Day 816 – June 11, 2024

This afternoon, we received Harvey’s cancer tests results from last week’s bone marrow biopsy, spinal tap, and labs in Philadelphia: Our boy is officially 6 months cancer-free!! What a momentous day and a huge milestone! There were no detectable cancer cells in his bone marrow, spinal fluid, nor blood. There continues to be no B cells in his blood (which indicates that the T cells he received in December continue working to eradicate his cancer). Generally, younger cancer patients that receive CAR T therapy and stay cancer-free for 6 months afterward have better outcomes with this treatment. And Harvey has just achieved that! He’s been through so much these past 2 years, 2 months, and 23 days since his diagnosis. We’ve watched him fight so hard during some of the darkest days we’ve ever known, desperately awaiting better days – like today. We are elated to share today’s news with him and with you. What a blessing!

So what comes next? Hopeful and watchful waiting. We hope Harvey is able to get to the 1 year milestone with no cancer cells and no B cells in his body. He will continue having monthly appointments here at his home clinic, Children’s Minnesota, to check his blood and to receive IVIg infusions to keep his immune system working. He’ll need IVIg infusions as long as he has no B cells (possibly his entire life if his B cells never return). This also means we always need to be aware of his physical surroundings to ensure he is in healthy environments. His immune system will never be at full capacity to fight off illnesses and infections even with monthly doses of IVIg.

Harv has 2 more scheduled visits to Philadelphia for post-CAR T bone marrow biopsy and spinal tap procedures in late August (9 months post-CAR T) and late November (1 year post-CAR T). Sometime in the weeks or months to come, he’ll likely even get the port in his chest taken out via surgery. This will bring him back to a (nearly) normal life again! Currently, with his port in, he is not able to swim in lakes or oceans. And every time he gets a fever, we have to report directly to the ER to get blood cultures drawn and antibiotics started. His port has helped tremendously, but it’s also a risk for life-threatening blood infections and it won’t be missed! Before the port can come out, we have to ensure that he is comfortable getting his blood drawn through a needle in his arm for monthly lab draws and is able to tolerate getting his IVIg subcutaneously. There are a lot of steps to ensure success before the port gets removed, but the time is coming in the near future.

Even with Harvey solidly in remission, he continues dealing with the aftermath of this war on leukemia. Chemotherapy has damaged the muscles in his legs, causing his toes to drop and drag. He often trips while walking/running and it frustrates him to no end! His physical therapist has recommended that he get casts on his legs to help improve range of motion and reduce tightness. He’ll likely get serial casting done in late July or early August and will wear the casts for several weeks to a few months, depending on how his legs progress. His casts will be changed out weekly which means more hours at the clinic each week. We dread knowing he’s going to hate wearing them, but he absolutely needs it. After the serial casting, he will resume his weekly physical therapy sessions to relearn his gait and get a new pair of AFOs (Ankle Foot Orthotics) to help him maintain what the serial casting corrected. Currently, he is on a break from physical therapy. He has attended one hour sessions weekly since his diagnosis. He is definitely sad about this break (he loves his entire rehab team at Children’s!).

A model of the cast Harvey will wear on both legs.

Whew! That was a long medical update of both good news and challenges that lie ahead. But what a gift it’s been to watch our boy get busy living his life again! Since our last update in mid-April, Harvey saw his second aurora ever (he loves staying up late waiting for them!), joined a baseball skills camp and played his first few games, attended the University of Minnesota Gopher Mini-Football Camp through Hope Kids, (finally) met his new cousin, Riley, during a trip to visit his cousins (Leo and Mylah) in Madison, WI, vacationed in Wisconsin Dells for the first time since December 2021 (he rode the BIG water slides for the first time!), visited Sesame Place while in Philadelphia for his procedures, and started taking a self defense/karate class with his sister, Hattie. He has also thoroughly enjoyed rejoining his kindergarten class, missing school only for clinic appointments and trips to Philadelphia. His last day of school is quickly approaching – June 26th.

We’ve had so many core memories these past few months, often when we least expected them. Case in point: While watching Harvey jump excitedly back into a wave pool at Wisconsin Dells, I (dad) turned away in tears. There was a time not so long ago when I didn’t know if I’d ever see Harvey swim again. And there he was – back in the water! In that moment, he appeared as though he’d never had cancer at all. As I watched him jump through oncoming waves, the small scars of past procedures on his lower back brought me back to reality. We will never forget the past, but we’re indescribably grateful for the present. He’s here with us, and we are so thankful for all the amazing people that made it so – his medical team, friends, family, and complete strangers. We will never stop saying “thank you” to you!

Thank you to everyone who has donated to Harvey’s Hope Kids fundraiser: 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 will continue raising money until June 22nd when we’ll join other families for the Hope K 2024 walkathon. All money donated goes directly to the same fund that gave Harvey and many other kids the chance to do amazing things at no cost to us over the past 2 years (trampoline parks, fall festivals, Minnesota Twins baseball games, Minnesota Wild hockey games, Mall of America aquarium visits, and so much more!).

And finally – thank you for your never-ending love and support. We are celebrating this huge milestone together with you!

6 Comments

  1. The BEST news! Congratulations on the 6 month milestone, Harvey! I’m SO happy for you all! Tell your Mom and Dad they do such a great job on your journal updates – you guys should write a book for other families going through this journey! A story of hope, strength and perseverance 🙂

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  2. Such GREAT news!!!!!❤ God prayers have been answered. Keep up the work little warrior, will continue sending prayers and hugs your way. God Bless you all!!!❤

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  3. We love you all and are so happy to be celebrating this fantastic news with family and friends! Go Harvey!

    Grandma and Grandpa Goldade

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