Things are moving right along. Summer is in full swing at Evan the Warrior Camp and it is a pleasure to report that Evan is enjoying himself. He has had two Clinics since my last post and his counts are holding steady. He is ingesting 100% of therapeutic levels of chemo. His last clinic visit was a long one with an LP and intrathecal (in the spine) chemo, under anesthesia, which comes with its own set of risks. His spinal fluid was clean and clear of leukemia cells and we are always grateful for that report.
Evan remarked the other day,that this is really his first summer, since diagnosis, that he has been able to play and enjoy the outdoors. In 2007, his chemo was just too intense to enjoy summer, having just been diagnosed in May. The following year, he had avascular necrosis and was unable to walk or run any distance, due to the steroids. He also suffered from an intense reaction to the chemo when mixed with mere moments in the sun, causing a rash that prohibited outdoor play. The fact that we added summer school lessons to the mix that year didn’t bode well for his summer memories either.
This summer Evan is stronger and can run with less marked pain and his skin is suffering fewer effects when out in the sun. The body constantly absorbs chemo at different rates and levels, so we have learned to expect anything. Fortunately for Evan, he is landing on the brighter side of the equation. He still requires 24/7 supervision as he slips into hypoglycemic episodes in mere seconds. I am thankful that for the most part he can alert me to the symptoms and we can avert near comatose states, but episodes like that always set me forward an age or two, as it is awful to see your son slipping away from you second by second.
We have moved. One day last year, as I contemplated the move, I asked the boys for their input into where we might land at the conclusion of our lease across town. Ryan asked to return to his old stomping grounds and Evan asked for a house on a hill, with a pool, and a trampoline, near his school and all of his friends. These were all things he gave up at diagnosis, to his mind.
He didn’t ask for the ten days this month without AC, during the hottest parts of July…but we added them in for good measure. Builds character. He didn’t ask for friends to come and play almost every day, in the pool and out of it, but he got that anyway. Builds character. Our old house was a perfect place to heal and surrounded us with all measure of closeness and good memories, but it was time to move and to give Evan a chance to get out a bit from the confines of the condo behind gates.
We are slowly easing him back into circulation. He would however appreciate a report on G Force, as 3 D movies in shared glasses in gooey chairs in closed up confined kidlet areas is sorta asking for trouble in our world…so if anyone wants to do a thumbs up/down evaluation of the movie for Evan, feel free to leave him a message. We will be waiting for the Blockbuster release, much to his dismay.
Call me crazy, but I can’t help but feel my sights as set on the end of treatment next September. We all know how fast a year flies, and while I am enjoying every precious minute with the boys, I confess that the thought of life after cancer is sneaking into the forefront of my hopes and plans and dreams. This life changing process over the last 27 months has been monumental and I am, to coin a phrase, seriously hoping for some ‘easy’ if at all possible (thanks Melissa).
Please continue to keep Evan in your thoughts and prayers and all the little ones who fight on and those parents missing their babies. Just as soon as one of us parents inhale around here, our exhale brings serious and sometimes devastating news and setbacks to one of our “own”. Not a moment goes by that I am not ever cognizant of the intense struggle and battle waged by our children and all the angels looking down from the rainbow, cloud filled skies and I continue to stand in awe of their amazing strength and fortitude and example.
Until next time, enjoy your lazy, hazy and every droplet of those close to you. One extra dip never hurt anyone.
Be well.
Kimberly and Evan
Evan at CHLA reading his labs
Evan after his LP
Evan’s Bounty
Evan’s new yard
Evan’s Old AC Unit
Evan’s Sunset
