Theo’s Story

Site created on February 5, 2023

***UPDATE***
Allie and Mike are in need of some renewed meal support right now. The family is going through a particularly challenging time, so anything would be hugely helpful and appreciated. We've added dinner slots on MealTrain through the end of November. If you sign up for a date, no need to ask them what they would like -- they don't have the bandwidth to think about it or reply -- just drop off a meal or have food delivered at 5:30pm. Any questions or need the address? Text Rachel Saltzman at 847-508-7224. Sign up for a specific meal and date on this Meal Train schedule here: https://www.mealtrain.com/trains/320ddw

If you'd like to offer a donation to provide supplemental funds for some of Theo's medical treatments, feel free to do so here: https://www.gofundme.com/f/support-for-theo-kramer  (https://www.gofundme.com/f/support-for-theo-kramer ) Anything is appreciated. NOTE:  Please donate via the GoFundMe link and NOT the "Tributes" page on CaringBridge. Any "tributes" will not go to the Kramer Family; they instead go to CaringBridge, the non-profit platform we are using to host this website. Thank you!

Allie's post from February 4th: 

These are the most horrific words I will ever share, and I cannot believe I am writing them. On February 1, our world crashed and fell out from under us. We received the worst news imaginable: our 3 year old son, Theo, has a cancerous brain tumor. Due to its location and spread, it is inoperable, and incurable. It’s called DIPG (diffuse intrinsic pontine glioma), it is rare, and it is highly aggressive. His condition is rapidly deteriorating - in 3 days, he went from playing at school to being mostly in an unresponsive sleep-like state, nonverbal and with minimal motor skills. We began radiation therapy yesterday in hopes that shrinking the tumor will restore his faculties and extend his life by a few more months. We are exploring clinical trials we can enroll him in. But even with these treatments, the prognosis is very bad. We will lose him, it is only a matter of when. 

We keep waiting to wake up from this nightmare. We cannot fathom that this is happening. To THEO. Our Theo!! Our endlessly vivacious, passionate, whip-smart, deeply-feeling, wondrous boy. The center of our world. He had been a bit clumsy for a few days. We thought it might be a growth spurt, or some inner-ear vertigo from his latest preschool virus. He was significantly more anxious and irritable than usual, and when we noticed that his speech was slow and slightly slurred on Tuesday afternoon, we brought him to the hospital. And now here we are, sinking deeper into this nightmare every hour.

We don’t know how to survive this. We don’t know how to make it through the months to come. We don’t know how to live in this world without our son.

If you have any connections to doctors who work with DIPG, know parents whose child battled it, or have connections to experimental cancer treatments, please send them our way. We are at Children's Hospital Los Angeles receiving fantastic care, but we want to explore every resource we can. We are in the darkest uncharted waters of our lives.

My darling Theo, light of our lives, we are fighting so damn hard for you. We will do anything we can to fill every day you have left with magic and joy. We will go to the absolute ends of the earth for you, beautiful one.

Newest Update

Journal entry by Allie Kramer

Last fall, when Theo was having a hard time with the transition to preschool, he used to cry every morning when it was time for us to leave. “How do I be brave?” he would ask. We would always walk him through the same steps: “Take three deep breaths, give Blue Bunny a hug, and tell yourself ‘I’m okay.’”

I’ve asked myself this question over and over since February. HOW. How do I get through this? How do I be brave? It echoed through my head again a few weeks ago, as I stood before a group of our close friends and family, Blue Bunny in hand, to give Theo’s eulogy. 

I’d always said I didn’t want to have a funeral for him. It just sounded too dreadful, I didn’t think I could bear it. But when he died 4 days before his 4th birthday party (on Nov 4th), we knew we had been given an opportunity. The party was already planned. Vendors were booked. Family from across the country was flying in. We knew we needed to turn Theo’s birthday party into a celebration of his life.

And - it was so beautiful. Green everywhere, Theo’s favorite color. Lots of tributes and speeches. A breathtaking song from Rachel and a gutting video from Mike. Plant potting and rock painting for Theo’s garden. Tacos. Cocktails. Bluegrass. Tears. Theo told us many times that he wanted a “water truck cake” for his birthday so… that’s what he got. (Yes, I too had to google it.) All of this was made possible by my friend Elissa Kalver, who, along with Eric Kalver and their foundation We Got This, hosted the event in their yard and basically planned the entire thing. Just astounding generosity. To everyone else who helped out - I cannot thank you enough.

Yesterday marked 4 weeks since I last held my boy in my arms. We are trying to be brave, every day. The kind of bravery that’s the opposite of stoicism, the opposite of numbness. Crying bravely. Feeling bravely. Planning for the future, bravely. Looking to Theo, always and forever, to show us how it’s done.

💚

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