We received Shane’s official diagnosis. We waited all day to hear from the doctors. There was a weight on us. Our baby had cancer, but as we mentioned before, when we left the hospital two days before, the doctors said it was treatable. We were optimistic.
At 4pm, my phone rang. I hate that ring and have since changed it. It’s just one of those generic Apple ringtones, but whenever I’m out and about and hear it, it brings me back to that moment.
The call started on speakerphone and then Paul quickly turned it off. “Shane has alveolar rhabdomyosarcoma. We were afraid of this.” I could tell he was struggling with what was being said. The words he scribbled on the paper were big and difficult to pronounce. What the hell type of cancer was this? What was very clear is that he had a sarcoma and those were not good.
March 28, 2015
Shane made it one year since his cancer diagnosis. This should have been celebratory in so many different ways. For us, it was a silent and bittersweet celebration.
Shane was struggling. The difference in his body and himself was huge since the beginning of the month. He no longer walked, played and by now was barely eating. My last conversation (the 27th) with PACT team was me not fully comprehending why I couldn’t start feeding him via his g-tube. It was the nature of cancer to begin to starve the body, they said. Feeding through the g-tube wasn’t going to change what had already begun to happen. I just didn’t get it. I refused to believe this was the begining of the end. I was furious.
We spent the day together, the 5 of us. Making memories. Some of those memories are so painful for us to look back on. For Chase, they capture some of his favorite moments with his brother. Shane allowed him to hold him. Ella got to hold him. We spent the day and night holding him, crying and not knowing how much worse it was about to get.
March 28, 2016
The day reflects my mood. Grey and rainy. The anxiety is coming in waves. We made it through another holiday. The kids love Easter. It was a nice holiday, but it’s one that tugs at our hearts. Shane only celebrated one Easter with us and he had just been diagnosed.
There is a lot of anticipation leading up to Wednesday. What do we do? How do we act? How will we feel? I have no clue.
If I get up and get the kids to school for the day, then I will consider it a win.
It’s all trauma that we are re-living. The interesting thing is no matter what we try to do, our bodies and minds are doing their own thing.
March 28, 2018
This will be the first year since Shane’s passing that the kids will be off of school. Paul and I usually spent the day together, mostly outside breathing, remembering.
Three years seems like a lifetime and yet just a moment ago. I should be registering Shane for Kindergarten. He should be playing with his little brother as the big brother. It’s such a loss.
I’ve been touched this week by the sentiments of some and emails from others. It’s heartwarming to hear how Shane touched your lives. For such a little guy, he had a brilliant light and spirit. His eyes were deep and soulful and his giggle would always make you smile….even when the giggle took every bit of his strength..
So, on Friday I still don’t know what we will do. I do know we will all be together. The kids know it’s coming. I see it in their actions, drawings and words.
It’s a solemn day for us, thank you to those of you who have reached out and recognized that.