I know they say you're supposed to find joy in the journey... but I feel like the last year has taught me that sometimes you have to find joy
despite the journey. I hope that's okay to say. When my sweet nephew Jackson started showing symptoms a year ago, I don't think anyone suspected what kind of journey would follow. In the past nine months I've watched my nephew go through much more than any child should ever have to endure. Words can't really express it. Cancer has changed everything.
When I donated blood last week one of the screening questions was "have you ever had any kind of cancer." And when I just clicked "no" it felt like a betrayal. Because even though the diagnosis isn't mine, I feel like it's become a part of me. Cancer has become a part of all of us.
I've learned what a hero is. I've seen what it is to endure heartache, sorrow, worries, fear, pain, and suffering. I've been fighting on "Team Jack" as I prayed and prayed this sweet boy wouldn't have to endure such things. He has endured hell continually, and with dignity. He continually does what he has to do.
I've cried. Lots. I cry for Jackson. I cry for other cancer kids. I cry for the families of cancer kids. I cry for understanding and patience. I've cried with other people. With my sister, especially. I've cried to other people, cried alone, in the light, in the dark, in my prayers, to the Lord. I've tried to understand and only partially succeeded. I'm not sure I'll ever fully understand the why part of all this, but I've received lots of answers in the process.
Jackson, Connie, and Brian have taught me a whole new vocabulary. Words like neutropenic, Thiotepa, and engraftment have all become part of our every day conversations. We use lots of acronyms too: AT/RT, ANC, ICS, GFR, BMT, TPN, etc. I know which button silences the alarm on IV pumps...a small thing, but all part of the journey. When I babysat Hailey and Jackson a few weeks ago Connie had to tell me things like, "If his central line gets pulled out..." and "At 7:45 please sanitize the counter and get out TPN, lipids, and..." and on and on.
There have been dozens of visits to Primary Children's Hospital and yet no matter how much I go, it doesn't feel like enough. I never got enough time with that sweet boy, never enough craft projects and games, never enough hugs. And at the end of each visit I always felt guilty that I got to leave but he had to stay. My amazing sister and brother-in-law have been taking turns sleeping in a chair every other night for weeks and weeks at a time so they can monitor things like vitals, chemo, chemo-showers, techs, nurses, doctors, child life specialists, mouth care, infusions, antibiotics, antifungals, and on and on.
And now, here he is. After a brain surgery, three rounds of chemo, six weeks of radiation, and three rounds of bone marrow transplants, he's still as cute as ever. There's still road left to travel...he's not done yet. But he's had his last scheduled treatment. Primary Children's has a special bell in ICS that kids get to ring at the end of their treatment. Connie told me about the bell long ago. Sometimes I would look right at it, excited for the day. On some visits I would absolutely avoid looking at it. Sometimes I would stare it down. But the bell is always there.
Jackson got to ring the bell on Wednesday. The end-of-treatment bell. Ringing a bell is small compensation for cancer, but is an awesome opportunity and I was so excited for him to have earned the right to ring! I was lucky that he engrafted when it was convenient for me...and without missing any classes or shirking any 'sponsibility I was able to drive up from Cedar City to be there for it.
When I got to the hospital Jackson was riding his wiggle-car around the unit. Brian had taped a syringe full of red liquid to the car so it looked like Jack was trailing something from his central line. It freaked out a lot of nurses, doctors, and other staff and Jackson loved that. :) This was part of the joy part. That kid is so freakin' awesome. Here's a bunch of pictures from the event. The bell ringing was part of the joy despite the journey.
Hailey and Jack...You should see the way she looks at her big brother: more awe and love than I've ever seen in a two year old.
Connie, Ashton, and Hailey playing with Jackson's "Beads of Courage." He earns a different bead for everything he goes through: pokes, tests, scans, chemo, hair loss, bandage changes, mouth care, days in isolation, morphine, steroids, etc. Seven long strands and growing. His beads almost begin to put it into perspective what this kid goes through.
Special sisters...scary faces.
Jackson standing on the new stool, getting ready to ring the bell, beads and all.
And then, because I was bawling my freaking eyes out, I didn't take any pictures of the actual bell-ringing part. But he rang it loud and proud.
The next 25 minutes was full of hugs and tears. Hugs from nurses, techs, staff, family, cancer friends, etc. He melts my lovin' heart.
"Ring this bell
Three times real well
Its toll to clearly say
My treatment's done
This course is run
Now I am on my way."
The bell is high on the wall so Connie and Brian arranged to have their friend Mark build an awesome stool to donate to the hospital so every little cancer fighter can reach to ring the bell. This is the plaque on the side of the stool. "Stand tall. Be proud." It's got Jackson's name and, my favorite part, "Cancer Survivor 2012."
Taking off his mask for a photo shoot on the stool...
Me and cute cousin Kaitlyn...
When we all finally pulled our emotional selves away from the bell it was kind of strange to be leaving. I've experienced a hundred million emotions in that hospital. In order to try sorting out what I was feeling, I had to stopping for a couple last pictures by the horse. I fed him some snow...
Then with Kali's help we made the snow into a horn. He's a unicorn now. :)
99% horse, 1% cooler horse.
Connie and Hailey were both sick meaning they can't live with Jackson because he's immunocompromised. Rather than keep Jackson in the hospital longer, C & H came to stay with my parents for a couple nights. Since I was home for the night, we got to have a sleepover. We did fun things like make muffins and hair bows. I sure love those girls.
And since my parents are usually under-represented in my blog, here's cute Ron.
First try, this shot was.
My mom and I struggled to get a good picture together....we tried about a dozen times. This was my favorite fail for obviously hilarious reasons.
Luckily we got a good one together.
Eight hours driving and 500ish miles that were so very worth it. I'm so happy for sweet Jack's bell-ringing self! This amazing boy in all his journeying has taught me how to find joy. He's taught me that we really can do hard things. He's taught me love on deeper levels than I knew were possible at this point in my life. He's shown strength and courage through it all.
I know a real-life super hero. His name is Jackson.