Another Brenner day and rambled thoughts.

Watts is sleeping off a traumatic morning of changing out his NG tube and I'm taking some much needed deep breaths too. Holding my son down as he screams out in fear and pain is very disturbing...even though I remind myself that it is necessary and for his own good and oh! so minor in light of everything else going on in his body. But add on top of that a slow-moving xray technician, having to re-tape the darn thing 5 times, and knowing that there is mucositis in his throat, I am probably going to have some PTSD issues from all of this. Watts, thankfully, will wake up from his nap and hopefully won't remember anything. [NG tube had to be changed because, after a week of super gluing and duck taping it, the leaks could no longer be stopped.]

He's sleeping heavy on my chest now, his breathing deep and raspy as the mucositis continues to heal. I'm listening to the whirling sound of the feeding pump, pumping milk into my boy, accompanying the sporadic ticking of the IV machine. Always tick, tick, ticking. Old episodes of Shark Week are on in the background and the nurses are in and out, starting more antibiotics, administering medications, and waiting on us hand and foot. In the "quiet" moments, I find myself processing, thinking, and trying to recover emotionally.

Watts' blood counts are even lower today (ANC is now at 0...down from 75 yesterday). Which means, more waiting. No known discharge day. More delays to chemo.

We should be on vacation this week. It would have been our first real vacation in a few years and Michael was going to take two full weeks off. I was dying to go to the beach and we would have been there over the 8th, which is my 30th birthday.

Instead we are here. 

There are moments that I feel so overwhelmed... with sadness, with loss, and an indescribable feeling that I am missing out on life. That my little family is in a stagnate place somehow as the rest of the world whizzes by. People travel, go to parties, vacation, sleep in the same bed as their spouse and under the same roof as their babies, and we are here in this tiny room day after day after day.

It isn't true, I know. This life that we are living is not stagnate, but the most intense kind of living, full of pain and questions and completely out of our control. It is a fight of life and death. A battle in a sense that we are waging against the enemy of leukemia. But some of the days are really hard. . . and some of the hours are really long.

Right now I am going to snuggle my boy, watch some more Shark Week re-runs, and pray for a deep abiding peace in the midst of the storm. And contentment in the hardest times. And joy, sweet joy in the moments that are truly beautiful.

PS. I did have a lovely lunch dropped off for me by Debra Morrison. Thank you! Not eating hospital food was a treat!