Eliana's Story - The Fight To Save Her

05/01/2026

I have been given dates/times for ALL of Eliana's quarterly tests. MRI, Xray, blood x2, eyes etc. This is her first round of tests since starting the treatment 3 months ago. I thought I was almost okay these past several weeks, like I was handling it. Now I know that I was merely existing in a bubble created by Eliana doing well for a decent period of time finally. Now this is real again. Like RAW real. And I am not okay. Its all such a mind game - I see the tumor in her weight, sweating, words/language coming and going, her balance, her seizures (which are frequent sometimes, though brief)...I see it all, but it becomes somehow normal, and your mind puts it away somewhere. But now...now I can't 'put it away'. And its ALL bubbling to the surface. I don't know how people get through this, I really don't. I know, you just do. But still..... This is impossible. That freight train is just sitting on the damn tracks ahead of us. I see it. Is it moving? I feel like its moving. I'm terrified that its moving...

I have been cautioned that they may not see any improvement at this time (if there ever will be any) in her tumors from the treatment. If its not working though, if she's not one of the lucky 49% that see tumor growth slowed or stopped, they could see growth or involvement in other areas. I hate unknowns. But sometimes knowing is harder. I miss when I didn't know that Eliana had this. When I was blissfully unaware of what was going to happen.

On a lighter note, my girl was so happy today, and loved playing with the wood chips at the park I took her to. And with the Minnie and Mickey balloons I got for free from someone. She is happy. She is in pain, but she is happy. She is my heart. God, are you paying attention??

04/30/2026

This girl… ❤️

She is doing well overall, though she lost her words again yesterday. She is walking cautiously on most days, several steps at a time, which is great progress. She continues to grow at an alarming pace (out, not up), and it is SUCH a challenge to get or make clothes that fit her. I have to sew most of her clothes that I buy to adjust them to be able to fit her. We go for walks most days and she loves to look for birds and airplanes, and she insists I read her several Disney stories from the same book every single night; she never gets tired of any of them lol.

My leave ran out last week, and its crickets from the company that is supposed to have taken over the longer leave, so no pay at all right now, which is scary. I am holding out hope for her May MRI results (but fear is a huge monster that keeps creeping into the front of my thoughts). I try to keep busy working on the house/yard for a distraction and to work through it, but its hard.

Her medication dose was increased last week as she's grown so much. She is tolerating it well, but is in a lot of pain all the time from the myalgia it causes. She also gets mouth sores sometimes, which is problematic for eating. Together with the pain and lack of words, she is frustrated or grumpy a lot. I miss my happy girl, and mourn all that has been lost. This is hard.

She has been going to daycare for 3 hours a day once or twice a week for 2 weeks now, and loves it. She loves playing with her friends there. I am hoping I can go back to work at the end of May after her results. BUT, her results just have to be good. 49%. Just 49%. It only works for 49% of kids, and that lives in my head all the time. I don't want to leave her and go back to work, but I have to. Have I said this is hard??

04/21/2026

On a lighter note, happiness today was watching planes land at the airport. And a Timbit!

04/21/2026

I saw this on one of my support groups online and boy did it resonate with me; It is so true. My girl is doing well lately, but I still know the reality, and that it could change literally in a heartbeat. Its trauma over and over again, each time she has a bad day. I'm so grateful she is here, and yes, focus on the good etc etc. But it doesn't change what I know.

People think grief starts when someone dies.
It doesn’t.
It starts the moment you realize they might.
Anticipatory grief is waking up every day knowing what’s coming and having to act like it’s not.
It’s memorizing everything, while silently mourning it all.
It’s noticing “lasts” in real time and pretending you didn’t.
You don’t just lose them once.
You lose them slowly.
In pieces.
And you have to carry that while still being everything they need you to be.
By the time they’re gone, your heart has already been breaking for months and sometimes years.
So no—the worst part wasn’t just losing them.
It was knowing you were going to.

04/16/2026

Happiness is a box… ❤️

04/14/2026

Things have been going so good with Eliana, and she made her second birthday, so maybe God thought I needed my head messed with a bit? Progressively Eliana has lost most of her words over the last few days. The 4 or so that are left don’t sound the same. It results in a lot more frustration for her. And crying. Because she can't communicate her wants or needs. It is hard to witness.

The tumors aren’t in the language area, so this could be a sign of her CSF drain failing. Or tumor spread. Just when you think you’re in somewhat solid ground… I have a meeting next week with Oncology. STILL waiting on dates for her next MRI and series of various tests that are supposed to be happening around mid May.

04/13/2026

❤️

04/12/2026

She’s a little excited about her birthday. Or just the balloons maybe. 😂

04/12/2026

Holy cow, I’m 2 today!!! ❤️ ❤️ ❤️

04/11/2026

4 months. Today it has been 4 months since Eliana awoke like she had had a stroke. Later that day they found her tumor and severe hydrocephalus. Within an hour of that, we were airlifted to BCCH where the Neurosurgeon told me that it was consuming her brainstem and also in her Cerebellum, and was inoperable.

The first 2 months were a blur of hospital stays, brain surgery, illnesses that put her in critical condition in the ICU, SO many blood tests and IV's. And SOOOO much crying. And fear. For 2 months there was no hope, and it looked like she may not make her 2nd birthday that was 4 months later. Then we got a shot at a miracle; One treatment that was newly approved and works on nearly half of the children who take it. I have been holding my breath since she started that treatment Feb 8th, and will hold it until her next scans in May. Holding out hope that she is one of the 'lucky' ones; That it will work at slowing or stopping the growth of the tumors. I know there is nothing that will ever get rid of her tumors. I know how this will end. Still, I hope for time. Time for my girl to have a childhood, to have fun, to experience life. To show me more of what an amazing bright light she is to everyone around her.

I am thankful that she is still here. 4 months ago I did not believe that she would be. She is such a gift. Please pray for more time for my baby girl. She is everything, and she deserves SO much more time on this earth. WE deserve more time with her.

04/08/2026

I, and 4 of my kids (Eliana included) are 'running' in this event on her 2nd birthday next weekend to raise money for this incredible organization that helps kids like Eliana get the treatment they need when its hundreds of miles away. I'm posting this again in the hopes that someone wants to contribute or share in celebration of Eliana reaching a birthday I didn't think she would ever see just a couple of months ago.
FYI when you donate through the link, it goes straight to Hope Air

Run for Rural Medicine 2026

04/06/2026

Could this be the miracle I’ve been hoping and praying so hard for? I can’t know until her next scans, but I sure hope this is it. I’m so happy for her. Walking is freedom and independence. Things I thought she’d never have. ❤️