Yes, Ash? Will you come over here and cover me with hugs and kisses? I thought, perhaps, I had entered the wrong room after fetching ice early this morning. Anyone who has had the privilege of even an hour of this journey with Ashton knows those words have never been uttered. He is more apt to … [Read more…]

GvHD, And The Reality of It

I’m so lost, I don’t even know what I wrote about last so forgive me for any repeats in advance. In exchange, I will try to punctuate. A slew of tests day before yesterday knocked our boy on his ass. He usually comes out of sedation like The Four Horseman from the Apocalypse wrapped up … [Read more…]

Ultra Atypical Endurance Challenge!

From A Hospital Bed. How far can you go mentally, physically and emotionally without breaking down? How long can you go in isolation? Some people love isolation. I love it, but only for a day or two. I would mime a gun to my head by hour 24. I would be talking to my toothbrush. … [Read more…]

A Cautious Happy Dance

I went away, up North to Chicago to hang with Lily and Blaise. I knew the timing wasn’t ideal, but Blaise in particular will be affected by my absence as he grows older. He feels more than he lets on, as many 11 year-old boys do. Lily is better with expressing herself, and for that … [Read more…]

Problem #________________.

NASOGASTRIC TUBE:  A tube that is passed through the nose and down through the nasopharynx and esophagus into the stomach. It is a flexible tube made of rubber or plastic, and it has bidirectional potential. It can be used to remove the contents of the stomach, including air, to decompress the stomach, or to remove … [Read more…]

It Would Have Happened Anyway

When Ashton was first diagnosed I tried to make contact with Bruce, the man Penny made me with. Bruce kinda said, hey, that sucks. Bruce has never met Ashton. He has not seen Lily or Blaise since they were…?7 and 4? They don’t even remember him. Heck, I barely remember him. It was a lot … [Read more…]

A Few Things I’ve Learned About The C Word

1. Almost everything that was paramount before diagnosis barely registers on the relevancy scale. 2. Being a bald child is not weird. It’s proof that you are stronger than most adults. 3. There is very little I, personally, can do for my son. I, personally, cannot cure CANCER. 4. I CAN, however, hold a barf … [Read more…]

The Olden Days

2011 Mischief. I used to have to get him up to take him to work with me(winter in Chicago) at 5 am. He worked a full day until we got home at 7pm. He showed up in pajamas and he went home in pajamas. It’s one of my favorite photos of him. While the kids slept, … [Read more…]


Focusing on the positive. Trying, still, to ascertain which doctors are painting a pretty picture and which ones are just so used to their jobs they don’t mind being straight with you. Dr. Grimley came in yesterday (and I love his name). He was the one who diagnosed Ashton in the ER months ago and … [Read more…]

Proud of My Friends

I feel so uplifted, which, in turn helps me to uplift others, not just Ashton. When He starts to feel better, I can start to find a way to give back. To everyone. To both hospitals. To the people and friends who have stood by us. To those who have contributed. Some days I just … [Read more…]