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“As you wait, you have a lot of time to think. You comb through the past in search of something you might have missed. If we had acted sooner on the signs of his illness—had the cancer been diagnosed earlier—would Lee have had a better chance? You think about your child as a toddler and as a kid and as a teen. Did you push him too hard or not enough? How did you handle his skinned knees and his successes? You remember the first time he got drunk. (Lee was 14 and had discovered the punchbowl at Heidi’s Sweet Sixteen party.) You remember his first hockey goal.”
Alan Pesky is founder, Lee Pesky Learning Center and co-author of More to Life than More: A Memoir of Misunderstanding, Loss, and Learning.
He shares his story and discusses the KevinMD article, “A memoir of misunderstanding, loss, and learning.”
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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.
Transcript
Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show we have Alan Pesky. He is the founder of the Lee Pesky Learning Center, and he’s the co-author of the book “More to Life than More: A Memoir of Misunderstanding, Loss, and Learning.” There is an excerpt from that book on KevinMD. Alan, welcome to the show.
Alan Pesky: Thank you. It’s a pleasure to be here.
Kevin Pho: We’ll get into your book and excerpt in a little bit, but first off, can you share your story and journey to where you are today?
Alan Pesky: Well, my journey started back in 1933, but the journey that the book really focuses on is from growing up in the Bronx, New York, in a lower-middle-income family, and being the first in my family to go to college. After graduating college, I had great aspirations to be able to get what I will put quotation marks around as “success.” In my business career, I had what most people would consider a successful business career.
After retiring at age 62, my middle child was diagnosed with a brain tumor and passed away eight weeks after the diagnosis. So it was a rather traumatic experience in every sense of the imagination. My wife, myself, and our two other children decided that what we wanted to do was to establish something to help children in memory of our son. Lots of people, and certainly when you lose something like a son, want to keep that memory alive in some way.
We chose to do it by establishing a facility in Boise, Idaho, for children with learning disabilities. Starting with two people in 1997, today we have 36 people working at the Lee Pesky Learning Center. It’s a not-for-profit. We estimate that about 100,000 children have been serviced by the center. Basically, that, in a nutshell, is a quick appraisal of my starting out and where I am today.
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Kevin Pho: Tell us a little bit more about your son and his diagnosis. And since this is a podcast where I have a lot of clinicians, maybe talk about your interactions with the medical professionals during that time.
Alan Pesky: Well, that’s a long story. There are a lot of chapters in my experience. The first experience we had was, naturally, well, our son had not been feeling well for a period of time, five months, and he was diagnosed numerous times by numerous physicians. They diagnosed him, from chronic fatigue syndrome to depression to problems with his esophagus, and various different diagnoses.
But it wasn’t until he crashed his car into a car in front of him. My wife happened to have been in the neighborhood when that happened. He was called and came over, and our son wanted to take his car to the body shop, and he was weaving all over the road as he was driving. When he got home to our house, he couldn’t remember where his insurance information was.
What ended up happening is we took him to the local hospital in Sun Valley, and a half hour later, the doctor came up white as a sheet, and he said, “I have some bad news for you. After taking a CT scan of where your son had banged his head, there’s a large tumor at the base of his brain.” That night, we ended up in Boise, Idaho, which was 180 miles away, to get an MRI. From there, we ended up taking our son to New York, where he was going to be in the care of a man by the name of Patrick Kelly, who many people credited with founding stereotactic medicine and stereotactic analysis and using that in surgery. That is basically my experience with the medical community.
Dr. Kelly was an extraordinary human being. For all of his fame and all of his renown, he treated every single patient with a big heart and a big soul. He was just a man that I’ve remained friendly with after the loss of our son, and he’s a man for whom I just have nothing but the highest regard.
Kevin Pho: Now, for those other families who also have received news of a tragic diagnosis, just upon reflecting on your tragic experience yourself, what are some pieces of advice that you could share with those other families who may be going through something similar?
Alan Pesky: To answer that question, I answer it this way: Everybody is different, and everybody handles a situation like this, a tragedy like this, and also what happens afterwards, in their own way. The way my wife and I handled this was, we were just an extraordinary partnership. There is an expression that more marriages break up after the loss of a child than for any other reason, because the parents sort of blame one another, or there’s something where they don’t agree on something. My wife and I, just because of our nature, we couldn’t have been tighter, and couldn’t have been closer than we were, as well as our other two children. For that, I am extraordinarily fortunate and thankful that it went that way.
When you have to make a decision near the end, where you were asked by the radiologist, “Would you like your child to be on an experimental protocol? We’re working on some things.” When I asked Dr. Kelly, he looked at me, and he said, “You’re looking at your son now, and this is the best he will be at any time.” He said, “He will continue to go down from here. If you are satisfied to go that route, that is your decision.” When I asked him what he would do if he were in my place, he said, “Alan, I’d rather you make your decision, and don’t bank it on what I have to say to you.”
Kevin Pho: We always like to hear from patients and their families about what we’ve done well and what we could improve on. Now I’m going to ask you that question. From your interactions with the medical professionals during this difficult time, what are some things they did well, and what are some things that they could have improved on?
Alan Pesky: What they did well was, I would venture to say, if we could record and watch Dr. Kelly, with his humanity and with his caring, and that he probably looked at every patient that came to him as the most important patient that came to him. I think there’s a great message in there, because at the Lee Pesky Learning Center, we have an expression that every child who comes to the Lee Pesky Learning Center is the most important child who comes to the Lee Pesky Learning Center. How you exhibit that and how individuals do it is up to themselves.
The worst experience I had during this entire time was when our son was released to hospice. You had to have an attending physician who would be responsible for him, because the hospice doesn’t have physicians on staff who attend to somebody that’s released to them. The physician, who we didn’t select, happened to be the physician for my wife and myself. He had known us for years.
We were told, upon the release of our son, that the worst thing that can happen with a child who has a glioblastoma is that they can go into seizure, and that what will be diagnosed when he leaves is that he should be on Tegretol, which is a medication that has an impact on seizures, and that it has to be monitored by the doctor. And it has to be monitored continually by the doctor, because as the child gets worse, the chance for a seizure gets better.
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Kevin Pho: You talk about your story in your book that you co-authored, “More to Life than More: A Memoir of Misunderstanding, Loss, and Learning.” What are some of the main messages from the book that you want my audience to come away with?
Alan Pesky: Our son had learning disabilities. He grew up at a time before learning disabilities were really understood by the educational profession and the medical profession. The words “learning disabilities” didn’t come into the English language, actually, until the mid, late ’70s. By that time, our son was 15, 16 years of age. So while he was growing up, he was not performing well at school, and at various times, we would get a call, “Your son is immature,” or, “Your son is not reacting this way or that way.” I didn’t understand why our son wasn’t performing to the degree that I hoped that he would be able to perform.
It wasn’t until later on, when I started to understand what learning disabilities were about, and after the loss of our son especially, and going into my own digging deep down into my soul, was the fact that I was looking at my son as the son that I wanted to have, not the son I have. There’s a very big difference, especially for a parent that is a hard-driving parent, that is a success-oriented parent, who looks at their child and says, “This is what I want my child to be.”
That isn’t what’s important. What the important message is, and this is for the medical profession, the educational profession, etc.: It doesn’t matter what you want your child to be. It’s what your child is that really matters. Try to understand that maybe your child isn’t going to be the best soccer player on the field, but he might be a cellist, or he might want to write poetry, or he might want to do all sorts of things that don’t fit into what you dreamed your son would be. But this is what your son wants, or your daughter wants, to be. The message is: Love the child you have, not the child you want.
Kevin Pho: My final question: What’s your take-home message that you want to leave with my clinician audience?
Alan Pesky: I believe the message of “love the child you have, not the child you want” cuts across society. It cuts across the patients who come to you. It cuts across a couple that comes into your office with problems in their marriage. It’s understanding what the other person is, or looking at things not just from one side, looking at it from both sides as best as possible.
As I said before, with children who come to the Lee Pesky Learning Center, it’s that each individual child is the most important child. With patients, I guess it should be that each patient who comes to you is the most important patient that you have, and how you handle that is naturally up to you.
Kevin Pho: Alan, thank you so much for sharing your story, time, and insight, and thanks again for being on the show.
Alan Pesky: Thank you for having me.
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