The following excerpt is taken from Chapter 16 of Childhood
Leukemia: A Guide for Families, Friends, and Caregivers, 2nd Edition by
Nancy Keene, copyright 1999 by O'Reilly & Associates, Inc. For book
orders/information, call (800) 998-9938. Permission is granted to print and
distribute this excerpt for noncommercial use as long as the above source is
included. The information in this article is meant to educate and should not be
used as an alternative for professional medical care.
Simply understanding
the depth of the pain and fears of your healthy children eases their path. Being
available to listen, to say, "I hear how painful this is for you," or
"You sound scared. I am, too," makes siblings feel that they are still
valued members of the family; that even though their brother or sister is
absorbing the lion's share of parents' time and care, they are still cherished.
Even if parents do not have large amounts of time to spend with them, siblings
need to hear that what they feel matters. If parents understand that these
overwhelming emotions are normal, expected, healthy, they can provide solace.
In the hope that
telling their stories will illuminate the difficulties faced by the siblings,
brothers and sisters of children with leukemia shared the following.
My brother's a legend
To Erin Hall (eighteen years old), her brother has become a
"legend" by surviving childhood cancer.
I'm really proud of my brother Judson
for handling everything so well. During those years there were times when I was
jealous of him, not only for the attention he received, but for his courage as
well. This little boy was going through so much and I still cowered at getting
my finger pricked. As I look back, I wonder if I would have been able to make it
through, not only physically, but emotionally as well.
According to
some people a person needs to be dead in order to be a legend, or to have been
famous, or well liked. A legend to me though, is someone who has accomplished
something incredible, enduring many hardships and pains, and still comes out of
it smiling.
Judd is a legend
to me because he didn't give up in a time that he might have. He is a legend
because he survived an illness that many do not. Now I look at him after being
in remission for almost five years, and I hope that someday if I am ever faced
with a challenge like his, I will have the same strength and courage he had.
My brother has leukemia
Eight-year-old Amanda Moodie experienced many ups and downs
when her brother had cancer:
Sometimes having a brother with
leukemia is fun, like when my family goes on the Fantasy Flight to the North
Pole, and going to the special summer camp, and getting special privileges at
Disney World.
But other times,
it can be really hard, especially when William gets put in the hospital. Right
now, he can't leave his room in the hospital, and the doctors wear masks when
they come in. I HATE seeing that. And he stays in for very long periods of time.
The first time, he was there for almost three weeks! It comes so suddenly. He
has stayed out for five months, then BAM! He's back in. And the worst of it is,
people are always pitying us. "Poor little boy." "Poor
William." I guess they like pitying us.
So, leukemia has
ups and downs like everything else, but to me it's mostly downs.
For brothers and sisters
Ellen Zimmerman discusses the impact that her cancer had on
her siblings. (Reprinted with permission from Candlelighters Youth Newsletter,
Summer 1994, Vol. XVI No. 3.)
I am the first of four children and the
only girl. When I was diagnosed with ALL at the age of fourteen, it affected all
our lives. My brother Wes was thirteen, Matthew was four, and Erik was two. They
and my parents were my support system.
When I was first
diagnosed and in the hospital, Dr. Plunkett asked if I wanted anyone besides my
parents present when he gave us the diagnosis. I told him I wanted Wes with me.
Wes is only fourteen months younger than I am, and we have always been very
close. He took it all in, and we all decided that we would face this thing, and
beat it, as a family. Then he and I sent our parents off so we could have some
private time together.
Wes was my
support at school and at home. He stuck up for me and kept an eye on me. I lost
some of my "friends" after I was diagnosed because of my illness and
their fear of it. Wes was always there for me. That's not to say we didn't have
our fights. Poor Wes-I could hit him, but he couldn't hurt me physically because
of my low blood counts. Sometimes I took advantage of that.
Matt and Erik
were also a great source of comfort and support. They would accompany my mom and
me to treatments and hold my hand when I got stuck. If one of them wasn't with
me when I went in, the nurses would ask me where they were. These little boys
made it easier for me to be brave.
I hope my
brothers know how much I appreciate, too, the extra time they gave me with our
parents during my illness. My parents were very good about splitting time
between me and my brothers. If one was with me at treatment or the hospital,
then the other was spending time with the boys. Family and friends were also a
big help.
I've been out of
treatment for ten years now. I teach second grade and spend a week of my summer
as a counselor at a camp for kids with cancer. I am the proud sister of three
Eagle Scouts. Wes is married now and lives in another state. I realize how much
he meant to me during that trying time and how much he means to me now.
If you are a
sibling to someone with cancer and wonder if you make a difference to your sick
brother or sister, I would like to tell you that you make a very big difference.
When my brother got cancer
Annie Walls (fifteen years old) relates a positive outcome to
her and her brother's battle with childhood cancer.
One experience in my life that was in
no way comfortable for my family or myself and caused me a lot of confusion and
grief was when my brother had leukemia. Along with the disruption of this event,
it also caused me to grow tremendously as a person. The Thanksgiving of my
third-grade year, Pres-ton, my brother, became very ill and was diagnosed a few
weeks later with having cancer.
This event
helped me to grow to become a better person in many ways. When my brother had
very little hair or was puffed out from certain drugs I learned to respect
people's differences and to stick up for them when they're made fun of. Also,
when Preston was in the hospital I was taught to deal with a great amount of
jealousy that I had. He received many gifts, cards, flowers, candy, games, and
so many other material things that I envied. Most of all though, he received all
the attention and care of my mother, father, relatives, and friends. This is
what I was jealous of the most. As I look back now, I can't believe that I was
that insensitive and self-centered to be mad at my brother at a time like that.
The thing that
made this a "graced" experience was the fact that it enabled me to be
very close to my brother as we grew up. My brother and I are now good friends
and are able to talk and share our experiences with each other. I don't think
that we would have this same relationship if he never had leukemia and I think
that has been a very positive outcome. Another thing that has been a positive
outcome of this event is the people I've been able to meet. Through all the
support groups, camps, and events for children with cancer and their siblings, I
have met some people with more courage and more heart than anyone could imagine.
In no way am I saying that I'm glad my brother had cancer, but I will say I'm
very glad with some of the outcomes from it.
My sister had cancer
Eleven-year-old Jeff Pasowicz explains what happened when
"My Sister Had Cancer." (Reprinted from CCCF Canada CONTACT newsletter
Vol. XVI No. 2 Spring 1994.)
My sister Jamie got cancer when she was
twenty-three months old. I was eight, and my two other sisters were six and
four.
My sisters and I
were scared that my sister was going to die. We weren't able to go to public
places and also weren't allowed to have friends in my house. We missed a lot of
school when there was chicken pox in our school. I got teased in school
sometimes because my sister had no hair. Once an older kid called my sister a
freak. My mom was sad most of the time. It was very hard.
We are all
pleased that Jamie is doing well, and our lives are getting back to normal. It
was an experience I'll never forget, and I hope it has made me a stronger
person.
From a sibling
Fifteen-year-old Sara McDonnall won first prize in the 1995
Candlelighters Creative Arts Contest with her essay, "From a Sibling."
Childhood cancer--a topic most teens
don't think much about. I know I didn't until it invaded our home.
Childhood cancer
totally disrupts lives, not only of the patient, but also of those closest to
him/her, including the siblings. First, I was numbed with unbelieving shock.
"This can't be happening to me and my family." Along with this came a
whole dictionary full of incomprehensible words and a total restructuring of our
(up to that time) fairly normal life-style.
One day in July
1988, I was waiting for my parents to pick me up from summer camp and
anticipating the start of our family vacation to Canada. When they arrived, they
informed me that my older brother Danny was very sick, and we wouldn't be taking
that trip after all. The following day the call came that confirmed the
diagnosis. Instead of packing for vacation, we packed our bags and headed for
Children's Hospital in Denver, 200 miles away, where Danny was scheduled for
surgery and chemotherapy.
I developed my
own disease (perhaps from fear I would "catch" what Danny had), with
symptoms similar to my brother's:
Sympathy pains.
I asked, "Why him?" when he came home from the hospital, exhausted
from throwing up a life-saving drug for three days.
Fear. "How
much sicker is Danny going to get before he gets well? He is going to get well,
isn't he?"
Resentment. My
parents seemed so worried about him all the time. They didn't seem to have time
for me anymore.
Confusion. Why
couldn't Danny and I wrestle around like we used to? Why couldn't I slug him
when he made me mad?
Jealousy. I felt
insignificant when I was holding down the fort at home.
The parts I
hated the most were: not understanding what was being done to him; answering
endless worried phone calls; and hearing the answers to my own questions when my
parents talked to other people.
I was helped to
sort out these feelings and identify with other siblings when I attended a
program held just for teens who had siblings with cancer. We got together, tried
to learn how to cross-country ski, and talked about our siblings and ourselves.
Perhaps you
remember this story: "US [speed skating] star Dan Jansen, 22, carrying a
winning time into the back straightaway of the 1000 meter race, inexplicably
fell. Two days earlier, after receiving word that his older sister, Jane, had
died of leukemia, Dan crashed in the 500 meter" (Life Magazine). Having a
sibling with cancer can immobilize even an Olympic athlete. Dan was expected to
bring home two gold medals, but cancer in a sibling intervened. He became,
instead, the most famous cancer sibling of all time. He shared his grief before
a television audience of two billion people. Dan later went on to win the World
Cup in Norway and Germany, and capture the gold at the Olympics. He is the first
to tell you the real champions can be found in the oncology wards of children's
hospitals across our nation, and the siblings who are fighting the battle right
along beside them.
Siblings: Having our say
Naomi Chesler gives advice to parents and siblings of those
with childhood cancer.
Twelve young people aged 7 to 29 met at
the 25th Anniversary Candlelighters Conference to talk about what it is like
having a sibling with cancer in the family. We talked about our families, our
anger, jealousy, worries, and fears, and thought about what we wanted to tell
others about our experiences. In fact, we made lists of things we wanted other
people to know: one for parents, one for other children or young adults in our
position, and one for the child who has been diagnosed with cancer.
Some parts of
these lists reflect anger and bitterness, but that was not the overriding
feeling in the session. I hope it isn't the only message you take away. If
nothing else, the issues raised here may provide you with a good starting point
for discussions in your own family.
To parents:
·
We know you are burdened and trying to be fair. But try harder.
·
Give us equal time.
·
Be tough on disciplining the child with cancer. No free rides.
·
Put yourself in our shoes once in a while.
·
If you are away from home a lot, at least call and tell us,
"I love you."
·
Tell us what is going on. Don't just sit us in front of a video
(about cancer); talk with us about it.
·
Keep special time with us like lunch once a week or something.
Time for just us. And if you can't be with us, find someone who can.
·
When you talk to family members, say how everyone is doing-what
we are doing is important, too.
·
Ask how we are feeling. Don't assume you know.
To siblings of
newly diagnosed kids:
·
Keep a diary if you don't want to talk to your parents.
·
Expect to not get as much attention.
·
Expect that your parents are going to be extra cautious about
what your brother/sister does, who he/she hangs out with, etc.
·
Hang in there. You're all you've got for now.
·
Don't feel like you have to think about the illness all the
time.
·
Be understanding of your parents and stay involved.
·
Tell someone how you are feeling-don't bottle it up.
·
Go to the hospital to visit when you can.
·
Make as many friends as possible at school.
To our siblings
who struggled or are struggling with cancer:
·
The world does not revolve around you.
·
Stop feeling sorry for yourself.
·
Not everything is related to cancer. Stop using that as an
excuse for everything.
·
I'm jealous of you sometimes, but I'm not mad. I know it
sometimes seems like I'm mad, but I'm not.
·
Don't take advantage of all the extra attention you get.
·
Tell mom and dad to pay attention to me sometimes, too.
·
Now that you are feeling better, where's the gratitude for all
those chores that I did?
·
I really admire your strength and
courage. I wouldn't have gotten through your illness without you.