Members of Team OncoLink are proud supporters of Camp Kesem, a national organization that provides a free, week long, summer camp experience to children ages 6-16, who have a parent with cancer. As part of a local Camp Kesem fundraiser, camper mom Karin shared her story with the attendees. There wasn’t a dry eye in the house. Karin was kind enough to share her speech with us. I think parents coping with cancer will find it heartfelt and inspirational.
I’ll never forget the exact moment, the exact day, the phone ringing. I knew the number was my doctor’s office and although she had told me at the biopsy procedure that she thought “it was nothing,” my stomach still turned as I answered the phone. “Hello,” “yes, I’m good”…then the room started spinning, life flashing in front of me as I reached for a chair. “You have cancer”…most likely a few of the worst words to hear from your doctor. As I regained the strength to stand, my one year old baby needed something, the almost 3 year old wanted “juicey,” and the almost 5 year old spilled paint all over the floor. In addition to the shock of the phone call, the overwhelming sadness and fear, there was the reality of how the heck was I going to handle this with three young children who needed me?
The following year was hard, to say the least. At one of my initial appointments, the doctors told me the cancer was aggressive and in my lymph nodes and that they would have to throw “everything they had” at it to really get it. I was young, otherwise healthy, and if I gave them a year of my life, they would work very hard to give me the rest of my life that I so desperately wanted. I tried not to ask, but curiosity got the better of me and I asked what the odds were— I could tell my beloved doctor didn’t want to answer, but she did – the reality was, with this type of stage 3B breast cancer, that I had a 50/50 chance of being alive in 3 years. That would make my youngest 4, my middle child almost 6, and my oldest almost 8…room spinning, life flashing in front of me, reaching for a chair for support. Well, I said, “Let’s get started,” and within 72 hours, my first chemotherapy session was underway. Many more doctor’s appointments, MRIs, a port placement procedure, chemotherapy, surgeries and countless weeks of radiation. Whatever needed to be done was done and I was in the battle of my life.
During the treatment phase, we never used the word cancer with the kids. We called the issue that mommy had something like a stink bug, that were all over the house that year, and that we had to get rid of it, and it would take a really strong medicine that would make my hair fall out and make me not feel that good. They understood a bit, between watching the Wiggles and diaper changes and fighting over playdoh. Our family and friends were amazing. A neighbor took a day off of work each week to make us dinner, family came and helped tremendously, and friends came and laid in bed with me or went for walks when I was up for it. We set up a calendar on a website for meals and a slot for playdates for the kids. The calendar was full of scheduled activities, playground visits and trips to the zoo. You see, when you are a parent going through cancer, it is awful on us and our bodies and our spirit, and add on TOP of that the worry of leaving our kids, of the sadness and sickness in the house and how THAT affects the kids. Their lives being put upside down, the sideways looks of why is everyone crying and why can’t mommy put us to bed and the events and things you are missing because of the treatment. It was hard on all of us.
I was under close supervision for the next three years. Appointments every 3 months, every cough, headache and suspicious skin activity was monitored. My hair grew back and we tried to get back to a new normal way of life, a little less crying, less people around, no more dinners from the neighbors (bummer), and fulltime jobs, school events and sporting activities kept us busy. I wondered how much my treatment had affected the kids. They did have some extra separation anxiety when I left them that was concerning to me and their teachers and it could be related to the chaos and extreme stress since my diagnosis. I spoke to my doctor about it and she suggested I look into a new program at the University of Pennsylvania called Camp Kesem. I looked into it and couldn’t believe how great it seemed, how it was started, and its purpose of helping kids escape the stress of a parents’ cancer. Based on timing of when I found out about it, by the time I applied the camp was full but we were put on a waiting list. On a summer morning the phone rang, this time good news—it was a counselor, saying a slot had opened up and they’d love to have my oldest come to Camp Kesem in a couple of weeks. I was a bit shocked and not sure she was ready for a week overnight away, or if I was ready to have her gone from me for that long. We talked a while with Dory and made the great decision to send her to camp. Her camp name was Piglet (a tradition that allows the kids to “be” someone else for the week) and except for many tears, mainly from me at the sendoff, she had the week of her life. She came home and talked about it non-stop, showed us all the silly dances and songs having to do with Buff-Buffalos and shaking one’s booty. It wasn’t that I was skeptical of her great time; it was more that I didn’t get it—sure it was a fun overnight camp with really smart ivy league college students playing with you all week. I get that sounds fun, but how was it THIS much FUN? Like greatest week of her life fun? What about that Walt DISNEY world trip, what about the Jersey Shore and jumping in the waves?? Oh, right, sorry, excuse me, call you PIGLET now, I got it. Camp Kesem was perfection, really? Well, it was. It is. My daughter met friends there she will have for life, counselors and other campers. She went to dinner one night in jammies with a counselor named Jammies, how cool is that? She made a superman cape for when she’s feeling scared to protect her that hangs proudly in her room. She cried, she opened up at nightly cabin chat, she sat at campfires and talked about her mom having breast cancer, something we just didn’t talk about much with her. She felt safe. She felt heard. She wrote a letter to me, her hero, she said, that has healed me as much as it helped her. They laughed, they sang, they played, they swam. She came home with a lighter, brighter spirit and the Camp Kesem love and energy stayed with her the entire year. As she has said often, “she wishes every day could be like it is at Camp Kesem.” My son, Puck as he is known at camp, went the next year, and my youngest, Pinkie Pie, had her first year last year. Camp Kesem is widely talked about in our house as “life changing, life saving, anxiety ending, joy making and just plain awesome”. We are so grateful for the students that spend their time fundraising, planning the week and then the week itself. The hugs for the kids, the smiles on their faces when they see them, the complete selfless act of helping our children feel better about a very scary subject. Thank you.
I’m proud to tell you, last Monday was my 8 year anniversary from my diagnosis. Not a day goes by that I’m not still fearful and I continue to walk on thin ice more than I ever did before the diagnosis. But there is a gift in cancer. The gift of gratitude, the gift of compassion, the gift of truly embracing how short and precious life is and the knowledge that we decide how to live our lives, how to treat others. Camp Kesem, and the people associated with it, are shining examples of how to live this life to the fullest. I’m grateful to them, and to you, for helping to continue this dream of giving kids a break from cancer. Thank you.
If you are a parent with cancer, your child can also experience the magic of Camp Kesem. Find more information at www.campekesem.org.