Day 756 – April 12, 2024

April has brought more great news for Harvey & our family: Blood samples collected during his clinic appointment on Tuesday (April 9th) revealed that he continues to possess no b cells. In other words, the T cells he received in December continue to keep our boy in remission! We’re immensely relieved, excited, and grateful. Yet, always cautiously optimistic and living test result to test result. Harv continues to have chronic sinusitis (a common side effect of CAR T) and intermittent dizzy spells (not a common side effect). He tells us the room feels like it’s spinning and he’ll lay down, close his eyes, and wait until it stops. Thankfully, it doesn’t last more than 10 or 15 minutes and hasn’t been bad enough to make him nauseous, but we’re trying to find the cause. No answers so far. Otherwise, besides a minor cold and cough, Harvey has remained healthy and happy. What a blessing to only need this short paragraph for his medical briefing!

We have something we’ve been excited to share with you. Back on December 7th, Harvey was on his way to Philadelphia to receive CAR T cancer treatment. We mentioned in a previous update that the Corporate Angel Network provided our transportation from Minnesota to Philadelphia, but we couldn’t elaborate at the time – but now we can! Harvey had the chance to fly in a private jet loaded with delicious food and toys, was befriended by an amazing flight crew, and even sat in the cockpit with the pilots during the last leg of our flight into New Jersey! Amidst all the fear and uncertainty that awaited us at our destination, this unforgettable night made us forget about it for a moment in time. To the Corporate Angel Network & Medtronic: There’s no way we could’ve prepared ourselves for the grand experience you’ve given us and the amazing people you brought into our lives that night even if we had known to expect it ahead of time. Thank you from the bottom of our hearts!

On February 7th, Harvey was invited back out to a hangar at the Minneapolis–Saint Paul International Airport to talk about his unforgettable experience. Here is his story told in a Corporate Angel Network produced video:

As Sheila mentioned in the video, Harvey, being unintentionally hilarious, told me (dad) from his seat in the cockpit “I’m good, Dad. You need to go sit down now. We’re about to take off!” I’ll never forget this. He looked like a part of the flight crew sitting in the cockpit, wearing a headset, and actively chatting with the pilots about everything aviation. What a priceless core memory!

Harvey in the pilot’s seat after landing in New Jersey. (December 7th, 2023)

A family picture in the cockpit at our destination. (December 7th, 2023)

Harvey is reunited with his amazing flight crew & “his” private jet! (February 7th, 2024)

This kid knows how to be funny! (February 7th, 2024)

Harvey reminiscing inside “his” jet. (February 7th, 2024)

Coming out of the jet after taking another tour. (February 7th, 2024)

It’s hard to be serious on set with Harvey! (February 7th, 2024)

We were able to take a family vacation last week to Branson, MO for 7 days (our first in a long, long time!). The kids had so much fun playing mini golf, riding an electric golf cart through Top of the Rock Lost Canyon and Nature Trail, bowling at Uncle Buck’s Fish Bowl, getting dressed up for old time photos, visiting the butterfly palace, swimming (not Harvey – he can’t swim until his port is removed), visiting the Titanic museum, riding on the Branson Scenic Railway, and enjoying rides at the Silver Dollar City amusement park. Harvey rode his very first roller coaster! Although not evident in the picture, he absolutely loved the big, scary rides just like his sister, Hattie!

Harvey about to ride the Branson Scenic Railway.

Hattie & Harvey inspecting butterflies.

Hattie & Harvey eating ice cream inside a donut.

Hattie & Harvey at a dinosaur-themed mini golf course.

We found Lightning McQueen & Mater!

Our first ever visit to Buc-ee’s in Springfield, Mo.

Henry loved the penguins at the Kansas City Zoo.

Hattie & Harvey at Fritz’s Railroad Restaurant in Kansas City.

Harvey’s very first roller coaster ride on “Outlaw Run!”

Harvey makes friends everywhere he goes.

Loaded up in the golf cart & ready to explore.

Top of the Rock Lost Canyon and Nature Trail.

Bowling at Uncle Buck’s Fish Bowl.

Hattie & Harv posing for an old time photo.

Hattie has started spring AAA hockey on the Minnesota Lakers team. They played in (and won!) their first tournament game this evening – she even scored 2 goals! She’s now playing full sheet ice for the first time with penalties, regulation size nets, three periods, and offsides. (She’s still learning the offsides part…) 🙂

We’re hoping to not need another update until mid-May when we receive Harvey’s next test results. Thank you so much for your continued love and support! A huge thank you to our family and friends that have graciously made a donation to Harvey’s Hope Kids fundraiser: Kate Friedle & family, Jessica Bossman & family, Sarah Mohr, Cassie & Nick Bremer, grandma & grandpa Grigas, Marissa & Dallas Erickson, Terri & Adam Pecharich, Cindy & Scott Bisbey, grandma & grandpa Goldade, Amber Staloch, and Tom Schrader. We love you and thank you all so much for helping us continue to ensure other kids and their families have something to look forward to throughout their own difficult times. Harvey will continue raising money until June 22nd when we’ll join other families for the Hope K 2024 walkathon (more likely a runathon with our kids!).