
Chapter 10: The Ski Rehabilitation Program
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Description
In this chapter Dr. Jaffe speaks in detail about MD Anderson’s Ski Rehabilitation Program, an innovative initiative run yearly in Winter Park, Colorado, to build the long-term confidence and competence of amputees. He describes criteria for selecting the patients for the first week-long program (health mattered more than age), as well as the decision to have a parent accompany each child. Parent participated in conferences during the week, providing MD Anderson staff with their evaluation of their child’s treatment. The main problems mentioned were communication and the timing of treatments, and Dr. Jaffe notes that this information was valuable in improving patient care. The costs of the trip for the children and parents were funded by MD Anderson. Later the trips were funded by the Children’s Art Project. Dr. Jaffe notes that there are not enough funds for the 2013 trip, but many parents and children are paying their own way, because the trip is so important for them. Dr. Jaffe also describes the effects of the week long experience on the children –notably a dramatic increase in their sense of “prowess.” He also goes into detail about the activities provided and how these have changed over the years to include one-on-one training, races, and prizes. He reports that children who have participated in this program mainstream easily, and have gone on to become very successful. (Ten have become physicians.)
Identifier
JaffeN_02_20120817_C10
Publication Date
8-17-2012
City
Houston, Texas
Interview Session
Topics Covered
The University of Texas MD Anderson Cancer Center - Building the Institution; The Clinician; The Administrator; Contributions; Building/Transforming the Institution; Offering Care, Compassion, Help; Patients; Human Stories
Transcript
Norman Jaffe, MD :
Now let me go a little further. Once I had—to my mind at least—created and satisfied the obligations that were imposed—and some of them were self-imposed upon me when I came over here—I began to devote my attention also to the rehabilitation of patients with osteosarcoma, and that was the concept underlying the ski trip, the Ski Rehabilitation Program. I think I may have mentioned it. It was actually introduced to me by Ted Kennedy. I treated young Ted Kennedy, the son of the late senator, when I was in Boston, and he showed me that one could in fact ski even though one had an amputation. When I was at the MD Anderson Cancer Center and I had started the ball rolling in terms of changing things, improving things, developing parts of the long-term survivor clinic and also in the musculoskeletal tumors, there was a patient. Her name was [Redacted], and she had undergone an amputation, and her mother heard about my work with Ted Kennedy. [Redacted] I can’t remember her name, but she was incidentally an air hostess—[Redacted] and another woman, Rhoda Tomasco, approached me and said they would like for me to continue the ski program that I had developed at the Dana-Farber Cancer Institute. And we went up to Winter Park, Colorado, and inspected the facilities over there, particularly with a person called [O’Leary]—I can’t remember his second name, but it was Howell, and he showed us that he was teaching amputees, particularly veterans, how to ski. And with his blessing and assistance we brought up a contingent of patients and taught them how to ski, and that started the ski program thirty years ago.
Tacey Ann Rosolowski, PhD:
How did you select those initial patients?
Norman Jaffe, MD :
Obviously on the basis that they had to be amputees, and secondly, they had to be clinically fit for that particular situation. They could still be undergoing treatment, but as long as they were capable of learning how to ski we permitted them to go.
Tacey Ann Rosolowski, PhD:
How old were these kids?
Norman Jaffe, MD :
The age did not matter as long as they were secure in what they could do, but there was another point also. I arranged for a single parent to accompany the patient. Now, there was some method in that. I told the hospital that I would convene meetings with the parents at night, and I would discuss with the parents their concept and aspects of the treatment that their child had received while in hospital, and I indicated that this would permit me to make changes to support certain programs and things of that nature at the MD Anderson Cancer Center. At night we used to have meetings around the fireplace, and I would ask the parents what were your problems, what were your difficulties, and so on.
Tacey Ann Rosolowski, PhD:
What were some of the things you heard?
Norman Jaffe, MD :
There was not enough communication between a nurse and a patient. There was not sufficient time for a procedure to be implemented without forewarning the patient in advance, and things of that nature. I can’t remember them all, but they were very valuable pieces of advice, and we did change things. I did that for about four or five years, and because the parents had given me that advice, they were given the opportunity to come free of charge. MD Anderson paid for their trip.
Tacey Ann Rosolowski, PhD:
I was going to ask you how it was funded.
Norman Jaffe, MD :
Through MD Anderson. It was very well received. Later the funding came from the art project, the Children’s Art Project, which is still done today. There is a problem, however. Next year’s trip cannot be funded. We do not have sufficient funds, but we believe that we will be able to continue in 2014. Next year’s trip is suspended, but even though it is suspended, the parents of the trips from the past who have been so enamored and so excited with the trip, and the children, have come together and said that they will go on the trip and pay independently to go on the trip and so have asked our advice and guidance. The trip in 2013 will still take place but apparently with a diminished number of patients and also without the staff of the MD Anderson Cancer Center. But we are trying to make arrangements to reinstate the trip for 2014.
Tacey Ann Rosolowski, PhD:
What did you observe the first trip that you went on? What impact did you see?
Norman Jaffe, MD :
There was a tremendous change in a patient’s outlook. Whereas before they were meek and mild, some of them felt that they could not do a thing, at the end of the week when they were showing their prowess, their ability to ski, and even better than I could ski, and so on and to show that they could do things that normal people could do and even better. There was a tremendous change in the psychological attitude of patients, and I think that has held true throughout the period of time that we’ve held these trips.
Tacey Ann Rosolowski, PhD:
How long are the—?
Norman Jaffe, MD :
Seven days. Now, let me tell you that on day one they get their gear. On day two they learn to ski. On day three their skiing is improved and so on, and at night we have a dance on one night. Amputees can dance, and I insist on them dancing. On another night we have what is called tubing, take them down to the tube and put them in the tubes, and they go down.
Tacey Ann Rosolowski, PhD:
Oh, so like sliding down the hills.
Norman Jaffe, MD :
And we have a child life worker with us, and she keeps them occupied. We have a psychologist and psychiatrist—mainly a psychologist—to come with us and to discuss things with patients and to see what impact it has had. In fact, Dr. Rhonda—what is her name?—Rhonda Roberts can give you more information on what she considers to be the great benefits that have accrued from these children. She’s written several papers on it already, and she’s going to present some more at some of the cancer meetings. There is tremendous dividend that can occur from these particular trips.
Tacey Ann Rosolowski, PhD:
Is it unusual for a cancer center to have this kind of support for patients?
Norman Jaffe, MD :
Certainly the ski trip. I don’t know. There are one or two centers who have a ski trip, but I have been told by what is called the National Ability Center in Park City, where we have these trips, that as far as they’re concerned, the trip organized by MD Anderson is the best in the world, and we have documents to support that in terms of letters and so on.
Tacey Ann Rosolowski, PhD:
What do you think they see in your program that makes it come above the others?
Norman Jaffe, MD :
The program didn’t develop overnight. It took thirty years to come to its fruition. At the very end of the program we have a race that encourages the children to show what they’ve done. We have a meeting on the last night where we present the prizes and things of that nature, and each child comes and discusses what he or she has learned from it and things of that nature. The ski instructors talk about how the child has developed over the course of several days, the patient. There is, I think, a different attitude in each child, in each patient, from day one compared to day seven. Incidentally, each patient has a one-on-one ski instructor so that they get the best possible form of teaching in terms of their skiing.
Tacey Ann Rosolowski, PhD:
How did the program and what you offer during those seven days evolve over—and why?
Norman Jaffe, MD :
Well, because we saw we needed to do this, we needed to do that, and things of that nature. When we first [started] thirty years ago, well, let the kids ski. That was not good enough after a while. Listen, we’ve got to do something more. We’ve got to show the kids that they can do other things, so here is a games night. Here is another night where we take them to the rehabilitation center, and we get them to climb up the mountain, the wall. Now, amputees can climb up those walls, and we show them they can do that. They can ski. They have a night of games like normal children. They have a night where they climb up the wall. They have a night of dancing. They have one free night where we tell them, “Go out with your parents and do what you like.” This sort of thing puts them into a normal category of individual.
Tacey Ann Rosolowski, PhD:
Have you studied the effects on each of the children who have gone through this program?
Norman Jaffe, MD :
Dr. Rhonda Roberts has done that, and I think it may be worthwhile having a chat with her. We have already published several papers on this.
Tacey Ann Rosolowski, PhD:
Have you found that these individuals are more successful in adjusting?
Norman Jaffe, MD :
They’re just as successful in adjusting. I wouldn’t say more, but they enter the normal freeway of society. I don’t say it’s because of the ski trip that they’ve become doctors and architects and what have you, accountants and things of that nature, but we have many who are in that category. In fact, I have ten doctors [whom] I treated who were amputees in the past. There is a tremendous benefit that has accrued from the ski trip.
Tacey Ann Rosolowski, PhD:
Abilifying people.
Norman Jaffe, MD :
Absolutely.
Tacey Ann Rosolowski, PhD:
That’s pretty amazing. We have about ten minutes left today. What would you like to address now in terms of your role here?
Recommended Citation
Jaffe, Norman and Rosolowski, Tacey A. PhD, "Chapter 10: The Ski Rehabilitation Program" (2012). Interview Chapters. 1148.
https://openworks.mdanderson.org/mchv_interviewchapters/1148
Conditions Governing Access
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