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Shay’s Story

Shay is a happy little girl but for some odd reason, she has had a difficult time talking and has been delayed in her milestones since birth, but for the most she is very outgoing.  Shay always says hi with a smile and waves and will walk up to you to just give you a hug!  Sadly May 28th, 2021 she woke up with having tremors in her right hand.  They would come and go.  By 1:15 pm she had had 4 of them and we were able to get a video, I sent it to Shay’s primary care doctor who told me to go to the ER here in Grand Junction, Colorado. After showing the doctor the video, the ER team decided it was best to either go to Denver or Salt Lake and be seen at a Children’s hospital.  Shay and I ended up flying with triage to Salt Lake due to the I-70 road closure to Denver.  That night they did an EEG and after having 5 more tremors, they diagnosed Shay having focal seizures in her right hand.  The next morning, she was scheduled for an MRI and it showed she had a golf ball size tumor on the left side of her brain.  After talking to the doctor they scheduled Shay for her first brain surgery on June 9th.  While the doctor was in surgery, he noticed a piece that looked like healthy tissue farther down into her brain and left it.  After her surgery, she was scheduled for another MRI and sadly it came back that the piece that was left was not healthy tissue. The doctor shipped the golf ball size tumor off to a team in San Francisco who diagnosed it as an Infantile High-Grade Glioma Tumor.   June 24, 2021 Shay was back in for another brain surgery where they took out the piece that was farther into her brain.  She was in the hospital for 2 weeks where she spent her 3rd birthday.  She was scheduled for a port and mapping and started radiation at Huntsman on July 19th where she had 30 sessions of radiation 5 days a week. While she was doing radiation, she was set up for oral chemo 7 days a week and finished that on September 1st and was also able to finish her radiation treatments.  When Shay was set up for radiation, our family was blessed to stay at the Ronald McDonald House for 6 1/2 weeks and it truly was a blessing. They treated us like family and Shay always gave hugs to everyone!

We are waiting to go back the first part of October for an MRI and start her next dose of chemo which will be set at home.  Right now they are working on having her be on it for 6 to 12 months.  She’s also set up with a home health nurse who will check on her once a week while on chemo.

Sadly the tumor that was found in Shay is not found in kids Shay’s age, it’s more found in teens and young adults and their life expectancy is a year.  With not knowing anything about this tumor in a child Shay’s age, there have been lots of fingers crossed and prayers that Shay can come through this.  We are hopeful and will keep fighting.

Shay started preschool last Monday.  We are hoping it will help her to start talking.

We can’t say enough about how wonderful everyone was to us at the Ronald McDonald House.  The facility was beautiful and the staff was wonderful, always going out of their way to help with anything we needed.

 

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