As I said last time, the days in the hospital were a blur, and things after we got home were much different and more difficult than I expected. Let me explain: 

I thought the familiarity of home was going to be enough comfort to cover some of the wounds and new difficulties. It wasn’t. I sort of glossed over the month of twice-daily steroids, and I don’t want to go into a ton of detail, but steroids truly are angel and demon in one drug. There seems to be nothing better for targeting and killing this type of cancer cell, but the side effects are awful: massive weight gain, uncontrollable mood swings, aches, pains, etc. I am SO GLAD to be done with that month. I felt like I wasn’t going to make it. We held each other up, husband and I. We fought a lot – it was a stressful time – but we also carried each other in alternating stints. 

Then we found out sweet boy was in remission. That was an incredible weekend of extreme joy. But we were brought back down to earth, not in a crashing way, just a reminder we were still subject to the laws of gravity, when we found out the following Tuesday that he still had too much of a certain kind of cell, which put him in a higher risk category, which meant he’d be on a much more intense course of treatment. The drugs were more intense, and it’d last twice as long. Hubs and I tried not to be crushed, tried to think of this as the best way to make sure every bit of cancer in his body is destroyed, but the first few days after getting that news, all I could think about was how much worse the treatment was going to be for him. I was angry so I wouldn’t be sad. That’s pretty much been my move since all of this started – anger in place of sadness. Anger kept me moving, where sadness stopped me and dropped me into a heap on the floor. Things needed to get done. 

We’re moving through this phase now, day by day, moment by moment, taking the wins and trying not to focus on the setbacks. We trade off days for panic attacks or meltdowns, and there’s more time and normalcy between them as time goes on. We hold it together in front of the boys, mostly, though older son has reminded me a couple of times that we have control over how we act on our feelings, which should make me feel good that he does occasionally listen to us. And there are many good, joyful moments. Our little boy is back in all the ways that matter. He jokes and laughs again. He teases his big brother. They wrestle on the floor as if nothing is different, our older son taking care not to be too rough with his little brother who is doing his best to be as rough as possible with his big brother. There’s lots of hope, even though this is hard, really hard.

Someday I’ll be able to read this entry, and I’ll be reminded of things I’m so far past that I’ve forgotten them. I know I won’t need to be reminded of the kindness of friends and family, the amazing help and wisdom of nurses, doctors and Child Life specialists at the hospital, or the strength our family has gained through this experience. For now, we’re in it, but I can be thankful, and while I can’t plan next week, I can look forward with hope that we’ll come through this. In the meantime, if you are looking for a cause, check out the Leukemia and Lymphoma Society and donate to or join our team, Benny’s Brigade. Donate blood. Give a toy to Comer Child Life or a monetary donation to the hospital, or check out the donation needs of the hospital near you. I can’t tell you how much our boy has been helped and will continue to be helped by ALL of these organizations and groups. We can think ahead to a future of normalcy because of the work that they do, and for that we are incredibly thankful.