Beautiful Saturday's

There is something almost intoxicating about a crystal clear, true blue sky, a gentle breeze and temps in the low seventies to start out a perfect day. Loving to garden and finding so much pleasure in weeding here and there and deadheading a few bushes, I love mornings where the sky is so blue and the grass is so green. It is no surprise these are my two favorite colors. When I get upset and anxious there are two things I know that I can do to calm myself - cook or go to the garden.

August 2, 2008 was one of those terrific Saturdays. Julie had been home five days from GWUH. The normal routine for the family was underway. Julie was making fresh blueberry pancakes from scratch. Alison announced that it was great to have Julie home again. All was right with the world. Chuck and I were still tired from twenty-five days at the hospital. I was languishing comfortably in my bed happy that my family was home and everyone was doing all right. Julie would have two more rounds in the hospital getting chemo but all of that was doable. She was home now and looking good. There were still little reminders of what we were facing - Julie wearing a bandanna to cover a bald head and little notes with reminders that she take her ATRA (the drug that would save her). We had missed a dose on Thursday and I was adamant she not do this again. Little yellow notes were placed on doors, cabinets, mirrors and walls. Missing the ATRA was not going to happen again!

Alison was preparing to paint Turner's room. We had bought the paint the night before and his room was stacked and piles of Turner were in little corners of the first floor. Julie had decided that she felt up to painting. Children are definitely combinations of various genes. I can't fathom loving to don work clothes and do repetitive motions with a brush. Both daughters love to paint thanks to Grandaddy. Chuck was going to catch up on three weeks of work and I was going to do laundry and put my house, garden and life back together.

I always remember being told to have a plan. When writing do an outline, in college pick a major and map out your courses, start a business make a business plan. Life is all about plans or is it? Having a plan can be grounding, but you can't stop there. Life rarely goes as planned. Success goes to those who have the ability to be flexible. When life eats your plan up and spits it out one has to be able to come up with a new one "tout suite".


This Saturday was one of those days when what occurred was the farthest thing from any ones mind. Julie lost the paint brush in her left hand unbeknowst to her. Julie's skill was baseboard work. Julie's steady hand like her fathers could paint a straight line with such accuracy. Now there was paint on Julie and the floor and Alison looked down from her ladder at Julie just sitting on the floor with brush out of hand and paint where it shouldn't be. Alison asked Julie did she know that the brush was on the floor knowing that her answer was, of course. Instead Julie slurred her speech and sounded confused. A call to DAD to come in was made by AL. Chuck found a tired Julie and said go see your mother. Julie came into my room and was apologizing saying she just had done too much she guessed. She sat down on the ottoman head in hand. I took one look and my heart sank. I told Julie to smile. The left side of her face did not respond. I asked her to lift her arms above her head. The left arm struggled to get to shoulder height. I asked her her name. She gave it to me. I knew we had to call her doctors. She was having a stroke. The odd thing was it was episodic. In between episodes she would return to being Julie but would be tired and weepy. OH GOD!


Internist and oncologist agreed that it was best to get her to the ER at GW stat. Julie's symptoms had been going on thirty minutes maybe a little more. We had a window of three hours (I did not know for what reason until hours later). For the second time in less than a month Chuck and I were leaving Alison and Turner and taking our Bird to the hospital. Julie was adamant nothing was wrong. I sat back with Julie in the second seat in the car. She was going through these episodes and was losing the ability to hold her water bottle in her left hand. The important 3:00 dose of ATRA was coming up. I was prepared and not going to miss this dose. Little did I know I was giving her the drug that was causing these symptoms!!!! I was giving Julie the drug that turned her chromosomes back to normal and gave her the massive ischemic right hemisphere stroke.

Life is full of paradoxes - ATRA - all trans retinoic acid, a vitamin A derivative or arsenic trioxide, a known mineral substance and known poison. Which would you choose to give your child?