Days 16 & 17 - AMAZING

I'll never forget our first night in the hospital. We had spent all day in the ER waiting on the ultrasound that ultimately discovered the tumor in his abdomen. Everything after that felt cold and numb. Carrying my baby down each long hall and feeling like I was about to offer him up as a sacrifice. Feeling every impulse tell me to run out the door with him, back to our home, where everything was 'normal' and ignorance had truly been bliss.

They had scheduled his MRI for the following morning, and warned me that he couldn't have any liquids after 4am. As of that day, January 17th, he wasn't even a month old. The idea that i would have to starve him for 4 hours left me in a state of panic (which humors me greatly now as he's had to go a full 24 hours without food more than once in the ICU!). I sat and stared at the clock, watching the minutes pass, and dreading 4am. Dreading his last feeding for the morning, and fearing that I would be incapable of soothing a crying infant for hours. Dreading the scan that could confirm that he had cancer. Dreading everything that google was telling me could be true. I fell asleep twice that night, each time for 45 minutes. I know because I couldn't look anywhere else but that stupid clock all night.

The last 17 days I've had that same sick and panicked feeling every time I remembered that we have a huge unanswered question lingering... the genetic test. Like a dark cloud it's hung over our heads and weighted us down, reminding us over, and over, and over again that we don't know if the worst is yet to come. I haven't even been able to bring myself to ask his oncologists if they know the results yet, fearing that they would deliver what he had come to expect... bad news.

The last 3 days have been really amazing. He's gotten off of the ventilator. We've gotten to hold him, kiss him, love on him. They've slowly introduced milk back into his feeding tube with no vomiting or aspiration. He's almost completely weaned off the oxygen. His color looks amazing and he's been smiling nonstop. Today he was even making noises as his vocal cords are starting to heal. After the moments where I didn't know if I would ever hear sound from him again, the sound of his cry is absolutely the most beautiful thing in the world. 

Getting used to the high-flow cannula blowing oxygen up his nose! (Endless entertainment for Mommy and Daddy!)

And today our ICU Doctor told us during our morning round, 'He's made remarkable progress. We're transferring you over to the cancer center. I'm so pleased!' I never thought hearing that we are going to a cancer center could make me so very happy! 

But still, in the back of our minds, no matter how amazing these last couple of days have felt, a tiny voice kept reminding us that our joy could all go away the minute we hear the results of the genetic test.

Today one of the members of our Oncology team came by to check in on him, and he asked us if we had gotten the results of the test yet. No, they haven't come in yet, I responded. He pulled out his phone and mumbled that he just wanted to check and see. A minute later he turned the phone to me and delivered the test results with a huge grin:

NOT AMPLIFIED!!!!!!!!!!!!!! (This is good news just in case you aren't well-versed in infant cancer. It means he does NOT have the genetic condition that makes him high-risk.)

The next 5 minutes that I waited on Brian to come back for lunch were the longest and happiest minutes I've had in a lifetime. Thank you God, THANK YOU GOD!!! And the minute he walked in the door he said 'You seem unusually happy...?' And we hugged and cried and just kept saying 'He's going to be alright!! Thank you God he's going to be alright!!!'

We are one round into our chemo treatment, anticipating one more round in the next 2 weeks. Then scans to track the progress of the tumor shrinking. At that point we are hopeful that testing and scans will show that the tumor has responded amazingly well and that he will be done with treatment and we can just focus on keeping him isolated and healthy while his immune system heals. Then lots of hovering, watching, waiting. Let's be honest, I'll never sleep again. Our road ahead is so very long, but we are taking it each minute at a time. One foot in front of the other. 

As I write this I'm smiling. The happiness of the last couple of days is overwhelming. 

And yet, my heart is also broken. We've met so many families here, and through support groups, whose little warrior children are fighting bigger and more horrible versions of this cancer. The people who didn't get to hear good news that we got this week. I'm reminded that we are one of the lucky ones. Isn't that just bizarre? WE ARE ONE OF THE LUCKY ONES. And it's hard not to be angry still. There's no reason that an infant should be born with cancer. There's no reason that a child should have to fight their battles this early in life. I don't understand it. I will never understand it.

The children's cancer world is ugly and cruel. But the little warriors in that world are absolutely beautiful. 

This has changed us in ways we're only beginning to understand. Our hearts and minds have been opened in this world of childhood cancer, and we can never go back to who we were before. Because of Red, we will be better. To support him, encourage him, cheer him on. Our hero is 1 month old and 14 pounds.

Every person goes through their own battle. Redden was born into his.