Our friends nodded. And grimaced. “The treatment is chemotherapy. There’s nothing to operate on surgically. That and maybe radiation.”
“That sucks, but at the end, he’ll be cured. They do all sorts of stuff with cancer these days,” I told them. “Listen, let me make a few calls this week. See if I can find any experts in Washington. Don’t delay anything, but let me look into it.”
At that offer, Tusker and Tessa looked at each other and smiled. Tessa said, “Why do you think we brought you that pamphlet? We knew you’d want it spelled out for you when you started poking around.”
“You two are real funny! Am I that predictable?”
The other three all looked at each other and said, damn near in unison, “Yes!” I just rolled my eyes. The Tusks left us with the pamphlet and packed up their kids and went home.
That night I made sure to hug each of my children before they went to bed. The girls didn’t think about it, but Charlie thought it was pretty strange. I told him to tough it out, or I’d kiss him, too. He ran shrieking at the thought, which made Marilyn and me laugh.
Monday morning, after my morning staff meeting, I had Babs and Mindy stick around. “A friend of mine has a child with leukemia. Who do I see about finding him the best doctor in the country?”
The two women looked at each other. Mindy looked a little mystified, but Babs immediately answered, “You need to see somebody over at the National Institutes of Health. They’ll know somebody.”
“Is this one of your children, sir?” asked Mindy.
I shook my head. “No, but he might as well be. It’s my best friend’s youngest.”
“I can make a few calls, set something up,” said Babs.
“Make it happen fast. I need to know this week,” I pressed. They nodded and left. I called Marty in and we started discussing other stuff.
Wednesday morning I drove out to Bethesda, where I had an appointment with somebody about leukemia. The National Institutes of Health are a sprawling campus where they do research and fund medical research for the government. Babs and Mindy had made enough calls to move me up the food chain.
Bethesda wasn’t far from the house on 30th, but it took my driver a bit to find a parking spot and make our way to the front door. In those pre-9/11 days you didn’t get strip searched on opening the door. The young lady at the main desk took my name and called somebody, and two minutes later an earnest young man came down and retrieved me. “Welcome, Congressman Buckman. You’ll be meeting with Doctor Heisman this morning,” he told me.
“Lead the way.”
I was escorted inside, where we took an elevator up several floors. I was led to an office with a sign by the door, ‘Jonathan Heisman, Executive Director’, which my guide simply pushed open and led me into a small waiting area. I was deposited with a secretary and my guide took off. Almost immediately I was shown into an inner office, to find two men waiting for me.
“Congressman Buckman, welcome to the National Institutes of Health. I’m Jonathan Heisman, the Executive Director. Doctor Healey would have been here, but she’s at a conference in San Diego this week,” said the first man, a slim and somewhat ascetic looking man with a trim beard and mustache. He reached out and we shook hands.
“That’s all right. This just came up, Doctor… I assume it’s Doctor?”
He nodded. “Yes, both MD and PhD. This is Doctor Harry Hollings, my counterpart over at the National Cancer Institute, one of our sub-agencies.”
I turned to the other man, a thoroughly nondescript fellow about my height and about twenty pounds heavier. He reached out to shake my hand also. “Pleased to meet you, Congressman, although not under these circumstances.”
“Thank you. I agree, it’s not the way I would want to meet anybody.”
Heisman gestured towards an armchair. “Why don’t we sit and talk about that.” We made ourselves comfortable, and he opened the talk. “My understanding is that you have a friend, a constituent I believe, with a child with leukemia.”
I had to smile at that. “Close, but not exactly. They aren’t my constituents, but they are very close friends. Their youngest son was just diagnosed with acute lymphocytic leukemia.” I took the pamphlet, now getting worn out, out of my pocket and laid it on the desk. “They were initially diagnosed at Johns Hopkins, and then got the same diagnosis a few days later at the Mayo Clinic.”
“And what brings you to us?” asked Hollings.
“I don’t know. What can I do to help? I guess.”
Heisman looked at Hollings, who asked me a few questions. When did they notice the first symptoms? When did they take Carter to Johns Hopkins? When did they take him to Rochester? When were they starting treatment? I answered each as best I could.
“Congressman, I have to tell you that your friends are doing everything we tell people to do. They took the symptoms seriously, they sought out medical treatment, they went to specialists, and they got a second opinion. They are not delaying anything, and are at as good a facility as you can find.”
“Will he be cured?” I asked.
Hollings made a wry face and shrugged, raising his hands in an expression of helplessness. “Sir, I just don’t know. The odds are good, but not perfect. The good news is that when caught early, childhood leukemia is one of the more treatable forms of cancer. The odds are better than even. The bad news is that it’s a very serious disease, and nothing is guaranteed.”
“I understand that. Tell me, are there any clinical trials, experimental drugs or treatments, other things they could do? Is there a doctor I could send them to, anywhere else, in the world even?”
He shook his head. “No, not really. Treatments are improving every day, but we don’t have a magic bullet hidden away somewhere.”
“Nothing?! Money isn’t an object. I mean, if you’ve got some million dollar pill available, we can spend the million dollars,” I pushed.
“Sorry, Congressman, we don’t even have a ten million dollar pill. Your friends are doing what can be done.”
“GODDAMMIT!” I cursed. The other two looked concerned, but I held my hands up. “Sorry, I apologize for that. It’s not your fault, and I know you’re trying to be helpful. I appreciate that. I really do.”
It was Heisman who spoke next. “I take it this family is very close to you.”
I sighed and nodded. “I went to school as a kid with the parents. The father was one of the ushers at my wedding, and the mother went into labor with their first child at our reception. My wife and I attended Carter’s christening. I don’t think we can get any closer.”
“Then you’re already doing everything you can. They’re doing all the right stuff for Carter’s treatment. You’re supporting them. That’s what you can do.”
Hollings added, “Something else you can do, Congressman Buckman, is to understand just how debilitating this is going to be on everybody. The primary treatment is going to be chemotherapy. Everything you’ve ever heard about how hard chemo is on a person is true. Carter is going to be sick as a dog on his good days. This is going to be very hard on his parents and the rest of the family, too. If you want to help, take the load off the family. Let any of the kids stay with you, run an errand or two for them, give them a break and see that they have a date night or two.”
I sighed again. “We can do that. I’ll let my wife know tonight.”
Heisman spoke up again. “The other thing you can do, Congressman, is your job. Get us more funding. There’s never enough, and it directly tracks into better treatments and breakthroughs.”