Like you all, I can't forget a moment of Fergus' diagnosis story. This is very therapeutic!
In retrospect our journey began in October 2004. One night somewhere that month, Fergus woke with a pain in his leg. A brief massage and some mother comfort stopped the tears and he fell back to sleep. Some time later that month, on one of Rob's days home, Fergus said his leg hurt and he didn't walk all day. He was almost 5. Again, the signs passed quickly and Rob even forgot to tell me about it.
November 9th we were at my parents’ two states away from our home, and he woke up crying with a stomachache. Fell back to sleep and was fine the next day and night. November 11th he woke again with belly pain. This was worse--writhing and crying on and off. Low grade fever. Tylenol helped a little. Pulled some strings with a friend of my mom's and our insurance company, and got in to see a local pediatrician rather than an ER. Worried about appendicitis. First CBC--normal white cells, mild anemia. Advised he had a virus. Signs lasted three days and then he was fine. Followed up at home with our pediatrician--he thought Fergus was fine and even said words he probably came to regret, "I doubt he's really anemic--look how pink and sturdy he is."
November 15 he had his preschool pictures done--boy do those resonate for me now. Then on the 24th he got up and wouldn't walk. Not complaining about pain but said he couldn't use his leg. I call Rob at work, and he remembers the time the month before. I decide he needs distraction and we go to a museum an hour away with friends in their van. He proceeds to crawl happily around the museum, or ride in his sister's stroller. I finally start to worry again. On the way home, he spikes a fever and we go to the ER once Rob gets back from work to stay with Norah. They suspect a septic hip--x-rays are normal, more blood is done. Again the anemia and supposedly normal white cells. An orthopedist is called in to do a hip joint tap (how horrified I was at the invasiveness of that). But the ortho guy thinks it is leg or knee pain and we are sent home on ibuprofen. Next day is Thanksgiving and we see the ped on call. She is puzzled and they are all still trying to blame a bad coxsackie virus. Friday we see our ped and ask for a referral. He sets up one for Monday the 29th, and by Friday night Fergus is walking and normal. He falls in his room one time and cuts his arm on a Lego (!)--it seemed to hurt/upset him and makes a funny persistent wound. Otherwise normal weekend.
Monday the 29th we see the hematologist (slash oncologist but we are not afraid because he has had normal bloodwork). The exam is normal, Fergus feels fine, the doctor is reassuring and believes a virus is to blame. Then he leaves the room to review the x-rays and blood slides we brought from the ER. My spider sense fails to tingle when he is gone for 80 minutes--after all he fit us in on a busy day. He returns with an ashen face and tells us there were "nasty" cells on the slides and that they are blasts, which the other hospital missed. Fergus has leukemia. We need a bone marrow aspirate the next day. I am naive enough that somehow I insist we go home for the night. I call my parents who get in the car. That night at bedtime I cuddle happy healthy Fergus and wonder at the toxic cells inside his body. I want to steal him away--he is well. But then all doubts are erased as he wakes up again, with fever and excruciating leg pain. We survive the night with no sleep and get admitted the next morning.