Hmmm…

Some comments have indicated they don’t want this blog to be about me. And the people who comment seem angry. That’s ok. Everyone has a different experience with this disease with a different child. I certainly do not mean to offend. This is meant to tell about what happened here. It is meant to remind me … [Read more…]

Literature

If you find yourself in the wrong story, leave. Or give the book to somebody else. I didn’t make that up. I read it somewhere, in someone else’s story. I just woke up with that cantering through my (now sufficiently medicated!) sleep-deprived brain. I’ve always been able to eventually leave the wrong plotline. Sometimes it … [Read more…]

Coming In Sideways

It’s definitely been an uphill climb. More like a side-step on skis up a double black when you’ve lost a pole. Sideways and over and down a little and a long stretch. You finally reach the stray pole, then it slides again so you also slide back down a little. By then you are exhausted and you … [Read more…]

Carleytrent

Sometimes. I get triggered by the sight or the sound of his name and I want to climb, or take a helicopter, whichever is easier, to the top of this building (probably a helicopter) and scream, “THAT’S NOT HIS NAME!”. It all started with the absence of Trent during my pregnancy. We made a deal … [Read more…]

B-Day

BMT Day. “Birthday”. Allogeneic Stem Cell Transplant Day. The Day we have been waiting for months for.  The day I built up in my mind as terrifying and it’s actually pretty exciting. When I say the procedure occurs today, I should explain that it actually occurs tomorrow, “either between 12 midnight tonight and 2am tomorrow or between … [Read more…]

This Is Crazy

My head is going to implode. I wonder what that actually looks like? Probably better that an EXplosion of a head, yes? All your insanity is stuck inside and no one has to clean it up. They just burn you and scatter you. Wow, Erin. That was morbid. Even For you. I am waiting. Still … [Read more…]

Good Morning, Ashton! ( I Hate You, Mom)

Some types of chemo have a distinct affect on behavior. Today has proven that this round is REAL. Without revealing too much, he has been on medications to help him cope psychologically for weeks now. Both have been very effective. We are in a new world now with these new chemotherapies. It started 12.5 hours … [Read more…]

Busulfan

It’s a dirty word which may save my son’s life. Today is day three of the use of this drug and he was jumping around like a kangaroo all day yesterday until wham! Barfarama. Since Ashton has proven three times to be unresponsive to varying types of chemo, we know BMT is the only way … [Read more…]

The Long Stretch

Ashton has been in isolation due to fever for a few days now. However, as of today, he will be in isolation until the end. We are moving to the Bone Marrow Transplant area of the hospital today. It is paramount that he remains well. He received IVIG night before last and it did not … [Read more…]

Bright, Sunshiney Day

I’m going to take a cue from my friend, Lauri, and write from a visual cue. It isn’t a very exciting visual. It’s a brick wall. It’s the view from our hospital room Within the wall are four windows. I try not to look. They probably try not to look either. Hell, maybe they live … [Read more…]