Day by Day: Children of a Seriously Ill Sibling Tell their Stories of Faith

Christine Frisbee, Day by Day: Children of a
Seriously Ill Sibling Tell their Stories of Faith May 18 , 2008Welcome to Yale Cancer Center Answers with Drs Ed Chu and
Ken Miller.  I am Bruce Barber.  Dr. Chu is Deputy
Director and Chief of Medical Oncology at Yale Cancer Center. Dr.
Miller is a Medical Oncologist specializing in pain and palliative
care, and he also serves as the Director of the Connecticut
Challenge Survivorship Clinic.  If you would like to join the
discussion, you can contact the doctors directly at canceranswers@yale.edu or
1-888-234-4YCC.  This evening, Dr. Ken Miller welcomes
Christine Frisbee.  Christine is the Chair of the Richard D.
Frisbee III Foundation, and she joins us to talk about her new book
Day by Day, which documents her family struggle with
leukemia.Miller
 You wrote a beautiful book. Tell us a little bit about Rich.Frisbee
 Rich was our second child, our first son.  He was growing
very tall and very thin and had just started at New Canaan High
School right before he was diagnosed with leukemia in September of
1988.  Having 5 children, everyone was very well.  We
were very, very shocked to hear that he had leukemia but once we
found out we realized that he had had the symptoms for quite a long
time, but they had not presented themselves strongly enough where
one would know that he had leukemia.  He was a smart boy, not
number 1 in his class, but a smart boy, and he was very athletic.
One day he came home from school and said, "Mom I could not run
down the soccer field and I failed my French test," and he
cried.  Rich was not the type of child who cried easily, and I
just thought he must be awfully tired from starting at New Canaan
High School.  I told Rich that the teachers were pushing him,
that they want him to do well, that they can be very serious the
first week of school to make sure you do well. I told him to stay
home and catch up on his rest.  He had been away at a summer
camp before and I thought he might just be exhausted.  So he
stayed home and I was doing an antique show in Greenwich and I came
home at lunch time to check on him. He said he felt faint and I did
not like the sound of that so we went to the doctor's office
immediately. The doctor did many more tests than a pediatrician
would normally do and he said to call him that night.  This
pediatrician, Dr. Flynn, had 9 children and he never really spoke
like that.  It was of great concern that he would act in such
an imperative way at the time, and so we called him that night and
he that we had an appointment at Yale in the morning, that it is
serious.Miller
 It has been many years, but do you remember that phone call as if
it was yesterday?Frisbee
 I do.  I remember where I was standing.  I remember
where my husband was.  I remember him saying to me, "What he
did say, what he did say, what he did say?" And I told him he said
it is serious.  He asked what else he said, and I said I could
not ask anything else.  I knew he meant it.  I told him
we had to get to sleep because we have to be at his office at 7:30
in the morning with Rich and a bag packed.3:28into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_May-18-08.mp3Miller
 How did you share that with Rich himself, that something was
serious and that you needed to go to the hospital.Frisbee
 I told him calmly.  I knew that the doctor meant it, but I
still thought that maybe he made a mistake. So we were going very
fast up 95 the next morning and there was a song playing on the
radio that was popular then, "Don't worry be happy", and Rich
turned to me and he said, "Don't worry mom, be happy, it is not
bad."  But within a few hours he had chemotherapy infused into
him to start treatment right away.Miller
 Can you tell us a little bit about that first day? How did they
make the diagnosis and what was that experience like for all of
you?Frisbee
 My husband Rick and I went into the emergency room.  It was
the old hospital then, they did not have the new Children's
Hospital at that point, and Dr. Diana Beardsley was waiting for us.
She said that she had to do a couple more tests so they brought
Rich into a procedure room and they did a bone marrow biopsy and
aspiration. Then they asked us to leave the room and she told us
that Rich had leukemia. I asked if she was sure and she said they
were pretty sure, so I left in my mind the hope that maybe they
were not sure.  She told we could check into our room and Rick
and I were crying and completely in shock.  We did not really
know what leukemia was and we thought that something had to be
wrong.  I mean, he was not that sick.  He was just
tired.  How could he be that sick?  I immediately got on
the phone in the emergency room and called my mother and tried to
say what was going on. She said we have to get other opinions and
all of this commotion that so often happens when somebody is
diagnosed with a serious illness.Miller
 We were talking earlier that in our family, we got a similar shock
when my wife was diagnosed with leukemia. There is a sense of
disbelief because life goes from being pretty normal one day to
being very, very abnormal the next.Frisbee
 It does, and I often talk about it as being the first day of the
rest of my life. It changed our lives completely, that illness, and
Rich did pass away, but even if Rich had lived it would have
changed our lives forever. The reality of those harsh moments in
life really does zap something out of you, and into you, that makes
you look at life differently.Miller
 I want to talk about what zapped in and what zapped out. 
What made you decide to share this story now?Frisbee
 I ended up working in the field after Rich passed away and I found
that there was such strength in the families that I worked with. I
searched for unrelated donors for families and sometimes we would
work for over a year with these families and7:10into mp3 file 
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 I watched the children come into the clinic and leave the clinic,
month after month, and I got to know the children and the families
very well. I felt such a bond with them and eventually it came to
me that I wanted to know how my children felt about all of these
experiences that they had been through. I asked Meg and Mary Jane,
the two youngest, to write stories for me with the idea that I
would love to get stories from many children because I felt that I
really did not know how they felt until they put it down on
paper.  You talk about things, but you do not talk about
things in as much depth sometimes as you should. They put things
down on paper that I never knew they felt.  I had this as an
idea that I wanted to work on, but I did not know how it would
develop and it has taken a long time to reach our goal in getting
the stories together.  It was very hard to get stories from
other people, it was very hard for them to write down on paper how
they felt, a lot of people would not.Miller
 Because it was too painful?Frisbee
 Because it was too painful.  They did not want people to know
how they felt, but I hope that the book will show those people who
found it so hard, that there is a common thread between all of
these people. It is not a bad thing to feel pain or anger or
embarrassment.  They should, it is normal.Miller
 Along those lines, talking about Rich, I think a lot of people
would say they are afraid to bring it up with you because it is
going to be painful, but let me ask you, is this okay to talk
about, it is okay for people to ask you about it?Frisbee
 It is, and I think for me it is part of who I am now and I am
proud that we were able to survive it and be happy.  Our
family is very, very happy.  We acknowledge that this
happened, it is painful, but you can stand up and move forward and
be very happy in life and I look at everyday as a joy. 
Everyday brings new things to me and that is one of the things I
wanted to show by having these stories written by the children;
they are inspirational.  They write about how they are not
sorry that this happened to them, that they see good things in life
and they want to help other people that they respect all the
differences in people. This is what I hope to achieve from the book
because it is really what I feel.Miller
 With your children, you mentioned that what they had to share
about their experience with their brother was different than you
might have expected.Frisbee
 Yes.Miller
 In what ways?Frisbee
 Some of them expressed a lot more anger at what happened and how I
handled things at the time.  They did not express to me then
how angry they were that I10:29into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_May-18-08.mp3could not be there for the soccer games, that I did not give the
right response when they asked to go to the dance, or why I
wouldn't buy them that dress. Often I would be exhausted and I
would snap at them and I would be rushing around trying to balance
everything out and I thought they sort of understood, but then I
realized that they did not and it made me very sad to think that I
was not able to be all things to all people during that time in our
lives.Miller
 The way I look at this is in many ways a process.  You now
have more years to look back on this experience. As I listen to
what you say, you are just a person doing the best you can with a
very, very difficult situation.  Is this something you are
able to feel comfortable with, or is it still a sore point?Frisbee
 No, I am able to feel better about it.  I know that you have
read the book and just recently actually I gave it to my children
to read. One of my children wrote me what she felt about it and she
had very strong points. She realized how hard it was for me for the
first time, she realized that I felt I was incapable of being all
things to all people and she felt compassionate about it.  I
thought "wow" we still are going through our own healing process as
a family.  Even though I think we have done well, it was Meg
who actually wrote this to me, and she said "Wow mom, this is
amazing, I never realized that you felt that way, all I realized
was how I felt." She said that now she knows how hard it was for me
and that she thinks it is so wonderful that we are all going to
understand each other better. It is going to be a wonderful story
for parents and a wonderful story for children too, and again our
healing process is ongoing so that was so nice for her to say.Miller
 When people are in the midst of a crises, or have lost a loved
one, a son or a daughter, a spouse, a sister or a brother, there is
a feeling that you cannot go to the next day, you cannot make it to
the next day, and it is interesting and reassuring to hear that the
healing process goes on, and it is okay that it takes a lot of
time.Frisbee
 It is okay, I mean this all happened almost 20 years ago.  It
was a long time ago and I really do feel that we will be healing
for the rest of our lives, but everything that happens in our lives
is a process and I do not think that everybody realizes that
everyday, everything that happens to you is a process that you can
take and help develop your character and make you stronger and more
positive.  It is all in the way you look at it.Miller
 We would like to remind you to please feel free to e-mail your
questions and thoughts to canceranswers@yale.edu. 
We are going to take a short break for a medical minute. Please
stay tuned to learn more information about coping with cancer and
your family and about some of the processes of recovery afterwards
with Christine Frisbee.14:10into mp3 filehttp://www.yalecancercenter.org/podcast/Answers_May-18-08.mp3Miller
 Welcome back to Yale Cancer Center Answers.  This is Dr. Ken
Miller, and I am here tonight with Christine Frisbee who is Chair
of the Richard D. Frisbee III Foundation and author of a new book
that is about to be released entitled Day By Day.
Christine, we have been talking about your son Rich.  Let me
ask about your other children, how old are they now?Frisbee
 Kristen, the eldest, is 36; Rich would have been second; Jim is
30; Meg is 26 and Mary Jane is 24.Miller
 It is impossible to know how life would have been different if
Rich had not gotten sick, but how do you think your children may be
different than they would have been otherwise, in good or bad ways,
and how are you different for that matter?Frisbee
 Well my eldest daughter goes through life treading very
carefully.  She has 3 children of her own right now and
anytime one of them is sick she is very fearful that something very
serious will happen to them.  It has affected her very, very
much, and she was very angry for a long time. Between the two of us
there was a lot of anger and it took years and years for her to
realize that I did the best I could. She had to just be angry at me
for whatever she needed to be angry at me about, and eventually she
got over it.  Jim missed his only brother.  His brother
used to be the more aggressive one and used to beat up on him when
they were little. He talks about that in the stories.  I think
it made Jim very shy.  He had a hard time going through
school.  He was the quieter one of the boys and probably the
most quiet of all the children.  I do think that he reflects
back now, and it gives him great strength.  He is a wonderful,
kind individual, married for a year and a half and is an architect
and he is quite remarkable.  Meg was very difficult at
first.  She was acting out at school.  She was only in
second grade when Rich was diagnosed, and she was Rich's
donor.  He had a bone-marrow transplant, and she was his
donor. She writes in her story about how all she wanted to do when
she17:35into mp3 file 
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 was his donor is be wheeled around in a wheelchair, even though
she did not need it, and be considered a queen because she was so
sick of everybody giving Rich the attention, and she wanted a
little attention of her own. She was very difficult at the time and
I was talking to a friend about how it has really affected Meg. She
suggested putting her in the swimming pool and letting her swim
year around.  Well, we did, and Meg ended up becoming a
fabulous swimmer, a nationally recognized swimmer, so something
good came out of her eagerness to show me how she felt.  Mary
Jane, she was the youngest and she does not really remember it that
much, but they say the youngest actually are the most affected. I
think it is true because for Mary Jane her memories of growing up
were always of a family that had lost a brother, and the others
knew Rich better, she was so young, she was only 5 when Rich was
diagnosed and died.  That is an awfully young age to try to
remember everything about Rich.Miller
 For you and for your children having the opportunity to write
about this, and also for the other people that contributed to the
book as well, is there a sense of healing by having shared the
story?Frisbee
 Yes.  Most of the children who contributed, and young adults
who contributed, were so thrilled to write their story.  They
are so excited for the book to come out.  They thought it was
such a healing process to tell people how they felt and what it was
like for them, and although some people were afraid to contribute
stories, I do think the ability to voice what they felt is such a
healing process for everyone. There is a common thread in the
stories amongst all of them, even though all of the siblings had
different illnesses.  They are not all about cancer, although
there are many that have brain tumors and leukemias.  There
are also stories of children with an autistic child in the family
and many different things.  There still is a common thread in
that they have been asked to be soldiers and be strong and make
something positive out of a difficult situation.  It is really
remarkable that not even knowing each other, they all told the same
story and were very grateful to tell their story.Miller
 It is wonderful to have an opportunity to read it because I
learned a lot by reading those stories.  Let me ask you, as an
oncologist and for physicians that are listening, how can we better
be of help to families going through this experience?Frisbee
 When an oncologist, hematologist or any doctor is dealing with a
family that has a sick child, they need to also ask the parents how
the other children are doing, how the family is doing.  Ask if
anyone else needs attention, if you need to bring in help, a social
worker or a religious person to come and support you, do your
schools need somebody to talk to them?  The Leukemia Society
had a program for schools when Rich was sick and one of the
teachers, actually two, came up to it and it made the world of
difference that all of a sudden they knew what the whole family was
going through. I really do think that if the doctors, nurses
and21:33into mp3 file 
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 physician's assistants could pay attention to the whole family it
would really be helpful.Miller
 Very well said and I think it is an important reminder for all of
us.  Aside from writing the book, which has been a huge
commitment and a wonderful gift to all of us, you have been very
active in supporting cancer research and children who are going
through this experience.  Can you tell us about the Richard
Frisbee Foundation?Frisbee
 As I said earlier, when Richard was diagnosed, I was an antique
dealer and I was doing an antique show in Greenwich. The people who
ran those shows, Diane Wendy and her daughter Meg, said to me, "Why
don't we do a fundraiser to raise money for Yale?" We had gone to
an antique show to buy a painting for the new bone marrow
transplant unit and they said let's not just buy a painting, let's
have an event.  They decided to run an antique show, which was
held in Coxe Cage here at Yale, and another friend of mine said,
let's have a dinner dance as well.  All of a sudden we started
the foundation.  It was not my plan to start it but there it
was.  I'm one of those people who feel that
the door opens, you make a decision.  You either walk through
or you don't, and I decided to walk through that door.  For
the last many years, we have been running different events and the
money goes to support cancer research, education, direct patient
care, everything from therapy for the children in the hospital with
different illnesses to housing for patients who come from afar to
get treatment at Yale and research at many different institutions
and nursing scholarships, which we have provided about 25 of
now.Miller
 It is very exciting.  How long has the foundation been in
existence?Frisbee
 We established it in 1990, just a year after Richard passed
away.Miller
 We were talking earlier about how the book will be out very, very
soon.  Who are some of the people that you think is the
audience for this book?Frisbee
 The audience is very wide actually.  I hope that the book
will be read as an inspirational book, and as you know, some of it
is a very hard read.Miller
 Yes.Frisbee
 The stories are very, very touching, but I do want people to take
away from it that it is applicable in many different situations,
not just children with cancer or children with other
illnesses.  I hope that schools will provide this book so that
all of the children in the school can be sensitized towards what
these children go through when somebody has a sick sibling in their
family.  I hope the doctors will read it and nurses will read
it.  I hope teachers will read it and in the best world,
it24:48 into mp3 file 
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 will be a book that many, many people will reach out to read for
inspiration, for knowledge and to help them understand the world
and that we all go through bumps, but we can hopefully take those
bumps and smooth the road out for each other to make life a little
easier.Miller
 I just want to share with you that I got a real sense of hope
reading the book. Looking at people sharing very odiously very
tough situations that they have been in, and how hard it was many
times, and also the sense of resilience.Frisbee
 The resilience is amazing.  Children can share their
resilience with adults and adults need to be reminded that they can
bounce back like children do.Miller
 This may be a tough question perhaps, but is there anything that
you would have done differently as you look back? We now are
looking back 20 years ago, but is there anything you would do
differently, or any sort of words of advice for other parents going
through a tough situation like this.Frisbee
 Yes, a few things.  I would have spent more time discussing
things with my other children, not assuming that they understood
everything that I was doing or everything that was going on. 
That is the one thing that is so clear to me in their stories. They
said I did not communicate enough to them.  I would
communicate more.  I would also try to communicate more with
their teachers to make sure they were okay in school.  Those
are the most important things that I would change if I were to do
it all over again.Miller
 Perhaps another difficult question, but if Richard was here
reading the book as an adult, what would have been his
comments?Frisbee
 He would say, "It is good mom.  It is really good."Miller
 It is a wonderful feeling.  In reading the book, I did not
know Rich, but it made him alive for me.Frisbee
Thank you.Miller
 This is a wonderful book and I want to recommend it and thank you
for writing it. I want to share that the proceeds from the book
will go to support other projects at the Yale Cancer Center, which
is very, very wonderful.  Christine, I want to thank you for
being with us tonight.Frisbee
Thank you so much for having me.  It was a treat.Miller
 Yes, and for me too. I want to send you our wishes from the Yale
Cancer Center27:37 into mp3 file 
http://www.yalecancercenter.org/podcast/Answers_May-18-08.mp3for a safe and healthy week. We hope you will join us again.If you have questions, comments, or would like to subscribe
to our Podcast, go to www.yalecancercenter.org were you will also
find transcripts of past broadcasts in written form.  Next
week, you will meet Dr. David Leffell who joins us to talk about
skin cancer prevention.