At 2 1/2 years of age Josh was diagnosed with pre-B ALL on 6/1/05. His [blood] counts at dx were as follows:
Two weeks earlier they were as follows:
So a little off, but nothing our family doctor thought alarming. He assured us it was nothing more than a "funky infection" and that Josh was a "typical boy giving us a hard time".
Let me back up some then. Nearly a month before Josh was diagnosed, on May 6th, I came home from work and Josh refused to walk. I questioned the kids thinking maybe he fell and hurt himself. Nobody knew what happened. It wasn't a limp, he plain refused to walk, he would scoot himself around the floor on his butt. Frustrated he would go to a chair and try to pull himself up with no success. He couldn't explain to us where his legs hurt, but he couldn't bear any weight on them. I gave him ibuprofen for any pain and he was sleeping soon after. When he woke up several hours later that night, he was fine. We wrote it off.
9 days later, again on a weekend, it happened a second time. That afternoon I noticed he was running a low-grade fever too. Again after ibuprofen he was feeling better, however I decided to call his doctor the next morning. When I explained it to them, they had me bring him in later that day. Of course he was fine by then, but they did notice some bruising on his legs, I figured this was from him crawling around in the floor. The doctor said he would monitor him for juvenile arthritis, and that the next time it happened bring him right in, don't even bother to call.
I don't know if this is related, but approximately 2 weeks before the 1st walking incident I took Josh to the doctor because he was having severe left rib cage pain, he could barely tolerate the doctor touching him there. After running lung x-rays to rule out pneumonia, the doctor thought it was pleurisy and treated with, what else? Ibuprofen.
Looking back, I wonder if the pleurisy wasn't really his spleen.
So anyway, 3 days later, this time on a weekday, Josh stopped walking again, it was so weird how fast it set in. One minute we were walking around the softball fields, the next he was limping and literally the next he refused to walk at all. It was after-office-hours, so I took Josh straight to the ER. I just knew, that if I didn't, he'd be walking by morning and again no one would witness my madness. They x-rayed his hip and legs and determined there were no polyps, no fractures, no tumors. They told me they don't diagnose things, they only treat emergencies and sent us home with orders to follow up with our family doctor.
It was a loooong night, Josh was whimpering and tossing about all night. I took him in first thing in the morning. Alas, he still wasn't walking (and as it would turn out, he didn't walk again until after dx). They tried to get his weight but he wouldn't stand on the scale. From the *pleurisy* visit, to the *arthritis* visit, to this visit Josh was steadily losing weight. At home he had stopped eating. We were buying him Pediasure just to keep the calories in him. This day he was also running another fever, 101.something. It was this visit they decided to run the bloodwork. They told me they were checking for leukemia, lupus and JRA. It was the first time leukemia had been mentioned and I didn't think twice about it. I was still thinking he had JRA or lupus.
That afternoon the doctor called my husband and told him he referred Josh to Pittsburgh's Children's Hospital, my husband called me at work to tell me, but when I asked him what for, he didn't know. DUH. So immediately after work I went straight to the doctor's office to ask myself. Totally expecting to talk with the head nurse or the Physician’s Assistant, I instead was sent in an exam room to talk with our doctor. He told me the bloodwork was slightly off and if it were presented by itself he wouldn't have looked twice, but since he was having leg pain he called a "friend" and they were referring him to the oncology clinic in Pittsburgh. The minute he said oncology I started bawling. He hugged me and that's when he reassured me that it was just a funky virus or something.
Our appointment wasn't scheduled until after Memorial Day. It was the longest two weeks of my life! I read all these stories of families being whisked off in a ambulance or being admitted straight from the ER, so I was comforted by the fact that Josh was no emergency. He couldn't possibly have cancer. But that two weeks allowed me plenty of time for surfing.
Going over the list of symptoms, Josh was cranky and irritable, always wanted to be held, and he slept a lot. He had fevers, night sweats, no appetite, weight loss, dark circles under his eyes (which I figured was allergies), pale skin, and he developed petechia the very last week and of course the difficulty walking.
At the first clinic visit, it was discovered that his spleen and liver were enlarged, and also some lymph nodes in his neck.
I don't care how prepared you think you are, you are never ready to hear the words, "Your child has cancer."
Marian, mom to Kaitlynn, Halie, Kennidy, Joshua & Nathan www.caringbridge.org/visit/joshua