HEALING THE GRIEVING HEART
Pediatric Oncology
Hosts:? Dr. Gloria Horsley and Dr. Heidi Horsley
With guest:? Dr. Stephen Chanock
September 28, 2007
G:? ?Hello.? I?m Dr. Gloria Horsley with my co-host
H:? ?Dr. Heidi Horsley.
G:? ?Each week, Heidi and I welcome you to Healing the Grieving Heart, a show of hope and conversation with those who?ve suffered the loss of a loved one and for health care professionals who work in this most difficult field.? And always the message is others have been there before you and made it, you can, too.? You need not walk alone.? If you?re listening to our Thursday live Internet show, please feel free to join Heidi, me, and our guest on the show by calling our toll free number, 1-866-472-5792, with questions or comments regarding the losses in your life.? These shows are archived on our blog, www.thegriefblog.com as well as www.thecompassionatefriends.org websites.? All shows can be downloaded on Itunes and transcripts can be accessed on our blog, www.thegriefblog.com.? Well, good morning, Heidi.
H:?Hi mom.
G:?I guess noon in New York, right?
H:?Right.
G:?And I?m on West Coast San Francisco time.? I want to talk a little bit about some of the things I?m doing, Heidi.
H:?Okay.
G:?Out here on the West Coast.? I?ve decided to start a chapter of The Compassionate Friends in Palo Alto, California.
H:?Very good.? That?s wonderful.
G:?Yeah, it?s a very interesting process and I want to kind of keep our listeners a little abreast of how it is because I?d love to hear that some of you are contacting The Compassionate Friends through their website, www.thecompassionatefriends.org, and looking into starting a chapter in your own area because we have people who are coming onto our blog and saying they?d like to go to Compassionate Friends but there?s not a chapter in that area, but one of the requirements is to be ? at Compassionate Friends, it?s a little better if you?re 18 months out of your loss before you decide to go forward and start a chapter.? So why don?t you think about it because I?ve thought about it, and I?m excited about what?s going on.? We?re going to have our first meeting, the fourth Monday of October in Palo Alto, so if you want to ? if you?re around in that area or if you?re visiting, please feel free to come to our chapter meeting and you can find out all about it by contacting me through www.thegriefblog.com.
H:?Well, mom, and I think you?re making a good point that it?s never ? you?re never too far along in the grief process to start a chapter.? I mean, because you?re over 20 years bereaved and you?re now starting a chapter for the first time.
G:?Yeah.? It?s kind of an amazing thing because people are like wow, why after all these years would you start a chapter?? And I am on the Board of Compassionate Friends and had never ? because I was working in the profession, I?d never really got that involved with a chapter so I wanted to.? Everybody just is so excited about their chapters when I go to our national meetings.? So I thought well, it?s something I could do, and I said to my husband, you know, to Heidi?s dad, Phil, you know, I?m wondering, I?m thinking why am I putting all this energy into it, and he said such a sweet thing.? He said, you know, look at all the energy you put into the other kids and here?s an opportunity to give some time to Scott.? So.
H:?I love that.? That?s great.
G:?Yeah, I really like that, too.? And it?s such a wonderful service, and we also love Compassionate Friends when we go to the national conferences, don?t you, Heidi?? Because you can see people moving along in the process.
H:?Yeah, and I like the woman you just met the other day that said I really began my healing when I started a chapter because I was of service to others.
G:?Right.? Yeah, she told me that.? Her name?s Muffy, and she?s got a chapter down in San Carlos in California.? Yeah, she?s helping me out with my chapter.? So, Heidi, I also want to talk about, we?ve just had great things happening on www.thegriefblog.com and I hope you?re all going in and looking at it and reading it and also contributing because there are places to make comments on other people?s stories, and we had a request for some comments, didn?t we, Heidi?? Were you able to get on the blog this morning?? I know you?ve been out of town.
H:?Yes, I was, and I read the email about a woman that son had only been dead for a year and he?s eleven years old and she requested that people write in about rituals ? ways to celebrate their children?s birthdays.
G:?Yeah, and so if you?ve got any ideas, please go on the blog and comment.? I think her name?s Nancy, was that right, Heidi?
H:?I knew you were going to ask me that.? Her son is Jason, I think, and you know one of the best rituals that families share with me and that they really love doing is getting balloons and getting the number of balloons for however old your child would have been and then filling them with helium and releasing them one at a time and you can have a message that you say out loud or something you say to remember that person by and you release them into the sky.
G:?Yeah, that?s a wonderful idea, and I remember when Scott died, I actually had a birthday party for him, a pizza party, and invited his friends.? And for some people, my husband and Heidi?s 14-year-old sister at the time, Heather, they didn?t want ? they sat in the kitchen and I was out with all the kids in the dining room.? It wasn?t for them.? So that?s another thing, isn?t it, Heidi?? It?s not for everyone.
H:?Yes.? Some people like to do things to include other people and some people like to do things that are more individual and private.
G:?Um hm.? Exactly.? So you can think about the things that you enjoy doing with your child.? We were talking this morning about maybe you could plant a rose bush, right, Heidi?
H:?Yeah, or plant a tree or something that?s living to symbolize the life that they had and to celebrate their life.? And on their birthday, it can be also a celebration of their life and their time and all the good memories you had with them.
G:?And you could also ? I?ve had people tell me even years later that the birthday was an opportunity for them to send out a note to all their friends and family and say we?re compiling a little book, even though it?s been ten years, about our child?s life, and do you have any special memories that we could put in this birthday book?
H:?I love that one.? That?s a great idea.? Tell stories.
G:?So lots of things you can do.? Of course, the first few years, you may not have the energy to do more than put a rose out on the table.
H:?Um hm.? Very true.
G:?So whatever works for you.? And then I also had someone tell me recently that it?s been twenty years for them and they don?t do anything because it?s too pain ? they just don?t want to.? They just, you know, would rather forget it.
H:?People grieve differently and in different ways.
G:?Yeah, so that?s a possibility, too.? Well, Heidi, we?ve got a great guest today, and would you like to introduce him?
H:?Yes, I?d be honored to.? Our topic today is ?Pediatric Oncology,? and our guest is Dr. Stephen Chanock.? Dr. Chanock received his M.D. from Harvard Medical School and completed training in pediatrics, pediatric infectious diseases, and pediatric hematology/oncology at Boston Children?s Hospital and the Dana-Farber Cancer Institute.? Afterwards, he joined the National Cancer Institute, where he is a senior investigator.? He returned to the Pediatric Oncology Branch, where his brother had been treated for a fatal rare type of pediatric cancer.? His brother was diagnosed with cancer within days of his acceptance to medical school and died before the end of his first year influencing his career choice.? Welcome to the show, Dr. Chanock.
S:?Thank you.? It?s a pleasure to be on a wonderful show and talking with the two of you today.
G:?It?s great to have you on and we always really like it when we have professional people like you are who have also had a loss as profound as you had of your brother, right, Foster?
S:?Correct.
G:?Yeah.? Could you tell us a little bit about when that was that Foster died?
S:?Sure.? This is 27 years ago now.? 1980 is when he actually died on May 31st, but in 1979, I was actually living in France.? My wife and I were in France and I was spending the year there before going to medical school studying music, doing something totally non-medical, and I?d gotten accepted to medical school and then within days of being accepted to medical school, we got a message to call back home and to speak to my brother, and we were in this tiny little town where we had to go to a pay phone and put coins in and be able to call and called back to speak to my parents and my brother and he, you know, was very honest and honorable and broke the news of the diagnosis that he had of this rare type of pediatric cancer called synovial cell sarcoma and that he was in the best of hands.
G:?So that was a sinus cancer?
S:?No, it?s synovial so it?s the lining of the joints and so it?s a rare type of sarcoma and it?s usually seen in younger patients and young adults.? He was actually 26 at the time and working and he, you know, very upbeat.
G:?So he was your big brother.
S:?He was my older brother.? Very accomplished.? A wonderful character who had done all sorts of extraordinary things in his life.? He was one of the special assistants to Gerald Ford in the White House and had been a student radical two years before.? Had just, you know, he?d done the whole gamut of things.? He had the wonderful gift of the gab, and he was being seen at the National Cancer Institute partly because my father, who has just retired, has been here at NIH for 50 years doing vaccine development work and research and so he went to his colleague and wonderful doctor Steve Rosenberg, the surgeon saw him, and Dr. Phil Pizzo, pediatric oncologist, and I think everybody was very upbeat but knowing that it was a major challenge ahead and so he underwent a series of chemotherapeutic regimens and radiation therapy and surgery.
G:?And how long ? over how long a period that was?
S:?That lasted basically one year.? He unfortunately
G:?Now did you come back?
S:?Well, we came back, you know, at the end of the expected time.? We? were strongly recommended to stay, that he was going to be all right.? Life needed to go on.
H:?I was going to say and you would think at 26 that he was going to be all right.?
S:?Absolutely.
H:?I mean you would just assume okay, he?s only 26.? They?re going to cure this and he?s going to move on with his life.
S:?Absolutely, and he was the kind of person who made all sorts of remarkable things happen so if there was anybody who could get a reservation at a restaurant or convince someone to do something or get a job by just sort of go doing something, you know, he had that wherewithal to make things happen.?
H:?So in other words, if it was just sheer will, he would have stayed alive.
S:?Exactly, and so he started his therapy and we came back I?d say a month later or so.? My wife and I had moved up to Boston and got settled in medical school and obviously visited him quite a bit.? He was living in New York at that time and we visited him in New York and he came to see us in Boston, you know, quite a number of trips back and forth, but it was unfortunately in the spring of the next year that the disease came roaring back and I was in the middle of the second semester of my first year of medical school.
G:?Wow, it?s time for us to go to break now, and when we get back, let?s talk about there you are in medical school and your brother, Foster, has had I guess come out of remission or has had his cancer flare up.? I?m your host, Dr. Gloria Horsley.? Please stay tuned to hear more.? We?re talking about ?Pediatric Oncology? with Dr. Stephen Chanock.? If you want to call in to our show, you can call us on our toll-free number, 1-866-472-5792 with questions or comments regarding the losses in your life.? These shows are archived on www.thegriefblog.com as well as www.thecompassionatefriends.org website.? Pleas stay tuned to hear more.
H:?Welcome back to Healing the Grieving Heart.? I am Dr. Heidi with my mom, Dr. Gloria, and we?re here today talking with Dr. Stephen Chanock about ?Pediatric Oncology.?? Dr. Chanock works for the National Cancer Institute.? His brother, Foster, was diagnosed with cancer within days of his acceptance to medical school and died before the end of his first year influencing Dr. Chanock?s career choice.? Welcome back to the show, Dr. Chanock and Gloria.
S:?Thank you.
G:?Thanks, Heidi.? Before we get on with Dr. Chanock, I wanted to ? I forgot to say at the top of the show that Heidi and I are going to be in Rochester, New York, next Monday.? We?re going to be speaking at the University of Rochester Medical Center.? It?s open to the public.? If anybody wants to go, they can contact actually the nursing school there at the University of Rochester, and we?ll also be on a Sunday night speaking in Fairport, New York, at the Church of the Assumption.? So both of those events are open to the public if you?re around the Rochester, New York, area.? Well, welcome back to the show.? Can I call you Stephen?
S:?Of course.
G:?Welcome back to the show, Stephen.? When we went to break, for our audience who?s just joining us, we were talking a little bit about your brother, Foster, who at 26 developed a cancer and it had gone ? and now it?s gone out of remission and you are in your first year of medical school, is that right?
S:?Correct.
H:?And I?ve got to ask you, and you know I asked you this before the show started, how does one concentrate.? Here you are in medical school in this intense study and your brother died.? How were you able to compartmentalize and to concentrate at that point?
S:?Well, I think that I certainly was able to, but it was not easy.? I spent obviously the second semester quite distracted and I actually spent the last month at home when it was very clear that my brother was in a terminal phase and that there was nothing that could be done to stop the relentless progression of the cancer.? So I returned home and all the professors were very very nice and sent the notes, and I actually took my exams in the National Library of Medicine, and in that world, you would think that people were sensitive to that and indeed, the Deans and the Professors at the medical school were exquisitely sensitive to that.? That doesn?t mean that it was easy.? That doesn?t mean that it was effortless.? It was quite arduous and quite difficult.
H:?Did you at any point, Stephen, feel like maybe I should take a semester off, or did you feel like it was more helpful for you to stay on course?
S:?I think it was more helpful to stay on course.? I?m that Type A personality.? If you don?t have focus, then it would be even more difficult and painful, and so there I was with the one thing that I could step away from dealing with this day in and day out with my brother and his wife and my parents was to throw myself into my books and say all right, now I?ve got to make something of my own life and turn this around so that hopefully this does not happen to others or we minimize the likelihood that this can happen to others or decrease the risk that this kind of outcome would come to others.?
G:?You know that?s really interesting because we hear that, don?t we, Heidi, how people set a new course in a sense of determination ? you being one ? from having this kind of a loss.
S:?Right, and it really ? there?s no question that was defining in my professional career.? I also had a parallel sort of thing that when I was in college, I had a very very ? still I?ve a very close friend, my closest friend who, my roommate, who?s a hemophiliac so I lived for four years with him in college.
G:?So he had the disease where your blood doesn?t clot properly and you bleed into your joints and whatever.
S:?Correct and lots of chronic complications of arthritis and headaches and things and so I had that experience in college and he?s had the whole series of problems related to therapies of hemophilia and is an extraordinarily strong and spiritual and remarkable person who is sort of a legend unto himself and so between seeing somebody overcome the odds who was told over and over you?ll never walk, you?ll never do this, and he would ? Bobby Massey would go ahead and do each of those things trumping over each person.? There was this very strong example of somebody who was going to will their way.? And then the alternative was to see my brother who had a very similar personality and tendencies but in this circumstance, despite the strongest of wills, the cancer had the better half and unfortunately, he died from it, and it was a very strong contrast that certainly made me think and make me do whatever I can to make it all.
G:?Now did Foster go downhill slowly or was it a sudden death?
S:?He went downhill very very quickly and it was very painful.
G:?So it was physically very painful for him.
S:?Exactly.? Very painful.? And seeing the pain and the anguish of both he and then family members, I have to admit I was in that position of being a first-year medical student when you sort of have this sense of being limitless like you?re putting on the white coat and you?re going to cure everybody and take care of everyone.? There were rescue fantasies of looking after my wife, my wonderful wife Yvette, my parents, and my brother?s wife, and friends etc. that sometimes we?re a little bit unrealistic.
G:?Now do you think ? does that come up for you about anything about how it is for siblings and the fact that they don?t have the right to grieve and they need to take care of everyone else?
H:?And we?re worried about our parents?
S:?Oh, absolutely, and, you know, you spend your life ? I still do 27 years later wondering can I make up for the loss of my brother?
H:?Almost like you have to live a life for him as well as yourself?
S:?Absolutely, and I think there?s a ? I know you two are very well aware of Elizabeth DeVita?s very insightful book, The Empty Room: Surviving the Loss of a Brother or Sister.
G:?Yeah, her brother was ? for our audience ? she is on our show I think about a year-and-a-half ago, so she?s archived.? Wonderful show.? Her brother was if you remember the TV made for movie, ?The Boy in the Bubble,? that John Travolta played in.
H:?It was loosely based on that.
G:?Yeah, very loosely, but it?s a wonderful book.
S:?Well, he was actually on the same floor as my brother and they died within a week of each other so I?ve known Elizabeth for a long time both directly and through this very sort of profoundly important shared experience.
G:?Now did you share it with her?? Were you able to talk to her at the time?? Did you know her?? Did you talk about
S:?No.? I knew who she was but it was
G:?She was a younger ? she was in high school wasn?t she?
S:?Correct.? When I came to work at the National Cancer Institute in 1991, we were reconnected by the wonderful physician who took care of my brother, a man named Dr. Phil Pizzo, who actually hired me because he was the head of pediatric oncology at the Cancer Institute, and so I came to work on the very floor in the program for the man who was taking care of my brother.
H:?And was this the floor that your brother had died on?
S:?Uh, he died on physically a different floor but it was that service.? He was treated by the pediatricians, who are always much nicer and friendlier.
H:?So you were working in the same hospital where your brother was sick and then died.
S:?Absolutely.?
G:?I?ve got to pick on that comment that you just made about pediatricians.
S:?I?m surprised you didn?t pick that up quicker.
G:?They?re much kinder and what was it you said?? Hopefully, they?re more in tune for sure.
S:?Many physicians are, but in general, pediatricians are generally more optimistic and upbeat and friendlier, but that?s just my own editorialization.? I didn?t mean to take us off.
G:?That?s all right.? Well, I wanted to ask you when your brother was sick and dying, here you?ve got a pretty probably fairly famous father, right?
S:?Correct.
G:?And how was that seeing your dad?
H:?And Elizabeth?s father was famous, as well?
G:?Yeah, and he was also in the oncology department?? How was it to?? I mean, how was that for you, you know, seeing your dad suffer?
S:?It was very difficult and he internalized it.? Said very little for a long time and threw himself back into his work with a tremendous vengeance and passion but it was ? obviously it was very difficult to this day to see him continue to go to work and look out the window where he worked and see where my brother had died.? It was a very powerful reminder for him for years to come, and he faced so-to-speak the music by saying I?m going to continue to do what I can to prevent diseases and make the world a better place.
G:?So investing that energy.? How about your mom?
S:?My mother is truly a saint and has carried on.
G:?But how was she right after and how was ? because our audience is fairly new.? How was it for you to see her and do you have any thoughts?
S:?She was devastated, but she was very very concerned with everybody else and wanting to take care of everyone.? My mother truly, you know, was able to see the good in everybody and everything, and this really tested her, and I think it was very troubling, obviously, and very painful, but she kept going, and I know she felt strongly about supporting my wife and myself, and then when ? my wife and I now have four kids, my mother has been the most wonderful communicator and sort of historian of Foster and his legends and his stories so that my kids all have this information and know him very well in that regard so his memory is really lived on particularly through my mother?s ability to wonderfully tell stories and engage about Foster ? who and what he really represented.
G:?That?s a wonderful thing, isn?t it, Heidi?? That continuing bonds.
H:?I love it.? And it?s so important that we keep.? Like you said, Stephen, our children can know our brothers through the stories that family members tell.
S:?Absolutely, and I think that that?s ? I think the very strong example is sort of the contrast between my mother and my father is that at different times they were able to do that.? My father over time was able to talk more about it and tell many humorous and wonderful stories about my late brother, but my mother from the very beginning felt a strong, I think, compulsion to keep his memory alive, and it was through re-living stories, you know, going to his room and doing things and keeping in contact ? I?ll never forget, we had an extraordinary memorial service and my brother was very connected politically and the number of people who are now Vice President of the United States, Secretary of Defense when they were much younger, were friends and they all spoke and were part of this and when it was over, my mother had arranged a jazz combo to be there so mourning was very upbeat.? There was this wonderful jazz musician who was the bassist for Ella Fitzgerald, Keter Betts and company were there having a great time playing jazz and that was sort of emblematic of my mother wanting this to be upbeat.
H:?And a celebration of Foster?s life.? I?m amazed that Foster was only 26 and yet he lived such a full life.
S:?Absolutely.? I have to then now transition to my experience in pediatric oncology.? I think that many of the children that I?ve
G:?You know what, this is going to be so important, I feel it coming on to be something that?s going to be important for our audience and it?s time for us to go to break, so let?s go to break and then let?s pick up on your thought again about that with Dr. Stephen Chanock, and I?m your host, Dr. Gloria Horsley, with my co-host, Dr. Heidi Horsley.? If you have any questions or comments regarding this show or other thoughts, you can get us through our toll-free number 1-866-472-5792 and you can also reach us through www.thegriefblog.com.? Please stay tuned for more.
Well, when we went to break, Stephen, you were going to say something about pediatric oncology ? is that where you were going?? I?m not sure, but I knew it was going to be important so I said let?s break and hear what you have to say so go for it.
S:?All right.? What I was going to say was pick up on the issue of the length of someone?s life is not necessarily the best measure of their life and I think that in the world of pediatric oncology, meeting and having, honestly, as a physician, the privilege of knowing some of the most remarkable people I?ve ever met who may have only lived 10, 12, or 15 or 20 years, but to see the richness of their appreciation and more importantly their pursuit of happiness and good in life, you know, that?s what?s really incredible.? Some of the most remarkable people I?ve ever met are kids who only live 10 or 14 years.
G:?Yeah, I think that?s true because I?ve worked in pediatrics before, and it?s kind of amazing what happens.? But one of the things that also happens with that is that these kids are so precious and they are so taken care of by the family, particularly if they?ve had ? and a lot of times in oncology they have ? they?ve had a year or two or whatever, and these families take such exquisite care of them that many of them live far beyond what anybody thinks they would live and then when they die, they have a giant hole because they?ve been such dedicated care givers.
S:?Absolutely, and they support and they draw everybody with them, you know, in their pursuit of the good in life, and I?ll give you a little bit of a long example, but I am the medical director of a camp that we run out of the National Cancer Institute called Camp Fantastic where we take 100 kids who are on therapy or just coming off of therapy out to the wilds of Virginia and we have a wonderful staff of nurses and physicians as well as the program staff really run by Special Love, Inc., a wonderful organization, and we have these kids for one week at Camp Fantastic and some of them are very very sick and every year, almost every year, we have a couple of kids who unfortunately their disease has come back with a vengeance and they?re barely holding on but they live to come to camp, and they just are so happy in that environment to be with other kids who understand and appreciate and just resonate and many of those issues that the rest of us will only be able to appreciate and see at a distance but not experience and then they live to be at camp and then sadly, within a few weeks, the emails come in that this child or that child has passed away and you could just see that one of the things that kept them going was to get back to that very magical world that a camp like this created for kids with cancer.
G:?That?s wonderful, and also I think the anticipation of going to camp.? It?s not just being there.? It?s the whole thing of telling everybody that you?re normal ? I?m going to camp like everybody else.
H:?And doing something that other kids do.
G:?Yeah.? Wonderful thing.? Well, what happens after you get the message that they?ve died, do the camp people follow up with the families at all?? Send notes or what happens in that world?
S:?Absolutely.? In that world, I mean, the Special Love organization, which is a wonderful organization, has a very strong philosophy that once you?re in that fold, you?re always in that fold, and there may be that terrible loss of the child but the parents are brought back and there?s contact and reaching out whether it?s email, telephone calls, visits, events, invitations.? And the whole world of all the other people who are facing that, family as well as care givers who are a part of that all just sort of step right around and try and envelop the families.
G:?Where is that?? Where would families?? Would it be from all over the United States or just be from one area?
S:?Special Love really is focused on the Maryland, Virginia, West Virginia, Southern Pennsylvania, sort of Baltimore, Washington, corridor, but there are a number of other organizations very similar to this affiliated with camps and programs that are regionally based.? www.speciallove.org is a very wonderful website to go look at some of the resources and programs, but again I think that we know there are pockets and places all across this country and actually across the world that really step up and try and provide that kind of support and that opportunity for people to grieve and to share the joys of a loved one who they?ve lost.
H:?Right, and so you said it?s for the healthy siblings, also, and I think that oftentimes when you?ve had a sibling with a terrible illness ? I know Elizabeth DeVita speaks to this a lot.? There?s so much energy and time that is spent with the sibling that is ill that often the surviving siblings during the illness and after are really overlooked and unacknowledged.
S:?Exactly.? And remember many of the children will have the feeling that it?s their fault that, you know, they had a fight two weeks before the child with cancer goes to the doctor, is diagnosed, is in the hospital, and then a seven-year-old may internalize it and say well, it was my fault that they got cancer.? And so the delicate mind of the sibling is a very very challenging and daunting entity to help through all the stages and that?s why in the world of pediatric oncology, I think, one never treats a patient.? You treat the family and there are blended and all sorts of variations on families and extended families, whether they?re blood or non-blood relatives in terms of who provides the emotional, spiritual, and
G:?And now our audience is saying how do we find this guy?? Because that wasn?t my experience with my doctor.? So what about people who?ve had bad experiences in the hospital.? Do you have any thought?? What should they do if they feel like their pediatrician blew it and they want to ? they don?t want to sue ?em or anything, but they want ?em to know.? They don?t want ?em to do it again.? Do you have any suggestions for these folks out there?
S:?Well, I think the communicating back in a constructive way.? Because remember the physicians are going to go on doing what they?re doing.? That?s their task and they?re dedicated, and physicians do make mistakes, and I certainly have made my share of mistakes in the past and there?s nothing I can do other than feel bad and apologize that these things do occur.? But what you hope is that you would be constructive in pointing out things that may not have been the best things and help
G:?Should I write a letter or should I make an appointment?
S:?Right.? I think that either of those.? We certainly.? I?ve had my experience of getting emails or letters or a comment or a telephone call that have been wake-up calls to learn or to realize things that I can do better next time.
G:?And I say to our audience out there, don?t go over their heads either.? Go directly to your doctor because that?s really who you want to hear it anyway.
H:?And sometimes the doctors aren?t aware until we point things out.
S:?And the same thing with nurses and all these allied health care providers.? I think that what it really comes down to is feeling a level of communication that really is based on trust and that?s where you have to be able to communicate.? It goes both ways.? I think there?s been a big shift in the last 20, 25 years in how doctors and nurses and patients interact with each other and I think that the trust and the communication is more of a two-way street than it was 25 years ago, particularly in cancer.
G:?What are medical students being taught now as far as grief and loss and family goes?
S:?I think medical school curricula are addressing this but there?s a big difference between the theoretical discussion and raising of consciousness and the actual experiences, and you learn from experience.? That?s what medical education is about is applying the knowledge that you get and then it?s those examples ? you never forget the first patient you see with this disease or this kind of issue.? Those things stick out for the rest of your life.
H:?Your first patient that dies, and I?m always saying to everyone that?s listening, all of the people that are out there that are bereaved, we have to teach the world how to be good grief support.? A lot of people are naturally ? know how to do that but some others need us to teach them how to do that.
G:?And I love what you?re saying, you two, because you?re siblings.? You think of the parents always going forward.? How about the siblings going forward and saying, you know, as a sibling, I think you could have been a little more sensitive and such and such or something like that.
S:?Right, and I think that?s always a very hard thing to really bring up, and I think if there?s a good relationship between the medical staff and the family unit, then you?re able to communicate on a number of different issues.? I will give you what I would say is an unfortunate example.? When my brother died, one of the physicians who was part of the intensive care team came in to my father and then came to me and said that I was too emotional about this and that it would be deleterious in the future
G:?to your career
S:?my career and to who I was if I showed that much emotion and was that emotional, and to this day, I still, I?m incredulous that somebody would say that, and I think times have changed.
H:?Right.? That?s amazing.
G:?Yeah, you know, when I was at the University of Rochester in 1983, 1984, I worked with some people who were very well known in the field as marriage and family and all that kind of thing, and we were still in that idea that you didn?t reveal your personal life at all.? You kept it a secret.? Or if I said my son died, people would feel like that was way too much information.? And I think that?s changed a bit, hasn?t it?
S:?I think very much so, but again, you know, there are ? it?s sort of a fine line of where you become too personal, and I think physicians most often and nurses come in contact with individuals at a certain point in their life and they?ve had a very rich life up to that point and so with children, it?s that loss of perfection.? You know, that 10-year old everything was fine, then all of a sudden they?re in a pediatric oncologist?s office with a very scary diagnosis.? The whole terrain shifts.? But that child had 10 years of everybody worshiping and thinking of that child being perfect and having limitless potential and then now, wow, that notion is potentially shattered.
H:?And unfortunately, I still feel, Stephen, I?ve got to tell you that a lot of siblings ? not all ? but a lot of siblings still get the messages of be strong for your parents.? Don?t be too emotional.? Your parents have gone through the worst loss they can have suffered, the loss of a child, and you need to be strong for them, and don?t cause them any more pain.
S:?Exactly, and I think that that is something you see play out over and over with families that ? I?ve had the experience of families that I?ve taken care of and seen what happens.? Some of the siblings turn around and go into medicine or they go into the Peace Corps or they say I?m going to make the world a better place.? I don?t have to do it on the oncology board, but I?m now really ? I?m now fixed in my mind to do something to make this world a better place to make up for that.
G:?I want to ask you a question.? What do you think doctors most need to know about dealing with families who have lost a child?
S:?Oh, that?s an excellent question.
H:?I like that question.
S:?I think they need ? I think doctors best need to understand that each circumstance is different.? Now there are some common elements, but that it really is the sensitivities to each family constellation that is going to be important in helping to make the next step.? Whether you address certain questions of what happened?? Why did the death take place?? How to provide grief counseling, how to direct them.? There’s no real formulaic way to do that, and the stronger your basis of communication with that family prior to that, the greater the likelihood that you?ll be able to, in essence, trust your intuition to help them to see the things that need to be seen, and it really comes to with the death of a child or an adult, one would hope that that would not be the last time a primary care physician would be involved with that family.
G:?Right, and we know that one of the things that?s been happening, which I think is great, you know much more about it than I do, is that it used to be that kids when they went in the hospital and then they went out to hospice care, it was a totally different staff when they went back in the hospital, and they?re trying to make that more ? a lot of states are trying to get Medicare so that the child can have the same health care providers.
S:?And I think there are wonderful programs.? I know I was out not so long ago in Los Angeles and I was visiting down in Houston where they are making that transition as seamless as possible between the in-patient care, the out-patient care, and the palliative care when that mode has to be invoked in the care of a child.
G:?Right, because that?s been quite a thing for the family.
H:?And there?s also, mom, David Browning?s program, and we had him on our show as well
G:?The IPPC program, do you know about that?
S:?Sure, yes, I?m aware of it.?
H:?He?s a wonderful man and doing wonderful work and getting together the medical community with those that are grieving and talking in an open forum about how people can provide better services for people that are grieving.
G:?Well, when we come back from break, it?s time to go on to break, I want to ask you another question, and my question that I just asked you, what should health care providers know and what I would like to ask you when we come back from break, what do parents need to know?? What?s the most important thing they need to know about their health care provider when they have had a loss?
Well, Stephen, when we went to break ? I just want to say something about Foster.? I?m just inspired to do that.? Stephen?s brother, Foster, who died in 1979, is that right?
S:?1980.
G:?I just wanted to say something about continuing bonds and how I almost feel like I know Foster.? I wish I?d known him and he just sounds like a fun guy and what I want to say is that those continuing bonds, you folks out there who have recently lost children, we know you?re worried that the world will forget them and that you will forget them, and it just gets richer and richer, doesn?t it?
S:?Absolutely.
H:?And I was going to add to that, mom, because I felt like that, too, during the show, and that Foster is really doing as much in his death as he did in his life through the work that his brother is doing for cancer.
G:?Right, and his spirit ? domitable and energetic, yeah.? Well, when we went to break, Stephen, I was saying to you what do parents need to know about their health care providers that have had children die?
S:?I think that a key issue is to recognize that the health providers are human and despite the veneer and the past exhortations and requirements that people not show their emotions, there clearly is an emotional engagement.? I can?t imagine, and I don?t know of any of my colleagues who have taken care of children and not had some kind of a bond so that when they lost that child and they felt as if a part of them were going and it?s recognizing that the loss extends to all.? Sometimes it?s a very very strong connection that may really then be able to be built upon and be the basis of the kinds of communications that are really, I think, essential to continue to talk about things and support people because to remember the wonderful things of a wonderful child and the things that they did either in the hospital or that you know of, those things are those magical things that help to define those kids that you never forget.
G:?In fact, you might even ? if you?ve had a wonderful experience, you might drop them a note.
S:?Exactly.
G:?I mean, that means a lot to get a little card saying thank you for taking care of my child because they?re ? a lot of them haven?t had the chance to grieve with anybody and that?s a lovely thing.? I had some health care providers ? I was at an event ? and they were saying that they really get torn about going to funerals and about getting involved because they can?t do it.? They work on pediatric intensive care units and they just can?t do that because it?s just too much for them, but they feel like they?re deserting the families and I said, you know what, all you can do is do what you can do because you will desert them eventually anyway because you have to.? You have to go on and keep working.
S:?Right, but I think it?s that personal recognition and the acknowledgement that in both directions that helps to cement that bond that would be, I think, comforting to the family that their child did touch people.
G:?Right, and that we?re all human, and in it together.
S:?They will be remembered and they will live on.? It?s just not being remembered it?s, I think, what you were talking about a minute ago, it?s living on so that others would know and be moved and say this was a good person.? This person touched someone else.? There are degrees of separation clearly, but you want to capitalize on that, not shunt them off and cut them off, okay?
G:?Um hm.? And you might as years go on, I?m not saying the first year whatever you might want to volunteer or do something or be involved in a run or setting up
H:?In memory of your sibling or child.
G:?Yeah, and letting the health care provider or hospital know what you?re doing.
S:?But I think that one of the important things is that most people, what I would say to families and loved ones is do that when you?re ready.? There?s no formula that you do it six months later or six years later.? Different people come to that point of comfort of recognizing and doing honor to the person they love.? Guide your instincts and not what you think is the formula or the process that somebody else thinks you should do.
G:?Absolutely, and sometimes it?s strangely enough that people feel like other people are doing it too early.
S:?Correct.
G:?That you shouldn?t be doing that yet.
H:?Like Stephen said, do what you feel comfortable with.? Don?t worry about what other people are thinking.
S:?To thine own self be true.? Really that Shakespeare was right.
G:?Right, and that?s a hard thing to do, too, because you feel like there?s a certain amount of judgment on what you do if you?re doing two things too early.? If you?re staying in bed too long.? If you?re not getting back to work.? If you are going to work too early.? It?s just amazing the judgments that get put on people.
S:?And the thing you have to be prepared for are those unexpected moments.? I?ll tell a very painful story.? As I went back and started working at the National Cancer Institute and seeing children in the clinics and wards, but I didn?t go into the intensive care unit for a number of months when I came back and the first time I walked in there, and that was the place that my brother had died, as prepared as I thought I was, I wasn?t.? It was a very upsetting experience just to walk in and I was going in for work to see a patient and to take care of something, and it took me a minute or two to really gather my thoughts and walk back in a second time.? I know why I?m here.? I now need to overcome this.? I gotta do what?s right.? I gotta make this better for this other person and grit my teeth and go forward, but it was a very unsuspecting moment that sort of crept up and was obviously very painful and very emotional.
G:?Oh, thank you for that comment because it just comes to get you every so often, doesn?t it Heidi?? You never know.
H:?Absolutely.? Grief can overwhelm us and we sometimes don?t know when that?s going to happen.
G:?Yup.? Well, it?s almost time for us to close our show.? Stephen, do you have a comment that you?d like to leave with our audience before we close?
S:?I think the most important thing is for families and loved ones who are going through the grieving process is to trust their intuition, to look within themselves, and then look to others as opposed to thinking that they have to look to others for the cue as to what to do.? You really have to follow what resonates and what makes sense to you in terms of the steps that you go through and the things that you do to honor the memory and carry on and put your life back together to go on to honor that person.
G:?Well, thank you so much for that comment, and it?s time to close our show now, and we want to thank Dr. Stephen Chanock.
H:?Thanks, Stephen.
S:?My pleasure.
G:?and talking about ?Pediatric Oncology,? and next week, our guest is going to be Dr. Robert A. Neimeyer, Professor and Director of Psychotherapy Research in the Department of Psychology at the University of Memphis.? He?s also the editor of the journal of ?Death Studies.?? This show is archived on our blog, www.thegriefblog.com, as well as www.thecompassionatefriends.org website.? Please stay tuned again next Thursday at 9:00 Pacific Standard, 12:00 Eastern, for more of Healing the Grieving Heart, a show of hope and renewal and support.? Remember, others have been there before you and made it.? You can, too.? You need not walk alone.? Thanks for listening.? I?m Dr. Gloria Horsley, with my co-host
H:? ?Dr. Heidi Horsley.? Dr. Chanock, your brother, Foster, lives on in your memories and in all the work you do.? Thank you for devoting your life to helping find a cure for cancer and saving lives.
S:?Well, thank you.? It?s been a great pleasure and honor speaking with you today.
H:?Thanks, Stephen. We appreciate it.

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