9:45 pm: Technology can be amazing. (The lack of technology in certain aspects of our lives can also be amazing!) Each of our kids have iPads. They are configured with settings to limit excessive use of entertainment apps, promote learning and exploration (checking the weather, researching places on the globe, taking pictures, etc.), and to use as a sound machine at night. This weekend was the first time I’ve enabled any communication capabilities on their iPads: They can now FaceTime with trusted contacts. And it’s brought me so much joy to receive calls from my daughter, Hattie! Turns out it’s an amazing coping mechanism for her and, so far, she’s not abusing her new power. When she’s lonely, worried, excited to share a thought, proud of an accomplishment – she opens up FaceTime and calls mom and dad. With the ability to work remotely and chat with my daughter at any time, I’m currently loving technology.
Harvey had (and is currently having) a lively evening. His true personality is coming back after receiving his last steroids on Saturday. He’s even started smiling and talking to a few of his care team members! A big accomplishment for him this evening was expanding his palate with a spaghetti supper. Not hotdogs. Not chicken strips. Spaghetti. Progress!! He continued to have lowered glucose levels today and we’re hoping he doesn’t dip back into the 40s again overnight. Some strategic evening snacks of applesauce and juice hopefully will help. As you may already know, we’ve struggled to get Harvey to willingly go for walks with his joint pain and lack of energy. …until tonight! We discovered that he LOVES opening the main entrance doors to our floor by waving his hand in front of the sensor. It’s absolute magic to him! (Thanks, technology!) He excitedly told nursing staff, other parents, and anyone who would listen to follow him to see something magical. The doors opened with a wave of his powerful hand.
Conversely, Harvey absolutely HATES taking showers in the hospital. His port-a-cath needs to be covered with a plastic “window,” and he loathes the feel, sound, and stickiness of it on his skin. After some bribing, he almost willingly stepped into the shower, was scrubbed clean, then dressed in fresh pajamas, and walked down the hall one last time to open the magical door.
We’ve made it 17 days. I know we have months and years of this new life ahead of us. But for now, we’ve made it 17 days. This is a huge accomplishment when thinking back to March 18th when our world came crashing down. I am so fortunate to have such an amazing wife by my side as we navigate this new, unknown territory together. We’ve been through infertility, IVF, miscarriages, autism diagnoses, and now a cancer diagnosis with our children. We are not the same people that we were weeks ago, forget years ago. Life-altering impacts to your children changes you. Helplessness is redefined. Perception of the world changes. Everything “known” is questioned. This all has taken a toll on both of us, our lives, our marriage. I can say, without a doubt, that I don’t even recognize the person I was previously, but I have something in common with him. We both are so, so incredibly grateful for and in love with the amazing wife and mother that’s been there for us through it all. We are going to get through this together. Harvey is going to get through this and experience all the love and strength that we have for him and our family, united. I love you, Lindsey. We’ve made it 17 days.
3:20 pm: A quick afternoon update between work meetings – Harvey is napping and has had much less energy today so far. His blood sugar remains low in the 60s even after eating numerous snacks. Nurse practitioner, Julie, mentioned that we want to try cutting back on his water intake and replacing it with juice/Powerade for today. He’s had a lot of liquid via IV and orally, and he may be a bit too hydrated. Lindsey is hopefully getting a nap on our makeshift bed right next to Harvey’s hospital bed, too.
8:55 am: We begin our day with two boxes of apple juice, M&Ms, and strawberry yogurt for Harvey. His blood sugar was low again this morning (49). His ANC is slightly higher today at 0.075 (up from 0 yesterday). He still has no immune system, but hopefully this indicates that we’ll be trending up in the days and weeks to come. We await our daily visit with the nurse practitioner and will share updates as they’re available. He is currently eating his “fun breakfast,” which consists of a hotdog and a cheeseburger. One of the Bs in BBQ must mean breakfast?? Lindsey returned to the hospital late last night after spending some much needed time at home with our twins. We all had as restful of a night as allowed in a hospital setting.
We ordered Harvey his first official hat as he continues to shed his hair. He’s excited for it to arrive so he can wear it – it’ll likely be just as popular as his orange and blue Blippi hat. Harvey also loves and has been carrying around a little angel with him that has the words “I will never leave you” inscribed. It arrived here at the hospital with Lindsey last night from a card that was waiting for us at home. This angel came from a wonderful nurse and mentor, Rhonda, who took Lindsey under her wings when she first started her position as a RN at Mayo Clinic on Station 5-4. She taught Lindsey the care, compassion, hard work, dedication, and teamwork it takes to care for patients. They worked many evening shifts together through the years and Rhonda is definitely a dear gem. The angel was part of a much larger care package that was so amazingly thoughtful, and quite honestly overwhelming, and had been waiting for us at our home for the past week. Lindsey also has so many selfless former co-workers from Station 5-4, our family friends. We are so incredibly humbled by their generosity and concern for us. We are so far behind on thank-yous: We can’t wait to get the time to reach out and personally share how every one of you are making an impact on us in these uncertain times. Truly, thank you all so very much.