I need to get this post out but I’m exhausted, falling asleep as I write…so please excuse the tired and terrible writing that this entry is…
The past couple of months since Ethan started school have generally been great. Until the last two weeks, Ethan was at school almost every day except for planned chemo days. He has been going happily, eager to learn and see his friends and be part of it all. As expected, steroid weeks have been difficult, and the extreme heat made for a handful of very tough days. His “normal” is tired and emotional, yet every day he works so hard to excel academically, keep up socially, and stay composed. In general he has been doing better than we expected. Check out some of the photos below to see some of the highlights from September and October…
And then we hit a year… This past Wednesday (October 28) marked the one year anniversary of Ethan’s diagnosis. While this date was on my mind in the couple of months prior, the events of the two weeks that preceded it very much heightened my emotions surrounding the one year date. About two weeks ago Ethan had his first couple unplanned absences due to tiredness and a bad cough, and then he had a week of what seemed like extreme tiredness and emotionality, with a few difficult days at school. A week ago Friday (Oct 23), Ethan went with Steve and Caleb on his Indian Guides campout, which was the same weekend and same location as last year’s campout that preceded his diagnosis. Like last year, I received reports that Ethan was tired and not integrating so well, and then Ethan came home Sunday morning with a fever which resulted in a required trip to the ER and hospital admit. His labs came back with extremely low blood counts (0 Absolute Neutrophil Count, 7.4 Hemoglobin, and 22 plateletts), numbers that were frighteningly similar to his diagnosis numbers. I think especially because my mind was on the one year day coming up in just a few days, the low numbers took me immediately back to that day last year and I spent about 24 hours fearful that this could be a relapse. (We had been told that when all 3 numbers drop, that is a possible sign of relapse). It took about 24 hours for us to learn that certain viruses and infections could cause the same drop — and Ethan tested positive for rhinovirus (the cold virus), so that was the culprit. When the 28th came along, Ethan had had a blood transfusion and was feeling better, but we were still in the hospital waiting for his counts to rise before he could be discharged. Ethan ended up missing all of Halloween week at school — crazy clothes day, crazy sock day, the Halloween parade, his Halloween party — also all reminiscent of the week he missed last year when the diagnosis happened. And from Sunday through Thursday, the late night shift changes with Steve, when I was driving home in the dark to the kids, brought me back to those terrifying nights last year when I drove home each night feeling like it all had to be a nightmare that was going to end soon. Together, the events of this past week leading up to 10/28 felt like a blatant reminder of Ethan’s tenuous situation, that we can’t take anything for granted, and of the long difficult battle that we are very much still fighting.
I had decided a couple of weeks back that I wanted to “celebrate” the one year mark with a family dinner and treat. But as the anniversary day approached and it was clear that we would be in the hospital, I wasn’t so sure that we all would be in a celebratory frame of mind. Then, Tuesday night 10/27 at a best friend’s birthday dinner when I had questioned aloud whether or not to celebrate, a close friend responded with “why would you celebrate? Isn’t that odd? What do you have to celebrate, you’re right in this middle this.” That question caused me to think for a second, but it led to my deciding with more resolve that yes we do need to celebrate. Reflection helped me realize that I do still feel angry that Ethan has to go through this and that we all have to live for so many years with a fear that perhaps all parents have but ours penetrates so close to the surface that it could explode at any minute. Definite anger and sadness. But I think much more powerful than those emotions are feelings of gratefulness and pride and strength.We’ve gotten this far, almost 1/3 the way through and hopefully the hardest part behind us — and we can keep on plugging along, enjoying the good days and getting through the hard ones. That’s a reason to celebrate. Whether we are in the hospital or not! So we did…with a “family dinner” in Room 549, some cake, and some sharing of positive thoughts. It made Ethan happy, it focused us all on the positive, and it felt like the right thing to do.
Ethan ended up getting discharged the afternoon of the next day (10/29), despite blood counts still in the critical range, because the oncologist decided it was better to let him recover at home. So while he missed Halloween at school, he was out in time for Halloween at home, which he wanted more than anything. He got dressed up and headed to our friend’s house with so much anticipation — but the night didn’t turn out so well for him. I think there were too many people, he was tired, he had to ride in the wagon while the other kids ran along … and he came home unable to contain his tears. He explained that he just wanted to have fun like everyone else, yet he couldn’t. He couldn’t figure out how to enjoy one of the most fun days of the year. And it bummed him out.
My guess is that Ethan’s blood counts are still low, which is intensifying his emotions. But I also think things were going so well (at school, playing tennis, seeing friends, etc), and this bump in the road (just a simple cold that put him in this hospital and caused him to miss a lot) has reminded him just how not normal his life still is. And that’s a hard reality that he has to face for a long time.
To close, yesterday (10/31) also marked the anniversary of the start of Ethan’s treatment, and we are now on Day 2 of Year 2 of treatment. He has not had any chemo since last Sunday when he was admitted to the hospital, because chemo is held until blood counts go above critical levels. We return to the hospital for bloodwork tomorrow, and hopefully his counts will go up enough to return to school and resume his daily chemo. We start off this year with the events and emotions of the past week reminding us that the upcoming year will also be full of many ups and some downs. The road is unpredictable. Day by day, we’ll get through them all.