It has been very hard for me to put things down in writing on what is going on.
Usually I have no problem with writing out my thoughts but it’s hard to put into written words what your child and family are going through.
As my work has slowed down for the summer I am going to try and write more.
Simon finished his 5th round of chemo the day before Memorial Day.
And we moved the next day into my parents.
We took him home still accessed so we could do IV fluids at night to stave off the dehydration he had from the last time he had this same chemo- very nauseous times.
He had a blood/platelet transfusion a week later as his counts had dropped quite low.
Then he had another transfusion June 9th.
After that transfusion we have a new kiddo.
He has been trying to show us he can run (which he never has before so we’re still working on him having the muscle tone and ability to run fast. Right now it’s just a cute fast walk of lots of arms and legs moving).
His energy is so high, he’s sleeping great, and as always we’re trying to fatten him up.
But we don’t have to do anymore shots of neupogen (to increase his white blood cell count) or labs until July- yes!
And we have a surgery date. June 28th.
Caleb and I both are anxious (as in anxiety-ridden), scared, and trying to keep ourselves busy and not think about it too much.
It is interesting that he’ll have almost an identical scar to his dad’s where we always just knew he wouldn’t- being the healthy child without a genetic disorder and all that.
Kinda ironic and not so cool.
But we hope to make the best of the next couple weeks- swimming, getting some good pictures of my baby without a scar, playing, going to our family ranch and getting dirty.
Life is always taking some new/unique twists and turns for us.
I wish I could say I was bored- cause boring is safe.