I can’t believe we are already at Day -2. This morning Bo had his last dose of chemo…EVER. Hearing the beep of his IV pump tell us that the infusion was complete was one of the sweetest sounds I’ve heard in a long time (and those beeps can be annoying, as I’m sure some of you know). It will take me a while to fully process everything that has happened this year, but being done with chemo feels like a pretty big milestone– one deserving of some celebration!
Today at rounds Bo’s care team mentioned that they felt like today was the day for him to get his feeding tube. It caught me off guard and felt like a punch in the gut because he’s been doing so well. It also feels like the next step deeper into a hard process and makes everything feel so much more real. I understood their reasoning though–the sores are coming in the next day or two, and now is the time. In the big picture, the tube is going to take a lot of pressure off of us to make sure he’s meeting his nutritional goals, and they have even said that kids who are able to use their guts through this process tend to do a little better. When I heard that, I said, “Say no more!” A dear friend, Holly, also reminded me that our goal is to leave this hospital with a healthy boy–and this is part of getting him there.
Bo received his feeding tube this afternoon and was the bravest boy. He’s definitely not enjoying the new accessory right now as it takes some getting used to, but overall he’s handling it so well. I have shed some tears over this today, but mainly because I’m just so stinkin proud of my boy. He’s so incredibly brave and trusting and strong. I want to be more like him!
Today was also a big day for Naomi as it was her first day of preschool! We have been unsure if we’d be able to be the ones to take her for her first day since everything depended on how stable Bo would be. Since he’s doing so well, both Lance and I were able to take her while my parents stayed with Bo. She is SO ready for this next stage that it was a pure delight to send her off. We prayed with her before she walked into her classroom and thanked God for what an incredibly joyful, resilient, kind, and brave girl He has made her to be. We are so proud to call her ours.
I was doing some math today as I was thinking about our donor, and I realized with the time difference in Europe (about 9ish hours ahead) and the flight time to where we are (10-13 hours), it is very likely that our donor could be donating his marrow in the next 12-18 hours. I hardly know what to say other than to ask that you would pray for him tonight and tomorrow.
If I’m honest, I have had a lot of fear this week surrounding our donor. He is still able to change his mind and that terrifies me. I have been so encouraged by the friends I’ve been able to confess this to and would love prayers for our donor and for our hearts as well during these next few days.
When I was sharing my fears with Lance today, he asked me, “Would you change your mind?” The answer was easy– NO! And not because of all we have experienced this year, although that does play a part. How can it not? But because it saves a life, and that is no small thing. I hope that Bo’s journey has encouraged many of you who are eligible to join the registry. I took for granted how easy it was for Bo to find multiple matches. I am so grateful he matched easily, but am heartbroken for the thousands of people who are still searching and losing time. If joining Be The Match is something you have ever been curious about, please follow the link on our website under How Can I Help? to learn more. You could quite literally save a life!
We likely won’t know what time transplant will actually happen on Thursday until that morning. We would be so encouraged to know that there are people committed to praying for Bo and the donor cells as they are being transfused. If that is something you would like to do, would you let us know? We would be so humbled and happy to send out a short text update when we know more details. Thank you for your continued prayers and support ❤️