Rowan’s Story

Site created on July 14, 2019

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Journal entry by Alec Shea

I still remember the physical reaction I had when we were told Rowan has cancer. I remember specifically Jodi and I sitting in a small room off the side of the surgical wing of Rocky Mountain Hospital for Children. The room was cold. It was dimly lit with the plastic furniture of a sterile environment that we’d come to know very well over the next seven months. The surgeon was direct. Which we appreciated. As his words were still hanging in the air, we began to cry. We wept uncontrollably for a while. And as humans do when they cry, we became full of snot! Now one thing you’d think a surgical consultation room would be stock full of tissues. Nope. I had to drag my ugly-crying, Nicholas Cage-looking-self out to the waiting room to get us some tissues. This began our  hatred of the worst tissues in the world! I bring the box of tissues back into the room and Jodi and I proceed to blow our noses only to find we are blowing with bark. Swear to God. Like dried bark off and old, dead oak tree. Hurt like hell. Obviously this was a minor inconvenience considering the news we had just received. But looking back it sticks out as a funny moment during the most horrific time of my life. It’s funny the things we remember. Those tissues have been an ongoing source of comedy and frustration over the last seven months. They taunt us with their toughness. Just lying there all near in their box, laughing at us! Ok, enough about the tissues.
 I guess the tissues are part of a bigger picture of reflection. As we stumble into 2020, I can’t help but look back over the past year with the same mixture of dread and hope I’m carrying into the new year. I’ve never been a New Years type of person. I’ve never bought into the “new year, new me” hype. But when Rowans was diagnosed we knew his last treatment would be around the new year. It gave us  something to aim for. For the first time in my life I wished away the fall and the holiday season to get to the new year. True to the schedule Rowan completed chemo on January 2nd and we have started the new year off on the best possible note. So, Happy New Year to all of you. 
I realize I haven’t posted anything on Caring Bridge for almost a month. Partly because I think most of the folks who read this are also on Facebook and in part due to I wanted to have some time to truly enjoy the holidays. Enjoy them we did. This Christmas was very peaceful. A deeper appreciation for my wife and son. A time to rekindle relationships with family. All too often we get caught up in petty, bitter fueds with people we love, especially family. These fueds are born out of us feeling like we’ve been wronged in some way. I can’t speak for everyone but I can say for myself, it was complete nonsense. This year I put that aside and apologized to people I needed to make amends with. It didn’t matter who was right or who was wrong. What mattered is there are bigger issues than some petty bullshit from the past. Rowans illness has put all of this type of drama into perspective for me. This holiday season I put myself out there in front of people and said “hey, I know I’m an asshole and I’m sorry for what I’ve done to you.” It’s amazing, the response from those folks was to repeat that back to me and we’ve moved on. If Rowan had never been diagnosed this would’ve never had happened. If there are any positives to his illness, this is it. Christmas Day the three of us just enjoyed a slow day together. As I have written before, cancer was not invited to our Christmas party. We just held on to each other for the day. Rowan played and Jodi and I were able to breathe...very slowly. 
The day after Christmas we skied. Rowan on skis is my happiest place. Watching my son enjoying the sprit I love more than anything makes my so filled with joy. Nothing compares to watching him ski for the first time while still receiving chemo. He did amazingly well. He crashed on his first run but he got up and got after it again. Later that night, Jodi was quietly sitting next to me when she told me it scared her watching him crash. She was well tried about what could happen to his broviac if crashed hard enough. Could it come out? Would it detach? Like a lot of things in life, you don’t worry about the “what if’s” until after the fact. It was very upsetting. What kind of parents are we? We had a few panic filled moments wondering if we were insane letting our son ski with a broviac! And by-the-way, he is still dealing with nueropathy! Oh my God we are idiots! Ok. Ok. through the nose and out the mouth! We calmed down. I look at it this way. Life is risky. Rowan has dealt with so much over the last few months that I wasn’t about to take something away from him that he loves so much for fear of what might, or could, happen. If I did that then every time I’ve preached about blowing up your boundaries or living on the edge is how you feel truly alive, would have been a lie. I would never take away something my child loves to make me feel more comfortable. We have a saying in our family. Courage over comfort. We were determined to let Rowan continue skiing. Now, before you call us crazy, we did have a conversation with his doctor about it. The response we got was exactly what we wanted to hear. Rowan is fine to ski, just no terrain park jumps until that broviac is out. We have been skiing 3 or 4 times now and Rowan is starting to ski like his old self. Nothing makes us happier and more proud. One photo I’ve added is of Rowan in the big snow mover at the Snowy Range Ski Area. Rowan was allowed to ride along thanks to the Maddox family. If you don’t know the Maddox family, they’re the owners of Snowy Range Ski Area. They have been wonderful to Rowan and they made our day when they let Rowan jump in while the terrain park was being made. Ro was beside himself! Thank you guys so much.

Last CHEMO! 

New Years Eve found us in Denver. We had gone down the 30th so Rowan could participate in an ice skating event with the Colorado Avalanche. Rowan and Jodi were able to skate on the ice at the Pepsi Center and were joined by a few Avalanche players. It was a fun event for Ro. Although he struggled skating because of his neuropathy, he still had a blast shooting pucks into the net. I think Jodi may have enjoyed her time chatting up one of the Avalanche players...but I could be wrong.🤪

On New Years we watched the fireworks at midnight from the condo. I will say Denver put on a fun light show and we had great seats from the high rise. New Years Day brought a lot of family into Denver for a short stay. My folks flew in from Louisville. Jodis family came from Nebraska. It was a quick, but special time to be with our families. Rowan was so excited to see his grandparents. He was mostly excited to see his best friend. His cousin Olivia. Olivia is a junior, honor roll student and basketball star. (Hopefully a future Wyoming Cowgirl!) AHEM, coaches! Rowan adores her. And she adores him. Olivia is the perfect role model for any kid. Rowan looks up to her and she has taught Rowan so much. Over the last seven months, I think he has taught her a few things about toughness. He has taught us all about that. 

The morning of the 2nd was like any other chemo morning. Get up and get moving. Get into the right mindset and prepare to be at the hospital for hours. This was a bit more jovial. Rowan has decided his party was going to be “Friends” themed. You may remember Rowan has watched all 10 seasons of the show during his cancer battle. So we were all decked out in our Friends attire. The chemo portion went smoothly and Rowans labs got a big thumbs up from the doctor. It was time to party. It was time to ring that bell! The Child Life Specialist at RMHC do an amazing job. They organize all the staff, nurses, family and friends to meet in the hallway outside of Rowans room. Rowan comes out and sees everyone and the place erupts! Rowan leads everyone down the hall and into the lobby where the bell is hanging. Now, you don’t just walk down the hall. Everyone has a musical instrument. Is was quite a noisy procession. Once down by the bell Rowan was grinning ear to ear. But we had to wait for a minute. Rowans doctor was in the ICU with another patient. It was grim reminder the stakes are so high here. While we are celebrating another family is praying. It didn’t dampen our enthusiasm for Rowan. But it served as a brief reminder we are celebrating Rowan finishing chemo, not getting a bandaid on a boo-boo. This is really, really hard. Dr. Z ran in and hugged Rowan and told him she wouldn’t miss his bell ringing for anything. Rowan was ecstatic. As were Jodi and I. We’ve had the best doctor. Rowan rang that bell three times. The three of us hugged. And we cried. The last seven months came out. We squeezed each other and for a brief moment, I didn’t want to let go. Needless to say, we partied after this! 

So what’s next? 

At this point Rowan is done with chemo. Around the 15th of January Rowan will have scans to make sure his body is cancer free. After those come back clean Rowan will have surgery to remove his broviac. We can’t wait for that. To have no hardware sticking out of his body will be a great day. 

A note of caution: We are trying to not get too high with our emotions. Unfortunately, we now live in a world of relapse. We have seen it too many times. It is easy to get caught up in the emotions of chemo ending and the parties. It is our job as parents to make sure we stay level. I wholeheartedly believe Rowans scans will be clean, and stay clean. But I will be prepared. I will hope for the best and bring positive thoughts with me to every scan for as long as Rowan has to do them, which is often. It scares the shit out of us. 

A return to school! Rowan will be in school at the semester change. So around 21st of January. He is so excited to be with his friends again. SRA has done so much for him. We will never be able to repay all of the teachers, staff and administrators. I’m sure there will be some bumpy roads getting used to the schedule again but we will get through it. 

I hope this catches you up a bit. I’ve added some photos from the past few weeks. I’m sure I’ve forgotten something. Thank you for your continued support and love. The new year will bring challenges and joy for sure, we are glad to have you on our side. As always, please excuse any typos...I do all of this one my phone with my thumbs! 

All the best,

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