‘That’s not normal.’ I took her to the ER. ‘Mommy, I want my fingers and toes to get all wrinkley.’: Mom thankful for those who helped ‘walking miracle’ daughter beat cancer

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“Ryder had a little bug the first week of February, and I took her to the ER on March 9, because she was sleeping 10-12 hours a night, because she was really lethargic, and because  of her vomiting. They diagnosed her with a bacterial virus (she was swabbed and was negative for flu/strep/mono). She was feeling better, but light vomit here and there. Then, on Saturday, March 24, in the afternoon we were at a party, and I noticed her right eye moving inward, but it corrected itself. On Sunday, Gen (my sister) heard Ryder telling her sister KeiLee to slow down, because she was dizzy, and Gen saw her eye moving inward.

I took her to the ER, Monday after school, because that’s not normal.  The NP said she was just tired and recovering from being sick.  I called Laura (a friend who’s a pediatrician with Torrance Memorial), and explained everything. I told her I was taking Ryder to her pediatric ophthalmologist to figure out what was going on with her eye. Her ophthalmologists and pediatrician were in contact and ordered an MRI (she saw pressure behind her eye).

Her pediatrician sent us to Miller’s Children’s Hospital.  They did a CT scan of her head, and they found a tumor in her brain (left posterior fossa).  She got a full MRI from her head to her pelvis because they wanted to make sure there were no lesions in/on her spine.  The MRI showed a large tumor on the back of her left side of the brain (size of a softball).

Ryder had surgery March 29, 2019, and Dr. Javahery successfully did a full resection of the tumor.

The preliminary biopsy showed it was an ‘aggressive tumor,’ and we were told the tests can take up to two weeks before we would find out the diagnosis of Ryder’s tumor from the  pathologist.

Ryder’s slides were sent to Children’s Hospital Los Angeles for a second opinion, and then to St. Jude’s for a third.  Her brain tumor was rare, and the pathologists and oncologists all agreed with a treatment plan for Ryder.

They wanted to see if there was any regrowth from her surgery.  After 6 weeks and 4 days, Ryder had an MRI, and there was regrowth in the cavity of the resection.  So, Ryder was admitted on May 17, 2018 (7 weeks after surgery) to start her first round of chemo.

After 2 rounds, Ryder had another MRI, and it showed her body was accepting the chemo.  99.6% of the regrowth was gone.  There were 2 specks (size of a fine tip pen) left.  So, Ryder did one more round of chemo.

Ryder had to complete 3 rounds of ‘stem cell transplants.’ They harvested her own stem cells, so, she was admitted back into Children’s Hospital Los Angeles on August 20 (16 days), September 17 (21 days), and October 15 (25 days).

Being in the BMT side is hard because you’re confined in your room. Ryder spent her fifth birthday in her hospital room. Her sisters KeiLee and Shey and her brother Levi were able to visit her, and she was able to blow out her candles.

Courtesy of Marissa Tusieseina

Ryder had another MRI, and it showed those specks getting smaller. Her oncologist wanted Ryder to complete 30 rounds of focal radiation.

She started radiation December 5, 2019 and ended January 17. 2019. She woke up every morning (Monday-Friday) at 4 a.m. with her siblings. Then, we dropped her siblings off with a friend by 5 a.m. and headed to Children’s Hospital Los Angeles for her to be sedated by 7 a.m. for her MRI. They did this through Christmas break and never complained.

Ryder had her central line removed March 1, 2019, and that was huge!! The first thing Ryder wanted to do was take a long bubble bath. I asked her why, and her response was,

‘Mommy, I want my fingers and toes to get all wrinkley.’

Ryder’s going to have 3-month MRIs for the next 5 years, then 6-month MRIs for 5 years, and if everything goes well, yearly MRIs for life.

Her last MRI was June 1, 2020, and it showed ‘NPD’ (no progression of disease). Those 2 specks are still there, but her oncologists are watching them. We still don’t know her specific brain cancer, but we know the aggressiveness of her treatment worked.

This journey has been hard on our family, but Ryder has always been our strength. Her sister KeiLee was very emotionally depressed because she had no idea what was going to happen to her sister, and Ryder and I would be gone for weeks at a time. Levi and Shey kept busy with sports and really didn’t understand the magnitude of Ryder’s condition like KeiLee.

During treatment Ryder has gotten sick (fever/vomiting), and when this happened, we’d have to go to the ER and stay in the hospital for 5-7 days at least twice a month. This was on top of her chemo and stem cell treatments.

Ryder loves her sisters and brother. She completed kindergarten, and she loves school. She’s getting back into her routine and can’t wait to start soccer in the fall. She still has physical therapy and occupational therapy because she’s regaining the strength on the left side of her body. She lost significant hearing (high-frequency sounds) and is getting hearing aids for that.

Ryder is alive, and she’s our walking miracle. She’s a brain tumor warrior and survivor. She’ll never ever give up and will persevere throughout this journey.

I’ll always be thankful for all the support and love towards my family.”

Courtesy of Marissa Tusieseina

This story was submitted to Love What Matters by Marissa Tusieseina. You can follow Rissy’s journey on InstagramDo you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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