1516 Days

I feel the need to start updating more on Simon and how life is going.

Today is 1516 days since diagnosis day.

1378 days of No Evidence of Disease.

1273 since his first stem cell (bone marrow) transplant.

So we’re just over 4 years out from diagnosis. Almost 3 years of being done with treatment.

We had to start Simon on therapy and medication for anxiety/PTSD/medical trauma just over a year ago.

With the recent horrible news of his friend dying and another friend relapsing he has been struggling.
A lot.
To the point where we’re increasing therapy and increasing his medication so he can cope.
Any change to plans or how the day is going sets him off.

I’ve been trying to find a job, and thought I found a good one yesterday, and he had a full meltdown today that he doesn’t see me enough as it is.

He’s sleeping better. Eating better. But still says “I had cancer, it’s hard for me to do things”
“If I don’t tell people I had cancer, they won’t know I’m a real warrior/the real batman”

The emotional aspect is so hard with after treatment.
Now with scans in a few weeks we also need to see a urologist to check on some concerning things.
He has only grown a half inch in 18 months.
He was predicted to be 6’3″ and now might make it to 5’5″ thanks to the radiation and treatment.

And yes, I keep hearing “at least he’s alive.”
AND I AM GRATEFUL. It’s just hard to live with the after effects of what we had to do to his body to keep him alive.
He’s been tortured more than most adults ever will be in their lives.
And it’s just hard.
It’s hard to watch him struggle, it’s hard to see changes, it’s hard to watch the post-treatment effects.

He’s still so sweet and wants cuddles all of the time.
He’s doing so well in school and loves his friends (even says he has a girlfriend?).

I need to pray harder to handle things better.
I need to be more patient with him.
He’s a genuine angel who didn’t deserve this.

One thought on “1516 Days

  1. Dear sweet boy. That’s the thing I’m increasingly learning about trials. They are always a thousand times more complicated for those dealing with them than anyone on the outside would suppose. This isn’t just, “He had cancer and now he doesn’t! Hurray!” There are lingering physical and emotional aspects that will affect him and you guys indefinitely. I’m so hard that the exhaustion of this has to continue on. I hope that the powerful and good This that are meant to come from this will become increasingly apparent in your lives. Love to you guys!


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