For a while before Nicky was diagnosed, I knew something was "off" but I couldn't put my finger on it. He was always a quiet kid but he was quieter. He was lying around more. He wouldn't try to walk up the steps. Then the rash came, he had a rash on his legs. I thought that he was allergic to the carpet. It didn't bother him so I wasn't too worried. Then one night I had gone in to my sons' room and Tom had the fan on and it was SO cold in there. I yelled at him and felt Nicky's head and he was warm. I thought he was coming down with something. The next morning the fever was gone and then came back later that night. Then it didn't come back.
My sister, who had lived with us with her five kids, for six months, moved out the week before and I just remember being so happy about getting our lives back. That was the best week. I got to really spend time with Nicky and it was quiet and it was just perfect. I looked at the rash on his legs and now it was completely covering both lower legs. I called the doctor and she said to make an appt and come in. She looked him over and said she wasn't that worried but to get some bloodwork done that day, just to be safe. So I went to the blood lab, they didn't do the test that she requested so I had to drive in to Children's Hospital. We got the work done and my dad and I took Nicky out to dinner on the way home. It was the last time I've been to a sit down restaurant with him.
An hour after I got home, the doctor called. I needed to take Nicky to children's ER right away. She's sorry, if she'd have had any suspicion she would have never sent us home. I asked her what she thought it was and she said the L word. I thanked her and hung up. My mind was racing. I kept thinking of my MIL and of Scotty, my nephew whom we've lost recently to cancer. I just remember thinking I wanted to die. (Not really but I don't know how to explain it. I wanted the pain to stop) I went downstairs and my mom asked what was wrong and I told her and my dad and I just looked at this perfect little boy playing in the playroom and I just didn't think this could be real. So I called my husband at work and I told him I needed him to come home NOW. And I told him. He was home in half the time it usually takes. And off we went.
When we got him to the hospital, we were in the waiting room and then pretty soon we were whisked back to a room and Dr. Goyal and Dr Alsaek (the fellow Nicky sees) came back and told us that they thought he had leukemia. They did put in a line but it was so hard because his veins kept blowing. He was screaming and I was holding his head trying not to cry. They sent the bloodwork off and it came back as ALL. He had so many blasts that he didn't need an initial BMA for diagnosis. We were put up on the hem/onc floor and we both stayed together for that first night. The next day, due to his high white count, they moved him to PICU. That was the worst. They had to put a separate line in to help remove the waste from his system and he kept blowing veins. They tried to put one in his hand and it blew so bad he had a bubble over the front of it. It took a month to resolve. After two days, we were put back on the hem/onc floor and things got a little better. Nicky had surgery for his port and it got to what I now term as normal. He started feeling better and was playing a little bit. Our hospital stay was 10 days, which isn't too bad. It was just frightening.
Denise