Now What

30. May 2016 Uncategorized 0
Thursday March 24, 2016 is a date that I’ll never forget.  It was the day that we were told Grayson had “a mass.”  Due to Grayson’s Opsoclonus-Myoclonus-Ataxia, the doctors were pretty sure the the mass was Neuroblastoma.  Approximately 50% of kids with OMAS have Neuroblastoma and approximately 3% of kids with Neuroblastoma have OMAS. Grayson was scheduled for another ...

The Ripple Effect

18. April 2016 Uncategorized 0
According to Webster’s dictionary, the “Ripple Effect” is defined as: “a situation in which one event causes a series of other events to happen.”  When one of your children is diagnosed with a serious illness, or two, it doesn’t only effect that child or you as the parent; the effect is felt throughout your entire ...

We Found a Mass

14. April 2016 Uncategorized 3
We arrived back at hotel UIHC late Wednesday evening.  We went thru the horrible ordeal of placing an IV in Grayson and after numerous tries it was in.  Our oncologist scheduled us for a CT scan on Thursday morning, which meant Grayson was NPO; again. Ugh.  At least this time his test was scheduled for mid-morning; ...

Control

06. April 2016 Uncategorized 17
To say that I’m a bit of a control freak is an understatement.  Maybe it’s because I’m the first born and was an only child for seven years.  Or maybe, its because I’ve learned that if I want something done, and done right, it’s easiest for me to do it.  At work, I have a ...

Inpatient

05. April 2016 Uncategorized 2
We arrived at our hospital room at around 9:30pm.  We were all exhausted, Grayson especially, it was way past his bedtime. Our night wasn’t over, yet.  Grayson needed an IV placed, which ended up being an absolute nightmare.  Our nurse tried three different places, no luck.  A more seasoned nurse, who always has success couldn’t ...

“We need to go the ER.”

05. April 2016 Uncategorized 0
We arrived home from our “spring break from hell” (as Mike calls it) really late Friday night.  Saturday & Sunday were spent being lazy around the house; catching up on sleep, laundry and the usual weekend to do list.  Grayson was still his fussy self and there weren’t improvements on his symptoms.  We tried to ...

Spring Break

01. April 2016 Uncategorized 0
We packed up the kids (and most of the stuff in our house – kids need a lot of stuff) and headed up to the Mall of America for a few days while Landon & Lillian were on spring break.  We arrived after a long six hour drive (which should’ve taken only four hours) and ...

What Was That?

31. March 2016 Uncategorized 24
It was a normal Friday night, in early March, and our family was going thru their normal nightly routine.  It was dinner time and I was on Grayson duty, making sure his high chair tray stayed fully stocked of bite sized pieces of food (he loves food and shovels whatever we put in front of him ...