Childhood Cancer

Childhood Cancer

Sibling experiences

Simply understanding the pain and fears of your healthy children eases their journey. Being available to listen and say, “I hear how painful this is for you,” or “You sound scared. I am, too,” reminds siblings they are still valued members of the family. They need to understand that even though their brother or sister is absorbing the lion’s share of their parents’ time and care, they are still cherished. Siblings need to hear that what they feel matters, especially if parents do not have a lot of time to spend with them. If parents understand that overwhelming emotions are normal, expected, and healthy, they can provide solace to all their children.

Brothers and sisters of children with cancer shared the following stories about some of the difficulties they faced.

Silent hurting heart

Dayna E. wrote the following poem when she was 13 years old. Two of Dayna’s brothers had cancer—one lived and one died.

“Oh, nothing’s wrong,” she smiled,

grinning from ear to ear.

The frown that just was on her face

just seemed to disappear.

But deep down where secrets are kept,

the pain began to swell.

All the hurt inside of her

just seemed to stay and dwell.

All the pain in her heart

was too much for her to take.

Pretending everything’s OK

is much too hard to fake.

She’d duck into the bathrooms

and hide inside the stalls.

Because no one could see her tears,

behind those dirty walls.

She was sick and tired of losing

and things never turning out right.

She had no hope left in her.

She was ready to give up the fight.

But she wiped away the teardrops,

put a smile back on her face,

pulled herself together, and

walked out of that place.

Life went on and things got better.

She thought that was a start.

But still, no one could see inside

her silent hurting heart.

Alana’s story

Alana F. (11 years old) remembers how family life changed when her sister, Laura, had cancer.

Having a sister with cancer

My sister was in fifth grade and had been sick for the last week or so. Laura always seemed to be my hero. Although we got into arguments, all siblings get into fights, so I didn’t worry. I didn’t know what was about to happen, but neither did anyone else.

I don’t quite remember how my parents told me she had cancer, but I do remember a lot of tears.

As time progressed, my life changed. I lived with my best friend and her parents, Catherine and Bill, but that changed too. Kelsie (my friend) and I got into a lot of arguments, but we still do. I don’t know if that is why my grandmother and grandfather moved up to live in our house so that they could take care of me. Living with them was different. My grandmother had different expectations of me than my mother did.

My parents would each take turns staying at the hospital. Some nights I would live with my mom, grammy, and grandpy; and the next it would be with my dad and them.

Of course going through this dilemma I felt left out. Here I was living with my grandparents, and my sister got to live with our parents. She got lots of flowers, cards, and gifts, and all I got was the feeling of love from my relatives. I know that love is better than material things, but when you are 6 years old, you don’t think so.

Things stayed the same for a long time. Then my sister went into remission and started living at home. I had to get used to my parents again and missed my grandparents.

My sister was spoiled at home, too. They bought her a waterbed, so she wouldn’t get cold. What did I get? A heating blanket; a used heating blanket.

Alison L. (6 years old) describes the experience of having a sister with cancer.

My brother’s a legend

I think having a sister with cancer is not fun. My mom paid more attention to Kathryn, my sister. I had to stay with Daddy. Mommy picked Kathryn up and not me. I wanted my sister’s PJs. Guess what? I did not get them! Although my mommy wanted to stay with me, she did not want to leave my sister alone. Sometimes I felt like I was going to throw up. But now it has been 2 years since she has stopped having medicine, and she is completely better. To celebrate we are going to Disneyland.

To Erin H. (18 years old), her brother has become a legend by surviving childhood cancer.

When my brother got 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 5 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.

Annie W. (15 years old) relates some ways she benefited from her brother’s battle with childhood cancer.

My sister had 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 cancer. Along with the disruption of this event, it also caused me to grow tremendously as a person. The Thanksgiving of my third-grade year, Preston, 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 cancer, 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.

Eleven-year-old Jeff P. explains what happened when “My Sister Had Cancer.” (Reprinted with permission from Candlelighters Childhood Cancer Foundation Canada’s CONTACT newsletter.)

From a sibling

My sister Jamie got cancer when she was 23 months old. I was 8, and my two other sisters were 6 and 4.

My sisters and I were scared that Jamie was going to die. We weren’t able to go to public places and also weren’t allowed to have friends in our 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.

Fifteen-year-old Sara M. won first prize in a Candlelighters Creative Arts Contest with her essay, “From a Sibling.” Her work is reprinted with permission.

Siblings: Having our say

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 lifestyle.

One day 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 1,000 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.

A group of siblings at a national conference gave advice to parents and siblings of children with cancer.

Twelve young people aged 7 to 29 met at the 25th Anniversary Candlelighters Childhood Cancer Foundation 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.