Katie S. - Quilt Finished in 2004
Born: January 3, 1998
Illness: Acute Lymphoblastic Leukemia
Thank you from Katie's Family!
Katie is thrilled with her Love Quilt. We are all thrilled with her Love Quilt! It is a work of art. She has it on her bed, and it cheers me every time I walk by her room and catch a glimpse. Katie is so proud that so many people from all over the world worked to make a quilt for her. As I tuck her in at night we look at the squares and sometimes we notice something we hadn't noticed before - the detail is really beautiful. Thank you to everyone who worked on it. It has truly warmed our hearts!
Katie and Family
Katie's Story
written by mom Lind
Our daughter Katie was due to be born on Christmas Day, but not to be outdone by Santa (or anyone else) she decided to arrive on January 3rd, 1998. She was a healthy, spunky 9-pound baby. From the very beginning she did things on her own terms, in her own good time. I think she may have been born smiling. Everywhere we went, Katie would smile and flirt and squeal and squawk - when she was really happy she’d make a squawk that sounded like a wild bird! She would be so happy she just couldn’t contain herself!
Towards the end of 2002, we were in the process of renovating a house and packing up to move. From time to time Katie would complain about being tired, but we were all tired - renovating, packing and moving Christmas week. It wasn’t until the day that Katie was on the couch and yelled to me that she was too tired to get dressed and I walked in the living room and saw the bruises - the strange rotten-banana color bruises; and I saw she had a very minor nose bleed; and then Katie said “My ribs hurt and I have bone pain and I’m too tired to walk” and my head started to spin.
I called the doctor and got an appointment. The doctor was comforting, so I calmed down a bit - but I requested the blood work and she didn’t try to talk me out of it. I’ll never forget the day - March 6th, 2003 - we were having a blizzard here in New York and the pediatrician called to say that Katie’s lab results were “alarming” and we needed to see a Hematologist Oncologist immediately. We said today? In this storm? We made it to the oncologist and within 20 minutes she confirmed our worst fears – Katie was diagnosed with Acute Lymphoblastic Leukemia. Within an hour or so Katie was admitted to the Hospital. Our lives became chaos as we listened to the doctors. Words like protocol, clinical trial, induction, intensification, intrathecal methotrexate and decadron became part of our daily language. For 27 months she had various treatments including spinal chemotherapy, muscular injections, transfusions when her counts became extremely low, intravenous chemo and a large variety of daily meds. She was incredibly brave through it all! And I would be remiss if I didn’t mention her big sister Chloe, who was the brunt of many steroid-induced temper tantrums, and also showed tremendous strength, and consequently had to grow up pretty fast!
The last thing on our minds when Katie was first diagnosed was her education, but new research is showing that the life-saving chemo that Katie and other kids receive for leukemia also can have an effect on learning. We have had quite a journey navigating the special education system. Thankfully many resources are becoming available through organizations such as the Leukemia and Lymphoma Society to help guide us.
Katie has achieved an important milestone on the road to being cured: she is 20 months off-treatment, has stayed in remission and is doing well. Her glorious head of hair is back, as is her wonderful spirit. She just "graduated" from seeing the oncologist every 2 months, to seeing her every 4 months. Katie is happy, because this means she gets "stuck" half as often! Thank you for your extraordinary kindness. Katie’s weekly trips to the post box continue to be a source of joy for her and for all of us. She is still smiling!
