We are back from an incredible trip! Refreshed, a little more relaxed, and MOST importantly, armed with answers that led to DECISIONS. 

Where do I start? From start to finish the whole thing was incredible to watch and took an absolute army of people. I'm still reeling from how many! Within only a day of posting about our needs to make the trip happen, they had all been met. This was an incredible gift as it freed my time up to hound all of the doctors we hoped to meet with during our visits. It took a tremendous amount of fenagling, but we were able to line up all the necessary appointments in the nick of time. And only a week after we made the decision to go, it was 5:15am and we were heading towards the airport, three very excited pajama-clad kids in tow.[...]

I should never be afraid to ask for help. Because this is what happens:

 [...]

This week we had the first of several in-person consultations to discuss surgery. Every time I even think about a moment of him laying on that operating table makes me ill. Patiently, our oncologist and surgeon walked us through every single detail of the surgery and answered all of our questions. I made it almost through the whole conversation until the very end, when I finally was able to ask where they would cut. When he drew the line across the majority of his abdomen, I died a little inside. I just... I feel so helpless.  [...]

There have been a few devastating moments during our journey with cancer. The first time we hear the word tumor. When we found out he couldn't breathe on his own. When we signed the papers for treatment. Yesterday was another really awful kick-you-in-the-gut moment that will burn in our souls forever. The conversation feels a little blurry, but the main words were:[...]

He's done!!!! In my arms and waking up slowly. A little dazed/confused/angry, but mostly hungry. Trying to wake up enough to eat, and then we are heading home to wait on results. Thanks for the prayers!!

This morning we went for our third MRI. These are always hard days... No eating after 4am, lots of paperwork, telling his history over and over again, and then lots of waiting. But we made it through all that, and I'm sitting in his freezing cold room (why are they always so cold??!!), waiting on his MRI to finish. This time he wasn't intubated and they decided to try sedation only. The last time that was attempted was when we were introduced to the term Code Blue. To say I've been scared today is putting it mildly. I'm terrified. But the hallway has been quiet and my body has become more relaxed the closer we get to the finish line. And I took a million pictures of his grabbing his feet and charming the nurses and have been furiously texting them to Brian who's with our other two. Focusing on the cute moments can be a good distraction.

Holding his body and watching him go under sedation was pure torture. He was fighting it and trying to stay with me, arching his back and breathing quickly while death-gripping my finger. The doctor asked me to stop talking to him bc he was so responsive to my voice. I had a hard time with that, panicking that each breath was a struggle and whispering 'it's ok baby, you're ok you're ok you're ok. Is he ok? You're ok you're ok.'

Nurse just came in and said only 30 more minutes to go!! Then he's back in my arms and we can start to look forward to going home again. We aren't sure when we will hear the results, so we will just be a ball of anxiety, tears, and prayers for the next day or two. As Brian just told me 'I hate this part. Nope, I hate all of it.'

This morning I rolled over and found this...  No words for this much goodness.

[...]

After a week apart, we are all home together tonight. It was Nolan and Arlo's first time they've ever been apart, and after tucking them into bed tonight, we overheard them talking...[...]

Today was the third day of round #5 of chemo. It's so hard to believe that we're already here.... 5 treatments in. 

This week's meeting with our doctor brought a blow that we were expecting. The tumor's continuing to not shrink, but it is believed that the treatments are keeping it contained. So we'll proceed the way we're going, in the anticipation that it could take up to a year before we get where we want to be. We'll treat, and evaluate, and treat, and evaluate, and treat...... our heads are spinning. We're back to the mindset we tried so hard to attain in PICU days: One second at a time, then a minute, and then a day. Tomorrow can worry about itself. God just get us through today.[...]

When we were back in the PICU, my friend Virginia surprised me with a beautiful handmade quilt for Redden, complete with a beautiful superhero 'R' right in the middle, designed by her husband Matt. I'll never forget how it felt to receive a gift like that... so thoughtful and beautiful. I put it on the chair next to my 'bed' and it was one of my favorite things to see every day. [...]