On August 24, 2007 Connor was diagnosed with Chronic Myelogenous Leukemia (CML). CML is a cancer of the blood system in which too many white blood cells are made in the bone marrow. This type of cancer is more common in older adults, but does affect few children.
In almost all CML cases the chromosomes in the leukemia cells have an abnormal feature called the Philadelphia chromosome. The chromosome results from a mutation where two chromosomes break, then parts from each chromosome switch places. This occurs between Chromosome 9 and 22. This chromosome is an acquired mutation, which means that he was not born with it and it will not be passed on to his children. Lucky for us it was caught in the first phase, which is the Chronic Phase, which is why it was detected during a doctor’s visit for a cough that was unrelated. As I said in the introduction, Connor was diagnosed with CML on August 24th. He had had a cough that was hanging on and since he was about to start school, I wanted to make sure he wasn't contagious. We went to the walk-in clinic at our pediatrician’s office and saw Dr. Rosenberg. If it hadn't been for him checking Connor's abdomen and feeling his enlarged spleen we probably wouldn't be where we are today. Dr. Rosenberg sent us that day to have a chest x-ray and blood work done. Connor didn't care much for the blood draw, but got a little eagle finger puppet and stickers which helped make it better. He thought the chest x-ray was pretty cool because the nurses let him look at the x-rays on the monitor when they were done. When we got back to the office was when it all hit. I had a feeling it wasn't probably very good news, but when I saw our peditrician Dr.Loeb and she looked upset, I didn't know what would come next. She explained that his white blood cell count came back extremely high and I would need to take him right away to Children's Mercy where a Hematologist would be waiting for us. I didn't know what any of this meant, so when I asked she said they thought Connor may have leukemia. You never expect this to happen to you that's for sure. I took Connor to Children's Mercy Hospital and Dr. Loeb was right, they were waiting for us. Everyone was wonderful there. They hugged you and tried to make everything better. They had a play area for Connor to play while we got everything ready for his Bone Marrow Aspiration and for me to complete paperwork. Mike and I did stay in the room with him during the procedure because he was awake and we wanted him to know we were there for him. He was a champ through it all! They then hooked him up to an IV bag and he and Mike played Nintendo Game Cube and ate cheeseburgers while they got us ready to be admitted to the hospital. When we were admitted Connor's white blood cell count was 335,000. Normal is between 5,000 and 8,000. They started him on a supportive drug called Allopurinol until they could confirm they found the Philadelphia chromosome and then they would start him on his Chemotherapy. It was confirmed on Tuesday, August 28th they had found the chromosome and they started the chemotherapy called Gleevec. We tried to mix it in water first. It took my sister, Kyra and I almost 2 hours to get him to take 2 little sips. I finally threw my hands up and told them to give us the pills. They sent a child psychologist in to try and help him learn to swallow pills, but he wasn't really up to it. At 6:00 that night they brought in the two pills. They said if we couldn't get them down by 6:30 they would have to put a nose tube in and we would have to do it that way. There was no way I was going to be able to stick a tube down my childs nose. Again Kyra and I tried and it took me basically sticking my fingers down his throat to get him to swallow them. We were cheering, dancing and singing once he got them down. Of course he wasn't as happy as us!!
Day +64 No admit yesterday but something is definitely brewing.....White counts and ANC are up a great deal from yesterday and platelets are down. Whatever test they run for the pancreas came back fine, victory, but now they are wondering if it's his gallbladder (all trial and error) so Monday we go to clinic and then he will have a scan Monday afternoon to look at that. If that comes back okay, then they will do an endoscopy-basically running a camera down through his GI tract etc to see if that shows anything. As of tonight, nothing is combating the nauseousness or abdominal pain he is having so he is miserable. Please keep praying this is just a minor bump in the road and things will start turning around.
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