We’re home!! After 6 weeks in Philadelphia, our flight into Minneapolis touched down at 12:46pm on Friday, January 19th and we arrived in our driveway an hour later. Hattie wrapped her arms around Harvey at the front door and said “Harvey, my baby brother! I missed you!!” We are so happy to be together as a family again! The kids spent the weekend playing together and making up for their time apart. Getting back to normal feels amazing and we’ll never take it for granted again. On Monday, Harvey was even able to return to school!
Let’s start with something humorously memorable: Harvey lost both his top front teeth while in Philly. It’s hard to take him seriously with his gummy, toothless smile! The first tooth came out the morning of January 15th. He walked proudly out of his bedroom holding his former baby tooth in hand. The second tooth “fell out” during a procedure on January 17th. Thankfully, the tooth fairy found her way into the operating room to rectify the situation before he woke up from his procedure.
On January 17th, Harvey received his first post-CAR T bone marrow biopsy, spinal tap, and blood draw. He’s now received 7 bone marrow biopsies and 29 spinal taps since his diagnosis on March 18th, 2022. On January 18th, we received the first results from Harvey’s blood draw: He had 0 b cells in his blood! This is our very first indication that his CAR T therapy is working and is eliminating all the b cells in his body. Then, on January 19th, we received the first results from Harvey’s bone marrow/spinal fluid test: There was no detectable cancer in his bone marrow nor spinal fluid! This is our very first indication that CAR T therapy is killing his cancer. It’s important to note that these results are from the less sensitive/precise test and we await the results of the more sensitive/thorough clonoSEQ test in late January or early February. These first two test results brought great news, and we anxiously await the third to validate the first two.
Neurological side effects from CAR T therapy remain present and noticeable. Harvey came home from school yesterday with a completed math worksheet. He wrote his name at the top. “HAREVY.” He never had a problem spelling his name correctly in the past. He also continues to have difficulty recalling the names of people in pictures at times. We desperately hope this resolves in the weeks to come. Otherwise, the only other side effect from CAR T therapy is the absence of B cells in his blood. But this is both an expected side effect and the goal of CAR T cancer treatment.
Since Harvey has no B cells in his blood, he will now receive IVIG every month indefinitely to keep his immune system functioning. He received IVIG on January 17th and will need another infusion sometime in mid-February at his home clinic in Minneapolis. While we wish he didn’t need IVIG going forward, it’s much better than needing more chemotherapy! Harv is currently not taking any chemo and, if CAR T is successful, he won’t ever need it again. What a blessing!!
Unbeknownst to us, while Harvey was hospitalized in December, there was a measles outbreak occurring in Philadelphia. A child with measles received treatment at the Children’s Hospital of Philadelphia and it spread to 3 other people in the building. This was all happening literally outside our hospital door! Thankfully, we didn’t have any direct exposure. It’s becoming a distant memory now, but it was certainly a stressful experience at the time.
All that said, Harvey is feeling well and is happy to be home! We continue to watch and wait – the only thing left to do after CAR T therapy. The coming weeks and months will no doubt bring anxiety, but the joy of watching our boy live his life without chemotherapy should help keep it muted.
Hattie, Harvey’s sister, and her hockey team won all five of their tournament games on January 13th and 14th, earning them the title of tournament champions! This cancer journey has taken so much from Harvey and our family. Even though we couldn’t all be there to witness her big win, we were able to watch remotely and cheer her on. We are so proud of all the hard work you’ve put in over the past year and a half, Hat! It’s hard to believe back then you could hardly stand up on skates. Look how far you’ve come!!
We’re only just beginning to catch up on the life that we put on pause back in early December 2023. Harvey traveled home with all the cards you sent him in Philly (see the picture of the additional mail he received!) and they are proudly on display. Thank you all so much!! Our family. Our friends. Our work families. Our medical care teams. We just can’t convey to you with any combination of words how grateful we are for you and for everything you’ve done for us. You’ve made this difficult situation survivable and even made us forget about it at times. As much as we wish to not be on this journey, we are so incredibly thankful for the perspective it’s provided us and the amazing people that have propped us up when we were at our lowest. We are so grateful for you, and we need to at least attempt to let you know the impact you’ve made on us.
We want, and hope, for this update to serve as the turning point for Harvey on this journey. We’re assuming we’ve found remission again. We want it to be forever this time. We await more testing and test results going forward. But for now, we’re happy, we’re home, and we’re happy to be home! We love you all and are so incredibly grateful. Oh, and to Hanna & Myndy at Children’s Minnesota clinic: Harvey wanted me to let you know he’s home and he hopes you have practiced up for more hallway races. He expects more of a challenge this time. <pointing to Harvey> He said it, not us! 🙂