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2/19/2017 Latest post:
On Wednesday, February 17th Xander and I went to Children's Mercy Kansas to have some blood drawn. I'd been talking with his primary care provider because of Xander's poor sleep habits, which have been going on since he's been around the age of 2. The doctor decided Xander should have a sleep study done, but blood work work would need to be done first. No biggie, we went, he got it done like a champ and I took him back to school for the day. About an hour and half later we received a call from our doctor that we needed to take Xander to the ER immediately. Why? That's what was going through my head....Why.... he's fine? The doctor advised that Xander's WBC (white blood count) was 10x what it should be. Could it be an infection, the lab made an error or worse. We drove to Children's Mercy main campus where we checked into the ER, they were expecting us. This seemed so strange, what could possibly be going on we needed to rush our perfectly fine 6 year old to the ER for? We were confused, scared and not sure what to think.
They wanted to redo his labs just to confirm it was not an error. We waited for an hour or so for the labs to come back, which seemed like it took 10 hours in my mind. The ER doctor came in and said unfortunately it was not a lab error, Xander's WBC was elevated to 136,700. The normal range is anywhere from 5,000-12,000. Ok, well what did all this mean? The doctor went on as we listened.....elevated WBC and 1% blast in the blood could mean childhood cancer. Further testing needed to be done. They told us they were getting a room ready for Xander so they could admit us to the hospital. I went numb, I felt like throwing up. The doctor sat with me, along with a box of tissues while I cried. We didn't know what to think. Eric was so much stronger than me and continued coloring with Xander, with tears rolling down his face. I had to leave the room, I didn't want Xander seeing me cry, he had no clue why I was crying and I think it started to upset him. I called my mom, barley able to to talk, "mom I need you, they think Xander has cancer." My dad was already on his way home from work and my mom reassured me they would be at the hospital soon.
Four hours later Xander was admitted and we had a room, 4th floor Henson, room 23. That's where we found ourselves over the next 3 days. It seemed like it took forever for any doctors to come and talk to us. Finally a team of doctors came in from oncology and hematology. He wrote this really long word on the marker board, Chronic Myelogenous Leukemia (CML). With what they were seeing in Xander's blood work, all signs were pointing to CML, although they weren't able to confirm this yet. Pathology was still looking at Xander's blood. He also wrote the word Leukemoid Reaction on the marker board, which wasn't cancer, but just as the word says a reaction to white blood cells. Nothing could be confirmed yet and we were told they would know tomorrow. Xander had an IV pushing fluids all night in hopes to thin his blood, because it was so thick and help decrease his WBC count. The doctors advised they would need to do a bone marrow aspiration that was scheduled for 11 am the following day. We didn't sleep that night. All I could think about was that fact that our sweet baby boy could have cancer. The next morning his WBC decreased to 121,000, it was the right direction but still too high. How? Why?
Thursday, February 19th, was the worst day of our lives. At about 5 pm that evening the doctor took Eric and I into a private room so he could talk to us. Xander has been diagnosed with Chronic Myelogenous Leukemia (CML). The tears rolled and kept rolling. I had so many questions and I was only hearing 10% of what was coming out of the doctors mouth. We were in shock to say the least. We talked to the doctor for quite sometime and when he left the room, Eric and I just cried together, held each other and asked Why? Only God knows why, right? God doesn't give us anything he knows we can't handle. I was doubting God and why this was happening to my sweet boy. We walked back to Xander who was so innocently just sitting on the bed while Grams (my mom) was in the room with him. I remember looking at my mom and couldn't control myself or my emotions. I lost it, I completely lost it. My mom prayed with me and we walked out of the room. I didn't want Xander to see me like this, he had no clue what was going on. I don't remember the next several hours after his diagnoses. It's hard as parents to know your child is sick. Xander has always been our active, healthy, wild and crazy little boy. He has a heart of gold and is the most caring and kind little boy you'll meet, and those qualities will never change about Xander. We are home now, adjusting to our new normal life with the support of our family.
I will continue to make updates on this page with new information as I am still learning about CML, update on what Xander's treatment is for the rest of his life and milestones that Xander is hitting. We ask that you pray for Xander and our family as we adjust to a new normal.
Psalm 147:3 “He heals the brokenhearted and binds up their wounds.”