Abby has always been a child that requires a lot of sleep. Since the day she was born, she was a twelve hour sleeper – plus naps. I was told that she would grow out of it. However, in December 2010, at the age of 7, she started needing even more sleep. I blew it off as her going through a growing spurt or being overtired from long days at school. In January, it continued. Everyone kept telling me I was being over protective and over worried. She started withdrawing from her activities because she was too tired after a long day of school. Gymnastics, her favorite activity, became an argument each week. She tried to participate, but then after about 20 minutes, she’d tell me she was too tired and her legs hurt. Again, in the back of my mind, I was becoming more and more worried.
When her birthday came in February, she planned a slumber party on a Friday night. Most 8 year old girls would be ecstatic when they’d get off the bus on their birthday party day. Abby, however, came off the bus and asked if she could go upstairs into her room and read a book. Ten minutes later, she was fast asleep…on the day of her birthday party. I woke her thirty minutes before the party started and she was groggy, grouchy, and really not interested in having her friends come over. This was not normal for my bubbly, friendly, social little girl.
At her 8 year old well check the following week, I insisted on a blood test. When her blood counts came back low, I was immediately worried as my mother had passed away from leukemia 15 years ago. I knew what low blood counts could mean. Our pediatrician was worried as well, so he immediately called Dr. Lew who instructed us to take the counts again in one week. The following week, we had the same results. One week after that, we were at Scottish Rite for some tests. We left Scottish Rite thinking Abby had a blood infection that would resolve itself in two weeks. However, the following day, on March 11, 2011, the test results came back positive for leukemia. That is how our journey started.
The rest of 2011, were spent adjusting to a ‘new normal.’ Our world revolved around doctors appointments, days at the clinic, spreadsheets of medicine dosages, and arranging activities around blood count levels. Throughout the year, Abby received 15 bags of blood or platelets, I had to take her to the ER 9 times, and we spent over 50 days in the hospital. The doctors and nurses at Scottish Rite were amazingly kind, knowledgeable, helpful, caring, and loving. We were always supported, loved, and cared for. All of our questions were always answered and if they didn’t know the answers right away, we usually had them within a day. Everything was explained to us ahead of time, so we could plan accordingly. Most importantly, though, was the love and respect that they all gave Abby. Abby was old enough to understand what was going on and to have questions of her own. Everyone at Scottish Rite talked to her, answered her questions, and made sure she was as comfortable as possible.
In December of 2011, we started the maintenance phase of treatment. While this phase is much easier as we only have to go to the clinic one a month instead of once a week, I still give Abby chemo every single night. She is still limited on certain foods she can eat at certain times. She is still on high dose steroids 5 days a month, and if she runs a fever, we still have to head to the ER.
Thankfully, we live in an area that not only has a very dedicated hospital and hospital staff, but we also live in an amazing community. We would not have been able to survive the last year without the love and kindness of our friends, family, and complete strangers. I don’t wish this diagnosis or experience on anyone, let alone a child. Is this any way for a child to have to live? We must find a cure for childhood cancer, and with your help, we’ll be that much closer to saving our children, our future.
In 2012-2013, CURE Childhood Cancer is investing $1.7 million for research to find cures for childhood cancers. The goal of CURE’s Annual Campaign is to raise $600,000 by June 30, 2013. Please click here to make a contribution.