Q & A

September 6, 2024 - 

Ben and I both want to thank you all for all the kind words we have received from so many of you over the last few weeks. It is always really hard to share bad news and we are so grateful that it was met with encouragement, prayers and generosity from all of you. I’ve had a lot of the same questions from people when I see them, so I’m hopeful to answer some of those here today. 

How is Ben? How was his infusion this week with the new drugs? 

This is always the hardest to answer because it changes not only day-to-day but some days hour-to-hour. The beginning of the week was really rough as he was experiencing a lot of troubling symptoms including, low grade fevers, pain in his side, and difficulty breathing. He spent a lot of time resting or trying to sleep. We were in pain management for a few days and those are always hard.

His infusion was Wednesday this week (due to Labor Day) and he started feeling better as soon as he got the pre-meds for his infusion. The infusion itself was uneventful (thankful for no reaction!) and the last two days have been relatively normal in terms of appetite and energy. We were told that the side effects of these drugs could potentially be more severe so we are now in a wait and see situation, taking every hour at a time. 

How are the kids? 

Thankfully they are kids and there is a level of understanding that they just don’t have. We did talk to the boys about the worsening of his condition but when they still see Dad acting like Dad, it's hard to understand the severity of what's happening. When Dad needs more rest, they are really good at respecting that and giving him time to do that. When Dad has good energy, he is the first one to take the boys out to throw the football or ride bikes. We are so grateful for the teachers and staff at their school that know to keep an extra eye out for them and love on them a little more when things are harder at home. 

Is Ben still working? 

The short answer is yes. Since his diagnosis, work has been so supportive and accommodating while he has been getting treatment and we have felt very blessed to have that support throughout the process.

Due to the increase of treatment this fall, work has continued to encourage Ben to focus on that and let them fill in some of the gaps that may arise during this time. 

How are YOU? 

Also a very hard question to answer, so if you were to ask me right now, I’d say, “Today? I’m good today.” I try to keep doing the things that make me feel like myself and fill my cup. Some days that's making sure I get to the gym, other days I might go for a long walk outside with an audio book. Some days it looks like retreating and putting my phone on DND and other days it looks like saying yes to the invite with friends because I know I'll get to laugh and feel “normal”. I feel extremely grateful for the people that carry the burden with me on the hard days and those that I get to laugh with on good days. 

What do y’all need? 

Y’all have already filled in so many gaps ❤ ️ We have meals delivered, help with the kids when needed, gift cards for dinners and so many of you have been extremely generous financially by contributing to our Venmo fund. If you would like to contribute to that fund, those funds will be used to help pay for family activities we want to do to make memories together. We can not express our gratitude enough as these acts of service are being the hands and feet of Jesus to our family. As always we are always grateful for your prayers. They matter more than you can imagine. I pray for YOU that as you contend on behalf of our family that YOU feel the presence of Jesus in a new in profound way today.