Monday, June 09, 2014

Finding my voice

So. I stopped writing for a while. And people noticed and send me email and tweets and messages via Facebook, and I sometimes responded, but I mostly didn't. Because it was so hard. It was so hard, and so exhausting, and when I look back at my last entry, Max was dying, and I remember all over again what came after that.

Max died.

He died while we were away from the hospital for a day, so it was a terrible kick in the face when we came back.

And almost immediately afterwards, we were faced with another imminent death, a four-year-old who had been battling cancer for three years. The day I met this boy, we were on the outpatient ward, and he was building with Legos.

"Hey, is that R2D2?" I asked him, and he looked at me with something bordering on respect. "How did you know that?"

"I know everything," I told him, and he nodded. His mother and grandmother smiled.

A few weeks later, when we were both inpatient, someone gave Adi a gift he couldn't possible play with -- some sort of complicated building kit. We asked one of the nurses who on the ward might like it, and she immediately suggested this four year old. We took it to his room, and his parents were thrilled.

And suddenly, they were in the room at the end of the hall, and the nurses lingered and whispered, and his family came in droves.

He died.

And in the meantime, we had a port infection that eventually cleared up and we were discharged and readmitted and discharged again.

And then he had this weird pain in his stomach, and he wasn't allowed to eat for a few days, but then it cleared up and things went back to normal, and it was Purim and Adi was feeling so good that we even took him to see his school friends for an hour.

And then I went on this trip to Italy for cancer moms, and that was AMAZING and I made a new friend and that was AWESOME, and then I came home.

And then Adi went in for outpatient chemo, but he was in terrible stomach pain again, and within 24 hours he was having emergency surgery and it was FIVE HOURS LONG and the surgeon came out and told us that he had a perforated bowel and his stomach cavity was full of fecal matter and it took them half an hour just to wash it all out, and they had to perform an ileostomy. "You need to pray that there's no infection," he told us. "We've done what we can, but if there's an infection..."

When we went in to see Adi in the ICU, he was intubated and sedated, splayed out like a frog in a high school biology class. He stayed that way for several days. And then, thankfully, they let him wake up and he was extubated, and after a few days we were transferred to the surgical ward, where we stayed for a week.

We had to learn how to care for Adi's stoma -- it was horrifying at first, but now it's mostly just annoying. It's a little like having a newborn -- I can never be away from him for more than an hour and a half.

Finally, we were readmitted to the oncology ward. In the meantime, two more children had died there, and another three died in the two weeks that followed.

Adi was inpatient for 6 and a half weeks. After 30 days -- THIRTY DAYS -- we were discharged on a Thursday afternoon, to come back Friday, Saturday, and Sunday for chemo. But on Saturday night the hospital called to let us know that new cultures had come back, and Adi needed to be readmitted. So, six and a half weeks inpatient, culminating in the removal of his port, because it was infected.

We have been at home for almost three weeks now, which is fairly unbelievable to me, because we haven't been home for this long since we started this whole sick adventure.

I am slowly, so slowly returning to something resembling normal. I sometimes remember to return phone calls and emails. I make breakfast and eat it. I take walks at night. I check on my sleeping children. I wake up in my own bed.

And I can think about writing again.


Crystal T. said...

I don't have the words to adequately express how much I wish you didn't have to go through all of that horror. I wish there was something I could do or say to offer relief. I am glad you got to take a trip to Italy - I hope that helped!! And I hope this period of being at home and relatively stable continues!

Steve said...

We love you.

Mara said...

Selfishly, I'm glad I can read a blog post from you - because I feel like I'm sitting in your living room, rather than a million miles away. But as your friend, Damn, I wish there didn't have to be any more blog posts ever, amen. I love you guys.