FAQs From This Week
1. How is Ben doing?
The short answer is better than expected! What a huge answer to prayer this week. The largest symptom he is experiencing is general fatigue and is just tired and low energy.
2. How are YOU (Michelle) doing?
If you ask me this, you probably have noticed that I ask, “Today?” and then answer honestly. I am taking everything one day at a time. On good days that includes caring for Ben, filling the day with things for me and the boys to do, working out, working on my Bible Study and keeping the household things like groceries, dishes and laundry going. My biggest struggle is that I want two of me. One with Ben all the time and one with Luke and Nate all the time.
As someone that loves big and busy summer plans and loves being highly productive, I’m now in a season of asking for a LOT of help and letting go of that busyness that I truly enjoy. I know God is using this time, it's just a hard spot to be in.
3. How are the boys?
They are still behaving like the 9 and 7 year old boys they are! They understand as much as they can and have been extremely patient with Ben when he is resting and with me when I tell them that I can’t do the thing they want right then. We have a lot of conversations about being on the same team (#teamsettle) and minimizing the natural sibling bickering and arguing with mom because I don’t always wake up with a full tank of patience.
We are trying to keep things as normal as possible for them which includes their daily summer checklist (y’all know I have a typed up list) and their activities of Jiu Jitsu (Nate) and Ninja Warrior (Luke) twice a week. I’ve asked neighbors and local friends that if they are doing something fun one day and want to take them along, please do! We want them to still have a great summer. They are around the rest of the month of June but they have plans to go back to the East Coast to spend time at “Gammy Camp” with my family and all their cousins in July.
4. What’s next?
Ben’s infusion schedule is every other Tuesday, so his next one is scheduled for Tuesday, June 27. One of Ben’s dear friends from high school is flying out to accompany him that day with his treatments so I can have more flexibility with the boys.
It will follow the same cadence of a full day of infusion and come home with the pump attached continuing the 48 hour drip of one of the medications. The nurses anticipated that severity of the symptoms would typically be at their worst on days 3 & 4 (Thursday and Friday) of each cycle.