Today, our boy is TWO! It’s hard to believe Bo was having chemo on his birthday last year. What a difference a year makes. We are feeling deep gratitude today for Bo’s life, joy, and for all God has brought him and our family through this last year.
These last few weeks and months have felt heavy for our family for many reasons. Since May, we have lost 3 baby friends we made while in treatment at the hospital. Our hearts are grieving with our friends who have lost their precious babies. It makes Bo’s life and health all the more precious and we pray we never take a moment of it for granted. Will you pray for us as we walk with these friends in their grief? It’s a space we’ve never been in before and it feels very fragile and weighty, but we know this is exactly where God wants us.
Our family is still in the early stages of our emotional healing from this last year. Lance and I have been seeing individual counselors, a marriage counselor, and we are plugging into some oncology specific counseling for families who have walked through childhood cancer. It’s been a lonely road figuring out this post-treatment/remission life. For us, it doesn’t feel like the cancer chapter of our life is necessarily over, but at the same time, since we’re not in treatment anymore, it looks different. We’re in a strange limbo and it feels like there’s no end in sight. Living month to month, appointment to appointment–it’s as exhausting as it sounds. It’s hard to make plans, but it’s hard not to (if that makes sense). It’s been good connecting with other families who have walked this road, as they understand first hand what a strange place it is to linger here. Our hospital is working on connecting us with a family who is several years out from transplant and I am eager to hear from them how they navigated these “limbo” years. Thankful to have so many different resources available for healing.
Bo’s clear biopsy results last month was such a mercy from God in so many ways. I have really struggled these last several months with anxiety and obsessing over every little bruise or spot that I find on Bo. I thought going from every other week appointments to once a month appointments would be so freeing, but instead, not having the positive reinforcement of frequent labs has been torture. It’s revealed a lot of what’s been going in my heart toward the Lord-I haven’t been trusting him like I want to be. Although the situation with Bo’s platelets last month and his doctor ordering a biopsy was incredibly stressful, it gave us a window into how his body is doing on the deepest level, and it was exactly what I needed to calm down and trust. At first I felt ashamed that I needed proof, but then in God’s loving mercy, that shame turned to gratitude that God sees and knows and has immense compassion for our weak frames. He remembers that we are dust. What mercy. Since getting those results, I feel like I see Bo with fresh eyes. Instead of spiraling into a panic attack when I see a bruise or petechaie, I remind myself of God’s faithfulness over this last year, Bo’s clear biopsy results from last month, and then I take a deep breath and remind myself that Boaz belongs to God. It hasn’t been an easy practice, but it’s been good, hard, freeing work.
Bo had labs drawn and a liver ultrasound yesterday. We won’t have ultrasound results until Monday when we go to clinic, but his lab results showed that his platelets have increased to 70! That’s more than double what they were last month. Incredible! What an answer to prayer. The ultrasound results should help his doctor see if it’s his liver that’s destroying the platelets and how his liver is recovering from the damage done by the chemo last fall (what sent us to the PICU after transplant). Bo has been on a liver medication since January and this ultrasound will also help to determine if he needs to stay on the medication long term or not. We are praying for full restoration to Bo’s organs, specifically his liver and kidneys, and that they can work in harmony with his other systems as God designed–no more destruction of good platelets, etc.
Thank you doesn’t seem sufficient to express our gratitude for your support and prayers for our family this last year. Our boy is so incredibly loved!