Day 957 – October 30, 2024

Happy birthday, Harvey!!

Seven years of you: Each one a gift. Remember the mountains you’ve conquered and always seek the wonders ahead. Inspiration holds its breath to see what you’ll do next. Here’s a look back at your fight, your reclaimed remission, and the joy you’ve brought into our lives this past year:

Last year on October 30th, Harvey’s birthday video was themed “It gets better, I promise.” Cancer had returned, spread to new areas of his body, and he was preparing to begin a brand new cancer treatment in Philadelphia, PA. Last year was devastating and dark. The dawn of each new day brought so much uncertainty and fear. Now, a year later, the color and light have returned to our world and Harvey is now 10 months in remission!

Medical Updates

Medically speaking, we have only good news to share! Harvey’s tests for B cells in his blood at 7, 8, 9, and 10 months have all come back negative. (Good news! This indicates his CAR T cells are still working in his body, actively seeking out and killing cancer cells.) His 9-month checkup at the Children’s Hospital of Philadelphia (CHOP) in September showed no evidence of detectable cancer in his bones, blood, or spinal fluid—another huge milestone achieved! Harvey’s next major checkup and cancer screening in Philadelphia is scheduled for early January, after Christmas. It appears that CAR T therapy has been exactly what Harvey needed to overcome his leukemia, and we are profoundly grateful. We are deeply indebted to his CHOP oncology team for the excellent care that Harvey receives.

Even though we’re thrilled to report that Harvey has no B cells—and therefore no cancer—in his blood, this also means he remains immunocompromised. Did you know that B cells help your body remember how to fight off infections and illness? They’re essential for the “long-term memory” of the immune system. This also means that most vaccines won’t work for Harvey, as his body won’t retain the ability to recognize and combat sickness. Ugh! To support his immune system, Harvey continues to receive monthly IVIg infusions at his local clinic, Children’s Minnesota. He recently had his 12th IVIg infusion two weeks ago, with the next one scheduled for November 8th. The current plan is for him to receive these infusions indefinitely. He’ll likely be able to have them at home in the future, which will save us trips to the clinic. The problem with that is he thoroughly enjoys visiting the outstanding and loving oncology staff at Children’s Minnesota who race with him in the hallways, play jokes on him, come visit with him even when he’s not their patient for the day, and dress up to bring a smile to his face. (Especially Nurse Hanna, Nurse Jon, and Zach!)

Harvey had his legs in casts for two months starting on July 23rd, with cast changes every week which took 2-3 hours. (See the picture from day one, featuring his police-themed blue and red casts.) Chemotherapy took a serious toll on his leg muscles and tendons, causing neuropathy—nerve damage—in his legs, feet, and hands. The casts, along with intensive physical therapy, have helped him regain strength and range of motion in his feet and legs. In September, he graduated from permanent casts and now wears AFOs (ankle-foot orthotics) for 23 hours each day. These are solid plastic leg braces, and while he’s not a big fan of them, he certainly prefers them over the casts! Shout out to his awesome rehab team at Children’s Minnesota! He has made amazing progress and strength gains with all of your devoted support and true dedication to his care.

This entire journey has been a delicate balancing act of hope, cautious optimism, and reality. Cancer in children is a lifelong diagnosis. First, they endure cancer treatments and fight to achieve remission. Then, they navigate a lifetime of late effects caused by those treatments, all while hoping the cancer never returns. Even with all the good news we have to share, our minds are always focused on the next cancer-free milestone. It often feels like a race with no finish line. At least we seem to be sprinting ahead on a favorable path for the long term, and couldn’t ask for more. Our warrior is here with us and turning seven! When he was diagnosed in 2022, it was hard to see beyond age four—but now, 30 months later, what a perspective we have gained.

And that’s it! Only a few paragraphs for medical updates. With Harvey doing so well, we’ve needed fewer updates and more time for living life. What a blessing! Here are some of the things Harv & family have been up to since our last update:

Late June

Harvey raised $750 for Hope Kids thanks to our generous family & friends!! We attended the Hope K 2024 walk-a-thon on June 22nd with our family friends, the Bisbeys, to celebrate. We’re invited to free Hope Kids events bi-weekly and they’ve helped our family (and countless other families) so much throughout both good and challenging times. Thank you so much for your donation Brandy Couch, Jacki Haider, Erikka Guderian & family, 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. (Also, anonymous donor: You know who you are, but we don’t. Thank you, too!)

Harvey’s last day of kindergarten was on June 26th. He loves school and had a hard time saying goodbye to his kindergarten staff and friends. A huge thank you to Mr. Matt, Mr. Jonathan, Ms. Andrea, Ms Asia, and the incredible staff at Spero Academy that made Harvey’s first year in elementary school so fun, memorable, and safe for him!

July

We took a family vacation to the Black Hills of South Dakota for a week. We rented a cabin just outside of Lead, SD, and spent our days exploring the sights and enjoying family time together. Harvey rode the 1880s train, saw Mount Rushmore, hiked around Devils Tower in Wyoming, and explored Spearfish Canyon and Sylvan Lake. He also swam and played with his siblings and cousins, and enjoyed his every moment of the great outdoors.

We also visited Duluth in late July, where we explored hiking trails, visited Black Beach, enjoyed delicious food, and visited the zoo and aquarium. When not on vacation, Harvey spent most of his July playing baseball, attending karate classes, riding his favorite rides at Valleyfair, and playing outside in the water on hot afternoons.

August

After all our traveling in July, we stayed close to home as our twins, Hattie and Henry, returned to school as third graders at Spero Academy on August 12th. Harvey attended a few Minnesota Twins games, celebrated with the University of Minnesota Gophers football team at a Hope Kids event, enjoyed quality time with Mom and Dad during the day while his brother and sister were at school, and cheered for his sister at her many hockey games. Harvey even earned his yellow belt in karate on August 12th!

September

Harvey returned to school as a first grader at Modern Montessori on September 3rd. Hattie definitely misses having Harvey at Spero Academy with her and Henry. Modern Montessori is where he attended pre-K with his wonderful teacher, Ms. Rhonda, when he was first diagnosed in March 2022. Besides a quick open house in the spring, he hadn’t been back since. It was an exciting day for him as he returned to a classroom filled with both new and familiar faces. We are so incredibly grateful for his teachers, Ms. Daria and Ms. Pam, as well as the amazing and supportive staff at Modern Montessori. Nearly two months into the school year and he is absolutely loving it!

September 4th was a difficult day for our family, as Lindsey’s grandma, Eileen Ellingson—our kids’ great-grandma “Gigi”— passed away. Just days before, the kids had a chance to sing “You Are My Sunshine” and share their love & thoughts with her during a FaceTime call while she was in the hospital. She is greatly missed. On September 7th, during her celebration of life service, both Hattie and Harvey bravely stood up, microphone in hand, and shared fond memories of their Gigi. We are incredibly proud of them.

Harvey and Lindsey returned to Philadelphia for Harvey’s 9-month post-CAR T checkup September 15th to 17th. It was a quick trip there and back so Harvey wouldn’t miss too many school days. He absolutely adores school!

Harvey enjoyed many outings in September, including attending a fundraiser for Children’s Minnesota (where he receives care) called “Day of the Dozers,” where he drove heavy machinery like bulldozers and excavators—a yearly tradition. He also joined a weekend family camp at Ironwood Springs, filled with s’mores, archery, zip lining, hayrides, and outdoor fun.

October

This month has flown by with school, therapy appointments, karate classes, fun events (trunk or treating), and now a big birthday!

Thank you!

Thank you so much for checking in on our warrior and celebrating our now seven-year-old and all the good news he’s received. We’re elated that timely medical updates haven’t been needed. If we stay quiet for a while, that’s always good news! We wouldn’t have made it here without your love, care, support, encouragement, and kindness. We love you all and hope you have an amazing Halloween!