Day 365- ONE YEAR AGO

A year ago YESTERDAY we took Redden into the ER for an emergency scan to check the nodules under his skin. 11 small bumps on his body that felt like m&m's and frozen peas. Bumps that 9 different doctors had looked at and dismissed as 'random cysts that were not concerning.' Bumps that I noticed were getting bigger, that made me insist on our pediatrician taking a look. Bumps that made his typically joyful demeanor become stoic. Nevertheless, we assured each other that this was nothing. Google assured us it would be ok.

But I knew deep in my heart that it wasn't. I had known before he was even born that something was wrong, even though absolutely nobody believed me.

As soon as the scan started the nurse made a face and said 'Oh...... it IS something...', pointing at the screen. As soon as she said it and we screamed 'what? What are you saying? What are you talking about?!' she realized what she had said and only repeated 'I can't tell you anything' in a robotic voice. Up until that moment I had never heard my husband yell with intensity at someone. Up until that day I had never known the deepest heartache that I could feel.

We were in the ER for 9 hours before a doctor came in with answers. She crouched on the floor and put her hands on our legs. Tears were in her eyes as she said 'I'm so sorry but I have really bad news. Your son has a very large tumor in his abdomen.'

And all of a sudden, we were residents in the children's cancer wing. At this point it was late at night so the walk to our room was ominous and quiet. I saw a few patients around... bald heads in wheel chairs. Strong spirits with weak bodies. A world I knew existed but never truly SAW until then. Until it was MY WORLD.

It's hard to wake up from a nightmare if you aren't even asleep.' - j.s.

A year ago TODAY we spent all day trying to get on the MRI schedule. The hospital was slammed with tragedies and it took 12 hours of Redden being NPO (no milk/food) before we were able to get his scan. I had sat up the entire night before just staring at the clock. Fearing everything that the scan and the day would bring. 

When he went back for his scan, I walked back up to our room to work on my dehydration level from crying a bucket of tears. Brian and my Dad went to get food for all of us. And I heard the hospital sirens go off. The nurse ran past me screaming 'it's the baby!' and I knew it was mine. I remember I felt paralyzed. I wanted to run but couldn't for some reason. I stumbled into the elevator, calling Brian but not getting a signal. When the doors opened I weakly walked back to the MRI waiting room where a flurry of doctors were running and yelling. When I asked if he was ok, a doctor said 'we don't know.' I stood there in the doorway unable to move. Enveloped by sirens and chaos, yet totally helpless to participate. His airway had collapsed when they tried to start the scan, and just 24 hours into our journey he had stopped breathing.

That was the last moment before he was intubated. It started out as intubation for just the MRI, and biopsy, and then stretched farther once we also needed the MIBG scan. I didn't even bring any bags from my cancer center room up to PICU because I never thought we would stay. Never realizing I would live there for almost 3 weeks.

When the scan was finally in front of us in PICU, it was the most horrifying thing I've ever seen. The outline of his little body, showing even his elbow dimples, white and bright all over... except his abdomen. It was almost entirely solid black. Full of cancer. 

A year ago TOMORROW we would sit in the waiting room and hear the results of the biopsy.. 'the tumors are malignant. neuroblastoma.' We asked a few basic questions and then excused ourselves from the room where several others had gathered to hear the news with us. We found a quiet spot near the elevators and Brian delivered what I will hold in my heart as the most poignant and incredible speech of his life. The conversation was the first time I felt hope. He reminded me that now, finally, we had some answers. We could start to walk in a direction. And we held hands and walked back in the room to start making some decisions.

One year has passed, and I am far enough away from those days to feel their strangeness, yet still feel their familiar horror. In the room now, Brian is holding our sleeping chunky guy on his chest. Both of them are snoring. Red only sleeps the first few hours of the night without us before he calls for us, needing to feel that we're there. We are tired with our sleep-deprived routine, but we also do not mind. We need him too. 

Today I unpacked the cancer bag that we have always ready in the front of the closet for an emergency visit. We've gone for months without a hospitalization, and I finally felt confident enough to get it down to just a few things and put it in the back of the closet. Such a small detail, but it's a giant step for us.

Tonight we talked about those first days and shared with each other how they felt. We kept coming back to how much sadness we experienced. We were truly deliriously happy with our life with a third boy. The stress of first, and even second child were things of the past, and we had just enjoyed each minute that our newborn had provided. It was so perfect, bringing a baby home over the holidays to a house full of excited people. A perfect excuse for every day to be full of pajamas and coziness. Going from such levels of happiness to such absolute despair had broken us in a way we've never recovered from.

When I'm asked how he's doing now, my answer is always that he's doing great. Because he IS. He's finally overcome his trauma from the tube and is eating like a champ. He's taking steps. He's graduating to longer and longer times between scans. 

Most importantly, he's beating cancer. 

But there's so much more to the answer than that. Isn't there always? And I don't always share the 'more' because I've learned that many people can't handle the answers. Our road ahead is very, very long. We still deal with sadness, almost every day. We are actively trying to repair the insecurities and fears we see in our oldest kids from our family being so physically apart for so long. We are trying to learn how to talk through things better as a family. We are re-learning how to be loving to others, after a year of only being able to see ourselves. We struggle still with being in the social scene that used to bring us great joy, only to feel complete isolation. We see clearly how much of life we have been robbed of this last year. We are continually getting clarity on the ways that cancer has seeped in and destroyed. 

We are still so very broken. But one year later I am overwhelmed with gratitude at how very far we've all come. And I'm embracing that we aren't ok... and that's OK. Maybe we'll always be a little messed up from all of this. The fear I know will never go away. But NEITHER WILL THE GRATITUDE. Because life???? We were given that gift as we watched it taken from many. We are home with our baby while so many are missing theirs. And these broken hearts of ours know happiness now that far exceeds what we had that first month with Redden. Joy that can overwhelm me when I see my THREE children together, playing, wrestling, and just being kids. To know what we could have lost makes us that much more appreciative of the details of our days. We both are able to look back at the people we were on this day last year, and see how different we are today. Not just in the negative or hard ways... but in some really good ways too. We are stronger than we ever knew possible. 

One year later I hope the intensity of the pain and despair I felt never dulls. I hope we never forget a detail of how hard things were. Because if we always remember we will always strive to live our lives with that much more gratitude.