Day 28 – April 15, 2022

7:00 pm: Cold. That’s the word of the day. It’s cold outside. We have a cold spreading through our home. Impeccable timing! Lindsey and I almost have to laugh (to not cry) when acknowledging our luck: The moment we arrive home with our immunocompromised child with cancer, we have sickness spreading from kid to kid to parent to parent. We are doing absolutely everything in our power to make sure Harvey doesn’t get sick. It’s beyond exhausting. Our masking, distancing (when possible), and hand-washing protocols around the house have made COVID-19 social distancing seem laughably easy. This is our way of life for now. We’ve never backed down from any other challenge facing our family, and we don’t intend to start now!

Despite being distanced from each other, it hasn’t stopped the multi-floor discussions (via yelling) between siblings. It is so extraordinarily fulfilling to see them all share their feelings and love with each other after nearly being separated for a month’s time. Harvey comes half-way up the stairs from the basement, stands on the landing with his mask on, and has conversations with Hattie from her position at the top of the stairs. They laugh, argue, share presents they made for each other, argue, and enjoy each other’s company. Oh, and they argue, too! This truly makes our abnormal situation feel somewhat normal again.

Chef Lindsey made one of our family favorite meals tonight: A creamy chicken bake over farfalle (bow-tie) noodles. Harvey is on his 3rd bowl right now. Granted, we are giving him much smaller portions. Each bowl contains noticeably less than usual counts of noodles, as Harvey pointed out. Serving him numerous bowls of pasta sparked memories of my college days spent as an Olive Garden waiter during the “never-ending pasta bowl” promotion! Our family friends, Chad & Krista Kemp, will understand. (I met them both while working at Olive Garden in Fargo, N.D. We recently discovered they live just mere blocks away from us!) ❤️

Earlier today, Harvey’s scheduled procedure went very well. The staff were outstanding, making him feel comfortable, informed, and even (somewhat) in control of the situation. He had a spinal tap, bone marrow samples taken, and chemotherapy administered intrathecally. He was an absolute champ and I even witnessed him making his first care-team-member friend! (Thanks to our nurse, Jon – You saved the day!) We’ll have many more of these clinic appointments in the future, and today hopefully set the stage for a sustainable routine. I met with Dr. Miller, our primary oncologist, and our outpatient nurse, Sarah. We discussed possible future treatment options, keeping in mind that the results of today’s bone marrow samples are paramount in determining our next course of action. We shared the same sentiment in hoping that his tests come back MRD negative. But the odds are stacked against us at the moment. We know it. Test results and treatment planning will all become available next week. I’ll have plenty more to say about this soon.

I end tonight with the words “thank you!” These words don’t feel like they’re doing any justice to portray our true gratitude and appreciation for all the love and support we’ve received. As we recover from our achy, tiring colds and settle into a more sustainable routine, we will be starting to reach out to everyone who has reached out to us. It invokes tears knowing the collective amount of time, effort, resources, and love that has come at us from all directions from you. We love you all so very much and we honestly couldn’t do this with you! We have moments in time when the world seems to be crashing down around us. Even today, quite honestly. All we can do is helplessly let the existential crises exist and pass us by. But you’ve all given us hope that everything might just actually be okay. Thank you!

8:45 am: Harvey has just been given anesthesia and is now asleep in his procedure room. His weak body ready to be poked and prodded to collect the samples needed, then flooded with chemotherapy yet again.

Today his bone marrow samples will define the next stages of his treatment. It will likely take a week for the results to come back. And It’s going be to a long week of waiting for us. These very results will likely be a vision into his prognosis. I’m utterly terrified and unsurprisingly sad sitting here in the family waiting area of the clinic. More updates to come today.