Hm. It's been an interesting week.
On Monday, E finished the induction phase of his treatment. The 29 day course of dexamethasone was complete, so his insatiable appetite would start to taper, and his steroid-induced mood swings would start to go away.
On Tuesday, we were told that the preliminary results of his blood work tested negative for leukemia cells which is a good thing. Further results were still forthcoming, and this would determine whether E remained in the standard risk classification, or whether he would be bumped up to high risk. The prognosis is the same regardless of standard risk or high risk, but high risk is a more intensive treatment plan to beat back the leukemia.
On Wednesday, E woke up with an elevated temperature. 37.2°C. 37.5°C. Then 37.8°C, which is the magic number for a fever. Fever can be a serious condition for cancer patients, so we were told to call SickKids if E gets a fever. We called & were told to bring him in. We had a slow drive down the DVP, so we didn't arrive until about noon. We checked in to emergency, where we were fast tracked into a room. Nurses arrived to do vitals, and to draw some blood. Almost right away, we were told that they were going to admit us, and we should only be in emerg for 1.5 - 2 hours. I guess things were unfortunately busy up on the 8th floor, and all of the rooms were full, so they did not have a place for us. We waited in emerg until about 6 PM, when transport arrived to bring us upstairs. There was no room in 8A, so we were placed into a room in 8B, which is typically the ward for patients undergoing bone marrow transplants. My mother-in-law picked up J from daycare, and I returned home later in the evening. My wife stayed over at the hospital and had a difficult night, due to E's feeding schedule and the nurses' vitals schedule not meshing. She didn't get much sleep at all.
On Thursday, I had to arrange daycare pick-up coverage for J, and a ride home for my wife. My parents were able to help out. My mom came down on the train, and I had a few errands to run, so I didn't make it in to the hospital until almost 2 PM. Later in the day, we were called by E's oncologist to let us know that the minimum disease residual (MDR) test had come back negative. This was wonderful news, and it allows E to continue in the standard risk bracket in the consolidation phase of treatment. This news does not mean that E's cancer is gone, but it does mean that the number of leukemia cells in his body is below our ability to detect them. Induction had achieved its goal! Blow it out your ass, leukemia!
On Friday, I woke up for the third time around 8am, and I had a much better overnight than my wife had the previous evening. E had his vitals checked at midnight, 4 AM, and 8 AM. His feedings lined up perfectly with his vital checks, and he went back to sleep easily. One of the oncologists arrived to examine E, and he found that there was some tenderness in E's right side. We were scheduled to go have an ultrasound at 1:45 PM to check things out. The ultrasound came and went, and we returned to our room to wait. And wait. And wait. At this point, my brain had become my own enemy, and I was feeling numb and sick to my stomach, having convinced myself that the reason for the long wait to hear results was that they had found another type of cancer in E. Finally, around 5:30 PM, we were told that E had something called an intussusception, where part of the intestine folds into another section of intestine that is next to it. It can be potentially dangerous condition that can ultimately lead to an intestinal tear and infection of the lining of the abdominal cavity. The doctor told us that E's intussusception had resolved, and that we would be discharged, but we needed to watch for a number of symptoms like vomiting, "jelly stool", bloody stool, or intermittent crying. We were also told that we would have to bring him back to SickKids if the pain had not subsided in 24 hours.
On Saturday, E had not exhibited any of the symptoms, but he still had tenderness in his right side. We called SickKids & spoke to an oncologist. We were told not to worry about the tenderness, but that we should call back if he experienced any of the intussusception symptoms.
On Sunday, E woke us up at 12:30 AM. He was crying intermittently, and did not want to seem to settle down. We again called SickKids and decided to bring him in to emerg. We gathered up overnight bags for ourselves, as well as food, clothes, and the general diaper bag contents for E. Because it was the middle of the night, we also packed things for our older son J, because he would have to come with us. We loaded everything and two kids into the car, and by 1:15 AM, we were off, and arrived at SickKids near 2:00 AM. Now, when you're an oncology patient, you get the five star VIP treatment in the ER. The oncology doctor speaks to ER to let them know we are on our way, and we get to skip any lines, and are fast tracked into a room. Another ultrasound was done, along with blood and urine tests. The ultrasound showed no intussusception, but it did indicate some inflammation in the cecum, likely caused by the harsh chemotherapy drugs during the 29 days of induction. We were again discharged, and were told that he just might need a bit more time for the inflammation to subside.
All in all, quite a week with much more time spent in the hospital than we had originally anticipated. A positive takeaway includes E's appetite and demeanour returning to normal after stopping the steroid. He is much more happy and smiley, and we're quite happy to see his wonderful personality shining through. The absolute best though, is the MDR test coming back negative, showing that the level of cancer cells in his blood are below detectable levels. Early on, one of the oncologists told us that we needed to celebrate the small victories, and this is one that definitely deserves a hurrah!
