Day 132 – July 28, 2022

1:30 pm: We took a celebratory hiatus from blog updates this past week. July 19th will forever be a cherished family holiday. “Harvey is in remission!” These words are such an incredible gift. Thank you so much for your love and support throughout the highs and lows over the past 132 days! We have so many thank-yous to send out – you’ve made such an impact on us, on Harvey, during some of our darkest days. Harvey fully understands that he’s in remission, meaning that even the most sensitive tests for cancer cells aren’t able to detect cancer in his bone marrow. However, this doesn’t mean that he is cancer-free: Any remaining, yet undetected, cancerous cells can lead to relapse. Hence the years of chemotherapy ahead of him. Years that will undoubtedly bring new challenges, but will be full of hope knowing that each treatment is working. These sacred days of remission are everything.

Harvey was admitted to the hospital this morning for scheduled chemotherapy (high dose methotrexate and vincristine) and will remain here the next 2-3 days for monitoring while it’s flushed into and out of his body. During each hospital stay, he really only dreads the initial port access (insertion of a needle through his skin into his port), but otherwise enjoys his time here. He’s greeted by familiar faces, brought a variety of new and favorite toys, has kitchen staff on stand-by, and can’t wait to play bingo! We have so much to be thankful for. Having Harvey not dread the hospital is a good case in point! Speaking of the kitchen staff, his lunch of chicken strips, sausage patties, yogurt, fruit, and apple juice just arrived. What a combo!

The past week has been both amazing and challenging. Harvey had an emergency room visit late Saturday night after rounds of vomiting and a fever over 102º F. His labs revealed his body was likely fighting off something viral. He was given an antibiotic and sent home where he made a full recovery. He has otherwise remained at home playing, taking daily oral chemotherapy pills, and doing well. Hattie and Henry are also both healthy again, too. Hattie had the same symptoms as Harvey with vomiting and fever last week, and Henry’s rashes from fifth disease have (finally) disappeared. We’re back to (our new) normal. Unfortunately, this includes the struggles known all too well by families with autistic children. Henry has been having aggressive streaks with his sister and it’s been, to stay the least, extremely challenging. I’m sharing a video of an incident that occurred over 15 seconds to give an idea of how it manifests unexpectedly and without warning. We take it a day at a time. Sometimes an hour at a time. Quite honestly, navigating the needs of an autistic child felt somewhat manageable only before Harvey’s cancer diagnosis. Everyone, every family, has their own hard. This is ours.

Challenges aside, the color is returning to our world. Our boy is in remission. Remission! Saying it for the thousandth time is just as sweet as the first time. We’re so grateful. I’m off to the playroom with our cancer fighter. We anticipate an uneventful stay in the hospital the next few days and we’ll post updates on his progress/discharge. Thank you so much for checking in & celebrating Harvey’s amazing milestone with us! I’ll end with a July 19th facebook post from Lindsey after we learned that Harvey was in remission:

Just a mom and her MRD – (Minimal Residual Disease negative) boy.

So many happy and grateful tears have flowed out of my eyes, as I honestly deep down didn’t know if this day would ever come with Harvey’s diagnosis of PH like B-Cell acute lymphoblastic leukemia. Dr. Miller called promptly at 10:15 this morning to let us know that the Seattle, WA lab had finished processing Harvey’s bone marrow biopsy from last Thursday and that he was MRD negative. I could hear the emotion in Dr. Miller’s voice this morning too, he truly cares about Harvey.

Harvey has been through so much since this all began on March 18th, much more than any four year old should ever have to endure. He still has a long journey ahead with a couple more years of treatment, but he has proven he is such a brave and strong warrior. We also know that we couldn’t have been on this emotional journey without the outpouring of love and support we have received from our family, friends, colleagues and Harvey’s medical team at Children’s Minnesota.

Thank you all from the bottom of our hearts.