent a sizable check to the Hutch for Chip while we were there. And Chip said, “You know, we had to stand all the time waiting for a cab or the bus out front. Wouldn’t it be nice if there was a bench we could sit on, and a plaque that said, ’I went HOME’ – that somebody went home? All the plaques in the center are in memory of someone.”
So he wrote the plaque: “From Lawrence ‘Chip’ Gontko who went home to Michigan 11/3/83 with healthy bone marrow. My sincere appreciation for your efforts at the Hutch!”
Would I do it again? Of course! We don’t get choices in life. I would hope the ending would be different.
When Chip got sick and we went over to the Hutch, I brought a big tablet with me. I wrote every single day until the day he died. I’ve never read it. I attempted to read it 10 years ago. It had been 20 years. You’d think I could read it now.
The whole thing, when I think back on it — the nurses, the doctors, the volunteers … all the patients and families and how we all got along. You came from nowhere, you knew no one, but you were family from the hello, truly. I wrote about all of that – their names, and my feelings and their feelings. It was an unbelievable, wonderful experience. Everybody should have a time in their life when they give and they share.
When I was in Seattle, sitting on that bench, I said, “Chip, I’m going to go home and read my book.” I think it will be sad and funny and about all the people that helped us get through.
Mary Engel is a former staff writer at Fred Hutchinson Cancer Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.