Monday, December 23, 2013

Bruised and Battered -- But Standing Strong

It has been, shall we say, a rough few days. We knew that it would be, but knowing something intellectually and living it, experiencing it -- well, these are two very different things.

When we started treatment -- such an unassuming word! -- for leukemia, Adi had 8 days of steroids, followed by several days of a powerful chemotherapy drug, Vincristine. This was followed by a series of Cytosar treatments, along with intrathecals, where methotrexate is injected directly into the spinal column.

HR Block 1 kicks off with an intrathecal, and is immediately followed by Vincristine, a 24-hour methotrexate jamboree, ALONG WITH steroids, IN CONJUNCTION with cytosar -- basically, it's like someone opened up the cabinet full of poisons, grabbed a bunch of stuff, and said, "OK, let's try ALL OF THIS TOGETHER."

You can imagine -- or, if you're lucky, you cannot imagine -- how the body responds to this. SPOILER ALERT: NOT WELL.

By Thursday, as the methotrexate coursed through his body, Adi was howling in pain. Here's the thing, though: what he did was scream, "I WANT TO GO HOME," over and over again, and everyone thought he was simply hysterical. It was Guy who figured out that it was actually the pain that caused Adi to go nuts. So on Friday, instead of treating Adi with a variety of psychotropics, we gave him morphine. And guess what? He calmed down. Like, almost immediately.

The methotrexate has been slow to leave Adi's body, which means he'll have extra mouth and throat sores. Of course.

We finally met with the psychiatrist on Sunday morning. She agreed that pain was the driving force behind Adi's explosions, and she instructed the doctors to make sure that Adi's pain is properly managed. He can have morphine up to 4 times a day, currently. In addition, he's taking a 24-hour drug to help keep him calm during hospitalizations, and we'll meet with the psychiatrist in her clinic once he's been discharged to figure out our plan of action for when we're at home.

Now that we can respond to Adi's pain when it starts to bother him, he's much calmer. I'm glossing over the worst of the last few days because I really don't have the strength to go back and relive it. Just trust me, whatever you're envisioning, it was worse.


Mara said...

This sounds awful, and I know we're only reading the tip of the iceberg.

I'm glad Guy figured out that it was pain that caused him to react that way earlier in the week. You'd think the hospital staff would have warned you how painful this could be, but I'm glad at least for the morphine.

My heart is breaking for you - as I'm sure yours is for Adi.


Marnie said...

How awful. I'm so sorry you all had to go through that. So glad you and Guy were able to figure things out and find a way to keep Adi from feeling that much pain again. Sending so much love. You are all definitely strong. I hate that you have to be so strong but I'm so proud of you for doing all you do. xoxo

Crystal T. said...

That suuuuucks. It's so tough sometimes to figure out what kids are trying to communicate and what they need. I'm sorry he's having such a rough go of it with the chemo. I hope you guys get a break from it soon.