Living several years in Warsaw, Poland, was a great experience for our family until the day that I received a call from the school nurse about my 5 year old daughter, Caitlin. The school nurse called to inform me that Caitlin had fallen asleep in class. I had noticed that she had seemed unusually pale that morning when I dropped her off, but there was no other reason to keep her home from school. She had recovered from what seemed to be a fairly common illnesses (bronchitis and a urinary tract infection) over the past two months, after a few rounds of antibiotics. However, she had lost her normal rosy complexion, had some small unexplained bruises on her face, and a few weeks before she complained of pains in her legs and back. Although these things were not alarming symptoms, they were unusual for Caitlin, who had always been so healthy. A small medical handbook that I had at home, listed symptoms as signs of leukemia, so I brought her to the doctor and asked for a blood test. The doctor detected a swollen liver from an abdominal examination, and the following day, the blood test results confirmed my greatest fear – Caitlin was diagnosed will ALL leukemia.
The adventure of living aboard turned into a nightmare. My husband came to the hospital and we had to make some big decisions fast. We knew we had to leave Poland for Caitlin to receive the best possible medical treatment, but her blood counts were so low that she needed a blood transfusion immediately before we could have safely. We were put in a room with four other children and Caitlin was given a blood transfusion through an IV intended for an adult. Although parents were not allowed to stay in the hospital, I slept in the same bed as Caitlin that night. I will never forget that night. Although the news of her diagnosis was devastating, we felt privileged to be together as the other young children in the room has come from distant parts of Poland to face their treatments alone, without the reassurance and comfort of having their parents close by.
I am American, but my husband is Swedish, our daughter was eligible to receive medical treatment in Sweden. We were flown in an air ambulance to a hospital in Lund, Sweden, the very next day, leaving Poland for good, without being able to say goodbye to my three other children, ages 3, 9 and 12. The rest of the family moved to Sweden two weeks later.
From the time my daughter was admitted to the Lund University Hospital, she received outstanding medical care. Caitlin went into remission after only two weeks of treatments and responded well to further treatments for the next two and a half years. During the first year, we spent over 100 nights in the hospital. It was extremely difficult to be away from the rest of the family during this time and there were many nights when my three year old son stayed in the hospital with us.
Caitlin asked many questions about her illness that I found difficult to answer in simple terms. The panic in her eyes revealed her fear as her life took a dramatic twist from a carefree life of kindergarten, birthday parties, and play dates, to hospital life. She went from being an ordinary kid on the playground to a sick child visited by innumerable doctors and nurses focused on her illness. All she wanted to know was “Why? What is wrong with me Mom?”.
There was no easy answers to Caitlin’s questions. She wanted to go home to her regular life and I could not explain why she had to stay in the hospital. She would ask me “Why do I have to take the medicine that makes me sick What are those bad cells inside of me? If they are all gone now, why do I have to go back to the hospital?”
I searched for books to help Caitlin better understand what leukemia is and about chemotherapy treatments , but could not find a book written for children of this age to answer her questions. At one point, Caitlin began to rebel against the treatment, not fully understanding that the chemotherapy was making her feel bad was actually saving her life. This is when Caitlin and I started to draw pictures of our book. During the long hours at the hospital together, it gave us a positive goal to achieve, and we knew our efforts would benefit other children going through chemotherapy in the future.
Our goals in writing our book were:
- To give a simplified explanation through colored images to explain the complexities of leukemia.
- To help children become familiar with hospital life in a positive way.
- To help them understand the doctors and nurses are there to help and not hurt them.
- To help parents gain a child’s cooperation when taking medicine, sitting still, and injuring uncomfortable and scary treatment.
- To give them a strong role model that has “Super Hero” qualities.
- To help them feel in control of their illness instead of the victim.
Caitlin and I work together to create characters of our book, “Chemo to the Rescue”, who would really talk to her child reader the main character, a boy patient, was created to be brave and receiving treatment and confident with his beautiful bald head, similar to do as my daughter when she lost her hair after chemotherapy. The doctor was to be gentle and informative as were so many of Caitlin’s doctors and caregivers. And our hero “Chemo” was to be a character who was strong and precise, who could be trusted to get the job done leukemia cells are portrayed as worthless and lazy all the white cells instead of “bad guys”.
In summary we set out to create a positive image to chemotherapy. Naturally, we had a lot of negative feelings in the beginning to the native side effects to treatment, until we started to see the fantastic results that were accomplished to restore Caitlin’s health.
Caitlin is now 20 years old and fully recovered. She looks back on her treatment as challenging, yet with pride. We hope that our book will encourage other children in the same way by providing a positive outlook to chemotherapy and hospital life.