What about the siblings

Highly Recommended Websites: Supersibs.org and CancerCare.org

Parents: I hope to encourage you to take a closer look at support for siblings. Sign them up for SuperSibs!

Friends: If you are a friend or relative of a cancer patient, I hope to help you understand some of the feelings that the siblings carry. I have heard several young siblings say that they wished they were the ones with cancer. “The cancer kids get lots of presents and attention.” Some siblings feel guilty for being the healthy one.

The truth is… they are and will become who they are because of their journey with cancer. Some will become more compassionate and giving than any parent could ever teach. Some may become scientists or doctors. Others may become very depressed, carrying painful feelings of helplessness. Look for these signs and help them bring the positives to the surface. They could use an encouraging word, card or a special treat. Siblings are heroes, too.

Tip: Have you ever talked to your kids in the car? You are busy driving and they do not have to look you in the face. You might get some pretty good results of conversation.

During the last couple months of Joseph’s treatments, I asked my boys (12 years old at the time) to make a list (independently) of all good and bad things about our journey with cancer. I expected the “bad list” to be quite large. And it was, but to my surprise the “good list” was pretty big, too. These were the things that I knew made them happy and we tried to focus on that.

My main reason for having them make a list is to see what sticks out in their minds. My boys appear to be very verbal about how they are feeling, but I felt the need to dig a little deeper. I’m glad I did. Some of the things that I thought went un-noticed or things that I thought were OK were in fact things that I needed to confront. I wish we had done this list two years earlier.

Stephen and Michael are open to share with you some of their deepest thoughts during the days of treatment, and I share my responses to them.

There are no right or wrong answers here. Some of these things may or may not have happened all the time. Their responses to the “Good/Bad List” are how they felt and are what was in their hearts.

“The Bad List” about cancer is:

Michael and Stephen got used to seeing their little brother getting shots, having IV lines, and losing his hair, but it still bothered them to see him sick.

· “I have to watch kids struggling for their lives cooped up in a hospital bed or sitting in a wheel chair”

· “Even though he gets treatments and shots all the time, I don’t like seeing him in pain”

My response to them: I agree with you. I also feel bad for all the sick kids at the hospital. Please tell me if you see a sick child that makes you feel sad. Maybe I could explain their sickness to you. I’ve come to know quite a few of the kids here. Would that help if you ask me about a kid that you are concerned about?

Maybe we can make him/her a card or get them a small gift to let them know that you care about them, too. These kids like to know that people care about them. Some kids who are there for a long time sometimes feel forgotten about.

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Another common complaint between the two boys was that their parents were “cranky” sometimes and that Joseph was in a bad mood when he got home from the hospital. Basically, nobody ever knew who was going to crack when.

· “I get yelled at by someone who’s 7 years younger than me who has cancer and is in pain. I feel guilty if I yell back.”

· “Needles go into my brother like he’s a Voodoo doll.”

· “I see my little brother in pain a lot.”

· “My parents are tired and cranky a lot.”

My response to them: Yes, Dad, my three boys and I are depressed, stressed, confused, worried, tired, and so sick of “Planet Cancer.” You must know that some day this will all be behind us. All these moods and emotions are temporary. Temporary seems like forever, doesn’t it? I am sorry if I seem cranky at times and I am tired a lot. When I get home from the hospital, I want to see you so bad and do fun things with you. It may seem like I am mad, but I am really frustrated with myself that all my body wants to do is collapse on the couch. When I get home, I need an hour or two to shift gears from “Planet Cancer” to “Planet Earth” and then we can hang out.

I hope this helps you to understand how I feel, too. I love you so much and even though I may have been a little cranky on the outside, I am smiling on the inside just to be with you when I have that chance.

It must be so hard for you to have such a smart, cute little brother and it seems like all he does is scream and yell like a “drugged maniac.” I hate to see him like that, too. It is so hard to put that aside and just adore him. He talks about you a lot. He loves your sense of humor. He reminds me of you when you were his age. You are so patient with him and so good to him. He appreciates the days that you spend visiting him in the hospital. I know it is boring for you sometimes, but you are giving just a little of your time that means a lot to him. Taking that small chunk of time out of your week is a huge chunk of time in the thoughts and memories for sick kids, like Joseph. Thank you for being so patient with the mood swings of this family.

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This one caught me by surprise. They both commented that when they are out doing something fun, they had a hard time enjoying themselves knowing that their parents and brother were in the hospital not able to enjoy what they were.

· “I can’t enjoy anything fun knowing my Mom is in the hospital”

· “My parents feel bad for me even when it’s not that bad for me, but worse for them.”

My response to them: Please enjoy yourself! When you’re having fun… have fun! I appreciate your thoughts of us in the hospital, but you need to be a kid. I’m a Mom – I’m supposed to be here taking care of my little boy. Aside from medical treatment, most of the time we are playing, crafting or drawing and having fun ourselves. I know how to make a good time. I can assure you that they take very good care of me at the hospital, too. And, there are other moms and nurses that I can talk with and make my own fun. So, please have “FUN” when the opportunity is there. I love to hear that you are having “FUN.” Of course I wish we could all be together and that is what makes me feel bad. However, I am confident that you boys are mature enough to use good judgment and take care of yourselves. Also, I am so grateful that your uncles, cousins, friends, etc., are so good at making sure you are taken care of.

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· “No one is home when I get home from school (but that’s not too bad).”

· “I only have one parent at home with me at a time.”

· “I know I’m not forgotten about, but I can’t help feeling like it sometimes.”

· “It’s hard to do work in school.”

· “I have to try extra hard on homework.”

· “It’s hard to read a book and stuff when something is going on in the hospital.”

My response to them: I know that I am not home much when you get home from school. This was the reason that I quit my job – so that I could be home for you. This was not part of my plan for motherhood. I am relieved that you are mature enough to let yourselves in the house AND complete your homework on your own. Every day at 2:30 I am thinking of you – all grown up with your own house key. I am so proud of you that you utilize your “alone time” wisely. Dad and I get to spend special alone time with you when there is only one of us home. Even though one of us is at the hospital, it doesn’t mean that you are forgotten. Dad and I always have a close eye on you… always.

I realize that it must be hard for you to do school work. I have a hard time concentrating on “Planet Earth” stuff myself. You guys are going through a very unusual and rare experience. Life is hard enough and then you get homework thrown at you. It doesn’t seem fair, does it? Try to tackle your homework as an extra challenge. Try to focus on school when you are in school and save your “Planet Cancer” thoughts for later. Your school knows your situation and your teachers are more than happy to give you a little extra help if you need it. They even said that you could call me during the day if you want. I want to encourage you to get excited about your dreams of your future and absorb all the knowledge that you can get. Like I said, take it on as an extra challenge.

I am so proud that you both have worked so hard to be able to bring home such good grades.

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It seems like the rest of the world goes on…

· “I miss out on going on vacations.”

· “February vacation, we do nothing.”

· “Everybody thinks I’m on “vacation” when we travel for Joseph’s treatments.”

· “I have to catch up in school after we travel.”

· “People don’t understand.”

· “We have to mess up plans and go to the hospital when we don’t feel like it. It seems like we are away from home a lot… unexpectedly.”

· “Nobody gets what we are going through. They try, but just go on with their lives.”

· “People don’t know that my brother and I suffer, too.”

My response to them: I do understand the feeling of being left out of the normal things in life that other people do. They spend time planning vacations while we live day-to-day not being able to make any commitments. If there is a positive side on the subject of vacations, I think we have done pretty well. Joseph is very tough and stays strong just to have fun. Remember when he had a tumor removed from his neck and in a few days he was at the Cape playing at the beach? You boys get to spend a lot of time in New York City, too. I bet none of your friends got to stay in NYC for $20.00 a night during the Christmas season (hee hee). Remember that big beautiful Christmas tree and all the other sites that we visited? It was amazing at how much we could squeeze into a weekend. And you got to eat a real Philly Cheese Steak in Philadelphia. That was an interesting city, too. Don’t forget about our Make-A-Wish trip to Disney. They made us feel like we were the most important people in the world. The memory of that trip will certainly last a lifetime. So, I guess we couldn’t plan our own vacations where we wanted to be, but I’m glad that we were able to be together, most of the time, while we were away from home.

I often had people ask me why I didn’t see this or that while I was away, too. We had long tough days in the hospital and yes, sometimes I wish people recognized that, too. In a way, if they all knew what we went through, they would feel bad for us. I don’t know about you, but I’d rather they see our strengths and positives than our weaknesses and sadness. Most people do not understand and you cannot expect them to. Thank God they are not experiencing what we are. Everybody means well and would never want to hurt you with their words. The people that do “get it” are the families at our clinic. The kids in your “Very Important Brothers and Sisters” meeting… they get it. Treasure that special understanding and closeness with them, as I do with the other cancer moms.

I was happy to read so many things on the “Good List.” I did not expect this list to be so big. There was no need for my response to these. I was happy that they could find some positives on their own.

“The Good List” about cancer is:

· "Having people spend time with us, like at airports, Harvard Square, dinners, movies and sleep-overs."

· "Rewards like the Make-a-Wish trip to Kissimmee, Florida (Give Kids the World), and Disney World."

· "Special events that may be related to cancer people, like the dog agility show (“On Course for Kids”) and all that stuff."

· "Little fun thingies like the tour to NBC studios and VIBS (Very Important Brothers and Sisters) group meetings."

· "Presents and mail from 'SuperSibs.'"

· "Everyone with cancer is like a big family that helps each other. I’ve met some nice people."

· "Very nice doctors and nurses who actually spend time to talk to ME sometimes. They let me ask questions about my brother, too."

· "We get to spend time with my mom at a very cool place to stay called 'The Neely House.'"

· "I get to visit major cities, like NYC, Philadelphia, Dallas, and Boston, where my brother has treatments."

· "I spend a lot more time with relatives and friends. They surprise us with gifts and dinners."

· "I learn a lot about medical things."

· "I get to explore Boston."

· "I get to miss school sometimes!!!"

· "We get to eat at restaurants a lot."