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A Mother's Perspective
by Debbie Kapke
The past year is split into two categories for our family; “Pre-Diagnosis” and “Post-Diagnosis”. Thinking back to the “Pre-Diagnosis” months, I am amused by the blissful simplicity that was once our normal routine. Balancing work, school, dance classes, swimming lessons, school board responsibilities, etc. seemed chaotic at the time. But the months “Post-Diagnosis” introduced us to a new chaos … cancer. Cancer changes everything.
Our 4-year-old daughter, Emily, was diagnosed with Acute Mylogenous Leukemia after two days of fear and uncertainty while her biopsy results were being studied. Grief, remorse, guilt, paralyzing fear, frustration and confusion washed over my husband and I every minute of the first days after diagnoses.
After a few days of feeling like the wind had been knocked out of us, we collected our selves. My husband and I had a series of long talks and agreed that our focus had to change. The only way we could face a challenge like this would be to accept it, face it, be honest about it and make this experience one that would be positive for our children and ourselves. How do you make 5-6 months of hospitalization and chemotherapy a positive experience? That was the next task.
We had to promote the hospital as a good, safe place to be. We had to make it fun! Obviously, living at the hospital is one of the most uncomfortable situations one can imagine. You are in a very intrusive environment and your living space is limited to an area the size of a walk-in closet! I knew that Emily would pick up on how my husband and I responded to our new living situation, so we had to set the example. The first days in our new room were spent cutting out paper flowers, butterflies, dragonflies and an enormous sunshine. Because everyday would have sunshine in it! Emily’s room was decorated from top to bottom. We brought her pillow from home, several of her favorite stuffed friends, her photo album and anything that would help bridge the gap between the outside world and the protected world of her hospital room. Since Emily and her I.V. pole were inseparable (literally), we made sure it was decorated as well. Emily and her Dad came up with a name for her I.V. pole, Mr. Octopus. Mr. Octopus was big and had lots of arms and legs to carry all Emily’s medicine. Whatever it took to make it look and feel fun, we did it!
The doctors, nurses and child life staff became an instant extension to our family, and we encouraged that relationship to help Emily feel more comfortable. I let Emily know early on that she could talk to the doctors and nurses about anything. If she was scared, angry, sad, feeling sick or didn’t want to talk, she could tell them and they would listen. The first week or two of treatment had many scary moments for Emily. There were so many new people, procedures, machines and areas of the hospital that had not been introduced to us.
One afternoon, Emily was having her first of many gamma scans in Nuclear Medicine. In the middle of the third or fourth song I was singing to her, her grip on my hand tightened and I saw tears streaming down her cheeks. I asked her what was wrong. She responded, “I’m scared.” I told Emily, “I’m scared too. I don’t understand everything that is happening either, but I am here. You will never be alone and we will get through this together. We are going to have as much fun as we possibly can while we are here and we are going to get you better.” At that moment Emily seemed more comforted than at any other time since we admitted. Emily and her Dad had a similar conversation in the days that followed and from then on, I felt like we were all on the same track. Emily’s attitude was brighter, and she began having fun!
We encouraged Emily to explore the rec room and various child life programs that were available to us. It was not always easy. Emily missed her friends and she missed playing outside. Most of all she missed her sister.
One of the biggest challenges during Emily’s treatment and hospitalization was nurturing the relationship between Emily and her sister, Megan. This proved very challenging indeed. Megan and Emily are very close. We had to make sure they had time together, while educating Megan about what was happening to her sister. We had to help Megan understand why Emily was getting so much attention from everyone, and temper the flare-ups of jealousy from both girls. Emily was envious that Megan could continue her relationships with playmates and leave her behind at the hospital. Megan was devastated that her two-parent home was uprooted while Mom was at the hospital with Emily. Honestly, they both had very legitimate gripes! The difficult part was acknowledging their pain, and trying to offer resolutions that a 4-year-old and a 6-year-old would accept.
We were introduced to an organization called “Super Sibs”. This organization caters to the needs of siblings coping with cancer. Megan signed up online at www.supersibs.org. “Super Sibs” sent occasional letters and gifts to Megan. Her favorite surprise was a trophy for being a loving sister! We were constantly reinforcing to Megan, her role in Emily’s treatment. We always acknowledged her anxiety, but remind her that we all needed to work together to help Emily get well. Whenever there was a special event at the hospital, we made sure Megan was there. We also were able to help empower Megan a little by arranging to have her talk to her classmates about what was happening to her sister. We encouraged Megan’s participation in child life activities as well. And made sure she was at the hospital for a sibling group provided by the child life staff. Megan grew very close to the facilitator of that group. We were very grateful for the child life’s participation in sibling issues.
Over the months that followed we learned so much about ourselves, the selflessness of others and the strength of one very courageous 4-year-old and her amazing sister. We count our blessings everyday. Our hospitalization is over now as Emily celebrates her sixth month of remission! We have experienced so much as a family and we have been strengthened because of it.
Copyright 2005 by Debbie Kapke
Capital Candlelighters Childhood Cancer Alliance Newsletter, Winter 2005
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