Friday, April 23, 2021
Day 7
The greatest words you will ever here
We got it all
It’s benign
You’re recovering like the brave lovable smart son you are - I love you like I didn’t think I could love anything. When I heard those words I stepped outside and it was like the day you were born - I never felt so light - the sky never so blue or the breeze on my face never so soft and cool.
Wednesday, April 21, 2021
Day 5
“Got it all and benign” maybe the greatest words I’ve ever heard in my life. De. Cohen operated on you and said these words. It was an amazing feeling - we’re not down yet but we cleared the first hurdle -
You’re in a lot of pain. You’re tough. Next up is removing your head tubes to see if the spinal fluid flows. Once we have that - we’ll be in a new world again
Love
Dad
Saturday, April 17, 2021
Day 2 continued
Day 2 was better - normalized a bit. You were talking and smiling and being a smart ass. It was wonderful / they took your breathing tubes out which was the first step to making you happy. You have your iPad and Nintendo / we listened to the os and I read you a story about the Indians signing manny Ramirez and Jim Thome. It was a good day for us.
At home I saw Ella Piper grandma and ms Steph. They all looked concerned but saw that I was better and that made them better too. Ella wants ms Steph to adopt her of course.
We talked to the doctors more - you have a large growth near your brain stem - about the size of a smaller golf ball. You have one of the best surgeons in the world operating on you and you’re in the best place in the world to help you. After they take the mass out - we see what it’s made of and tackle what’s next.
I think I’m all done crying until the next time - I think it’s time to fight and time to stop laying here crying. You aren’t crying you tough little guy / your mom isn’t crying - she’s a machine right now. It’s time for dad to get off his ass and get in the game .
Friday, April 16, 2021
Day 2
... and a continuation of day 1.
The ambulance came yesterday and we got to the hospital and the folks at gbmc saw you were out of it. Thankfully we both got in the ct machine so they could see in your head and then they saw swelling and a mass and the good people at John Hopkins came and got you - they found a 3cm mass in your lower brain stem - which is common for kids that have cancer there.
They put a drain in your head to help w the pressure and here we are on day 2 waiting for more information.
I’m so proud of you. I’m so proud you’re my son.
Yesterday I was not strong for you / I felt so sorry - I cried and held my knees - I did it for me. Well / that was selfish / you need me - and you don’t need my tears. People say all the time that I’m a “good dad” - well that is about to get really proven.
You’re gonna make it - and we’re gonna do all the things we’re supposed to do.
Thursday, April 15, 2021
The worst day of my life
Well buddy - we did it - we manage to match both worst days... although you won’t remember it I sure will
I don’t really know how to express things today but I almost lost my son. My friend. My life. My mind. I don’t even know what to say - I don’t think there will be a need to write this because I won’t forget these feelings but - I just wanted to talk to something. And right now there’s nothing or no one to talk to you other than you -
You fell down at school while at home - and threw up and your mother called me and you were acting like yourself. And she called the ambulance and saved your life... I’ll tell you the rest another time - I can barely type this much.
I’ve never really prayed to god - but I know you have - and I know that if there was a god and he was smart he’d want someone like you around - he’d want my son to be around. I’d do anything to trade places w you - anything and I would do anything to talk to god to help you I just want my son to live. I want my son to live the life he deserves to live.
Losses
I keep seeing all my “friends” grow older. I see them still celebrating with people - now I am seeing it on social media and knowing what I know about social media people really only post for attention. Besides that I see people gathered, smiling, with lots of people taking pictures.
I don’t have that anymore. I don’t have any community of friends anymore. I have one here or one there one “hey how ya doing” but I don’t have any invites coming. I don’t have anyone looking to hang out with me.
Hell I couldn’t even throw my chili cook off 2 years ago because I was so out of it.
Im scared.
I’m jealous of happy people with lives and friends and community.
I’m going to be alone for the rest of it. That’s ok. I just have to learn how to deal with it. And also realize that these are my choices and my behavior.