God’s timing

 After a long weekend with no news regarding Charlotte’s scans, a small mercy came in the form of a quick message through Charlotte’s MyChart with Duke saying the preliminary results look good and scan report is just delayed. All of her labs and check ups look good! We are confident we can celebrate another ALL CLEAR with no evidence of Neuroblastoma. She gets another 6 months to JUST BE! Thank you God! 

Standard of care is to monitor via the MIBG scan for 5 years after treatment. This was Charlotte’s 3 year off treatment for relapse. We expect to scan 2x at 6 month intervals this year and then one more in her final 5th year. Then her annual check ups are for long term care alone and they stop looking for Neuroblastoma unless we see any signs. This can be her story. And the waiting was a reminder that everything is God’s timing isn’t it. Like children, we want what we want when we want it. Waiting, patience is hard. We are God’s children and I smiled thinking how our immediate needs we feel aren’t always God’s and how we just need to trust. It’s so hard and we won’t be perfect, but setting aside our urgency is an exercise in faith. Brian and I were reminded of this over the weekend.

Thank you for all of your love and prayers! I know I don’t write here as often…a lot of my creative energy is being poured into Be The Rainbow Foundation and I am starting a blog on our website and post a lot on socials ( @betherainbowfoundation on both instagram and facebook). I still consider writing a book but sometimes that feels arrogant. Like I have anything to say that would make a difference to someone else. But I do feel the pull. I miss writing here but I also know this space turned into more of an outlet for me and maybe a place where my growing faith was able to shine through my words. Part of Gods plan. In any case, thank you for still being here and in our village. Being part of the thread that has helped hold us together and lifted us up in all the days we needed to see a rainbow