First and foremost, I want to thank everyone who donated to our campaign in 2018. We raised over $10,000 for fourth consecutive year! The cycling conditions were super cold and windy for those that rode, but all the more reason I’m thankful for everyone who came out to support. Be on the lookout this year for a BBQ/Party/Something in Arlington…more on that to come in a future post, but we’re thinking May time frame for now. First or second weekend. We’ll also participate in the Cycle for Life campaign in 2019.
Great acts are made up of small deeds. – Lao Tzu
The below image represents multiple things – the kindness of my great Uncle Randy, the beauty of how such small deeds (delivering collard greens to someone’s mother) can lead to greater acts beyond what anyone could ever know (donation to the CF Foundation). While I never had a close relationship with my great Uncle Randy as he lived south of Richmond and was battling cancer for over 5 years himself…he seemed to take a special liking to me – routinely asking how I was doing (he and I both picked up c diff while in the hospital) or sending small amounts of money he didn’t really have for me to start my own savings account. In lieu of flowers for his funeral, he asked that donations be made to the CF Foundation and we received well over $1,000 in donations – many from people I’ve never met and likely will never know.
February 1 marked a pretty cool day…it was my fourth birthday. There were times where I or my parents weren’t sure we were going to see 4, but here I am. For anyone wondering what I wanted for my birthday – nothing but your continued support. The link to show support/donate is https://fightjackfight.passioncff.org/. All donations are 100% tax deductible and go toward finding a cure! It will remain up throughout the year.
We went to the National Aquarium in Baltimore for my birthday. Riley, Paige, Hayden, Morgan and Abby all took off from school to go with me, Mom, Dad, Taylor, Bama, and Pop. We had such a great time.
Later that evening, I also had some special visitors – Great Aunts and Great Grandmothers from Dad’s side of the family came up from Richmond to spend the night and hang out.
Triple Drug Combination for CF
Probably the most newsworthy thing in the CF community aside from losing some inspirational CF’ers who’ve done so much for the awareness has been the breakthrough of the Triple Combination Modulator which is expected to reach 90% of those within the CF community. Unfortunately for me, I fall within the 10% who are not expected to benefit from the drug. While that’s discouraging to some (still not a cure, it does not work for me), it also provides hope that they are getting closer to unlocking therapeutic advancements which can improve my life and hopefully — one day a cure for all of us with cystic fibrosis.
Last 2 Checkups (including Annual Checkup)
Apologies for not getting something out more timely, but just wasn’t in the cards. Anyway, my last two doctors appointments with my Pulmonary Team were much more uplifting and I’ve managed to keep the feeding tube away for now. The team seems genuinely satisfied with my current weight, BMI, etc. so the feeding tube is still in talks, but not as seemingly dire as it once did. So long as I continue to eat and gain weight and maintain a high enough BMI, I can put it off.
For my annual appointment, the day starts out super early with therapy so that we can get to radiology early and knock out my bloodwork. Last thing we want to do is hang around a hospital during flu season so we get in and get out! I didn’t cry once during my doctor’s visit. They took 7 vials of blood. The doctor who drew my blood is a veteran. I’m getting to the age where I like to see what the doctor is talking about when logged into the computer and viewing my lab work and results. Because I did such a good job at my annual appointment, Mom and Dad said I could get anything I wanted from the toy store – Bruder Trucks!!!!
7-Month Recap Flash
July 2018 (Nationals Baseball, Pumping Iron, Hikes, and Therapy)
Dad picked the hottest day of the year to bicycle to the Nationals game. We stayed for about 4 innings before calling for Mom to pick us up.
August 2018 (Arcade, Not much else…)
Not much went on in August aside from therapy and deer paid us a visit in the backyard.
September 2018 (Fall Junior T-Ball)
Mom signed Dad up to coach my team this year. In all, we had 7-8 players on my team and I had zero at-bats. For some reason, I didn’t want to outshine my teammates so embraced my shyness while Dad coached my teammates. I think it will break Dad’s heart if I don’t end up playing baseball.
October 2018 (Halloween)
This year I was Gekko from PJ Masks. He’s my favorite character on the show. Taylor was a polar bear. The last photo is me with Pop. Pop has put on the Madison Manor fire for about 30 years. This year his back was bothering him so I used my John Deere Gator to pull limbs into piles to be used in this year’s fire. We even received help from the Boy Scouts. I love this photo! For those of you worrying about smoke damaging my lungs…I maintained a super, safe distance :).
Also, Red Sox won the World Series so my New England relatives sent me this awesome shirt. Mom and Dad are already saying we’re coming to visit this summer and we’ll go to Fenway and we also hope to tour Vertex.
Dad’s company IT Concepts, sponsored the CF Foundation Northern VA/Washington DC Chapter Cycle for Life event in Leesburg. We raised over $10,000 and Dad was the largest fundraiser for the event. This year they are looking at moving the event up to mid-September which should hopefully make for more enjoyable cycling weather. This year the winds were so bad that roads were impassable with down trees and the party tents weren’t so much of a party as they were a life obstacle. Regardless, it was a great time and I cannot wait for next year.
We went down to Lewes in November. Here’s a couple photos.
December 2018 (Annual Checkup at Children’s + Christmas)
I love Santa Claus. Christmas is my favorite time of year. This year we shot down to see Dad’s family the week before Christmas and I received so many presents. There are so many tractor stores down that way. I made Dad pull off so that we could hop up and see them all up close. Can you believe they leave the doors unlocked?
My New Orleans family came to town on Christmas and showered me with awesome gifts also. We went out for a family dinner in DC one night which was a great time. Afterward, me, Mom, Dad, and Taylor ran around the city, visiting monuments and stuff. Technically it was November, but Dad took me and Taylor to see Santa. I didn’t dare go near him, but Taylor couldn’t really muster up a fight like me so Dad put Taylor in his lap. Can you believe that? Mom thinks its crazier that Dad took her to see Santa without socks on her feet.
I brought in the new year asleep in bed.
15th Annual Brewer’s Ball
The 15th annual Brewer’s Ball took place March Saturday, March 2, 2019 at the National Building Museum and White Ford Bronco jammed out. Mom, Dad, and some other friends and family from their companies attended. Dad’s company, IT Concepts, is a Hops Sponsor. Bridget’s boss also invited about 18 friends. In total, we had about 26 friends and family show up and support.
Jack’s Sports Minute
Capitals – the honeymoon is over. Let’s take care of Game 7, and repeat.
Glad Bryce Harper getting thrown out of games is someone else’s problem. Nats need to get the bullpen together and we’ll be fine.