Let me start by saying that Shannon was one of those children who was constantly plagued by ear infections--from newborn until diagnosis. It seemed about every 6 weeks I was in the doctor's office for antibiotics for a raging ear infection with her. She always responded rapidly.
Then the summer before diagnosis, Shannon was playing outside in the yard and when we came inside, I had found a deer tick attached to the top of her shoulder, near her neck. Prompt visit to the doctor's office for removal and high dose antibiotics to prevent Lyme disease. About 2 weeks later, another deer tick, this one in the crease of her leg near the groin. Prompt trip to ER since it was after office hours. Removal and another course of high dose antibiotics.
Fast forward to last weeks of June 2002. It was about 2 months before Shannon's 3rd birthday. She was learning to ride a tricycle and so when the strange bruising started showing up on her legs, I thought it was the peddles bumping her shins. But, the bruising was very strange. It would come out like a blood clot and then the next day be flat and look like a normal bruise. This went on for about 2 weeks.
The first few days of July were hot and humid. We went to a fireworks display on July 2nd. Her Grammy was there and was holding her and remarked to me that Shannon felt feverish and looked pale. I told her it was probably the heat and humidity but I would take a temperature when I got home. It was 102.9. I gave her Tylenol and put her to bed. Over the 4th of July weekend, Shannon began sleeping constantly--as much as 12 to 18 hours a day, as well as I could not get the fevers in control. One minute she was above 102 and then 15 minutes later had normal temperature. On Monday morning, I took her straight to the doctor's office and told him my concerns about the bruising and crazy fevers. He felt she may have a strep infection that was getting into the bloodstream and once again, gave us strong antibiotics.
That night I came home and researched on the net and the first thing I clicked on was childhood leukemia. The symptoms all fit. But so did so many other "minor" illnesses. Shannon didn't really get any worse, but she didn't get any better either. She began not urinating because she wasn't awake long enough to get much liquids or food in her. Monday arrives again and I go toting her back to his office (without an appointment) and I'm told he is on vacation that week. I demanded a script for bloodwork as I knew something was horribly wrong. His associate agreed to the request and also wanted a urine sample since she wasn't really urinating that much.
The following morning, on July 17, 2002, my baby bounded out of bed with a huge smile and "Good Morning Mommy" and was sitting and eating a bowl of Cheerios when the phone rang. It was Children's Hospital of Pittsburgh calling to have me bring Shannon into the clinic that afternoon. I asked what the concern was and all they would say was that Shannon's bloodwork was causing them some concern. I went outside to tell her dad we needed to get to Children's and the phone rang again. It was the doctor that gave me the script for bloodwork. She told me Shannon was in critical condition and needed to get to Children's as soon as possible and to pack an overnight bag as we would be there for several days for blood and platelet transfusions. Shannon's hemoglobin was 7 and her platelets were 10,000 and white count was 9000. She told me that with platelets that low, Shannon could cough or sneeze hard and begin bleeding internally. Makes the heart skip a beat! I asked her what she thought I would be told in Pittsburgh and she said "it can be one of 1000 childhood illnesses, but top of my list....leukemia".
By the time we arrived at the clinic in Pittsburgh (about an hour's drive), Shannon had petechia on her neck and elbows and when the doctor entered the room, he took one look at Shannon lying in my arms and said "God, yes, that baby has leukemia and I think I know exactly which type it is, give me a minute to look at her slides." He returned and told me that she had ALL and if there could be any good news to telling me my child had cancer, that she had the best kind to get, the easiest to treat, with the best chance of beating it. He also explained how her young age and being a girl were favorable odds. The hospital couldn't do the BMA and LP until the next day, so he came in and did it right there in the clinic.
Our first night inpatient was nothing but transfusions...red blood cells and platelets...one after the other. They wanted her counts up so that they could do surgery the next morning for her Medi-Port. Surgery was touch and go for a bit as she began bleeding on the table, but thankfully it was able to be stopped. Her Medi-Port had gone up in a vein in her neck instead of along the breastbone area and that was what saved her life--they could put pressure on the bleed along the neck where they couldn't have on her chest. Her only other major concern was she had run very high blood pressure from the many transfusions during our initial 8 day stay and had to have blood pressure meds during that time.
Thats our diagnosis story--burned into my memory forever.
Georgia, mom to Shannon, 6, dx 7/16/02, OT 9/17/04 Standard Risk Pre-B ALL, followed CCG-1991, and Shawn, 11, Savannah, forever an angel (stillborn 1/22/97) and Shayla, 8 1/2 mths. www.caringbridge.org/pa/shannonsjourney