Jhayliegh was diagnosed with Acute Lymphoblastic Leukemia PH+ at 5 years old. She has passed away.
What’s one thing you wish you had known in those first 48 hours?
“One thing I wish I had known in those first 48 hours is that it’s okay to say no and be given a little time to process. You know your life has just been flipped upside down and you are asked to make big decisions within seconds not knowing how that one decision can impact everything.”
What helped you the most in those first 48 hours?
“What helped me most during the first 48 hours was having my wife and family there. But the biggest part was how I just got to be Jhayliegh’s dad and even though I felt broken inside she had this radiant joy and fearlessness that helped give me strength.”
What is one moment in those first 48 hours that you’ll never forget?
“A moment from the first 48 hours I’ll never forget is being at our small town hospital and them telling us her blood counts were off and she needed to be taken 4 hours away. We asked questions and the doctor put a brave face on for us and just said she needed a bigger hospital but his eyes said it all. We drove 4 hours with that gut feeling that we knew and when we got the confirmation our world shattered in seconds and we were just numb. ”
If you could go back, what’s one thing you’d tell yourself?
“It’s okay to do your own research and question the doctors. Sometimes they don’t have all the right answers and what works for one child may not work for yours. Everyone has the same goal but you are your child’s best advocate!”
This First 48 story was submitted by Daniel.
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