Eliana's Story - The Fight To Save Her

06/18/2026

6 months. Its been 6 months since that awful day/night...'Your daughter has a large mass deep in the base and back of her brain'.... PTSD is a very real thing after that....

BUT, I continue to make the best of each day, as much as I can. Sometimes that is kicking yourself to do things, sometimes it is easier. Sometimes, its just taking a few minutes to cry in your closet before trying again.

We have been given such a gift with having more time with Eliana; Time that was definitely not promised in the beginning. The fact that she is still here 6 months later is a true miracle. Things are up and down regularly, as her body flip-flops between fighting the tumor and fighting off other things (which makes the tumor symptoms come out), so there are good and bad days and the roller coaster continues.

The other day I took her 'swimming'. She was definitely hesitant, but after some gentle pushing, she ended up being SO proud of herself for jumping in (from sitting) from the edge of the pool to me, and kicking her legs to swim while I moved her around in the water. I'm determined to give her the best childhood she can have, in spite of the limitations she has and the constraints I have. I want her to experience/see all that she can, because I don't know how long her childhood will be. I don't always hit the mark, but I try. And will keep trying.

Today, Eliana and I went downtown where she got to see geese and goslings, ducks, lots of boats at the marina, a parasailer, and Ogopogo. She got to play a piano in the park, and play at the water park. She had really bad balance today, so she couldn't walk around on her own, but still had a lot of fun. It was a great morning....until she lost her beloved little Jesse figurine (Toy Story), and SOBBED all the way home. At least it was a good morning??

06/10/2026

Eliana may not be eligible for a Wish trip but Make A Wish is a great organization and a worthy cause for kids like Eliana, if you're so inclined. https://bigwishsweepstakes.ca/?utm_campaign=sweepstakes_fy26&utm_source=meta&utm_medium=paid&utm_content=%7B%7Badset.name%7D%7D&fbclid=IwY2xjawSVn51leHRuA2FlbQIxMQBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeWZf2QDrvhuOX45lonJ18zAq6oNc84Oq99Ka8PiI4ktZkY5sAw_nymTfRooA_aem_9yI8-sc3vYsxgM8zQfVZUA

06/09/2026

Exploring ❤️ The head-tilt and reduced balance continue, but she's doing well. Oncology thinks she is likely fighting something as, historically we have only see Eliana's tumor symptoms when she has or is fighting a virus or something like that. It takes away from her body's ability to fight the tumor. Hopefully soon the symptoms will be gone again.

06/04/2026

The tumors are definitely still there, and they remind me of that regularly.

06/03/2026

A couple of months ago Eliana had broad genetic testing done, both here in Canada, and in the US. I got the results today, and it explains some things, but not others. She has an hereditary genetic condition due to a proximal 2Q13 microdeletion, which carries a wide spectrum of possible expressions and severities (from very little to severe). Thankfully, thus far, she seems to have none/mild expressions of this, but they do not know if it has any connection to her unicorn tumors. They are writing her up in a medical journal so that her experience can contribute to learning more about her genetic condition and, perhaps, her tumors. The information will also be helpful for me and the various disciplines that work with Eliana, in effectively supporting her as she grows and ages. This knowledge can prevent serious problems from developing, and/lor mitigate problems if/as they present.

As I am not a carrier, her father has been asked to get tested so that other family can be informed. It is possible, with testing, to prevent passing this genetic condition on to future generations. Without testing, there is a 50% chance of carriers passing the condition on to offspring.

06/02/2026

Eliana continues to do fairly well. Words are elusive some days, as is balance, but she is powering through.

I want to clarify something. While my goal is to rid her completely of this monster in her brain, and I am SO thankful that her tumors shrank over the first 3 months of treatment....I am fully aware that these tumors are 100% unicorns - no record of anything like them anywhere in the world. And that the particular qualities (genetic and otherwise) of these tumors tell the Oncologist that it cannot be beat, that it is ALWAYS terminal.

So while I am SO thankful for the win that we had with the tumors shrinking, and Eliana doing well and walking-ish, I remain stuck in knowing that I will lose her in the end. All I can hope for is that we can stretch it out so that she has TIME. Time to spend with her family, time for a childhood, time to experience the good things in life. Time. It is truly the most precious thing there is.

05/28/2026

05/26/2026

Wherever this girl is, her partner in crime is never far behind 😂 In hindsight, this dog was telling me for nearly 2 months before Eliana's diagnosis that something was 'up'. Now I watch her a little more closely...She seems to know better than I do when something is going on.

05/26/2026

Eliana continues to do so well and is progressing both in walking and with her words. Her head has hurt a couple of times, but nothing major thankfully. She had a bad cold last week (which she shared with me lol) but got over it quickly. These drugs compromise her immune system, so any time she gets sick I get scared. I've learned that the fear doesn't go away just because the tumor shrank and the treatment is working for her.

She's walking everywhere, rather than crawling, and is SO proud of herself! And she's proud of her words too. It makes my heart swell to see that. I am so thankful for where we are now compared to a few months ago ❤️

Her weight gain continues to be a big problem, and we've been referred to 2 endocrinologists now but haven't heard anything from either (the first referral was at the beginning of Feb, so its frustrating). Nothing I can do but wait unfortunately.

05/14/2026

This week I went to BCCH for Eliana's quarterly tests. I expected to hear that her tumor had grown significantly, that the treatment wasn't working, and that there was nothing more they could do. It was SO hard to drive down there and have all the tests, then WAIT for the results appointment. I
Instead I heard that the tumors have shrunk significantly, the hydrocephalus has improved significantly, and the dangerous cysts in her brain stem tumor are gone! Eliana is getting her miracle!!! This treatment had a 49% chance of slowing or stopping the growth of the tumors. In a small percentage of patients for whom the treatment is effective, it can shrink the tumors a little. Eliana's haven't gotten just a 'little' smaller, they are SIGNIFICANTLY smaller!!

I was cautioned before these appointments that they don't usually see any impact at the 3 month scans (that's what these were) - if there is going to be an effect, they see it at the 6 and/or 9 month scans. So this is even more amazing! I will keep being crazy-diligent with her meds schedule and the fasting requirements for that, as well as the daily routine of special skin care that I do (bleach baths, lots of lotion and lots of sunscreen), and hope that there is even more of an effect on the tumors at the 6 month scans. This is all WORKING! I would do anything to help my baby girl live. Its amazing to know that what I am doing is helping. She has a shot at a childhood now, thank God.

The treatment, when it works, only works for an average of about 2 years before the tumors become resistant. I look at that as a challenge - I need to get those tumors GONE within 2 years. For the first time in 5 months, I believe its possible. For her cancer to be gone, for her to live a full childhood, for her to grow up. That's gold. That's hope. And hope is everything.