March 18th, 2022 started like any normal day for Harvey and ended with him undergoing emergency surgery. Harvey has been diagnosed with b-cell acute lymphoblastic leukemia. (UPDATE: He is now diagnosed with Philadelphia-like acute lymphoblastic leukemia.) The symptoms that prompted our visit to the clinic were a fever and rash, but we quickly learned he was deteriorating internally with 95% of the cells in his blood becoming cancerous. One day at a time, we’re moving forward. This post marks the very beginning of his journey toward recovery. Toward the rest of his life. Toward better days.
Meet the Goldade Kids
Hattie Bea & Henry Beau Goldade are our 6 year old twins, born December 23rd, 2015. If you ask Hattie, the most important fact to remember is that she was “born first by 3 minutes and is the oldest.” Hattie’s name means “home ruler,” which isn’t a coincidence. She is our outgoing, active, astute, funny, independent, playful, caring, social daughter who is a critical thinker and has been reading since 3 years old. Hattie loves to be involved and helpful in any capacity and enjoys cleaning, helping us prepare meals, and helping care for her younger brothers. Her love is also in swimming, snowboarding, learning to skateboard, and visiting every playground she can find. The origins of her family nickname, “Bea Ball,” trace back to her former roundness as our beautiful baby girl. “She’s round like a ball, and her middle name is Bea. She’s our Bea Ball.” In the Fall of 2018, Hattie was diagnosed with autism, specifically focused on her need for social/emotional regulation. She attended full-time ABA (Applied Behavior Analysis) therapy at Partners In Excellence (referred to as PIE) in Winona, MN from November 2018 – July 2021. She now attends kindergarten at Spero Academy charter school in Minneapolis. They specialize in individualized education for children with disabilities.
Henry’s name also means “home ruler.” Unfortunately for him, it’s not our home that he rules (thanks, Hattie!). Henry has a love for being outside, Baby Einstein books and videos, trampolines, swimming, playing with his siblings, and any carb-rich food. This guy would eat chips for every meal, every day if we let him. He is our loving, active, care-free, playful, explorative son who is sometimes the strong, yet silent type, and the life of the party other times. We started to notice regressions in his eating, social activities, and communication in the spring of 2017. Henry was then diagnosed with non-verbal autism in January 2018. He attended full-time ABA (Applied Behavior Analysis) therapy at Partners In Excellence (PIE) in Winona, MN from May 2018 – July 2021. He received speech therapy, occupational therapy, physical therapy, and a bit of feeding therapy. This boy has worked so hard and has made such amazing progress with our PIE family. Now he is in kindergarten, attending Spero Academy with his sister, Hattie.
Harvey Boone is our miracle baby, born October 30th, 2017. His name means “battle warrior” and is surprisingly relevant when he’s met with the strong personality of his big sister, Hattie. Harvey’s nickname is “Boone Bae” (“Boone” is his middle name and “Bae” as in what the cool kids say for the word “baby” these days. Or at least they used to…). Harvey is our polite, loving, compassionate, gentle, genuine, funny, happy son with a smile on his face and sparkle in his blue eyes. Harvey doesn’t get angry often, but when he does, he has a set of the most memorable angry eyebrows you’ll ever see! He loves vacations & traveling (Wisconsin Dells/Disney World/Ocean beaches), model trains, cars, heavy machinery, Blippi, dancing, listening to music, and dancing while listening to music. Harvey attends pre-kindergarten at Modern Montessori Charter School in Champin, MN and has learned so much from his friends & amazing teachers (Ms. Rhonda & Ms. Melissa) over the past 6 months. There is actually another boy named Harvey in his class, so he’s better known as “Harvey G.” at school.
Harvey’s Journey Begins
Friday, March 18th started off fairly typical: Organized chaos (a.k.a. the weekday morning routine). It’s simply the period of time each morning my wife, Lindsey, and I invest in convincing the hungry to eat, hoping we have a chance of leaving the house on time. Harvey had been febrile the evening before and we invited him into our bed for the night to cuddle and monitor him. This particular morning, he awoke with a fever (as we expected would happen) and had a quick vomiting spell. Lindsey and I agreed that it was time to bring him to the clinic. He had tested positive for COVID-19 3 weeks prior with his only symptom being a brief fever, but the possibility of him now having MIS-C was on our minds. We modified our plans for the day. Lindsey would take Harvey to a walk-in pediatric clinic, and I would drive the twins to their speech and occupational therapy sessions. We were ready to go for the day. …after the kids finally finished eating!
Today’s schedule change meant that I would deliver Hattie and Henry to therapy sessions, work remotely from my van in the parking lot, and also attend virtual parent-teacher conferences for the twins in-between meetings for work. Challenge accepted!
March 18th, 2022: The Morning
9:00 am: The kids are dropped off. Van parked. Laptop open and online. Coffee within reach. Work e-mails tackled. My plan for the day communicated with my team. A half hour later, I take pause from work to catch up with our twins’ teachers.
9:30 am: Time to join Henry’s online conference via Zoom. We talk about the progress Henry has made over the past months. This kid is absolutely amazing. We chat about new goals for him and I now realize it’s 10:08 and I’m late for Hattie’s conference! (Thank you, Ms. Larissa, Mr. Matt, & the entire team at Spero Academy for everything you do!!)
10:09 am: I quickly switch over to Hattie’s Zoom conference 9 minutes late and begin apologizing for my unintended neglect. As we begin discussing everything Hattie, I notice a nearly 20 minute old text message notification on my phone. It’s from Lindsey: “Can you call me when done?” “Yes” I reply, shifting my focus back to Hattie’s accomplishments. She’s my social, active, loving, caring, way-above-average-reading-skills kindergartner. My focus is again stolen by Lindsey’s incoming text: “I need to talk to you. We are driving to the children’s hospital now.” My mind attempts to prioritize in real time as I reply back “In hats meeting – need me to drop (out?)”. I commit to giving my attention back to the topic of Hattie even though I’ve decided that Harvey has MIS-C and he will likely be heading into in-patient hospital care. “No” Lindsey replies. Feeling relieved, I reply back a simple “K.” It’s now 10:11. Focus. On. Hattie.
10:12 am: Lindsey replies. “Just know I may not be able to talk to you once we get to the ER. His white blood cell count was through the roof the nurse practitioner has never seen one that high he has lymph nodes that are swollen and on his groin. We are going right now to meet a hematologist and oncologist they are thinking it is more than likely leukemia.” I am shook. I mute myself, break down, then stop. Breathe. Of course: It’s not leukemia. I reassure myself it’s MIS-C. He didn’t have an official diagnosis after all. I need to collect my thoughts, prioritize them, and turn them into actions.
11:00 am: I muster the strength to hide my emotions and wrap up Hattie’s conference. Then craft an e-mail to my team to let them know I’m taking PTO for the day, and pick up Hattie & Henry from therapy. The 3 of us are back in the van and on our way home. I quickly FaceTime Lindsey for an update. With kids listening intently nearby, we carefully select the right words to be comforting for kids, but emphasize the seriousness of the situation for the adults. For the next 25 minutes while driving, I come to the realization that no matter what the diagnosis is, Harvey is more sick than we thought.
March 18th, 2022: The Afternoon
Harvey was rushed to the Emergency Room at Children’s Minnesota Hospital in Minneapolis, MN at 11:00 am. He underwent testing and blood transfusions which led to his diagnosis of b-cell acute lymphoblastic leukemia. He had emergency surgery beginning at 5:15 pm to get a spinal tap, blood platelets, a port-a-cath placed just below his collar bone above his heart, and a bone marrow biopsy. He then moved into hospital in-patient care at 7:00 pm and remains there at the time of this publication.