Dealing with Disease Progression

We hoped that we would be able to do everything we wanted to this Summer before Chad’s disease progressed.
And, we got our wish.

We enjoyed a wonderful time at the Great Wolf Lodge, a beautiful week at the beach, and a good visit with Chad’s sister in Tennessee.
We were granted our wish to go to Disney, but Chad is in no condition to go. His health has declined in the last two weeks; even more so in the last few days.
When we returned home late Thursday night, Chad fell. His right leg just gave out on him. He cut two fingers and bruised his shoulder blade pretty badly, but was okay. He can’t feel his right hand, so it was some time before we even knew that he was bleeding.

In the wee hours of Friday night/Saturday morning, he fell into the bathtub. He was going to the bathroom and lost his balance.
Chad is a big guy, and I couldn’t life him out of the tub by myself. He cannot bear weight on his right leg or use his right arm to help himself; so we had to figure out a way to get him out. It was 3:30 in the morning; I didn’t want to call my neighbors at that hour. (But I know I could have if I needed to…)
He finally was able to get out, even though I don’t quite remember how he did it.

Last night, he fell in the bathroom again, between the tub and toilet. I was so tired that I didn’t hear him get up, but I definitely heard him fall.
Poor guy. I can’t imagine what it must feel like to have no control over your own body.

He is sleeping a lot.
And he is very frustrated that he can’t always get his point across to me. He has a hard time with words and really struggles to find the right words to convey his needs.

He is using the cane all the time, which is good. But he also can’t really use it properly due to the loss of function in his right arm and hand. His right leg drags more when he walks, and his toes on his right foot are curled under.
It took him a few days to accept my help, but he is now letting me help him dress and eat.

Things have definitely gone downhill a lot quicker than I had imagined they would. He has moments of clarity where he talks in complete sentences, but most of his conversations are short and incomplete because he just can’t finish his thought process. And then there are times of complete jibberish, where I wish I could just understand one idea out of a string of words.

His taste buds are changing and he has noted that some of his favorite foods taste weird.

We’ve bumped up the steroids and pain medications in hopes of making him feel better. I don’t know that the pain meds actually work; I think they just make him sleepy. He does his best sleeping during the day, and is restless at night. Which really stinks for me because I really need the rest at night!

Sleeping with him at night is like having a newborn. He wakes up every two hours and I have to help him walk into that bathroom (since that’s where most falls have happened recently) and then make sure he eats. The steroids give him an intense hunger.
Some people have asked me about the purpose of steroids.
Well, to be honest, we are basically buying time. The hospice team introduced steroids before we left for Great Wolf, in hopes of perking him up a little bit and decreasing the pressure and swelling from the growing tumors. We hoped this would decrease the intensity of his headaches. But, sadly, it hasn’t. He takes so much pain medication, and it really does nothing for him. The doses he takes should knock a man out twice his size, easily. But Chad really remains unphased.
We know the tumors are growing rapidly because of the decreased function on his right side. We also know that Chad really needs a third shunt to drain the back area of his ventricles. He declined that surgery, so steroids were offered to help with that swelling as well.

He takes steroids three times a day and we’re up to 12mg. That’s not a huge dose, as we could build all the way up to 60mg daily before the end.
The steroids make him hungry, as I mentioned. But they also change his personality. The tumor growth also changes his personality, so who’s to sat which one is the culprit of his agitation right now?
For the most part, he is calm and very drowsy. But then he has moments when he gets very upset; particularly when talking or when he falls – who can blame him for that!

I am unable to leave him alone anymore, due to the falls and a little incident involving an unattended burning pan on the stove.
I hate this for the girls, as I feel like they deserve to have the best Summer imaginable and I just can’t do it anymore.

—

Carys finally asked me if Chad was going to die.
I have been in such turmoil about how to tell my sweet precious girls about Chad.
They know he is sick. They know why.
They just thought it would be like this forever.
I’ve been planting seeds here & there, and just let them lead the conversation.

Carys asked me point-blank. And I answered her.
She knows that Chad is going to die; and she knows it will be soon.
She asked a whole host of questions, like whether we would have to move and leave our things behind. I assured here that we would not be going anywhere – and that none of this is her fault. We cried together and she asked a few questions about Heaven – and I was really glad that she allowed me the opportunity to talk so openly with her. It was hard; but she made it easy on me.

Cailyn also got the talk today, but her reaction was different. She’s never known anything except Chad being sick. She was only 18 months old when all of this started, so she knows no different. She actually told me Chad was going to die a long time ago. Well before I knew it was coming. It’s strange how kids just know things sometimes.