Shelby Fay Smith | CaringBridge

Shelby Fay Smith

First post: Jan 11, 2018 Latest post: Jan 13, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Thanksgiving Day, 2017, Shelby was a normal, active six year old girl playing with her brother, cousins, and other children.  Friday, she complained with being dizzy; Saturday, she was stumbling; Sunday she fell off the couch while sitting and putting on her shoes.  We thought she might have another inner ear infection (but no fever was present).  We decided to take her to the weekend clinic at Arkansas Children's Hospital (ACH).  They first suspected meningitis, but ruled that out and sent us to the emergency room (ER) for an MRI.  During the night/morning, the MRI was done and the news of a tumor in the brainstem was announced.  From the ER, Shelby was admitted to ACH Monday morning and was scheduled for a brain biopsy on Tuesday, November 28, 2017.  We were informed of the possibility of clinical trials if the tumor was malignant and had specific genetic makeup.  This would mean they would need to test the biopsy first and then get more tissue during the same procedure.  We agreed to have the testing done to see if she would qualify.  Her brain surgery for the biopsy took about three hours.  Shelby was diagnosed with glioblastoma, DIPG.  You may read more about DIPG at http://www.danafarberbostonchildrens.org/conditions/brain-tumor/diffuse-pontine-glioma.aspx.  This is a stage four malignancy, inoperable (because of its location), and very aggressive.  Historically, the FDA approved chemotherapies do not have an affect on this type of cancer.  She is currently in radiation therapy and is improving, but the statistics are against her.  First and foremost, we ask everyone to please pray for a miracle for Shelby.




 Many people have inquired about helping, and the palliative care team encouraged us to allow others to help.  They suggested this option, and that is why we are here today.  Both parents are public school teachers with a limited number of sick days available to each of them.  We are playing tag team and depending on other family members and friends to take Shelby to her appointments.  After sick days are exhausted, we will have to take leave without pay.  The FMLA was approved, but that will protect our jobs (not pay us) for 26 weeks. 




We are humbled by the outpouring of love and support we have received.  Thank you for your prayers, care, concern, and support.  May God richly bless you and your family! 




Sincerely,

Shelby and family



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