On December 22nd, during the day, my wife returned to the hospital with J. Later that evening, I would take J back to the house, leaving my wife to stay with E.
This would be our new normal: one of us bringing J to the hospital, and the other one of us taking J back home after visiting for a number of hours. J was a handful at the hospital, often riding around the floor on a tricycle with one of us following him, telling him to slow down, and to watch where he is driving. If not on the tricycle, he'd be pushing the buttons on the hospital bed, making it go all the way up, or playing with toys in the playroom. The hospital fed E, but we were left to our own devices at mealtime. Breakfast was easy: instant oatmeal from home + hot water from the Ronald McDonald House Room. I'd compliment this with some fruit (also brought from home), or granola bars. Lunches and dinners were a bit more challenging, and usually ended up being instant soup, instant mac & cheese, Tim Hortons, or Subway.
On December 23rd, the results from the cultures came back. They showed that E did not have a bacterial infection. His fever was also gone. But, his neutrophil counts were still below 0.5. Because of the low neutophils, we'd be in hospital for at least one more night
As the days in the hospital ticked by, it became more apparent that we would likely not be home for Christmas. Christmas Day was supposed to have been with my side at my parents' house this year. Before having kids, we used to see both sides on Christmas Day, but it was just too difficult carting the littles frome house to house to house. So, after kids, we started to do Christmas Day by alternating sides from year to year. Keeping my family in the loop, we told them that there was an ever increasing likelihood that we wouldn't be discharged from the hospital. Similarly, with my wife's side, we told them that there were smaller and smaller chances that we would hosting on the 26th. We'd have to figure things out about when we could get together to celebrate Christmas and exchange gifts for the kids.
On December 24th, E's neutrophil counts were again below 0.5, so we wouldn't be going home for Christmas Eve either. We had a doctor, whom I believe made it his personal goal to try and get us home for Christmas for sake of the kids. He said he’d order a second blood test, to be done later in the day to see if E’s levels bounced up. In the meantime, I noticed that E’s nurse-practitioners from the POGO Satellite Clinic had arrived at the hospital. Shortly after, one of them popped her head in the door of our room and asked if we wanted to come down to the waiting area by reception because a group of people had arrived with a donation of toys for the kids who were in hospital. What a completely generous and selfless gesture. It completely warmed my heart to see the smiles on the faces of the children who, for one reason or another, had to be in the hospital at Christmastime. There will be more details about this toy drop in a future post. A second blood test was done around 6 pm to see if we could be discharged, and after waiting for the results, we found out that E had to stay. I packed up, got J dressed, and went home. J fell asleep in the car, and I carried him upstairs to put him in his bed when we got home. My wife and I had agreed to not exchange gifts this year. Experiencing some loss of income by taking care E while he is sick, extra expenses like hospital parking, as well as a lot of running around to E’s medical appointments, we agreed that buying gifts for each other was not practical and too much of a challenge. Nevertheless, I had a plan circumvent this. I was going to pick something up for her and put it under the tree and say it was a gift from the boys. Now that it was late on Christmas Eve, E was still in the hospital, and I was home alone with J, this plan was completely garbage.
On December 25th, Christmas Morning. J and I at home, E and my wife at the hospital. My wife and I had discussed that we wouldn't put our gifts under the tree because it would be impossible to get J out of the house to go to visit his brother if he knew he had presents. I discovered that Santa had been to visit, but he took the chimney that goes to the furnace room by mistake, and that was where he’d left the gifts. When we got to the hospital, we found that Santa had also paid a visit. He left a couple of gifts for E, and a gift for J. After visiting for a while, our nurse dropped in to let us know that on her and E’s doctor’s recommendation, we were going to be given "a pass", so that we could go home and spend Christmas with our boys. We'd have to come back the next day for more bloodwork, but we could get a short reprieve from the hospital. We returned to the house as a family, explaining to J that Santa had made a mistake and left the gifts in the wrong spot, and that it was time to open presents. We made some wonderful memories, and before you knew it, the night was over.
On December 26th, Boxing Day, we woke up, got ready, and headed back to the hospital. The temperature was quite frigid, so I dropped my wife, J, and E at the door, and went to park the car. By the time I got upstairs, our nurse was already in E's room and was in the process of taking his blood for the daily test. A couple of hours later, E's neutrophil results came back, and unfortunately, they were lower than they were the day previously. Dejected, I started to wonder if we'd be out of the hospital by New Year's. The strange thing was that E had started to perk up in the past 24 hours. His colour looked better, he had more energy, and he was babbling & singing like his usual self. We worried about how he could seemingly be feeling better, but his blood was telling us that he was doing worse.
I crashed that afternoon. I was at the end. I couldn't do the back-and-forth any more. We'd missed out on family time with both sides. We'd briefly been home on a pass for presents with the boys which was nice, but it felt like a tease. I just wanted my little boy to feel better, and have his blood results come back okay so that we could bring him home. I wanted to be anywhere but here. I was mentally taxed, and physically exhausted. I was beyond frustrated, and I just could’t do it anymore. Then, around dinner time, I was in the room with E while my wife and J were downstairs picking up some food. Our nurse came in to the room and promptly announced that we'd be going home that night! I was shocked. Apparently, SickKids had seen the latest blood results, and there was another marker in the blood that they had been watching called monocytes. Despite the low neutrophil counts, the monocytes had been trending up, and the oncologists at SickKids felt that it was an indication of recovery, and they cleared us to be discharged from the hospital. We were going home!
We’ve now been home for a little more than 6 days. I’ve been writing this epic post in fits and spurts, as time permits. For ease of reading, I’m likely going to split it into a few parts. Mentally, I’ve been up, and I’ve been down since we returned home. I’m happy that E is feeling better, and that we see his normal personality shining through once again. I’m happy that we’re home, and that we don’t have to do the back and forth dance, and that we don’t have to keep a 3 year old entertained and under control at the hospital without him having an epic meltdown. I’m also feeling sad, and down. This will often happen to me post-holdays, but this year it seems different. It’s really no one’s fault, but the plain and simple fact is that we missed out on Christmas this year. I’m not looking for pity, or sympathy, I’m trying to get things written down so they don’t infinitely rattle around in my head. We missed out on the last few ramp-up days before Christmas, the days where the kids are over-sugared, over-excited, and bouncing off the walls from anticipating the big day. We missed out on the last minute hustle-bustle, and preparations. Christmas meant so much to me as a child, and I just want to replicate the feelings of wonder and awe I had for my own children. I want Christmas to be a happy and magical time for my boys. The 4 of us were able to do presents, but we missed out on spending quality time with extended family. I realize that Christmas is just a day on the calendar, but it becomes difficult to recreate that magical spark when you’re doing your family celebrations later on. Now we’re out of the hospital and extended family is sick, so we’ve mostly been isolated while E continues to recover. Being in the hospital with E was beyond anyone’s control, but I feel like I’ve let my family down at Christmas. I commend all of the hospital staff, doctors, and nurses for taking such good care of us while we were there, but there really is no place like home for the holidays.
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