Ellie's Fight: A Tiny Warrior's Incredible Journey

I’d love to take a moment to introduce my daughter to the world. This 4 year old girl is the embodiment of enthusiasm and positivity. She is fierce, strong, competitive, and has a higher level of empathy for humans than most 4 year old's. When she’s not playing with Play-Doh, Hot Wheels, or channeling her creativity into art, she is playing Minecraft, Rocket League, and Roblox.

To go through what she has gone through in the last few weeks and STILL maintain every essence of her being is so inspiring. The perspective I have gained from this experience alone is something that will last me a lifetime.

On August 6th, Ellie had a follow-up with her pediatrician regarding some issues with constipation. About two hours before the appointment, I knew something more was going on. My bubbly and enthusiastic ray of sunshine was dimmer than I had ever seen. She was tired, her abdomen was distended, she had stopped eating completely, and even though I was finally getting some bowel movements from her, the pain she was experiencing in her back, legs, and stomach was getting worse. I was so sure something else was going on, that day before I left, I told her two older brothers that her appointment might be longer than normal in case I needed to go somewhere for additional testing.

Little did I know that the additional testing would be an 11 day stay in the hospital with words I would never think would ever be associated with my daughter.

When we saw the pediatrician, Ellie had happened to spike a fever on the drive there. I was prepared to fiercely advocate for my daughter with her pediatrician and beg for more to be done than an assumption of constipation. Luckily, my pediatrician required zero convincing from me. As I was telling her everything, failing to hold back any tears as I went through the two prior emergency room visits and her symptoms, she knew something more was going on. She advised that she would be calling Phoenix Children’s Hospital and they would be there waiting for us. She did an incredible job of taking EVERYTHING off my plate so that I could get Ellie to Phoenix Children's Hospital as quickly and as safely as possible.

I called her dad and he agreed to meet me there asap. The drive to the hospital was only about 30 minutes, but it felt like hours. With Ellie crying in pain in the backseat in the middle of Phoenix rush hour traffic, all I could think about was what causing her so much pain? In my mind, I had assumed she had an obstruction and was mentally preparing myself for a surgery to relieve her of that pain. That had to be what it was, right?

PCH took us in immediately and ran some tests. It started with an x-ray that progressed to a CT. Her vitals were less than ideal. Her blood pressure was high, her heart rate was high, and her pain was frequent. After a couple hours of tests (xray, CT, ultrasound), the doctor came in, pulled up a chair, and wanted to talk about the test results.

I KNEW in that moment something more was going on. It was the way the doctor rolled up to me and folded her hands together. I could feel that she was going to deliver news that I was not expecting. Her dad had just stepped out to grab food and everything zeroed in on the doctor and I in that moment.

You know, in movies, when someone receives a medical diagnoses of such a high caliber, the world around them disappears and the words of the medical professional begin to drown out? It happens just. Like. That. When the doctor mentioned having found a “mass on Ellie’s right kidney,” the rest of her words didn’t come to me until moments after she was done talking. Even in this moment, I had no idea what she was in for. I just sat there, nodded, and cried. I processed what she was telling me while Ellie slept soundly on the hospital bed beside me. I asked what questions I could, but ultimately, we had to wait for the “Hemonc” doctor to come in and talk to her dad and I. I had never heard the term “hemonc” before, so when she left, I did what any worried parent would do and googled it.

Hematology & Oncology. It’s a combination of those two words. I know enough about the medical world that we were either dealing with a blood disease or cancer.

An hour or so later, the Hemonc doctor came in to talk about what the mass could be. It wasn’t until I saw the CT scan that I realized how bad this was. The mass was…indescribable in size. It completely consumed the right side of her body and suddenly every symptom she had experienced made so much sense.

The doctor indicated that it was a suspected Wilm’s Tumor, but we wouldn’t know without a biopsy. Ellie was admitted that night with intent to surgically remove the mass, which later was explained that due to what they had seen, her kidney would be removed along with it.

I’ll spare you the details of the hospital stay and fast forward to August 9th, the date of her surgery. The estimated time for her surgery was 3.5 hours. It took 8. 8 hours to surgically detach the monster inside of her from the areas it had latched onto. Areas that the mass was hungry to consume in effort to grow and stay alive. I am sharing the post that I made on social media that explains what happened during that surgery, because revisiting that right now would be a struggle.

“Hey everyone,

Ellie is officially out of surgery and she’s recovering in the ICU. Just waiting for her to wake up.

I wish I had better news for everyone, because I also wanted better news.

The good news is that the mass was fully removed. That uninvited guest is no longer wreaking havoc on her body.

The bad news is, the CT was not able to portray how big it really was and how far it was reaching.

It adhered to her vena cava (blood vessel that supplies blood to the heart) and as a result, to remove it, they had to cut into and repair a small spot on the vena cava. The mass had actually began to creep up through the blood vessel and towards her heart. We caught it before it could have done some serious damage. The doc said it could have been a matter of weeks before this would have been an entirely different conversation. With the way it was attached, It also caused the mass to rupture, meaning they were not able to keep it intact. She will have to undergo chemo and radiation. I don’t know what that looks like yet until we get pathology results back.

The mass also attached to her diaphragm. A small section was removed, creating a hole in her diaphragm, but that was repaired and shouldn’t see and permanent damage.

The mass attached itself to a muscle in her back, near her spine. A few muscle fibers had to be severed to remove the mass.

A few lymph nodes are being biopsied to make sure they are not affected, and if so, we will take care of it with chemo and radiation.

Because she was under for a little over 8 hours, a blood transfusion was necessary.

Her whole right kidney was removed.

Her adrenal glands are both intact

She’s alive

She’s a fighter

This will probably be my last update for awhile, but I wanted to make sure to let everyone know where we ended up. We’ve got a long road ahead, but WHEN chemo and radiation are successful, the likelihood of this coming back is sooooooo small.”

So, here we are today, August 20th, 2024. I drove Ellie to the pathologist and her dad met us there to hear the final results of what the tumor was and what it means for Ellie’s future.

Ellie’s body played host to a Stage 3 Wilm’s Tumor. It metastasized into one lymph node. The tumor itself was just shy of 3lbs and almost 6 inches x 4 inches. She will be undergoing chemo and radiation for the next 6 months with a prognosis I believe we are lucky to have, as others are not so lucky. There is an 86% chance of no recurrence and 94% chance of survival after treatment. While her prognosis is great, she’s got a tough 6 months ahead of her. Another test was ran that we don’t have results on yet. They are testing two of her chromosomes and looking for a specific piece that is “missing” in the chromosome. If it is missing, they will need to bump up her treatment to be more aggressive, as the chance of recurrence is greater. If not, it will simply be these 6 months of chemo and radiation.

If you made it this far into her story, thank you for taking the time. If you looked at Ellie today, you wouldn’t know that she was sick. She smiles, she jokes, and she is an everyday reminder to appreciate what you have and not to take everything for granted. The next 6 months will be tough, but if ANYONE can fight this, it’s her. My baby WILL be ringing that bell when she finishes her final round of chemo and as one of my friends put, she will outlive us all. And I truly believe that.