Kiley’s Story

Site created on June 13, 2020

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.

Newest Update

Journal entry by Staci Daniels

"A picture is worth a thousand words." This phrase makes more sense to me today. Kiley had an MRI at 8am.  By the time she was done it was 9:30ish and we had a 10am appointment with her neuro-onchologist to go over the results.  



I'll start with the gut punch- Kiley is no longer a candidate for the trial she was on.  Since there was a "change" since her last MRI on July 3 (measurements were 50% or more of a "change"), then she no longer qualifies for the trial.



Follow me for a second.  Radiation can leave what experts call "radiation effects" which leaves the brain matter on MRI imaging to look rather hazy.  Kiley's radiation effect was rather large and although the doctor suspects that the hazy imaging is "radiation effects" it's something that we just have to watch and monitor in future MRI scans to confirm.  It's a bit frustrating that they were quick to eliminate her from the trial and measure what could be radiation effects and count that against her as "change." Her next MRI is in 6 weeks. Our prayer is that her next MRI looks much better as the "radiation effect" subsides.



Furthermore, it looks as if there was residual tumor as part of her initial surgical resection.  It was deep and the surgeon needed to be careful near important motor functioning areas.  Today's MRI shows what they believe to be deadening of tissue on the residual tumor.  (Remember when we had to "pray for a donut" during one of Mike's MRI's? Kiley's doesn't look like a donut yet.) 



Truthfully, we are frustrated and a bit numb.  We wanted there to be nothing! Rather, there's hazy brain matter and a tumor looking thing in the surgical field.  I'm not questioning the surgeon...I think he did a great job with Kiley's care.  I just hate cancer.  



So moving forward, Kiley will begin Temozolimide (Temodar), a chemo med, on Monday. She will be on a 5 day cycle with the rest of the month off.  Then the dosing starts all over the next month.  There are no trials that she qualifies for at CMH unless she has "recurring glioblastoma multiforme" which she doesn't because there are no tumors in other spots in her brain.  We may consider looking into other treatment options (trials) in other places, but Kiley really would like to remain local. We have such a great local support of family and friends that make this journey a bit easier as they walk it with us.



--"The Lord is my strength and my shield; in Him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to Him." Psalm 28:7

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