9:50 pm: We have a new port-a-cath placed. He’s such a champ. So big and brave even though we could tell how nervous he was during the replacement. Bedtime for us. Goodnight!
8:50 pm: A bit of an eventful evening. Harvey’s port-a-cath tubing developed a leak in the line, and we’re in the process of getting a new one placed. (This was supposed to occur in the O.R. tomorrow.) Not a huge deal, but we were hoping to do this while he was sedated. In the future after we’re discharged from the hospital, this is something that we’ll need to do weekly in a clinic – so this is our first practice run.
8:00 pm: We’ve had a really great day! Harvey has a bit more energy, and he needed it as a mountain of new toys, balloons, and necessities arrived today! Our Mayo Clinic family, consisting of current and past co-workers, teamed up to deliver an amazing care package for Harvey and our family. It was hand delivered (thanks, John!) in a rolling dinosaur suitcase: Each pocket/compartment containing a different, extremely thoughtful surprise for us! We are so grateful for the amazing friends we work with: This was above and beyond what we could’ve asked for. Thank you so very, very much for the time, effort, care, and resources you put into this from planning to delivery. Harvey loves it!! I’ll be sure to share the videos I captured of him tearing into all his new toys in an upcoming update. ❤️
Harvey received another round of platelets today in preparation for his scheduled trip to the O.R. tomorrow where he’ll receive another dose of chemotherapy. We continue to manage side effects of the treatment including moodiness from the steroids (telling nurses “Hey you! Get out!”), vomiting, and constipation. As his energy has declined, he has started to complain of some sore joints/aches during our walks, which is expected.
11:10 am: Harvey was up at 4:30 am lounging in bed and watching cat videos on YouTube. He’s recently learned how to use the voice assistant feature on his iPad. He’ll say things like “CSX trains” or “funny cat videos,” and I’ll ask him, “What did you say?” thinking he’s trying to start a conversation. Almost immediately, he throws on his angry eyebrows and replies “I’m not talking to you, Dad! I’m talking to Siri!”
I’ve found a picture that demonstrates those angry eyebrows of his. 😉
No significant updates today after talking with nurse practitioner Julie. His labs continue to trend favorably in response to his first treatments. Harvey is scheduled for another O.R. procedure tomorrow morning (Friday). He’ll be getting a spinal tap, his next dose of chemotherapy, potentially more platelets, and a few small maintenance items. We’ve been going on frequent walks and talking about anything and everything that’s on his mind. Today, it’s food! Here’s a few excerpts of this morning’s 6:30 am stroll:
Aaaaw! Thanks for the video! It’s so good to hear his voice!
I have a joke for you.
Anita visit Harvey G.!
Today, we learned that Neptune is named after the Roman god of the Sea because if it’s deep blue color. It’s blue because of a gas called methane. Mars has the highest mountain in the solar system, Saturn is the flattest, Venus is the hottest, what do you think makes Neptune special? I will give you a hint: It’s even colder than Uranus. It’s the coldest planet!! It also has the fastest winds!!
I hope you got to have breakfast then Mac & cheese for second breakfast, followed by lunch! You are a growing boy and will probably having a growth spurt as you near your half-birthday.
I miss you to the moon and back!
Love the video and picture of Harvey’s angry eyebrows! I’m so glad he like the new suitcase and everything in it:) Continuing to pray for you all.
I’m a colleague of your Mom’s from Mayo. I have been sending positive thoughts your way. I wanted to thank you for sharing your morning walk video! I loved hearing your joke & wonderful discussion on your walk together! I am continuing to hold you & your family in my daily thoughts and prayers 🙏💞!