Well, bear with me as I am having technical difficulties tonight with multiple electronic devices... my wireless internet connection is r-e-a-l-l-y slow and my camera stopped recognizing it was connected to the computer, so all the great pics I have from Fri, Sat, Sun are currently trapped on my camera. boo.
Okay, enough about all that... there is A LOT to fill you in on since Thursday night! Let's just take it day by day:
We rose early on Friday up at the cabin (feels like a week ago already) to drive back to Minneapolis for a FULL day of activities and festivities. First stop: Ronald McDonald House to see Jerry, the house dog. Ali needed a Jerry fix, so we dropped in and said hi to the staff. It was also cool because I got to meet Charlie Knuth's dad in the hallway! Super nice guy. We were supposed to spend Friday with Trisha, Charlie's mom, but Charlie had to have a dilitation done on his esophagus on Friday last minute, so we missed meeting Charlie or spending time with Trisha :(. After RMH, we dropped Ali off at her pre-school and headed to Noodles for lunch. Noodles was one of mommy and daddy's favorite lunch spots last year. This year, they are tearing up most of Washington St (ave?) to put in a light rail, so it was a bit of a ghost town. It was also rough being back in the neighborhood, given the date. Friday (June 24) was one year from when Bella began her chemotherapy. We really felt her loss at lunch and couldn't get out of the neighborhood fast enough.
Next stop, after a coffee pit stop, was our meeting with Children's Cancer Research Fund ( CCRF ). This amazing organization has gone above and beyond the call of duty in helping to grow PUCK from scratch. Not only that, but if it wasn't for CCRF, there would be no initial funding for this clinical trial. They have been in the mix since Day 1. Rather than just raising money under the CCRF name, we've been working on branding PUCK, so that children undergoing transplant for EB have an organization that is not cancer specific to support them. Usually, 1 out of every 4 transplant patients at the U do NOT have cancer, but some other genetic disease that they are using a cancer treatment to treat them.
We had an AWESOME meeting with CCRF's Executive Director, their head of Marketing, and their head of IT. Angelique, Lonni, Jay, and I have been working pretty hard over the past 6 weeks or so to really organize and formalize PUCK so that it is easier for CCRF to see the direction we want to head, so they know how to best support us. We covered A LOT of ground on Friday afternoon, and everyone left the meeting with a clearer vision of how the parent and its fledgling division can best support each other. Exciting stuff!
After that, Angelique and I had the unique honor of taking the founding parents of CCRF, Diana and Norm Hageboeck, to dinner in beautiful downtown Edina. 30 years ago, they found themselves in a similar situation as we do. Their own daughter passed away from Leukemia, and she was (roughly) patient 50 in a clinical trial to save her. Their friends got together and together they put on an event to honor their daughter and raise some money for research. Well, 30 years and tens and tens and tens of millions of dollars later, the Hageboecks are still together, still full of passion, and still raising money to give every child who gets cancer a chance at beating it. They are an AMAZING couple. So full of life, and SO FULL OF JOY. Angelique and I felt like we were staring at a future version of ourselves, and we just so appreciated them giving up their Friday night to come have dinner with a couple they'd never met before. They couldn't have been more gracious. Hearing their story really helped validate our own.
After dinner, we headed out to North St. Paul to meet up with Ali at the cruise night for classic cars. Our dear friend Mark Flora heads up a wonderful, authentic 50's rock band called The Holy Rocka Rollaz, and they were performing at this cruise night. Ali's babysitter met us there, and we hung out with Mark's wonderful family, and had a blast listening to 50's rock and roll over the sound of classic cars cruising up the main drag. It was a truly "american" atmosphere. Great vibe; no testosterone or attitude, just a bunch of laid back car enthusiasts hanging out together.
We crashed HARD by the time we got to our other friends' house we were housesitting for and got to bed as soon as we could.
Man, Saturday morning came FAST. We had to get up at 7am each of the first three mornings here (including Sat) which is really 5 am for our internal clocks, so by the third morning in a row of waking up essentially at 5 am, we were tired! We got some coffee and got to TIME TO FLY, CCRF's annual race, with about 15 minutes to spare before my 5k race. That was enough time for me to get warmed up and stretched out. I wore some knee-high fabulous socks in honor of Bella, and headed to the starting line. I normally run on a treadmill, so I really had no idea how fast I should run, and I ended up running WAAY faster than I would have if I knew what I was doing. Ironically, I would have probably posted a slower time as a result, so maybe ignorance was bliss! My two goals were to 1) not stop running and 2) not throw up. I felt like doing both toward the end of the race, but pushed through. I was shooting for 30 minutes, but got a little caught up in the moment and ran a 22:27 and came in 27th out of 366 and 8th in my age group of 30-39 yr olds. At 38, and having run my last 5K roughly 30 years ago, I am pleased with my time... and I am actually able to walk today! LOL. I know also that I was pushing myself for Bella. I was in a lot of agony at the end of the race, but I kept thinking about all the mountains Bella faced in her short life, particularly sprawled out on a PICU bed for over 3 months. That image made me dig deeper and not slow down my pace. When I crossed the finish line, I broke down physically and emotionally and had a good, cathartic cry.
The rest of the morning was adorable and moving. Ali ran the kids fun run 1k and she never stopped running! It was the farthest that little princess has EVER run at once by a long shot, but she did it! We were SO PROUD of her for accomplishing it. It was a great event, and Ang and I have all kinds of ideas for how to participate a lot more fully next year, and how to have the PUCK booth be THE PLACE to go in between races for kids AND adults! Stay tuned!
We had lunch at our old hang out: Punch Pizza. Good times.
Next on the day was my internship partner and dear friend Dayna's baby shower! Dayna is due in early August as well, and it was GREAT that we happened to be in town the day of her shower! We headed up to Elk River and had loads of fun with all the other families there. That was the last event on the docket for Saturday, and we SLEPT HARD and SLEPT IN!
Today, we did pretty much nothing until 4pm, and it was absolutely WONDERFUL. After an incredibly busy week, we needed some serious downtime, and got it today. Only thing on the schedule was a BBQ at Mark and Lisa's house which was only a 2 minute drive away. Easy. We slept in, did some laundry, watched cartoons, slept some more... it was THE LIFE.
4pm rolled around and we headed over to our friends Mark and Lisa's for Mark's infamous "Beer-Butt Chicken." I WISH my camera was working so I could show you a picture. Actually, for those of you old timers who were reading last sumer, you may remember the picture of a whole chicken essentially standing on its legs on the grill. Yup. This was round two! This year was even better. Ali got to play Littlest Pet Shop and Barbie with their girls and they were in toy heaven. Ang got to relax on the comfy couch while Lisa worked her magic at the stove, and I sat in the adirondack chair outside while Mark worked his magic on the grill, first with the chicken, then with the vegetables! What a feast. After way too much food and even more ice cream, we dragged our comatose, overfed bodies back home for the night.
There has been so much play by play to just cover, that I didn't spend too much time getting deep like I like to do, particularly given the impact days that we just had. In a word, the whole trip has been bitter/sweet. There is no escaping the bitter pain and sometimes anger of being back without Bella one year later. We were "Supposed" to be heading back around this time for Bella's one year follow up. It wasn't "supposed" to go this way. We weren't "supposed" to go home empty-handed, nor return empty handed.
However, "supposed to" is just a made up construct. There is no "supposed to" out there. It is a myth, a fairy tale we tell our selves when something didn't go as WE planned it... as if we are in control and the universe "should" do our bidding. This whole cosmic journey has been one big lesson that the events of our lives cannot be controlled, however, we always get the final say in how we choose to react to them.
We always get the last word.
Our last word? We may not have been able to control the events of Bella's life and death, but we are crystal clear that everything we did with Bella, and everything we do now is so that every other kid with EB has a better shot at life as a result. In living this way, it has brought into our lives the most amazing people from here in MN to you all around the world.
That. is. sweet.
(Sorry again for no pics... )