Day 69- LOOKING BACK

Yesterday's chemo seemed to be fine, but when we got home he just felt a little off. He seemed weak, and he whimpered and cried on and off. I almost think that cry is the worst one... the really sad cry that says 'Mom and Dad I feel so terrible I don't even have the strength to cry.' It's heartbreaking. Then when we went to hook him up to nightime feeds we noticed his clothes were soaked. The ng tube cap, where we attach everything, BROKE. I was beyond angry. We had just been at the hospital that afternoon but of COURSE it waited until we got home to break. After debating whether or not to drive to the ER in the middle of the night, we opted to give him a chance without nightime feeds and seeing if he would nurse throughout the night and be ok. In theory this sounded great, but in reality he's gotten so used to feeling comfortable all night long with his constant drip feed that he was up almost every hour hungry. 

BUT... seeing that face for 12 glorious hours without a tube? WORTH. IT. 

Today was day 3 of the 4th round of chemo. It was our longest and hardest day, as we had a nephrology appointment, chemo, and an ultrasound all back-to-back. The nephrology doctor said she wanted to keep a close eye on his kidney function. We're all hopeful it will return, but until this tumor shrinks we won't be able to properly analyze it. There's also a chance he'll be on blood pressure medicine for the rest of his life. We'll cross that bridge later, but the long-time hippie in me threw an internal fit at that information.

Chemo next, which he mostly slept through. Then the ultrasound. I knew not to get my hopes up about this scan as it doesn't show the true full picture of the tumor, but I still hoped. I always HOPE. And I had to protect my heart from feeling defeated when the size measured about the same. The MRI in a couple weeks will tell us the accurate picture, and we'll evaluate from there.

Sometimes I am able to step back from the tiny details that fill my day, the medicines and the hourly to-do items that keep me living moment to moment, and I see the big picture... and I am still in shock. How can a baby, an infant, a CREATURE THIS SMALL have cancer??

I continue to be amazed and sobered every time I turn in the card and he earns more beads of courage. Stringing them has become ritualistic... both healing and hurting. Acknowledging and recording each pain, and displaying that it's in the past. 'This bead was a day he was on a ventilator. This bead was when you held him down and he got his PICC line put in. This bead was when he passed his respiratory therapy test and could start nursing again. This bead was the chemo drug he's getting right now.' The strand has almost doubled what it was only 2 weeks ago when we were inpatient. So many milestones. So many emotions.

Very very VERY slowly my attitude about this new life is shifting. I've mentioned before that I'm realizing it's not a sprint. As much as my focus is on getting rid of the cancer, I'm learning (so incredibly slowly) that my heart and mind would handle this better if I accept it as our new reality. Then I won't fight against every step of this. I'll embrace it more... knowing it gets us one step closer to our goal, but with an attitude that doesn't crumble every time I don't get what I want, or the plan changes. 

It hit me today how much of the marathon we've already traveled. As we finished chemo and walked back to the elevator I stopped to say hi to the PICU receptionist who sat with her dazzling smile. PICU receptionists were always a bright spot during our stay. I think they are screened for most amazing personalities before they are offered the position, because it never failed... every time I saw them, their smiles made my day a little better. As I stood there, one of my most favorite PICU doctors walked by and did a double-take when he saw us and came over to say hi. Once I said Redden's name his eyes got wide and he said he couldn't believe how good he looked. Then he took us for a spin around the entire PICU and I got to see several familiar faces... people that were patient and calming and assuring with us, and deeply concerned and caring for our baby. It was overwhelming and incredible to be back... as a VISITOR. Holding my baby, not just holding my coffee. To see our old room, and to know that wasn't where we were anymore.

It's easy to look at tomorrow, but today I looked to the past and saw very clearly, HE'S COME SO FAR.