Bubble popped: a separate call to prayer

This may surprise those who know me well, because I can be somewhat a friendly, social butterfly who makes fast friends, but I have preferred to stay in my own bubble while going through treatment here at Duke. I rarely make small talk let alone deep conversations with other parents and family members we see. I can count 2 people I've really spoken with. One was a mother of a son being treated for leukemia that Charlotte befriended whom we would see while undergoing chemo. We even saw them through the isolation window last week and the 2 children played by pressing hands against the window with each other while the mother and I chit chatted. And another was a grandfather I met once at a clinic check up as they were going through early diagnosis after transferring here from St. Jude's for a brain tumor in their 4 year old. I was immediatly drawn to him because he was drawn towards Charlotte. He lit up watching her play with her little bald headed self, happy as could be in the midst of this disease. He said she gave him hope that this could be his own grand daughter. We spoke for a good while. And I still pray for them and think of them often. So besides those 2 individuals, we have kept to ourselves. Kept our head to the ground focusing on what Charlotte needs. This is partly because I can easily get emotionally drawn in to someone else's story and I simply didn't believe I have the emotional stores for that right now. The other part is fear of watching someone's story unfold in a different way then our own and all the complex comparisons we as humans can draw from that: envy or fear. With that said, we had never met another child with neuroblastoma. Not until last week.

Child life came to me when we were admitted here 2 weeks ago and asked if she could share my name with another family currently here with the hopes that me and this mom of a 3 year old being treated for neuroblastoma could form a network of sorts. Their son, Jacob, is 3 years old and was diagnosed last summer after he turned 2. They are several steps ahead of us in treatment. He completed his tandem Stem Cell Transplant here, had proton radiation up at Childrens Hospital of Philidelphia, and was back here in this unit to receive part of his 2nd of 5 rounds of immunotherapy. We chit chatted some. I was hesitant but she was so sweet and I genuinely liked her right off the bat. She seemed a positive person and I thought perhaps my bubble didn't need to be so rigid right now. I had Charlotte make Jacob a card one day as he was feeling just awful going through his immunotherapy treatment. And I wrote my email on the back with hopes we might keep in touch.

I saw them be readmitted yesterday. I hoped it was maybe a fever or something simple to be evaluated for. I caught her in the hallway. And my bubble burst hearing her news. Jacob, who has neuroblastoma in his legs, spine, sinus/skull bone area, and chest is having leg pain again. His MIGB back in August showed more disease present then they would have hoped for, but his mother thought maybe radiation would shrink it more and immunotherapy would help as well. He won't walk and isn't eating much. The team fears his disease has progressed despite treatment. They are scheduling more scans to determine if they will take him off this protocol to try something else maybe at another Hospital that treats refractory neuroblastoma. I hugged her. I listened. I told her I would pray. I went back to my room and looked down at a napping Charlotte. I talked on the phone to Brian. I wanted to cry and scream and punch something. I told Brian part of me wished I stayed in my bubble, part of me wishes I could do something, anything for this family, part of me feels so grateful that Charlotte has responded so well to this protocol knowing that isn't the case for everyone. But all of me wants to have a huge cry out for so many reasons.

But I tell you this now because you all have become this powerful source of prayer, positive energy,, and what Brian and I believe, a huge factor in Charlotte's success. But we can't keep this in our own bubble to hoard. I write this so we can lift up Jacob and his mom Kim (along with his 9 year old sister and his dad) in prayer right now. Pray that if this current protocol is not the right path for him, that his family finds the answers to save their little boy. I don't think God wants Brian and I to live this experience in a bubble. I think that's one of the reasons I'm drawn to writing this blog. We are spreading his love, grace, power, and giving our testimony as witnesses of what is possible with God. My bubble is popped and I'm ashamed it was ever there to begin with. Because when I look into this mothers eyes, I was at first afraid to see what I would fear as our own child's fate, but that really isn't the case after all. I see another care worn mother whose child is also a warrior. And I ask if our village can please wrap them in prayer just as you have done and continue to do for our Charlotte. Thank you for this.

Our girl is still fighting strong. Some signs of herself peaking through as her fever spikes spread out and her pain is being managed well. As always, I'll update as she hopefully turns a corner for the better soon. Grow cells grow. And God bless Jacob and his family. Thank you for including him in your thoughts right along with our girl❤️🌈