Teenagers and Cancer
A cancer diagnosis is difficult at any age. Teenagers and their families face unique challenges with diagnosis, treatment, and beyond. Our son, Bucky, was diagnosed when he was 17 – just at the end of his junior year of high school. He was the high school’s pitcher for the baseball team and they were headed to the playoffs. His pitching arm became strangely sore, so we took him to the doctor. Ten days later we had his diagnosis: Ewing’s Sarcoma. Bucky started chemo immediately, checking into the hospital every other Monday for 3-6 days at a time. He had three surgeries to remove his cancer-filled right radius and reconstruct his arm. This was not the senior year he had planned.
Bucky Ribbeck
During the nine months of treatment, we met several other teens that were fighting cancer. Many of them shared similar challenges with their treatment and with their lives. Unlike a young child with cancer, a teen has already established his own life. They have budding social lives and they are involved in many activities. They will not be content to just hang out with mom or dad in their hospital room watching Barney videos.
Here are a few lessons that my friends and I learned about our teens and cancer:
Surviving in the Hospital
Hospital rooms are made to be functional and easy to clean. They have come a long way, but to call these rooms comfortable might be a stretch. We were fortunate that our main hospital provided rooms with day beds for parents, televisions, and big windows. Bucky had his surgery at another hospital with fewer comforts – I slept in a vinyl recliner with one sheet and our window was as big as a loaf of bread.
Given this, we tried to make the room homey without cluttering it up. Friends brought gifts that we brought back with us every time. One friend brought inflatable letters strung on fishing wire that spelled his name. We hung this across the window. We also made a sign for the outside of his room door that we brought with us every time. His friends enjoyed leaving messages or pictures on the windows with window markers. I made a small bulletin board collage with pictures of Bucky, friends and family. The nurses enjoyed seeing what he looked like with hair, how he played sports, and what his friends were like. It made the room his. We were limited to what I could bring up in one trip, but each check-in day was like move-in day.
At 6’2” and 170 pounds, Bucky appeared to be an adult. However, his cancer was best treated in a pediatric hospital. Unfortunately, the food portions were for a small child, so when Bucky was hungry it was never enough for him. Having friends bring meals was great, but I still made plenty of trips to the food court or nearby grocery store. When someone asks what they can do for you (and they will), tell them that providing a dinner at the hospital would be a big help. Gift cards to the area fast food places or pizza delivery services are great.
We were very fortunate to have a doctor who understood teenagers—He treated so much more than his cancer. He encouraged Bucky to visit the other teens on the floor. He’d call Bucky and tell him, “Hey, there is a new kid down the hall, can I tell him about you?” Later he’d call back and say, “Hey, the new kid down the hall said you should come visit.” It was strange at first, but as time went on, we looked forward to seeing all of our other friends in treatment. The kids helped each other – they were really the only ones who understood how they felt. Of course, it was the same with the moms. We made some life-long friends while in treatment.
Rules
It is important to remember that it has taken you a dozen years or so to put your household rules in place. Do not throw them out the window now. Also, good manners and hygiene should always be required. For some reason, the kids usually resisted showering in the hospital. Bucky could not do very much when he was at home, but we still required him to clear his place after dinner, keep his room clean, and put away his clean laundry— just like the other kids.
When Bucky could go out, his curfew remained in place. Sometimes it was actually earlier than before because he got tired easily. Most of the patients do some sort of homeschooling and this is important. Just try to keep a schedule as much as possible. Do not allow TV and video games all day if this is not what you would normally do. One day after the cancer is gone, you will bring your child home and be grateful not to have to re-train them.
There is also another side to this. Bucky went into remission and back to school near the end of his senior year. This is a fun and exciting time for teen, so Bucky was so happy to be back in action, I was miserable. I wanted to keep him home where I knew he’d be safe and protected. I gave him a hard time when he wanted to go out and kept his curfew very early. We finally resorted to counseling where I discovered that my son was perfectly normal, and that I had become wildly overprotective. The doctor assured me that this was a typical reaction but not a healthy one. We negotiated a reasonable curfew and some ground rules and things got better.
Friends
Their friends will take the news of your child’s diagnosis differently. Some will assume it is a death sentence, others will find it fascinating, and many emotions in between. I made a point of calling three of his best friends’ moms to make sure they knew. I also told them about the Caring Bridge site for Bucky. Once treatment begins, make sure to keep the friends in the loop. Letting your teen text and chat with them is great.
Encourage friends to visit in small groups. One-on-one visits can get awkward. I talked to the moms first, so they could talk to their teens. I suggested times and outlined the rules. Everyone had to be healthy and clean and use hand sanitizer at the door. They had to call me first and make sure the time was OK. The guys brought board games or cards and stayed for about 2 hours. Bucky hated the hospital food, so I encouraged his friends to come at lunch or dinner and bring food for all of them. They loved that because they knew how much it helped us, and it broke the ice when they came. Also, this gave me a chance to run home and have a meal with my husband and other sons. Save yourself some stress and be sure you set the guidelines ahead of time.
Some of your child’s friends will not be able to visit your child. Some find going to a hospital very upsetting. A pediatric cancer ward is a place of healing, so keep in mind that visitors will see things that make them uncomfortable or sad – like very sick babies or precious toddlers with chemo IVs. This is upsetting for anyone.
Also, your child will have an IV and maybe will even have chemo running or blood transfusing. Squeamish people come in all ages. Even the toughest 18-year-old football players might be unable to deal with this. I had some moms call me and try to explain their situations to me. I told them not to worry, and I spoke with Bucky about it. These friends can call, email or visit while your teen is at home.
There are special things to consider if your child has a boyfriend/girlfriend when they are diagnosed. Every couple is different, but certainly be prepared to be a shoulder to cry on. Bucky’s girlfriend was typically supportive, but she also gave him a hard time for missing her concerts and events.
Try to be honest with both of them about what they will be able to do. For Homecoming, Bucky was allowed to go out to dinner and spend one hour at the dance. We hired a driver to take them home. They were not happy about the driver because they wanted ‘alone time’, but we were not comfortable with Bucky driving at night while he was so tired.
Our doctor helped us decide what was OK for him to do based on his current health. As a mom, I just wanted to keep him home all the time, but his emotional health was very important also. When faced with decisions about going out, the doctor would say, “You can’t keep him in a bubble. He can’t go to Woodstock, but everything in between is negotiable.” It was very hard for me to allow him to go out at all. I saw everything as a risk to his health. The doctor convinced me that keeping him happy really did help his recovery.
Bucky made wonderful new friends with other patients in the hospital. The little kids loved him! He would tease them, and they would hang out. The other teens all supported one another, which was such a blessing. It is important that you remind your child that every cancer is different and every treatment plan is different. Sometimes his friends would feel very sick or be taken to ICU. He would worry for them, but at the same time, he would wonder if that would happen to him. Teens don’t always express these feeling, maybe they know they are not rational, but it’s best to talk about to them about it. Ask your doctor to also address these concerns.
The Information Age
Immediately after our diagnosis, we set up a Caring Bridge page on which we posted updates and news. Posting on the page was a great way to get the facts out without having to call everyone. We were even able to post pictures with our updates, so people could see him. Also, it helped prevent rumors or speculation. As his high school principal likes to say, “The only information that can hurt you is the information that you do not have.” There are many websites that provide this service for free, but this one worked for us.
One of the first things that our doctor told us was not to Google cancer. Specifically, he told Bucky not to do it. The kids are so used to looking everything up on the Internet and getting the instant answer. Not everything on the Internet is correct, and with regards to cancer, may not apply to your specific case. Reading about someone else’s bad experience or horrible condition or even worse, viewing shocking photos, will only crush your hope.
Facebook. I’m not normally a fan of Facebook, but it really helped Bucky keep in touch with his friends. If you do not own a laptop computer, there are some organizations out there that can provide you with one. Check with your child life representative or social worker to find out if you are eligible.
The cell phone. Before Bucky was diagnosed, I had pretty tight controls on his cell phone usage. His phone could always call his dad, his brother, 911, and me but he had a limited number of minutes and text messages per month. Although my cell phone plan offered unlimited calls and texts, I was able to restrict his phone by using the provider’s usage controls on their website. My first big mistake was removing these restrictions, so he could keep up with friends. His cell phone buzzed all day long! I had to set up controls that prevented him from making and receiving calls and text messages from 10pm to 8am.
Do Something Positive
Even though your teen has cancer, there are so many things they can do to help others. Bucky was able to speak at a fundraiser or two, and we worked on other hospital events. We were not in the hospital at Christmas, so we organized a homemade cookie drive with friends and classmates. We boxed the cookies up in containers of 4 dozens and delivered them on Christmas Eve to each family in the hospital—and had plenty left to share with the nurses. Doing something positive to make a difference for the other kids will certainly help you all feel better.
Remission and Restarting
One of the scariest parts of this whole experience was being sent back into the real world. It is wonderful to be cancer free. But, it is hard to walk away from the constant monitoring and care. It is hard for the parents and the teen. Every day you wonder if he is OK, if that cough needs to be looked at, if his counts are low, if he is eating enough, etc. The worry is overwhelming at times. It gets better. Once we made it through our three-month check, I could breathe again. After the six-month check, I slept better. Every three months when it is check-up time, I get anxious. I can only imagine how Bucky feels.
While we were in treatment, the world kept moving. Some of Bucky’s friends had new interests and new friends. He started back to school in late January when everyone else already had their routine. His school, teachers, and friends were all good to him, but it was a huge transition. The same happened to me. I had dropped out of many activities while Bucky was sick, but I slowly began rejoining. I found many things that other moms talked about to be trivial and unimportant, so I got more involved in charity fundraising. I find comfort in that, and I’m also able to be with other moms like myself. It is a struggle to find the way back to where you were when you are not sure you even want to go back there.
Bucky is a freshman in college now. He worked as a junior counselor last summer in a camp for kids with cancer. He talks to his doctor weekly, not for a medical reason, but because he continues to mentor him. He volunteers at the hospital when he is home. He still trades text messages with other kids he met in treatment. Bucky’s life was changed by cancer just as your teen’s will be. Maybe their dreams will change, but they will continue to dream.
Bucky was diagnosed in May 2009 and declared cancer free in January 2010 after 14 rounds of chemo and arm reconstruction which included the removal of the radius in his right arm. He still has check-ups every three months to watch for recurrence, and he possibly faces another surgery on his arm in the summer of 2011.
Bucky turned 19 in September, and is a freshman at the University of Texas in the Health Science Honors program. He always planned on attending medical school, but he’s now considering specializing in pediatric oncology.