February 10, 2017
I took more time than I should have to get ready.
I had a leftover dessert from Zupa’s from two nights before that I was excited to eat.
So I posted a picture of it on social media.
As I’m about to take a bite I get a call from Caleb.
We had horrible reception in the basement so I called back on the landline upstairs.
I have no idea how many doctors were in the room with Caleb and Simon.
I don’t recall many of their words before except they saw something at the bottom of the echo.
And they saw something on the CT scan that told them right away what was going on.
Multiple/Many tumors throughout his body.
I couldn’t breathe.
I started just saying “I have to get up there, I have to get up there” over and over.
Caleb was more quiet.
The doctors told me to not drive myself, to get someone else to drive.
I found out later he broke down afterwards.
My mother in law was home with me and ran downstairs to hug me.
I called my parents and shakily told them.
I couldn’t feel my fingers. I couldn’t feel any part of my body. Everything went numb.
I hurriedly packed a bag for Simon- all I knew from childhood cancer diagnosis’ was they start treatment immediately. I wanted him to have some comfort items, more clothes.
Then I did drive to my parents with Meg.
I don’t remember driving there.
I got to my parents and we had a quick family prayer.
We decided we’d leave Meg with my sisters and my dad drove to get my mother in law since she wasn’t sure she could drive either.
The drive to the hospital my dad was trying to keep us distracted.
It didn’t work super well as I still felt numb to everything.
By the time we got to the hospital so many family members were already there. I still regret not just going straight there and that so many more arrived before me.
I couldn’t get to Caleb or Simon right away, the room was so full of people.
Shaun (brother in law) took notes of what the doctors said.
I couldn’t hear him over the talking in the room.
I am not a quiet person and usually get shamed for it- but this time when I yelled for everyone to be quiet it went silent and no one said anything to me for yelling.
Shaun went over the notes, Caleb elaborated a bit.
I googled some words.
I hugged Caleb.
I went to Simon and he was fine- he’d gotten tons of new toys already and had so much attention. He was happy as can be.
I finally grabbed Caleb and we went for a walk.
We went to the Children’s garden as I knew no one would be out there since it was winter.
We could barely talk. Shock. So numb.
We went back to the room and slowly people started going home.
I think at some point I went to pump as Meg was only 3 months old. I don’t remember.
Some doctors came and told us we were moving to Oncology. I didn’t even know if the elevator went up or down at the time, I had no idea where they took us.
Once settled in a new room 2 doctors came in and spoke to us, kinda going over what they thought, what our next steps would be. Neuroblastoma was not confirmed yet though the only other option could be Wilm’s.
Then we were told we were going home. We were shocked of course, thinking they’d start treatment right away. But they felt it was slow growing enough to take some time to really figure out what it was. We were elated to go home but still so numb, not knowing how we should feel.
Caleb’s sister brought us Arby’s as we hadn’t eaten all day.
I have not been able to eat Arby’s since. It makes my stomach turn.
Our bishop came up in the afternoon to be with us. Poor man at the time had two families in the ward whose kids had cancer.
I really don’t remember what was going on once we were home.
I know we had Simon on some pain medicine.
I know he slept well for the first time in a while.
I know I hugged my kids and husband tighter that night.
I know we had some strong, sincere prayers.
We knew everything would be alright., We had the comfort from our Heavenly Father to know he knows exactly what we would go through.
Today being the first anniversary of Simon’s diagnosis I tried to not think about it. I tried to put off writing this down until later in the day. We’ve had a good day today. I took Simon out for a bit and he LOVED it. But he gets tired fast so we weren’t gone long. We did some silly things, we didn’t remind him of the day. I had my emotional breakdown yesterday, thinking of how hard this last year has been.
Thank you to everyone who has put up with us this year 🙂
We have the most amazing family, friends, ward members, new friends, and cancer family. Bless you all for standing by us, supporting us, feeding us, and just listening and praying.
We love you and are forever indebted to everyone!