Charlotte's Journey

I began the post below several days ago, but left some of it open because I hoped perhaps the story would change. It didn't. First, Charlotte is still trucking along here 6 days post transplant now. We are in the thick of it painwise managing her symptoms such as mucositis. The mucositis is worse in her mouth and throat this go around. She is almost maxed out on the amount of pain narcotic, fentanyl,  they can give her, which is requiring a combative medication because at this dose she is clawing at her itching skin. She can no longer swallow anything by mouth, even taking a sip of water hurts. And the mucous being produced along her digestive track hurts going down as well as coming back up as she vomits. Indeed, we are watching her in the throws of the awful symptoms bone marrow transplant causes. But she can move through this pain and we are keeping our eyes fixed on the light at the end of the tunnel. We could see her reach a point of relief in a few days if her baby stem cells...

There are many ways to make happy memories. We are obviously not celebrating our typical Thanksgiving this year, but it's only 2 o'clock and I am sitting here reflecting on a day we've already had while Charlotte lays here peacefully napping away. We have so much to be Thankful for. Strangely, more so then we ever realized. But as I've written before, we've learned that it's in the adversity that treasures are revealed. Our perspective this year has created an outlook full of gratitude which has brought (and will continue to bring) us closer together as a family and also closer to God. Nana Schuey made a lovely Ham dinner for us last night so I could be home to enjoy a holiday meal with the kids. This morning, Parker went "turkey hunting" in the woods near our house with his grandfather, we watched some of the Thanksgiving Parade on TV, then I packed up the kids to head back to Duke so we could spend some family time here together mid day. Volunteers...

Today, Charlotte received her second and FINAL stem cell transplant. This will help rescue and rebuilt her damaged bone marrow that ensued after this last weeks FINAL chemo. The staff here refers to this moment as a patients new birthday. So many milestones, and so many check marks, and so many emotions. Now we sit back and watch her cells grow again! Unfortunately, the most difficult symptom from last time is quickly rearing its ugly head: mucositis😞 BUT we know and pray that if all keeps continuing as expected, even the difficult and painful aspects, then we will be grateful. Charlotte had had a lot of nausea during this chemo cocktail which has seemed to hit her hard and fast. But out of the blue, it seems to be quickly resolving over past 2 days! The only true hiccup we have encountered this time in Bone Marrow Transplant is that 2 days after admission, Charlotte showed signs of a respiratory virus after spiking a high fever. So the team swabbed her nasal passages to look for a ...

I would normally not do this, but time is of the essence. Charlotte is fine. But there is a little girl here who we spent much time with during Charlotte's first transplant, Chloe, who is on life support in the PICU here at Duke. I just learned of this today and apparently her medical team is running out of options to save her. I do not know the details only she became very sick very suddenly after her transplant and is experiencing internal bleeding that is not resolving. Please pause for a moment to send prayers up for Chloe, asking God to help surround her (and her grandparents who are raising her) with comfort and love. Pray that God helps Chloe move through this so she can move forward in her healing. She is just three years old. She looks just like Charlotte and has a fiesty spirit to match. Although the children in this unit are to keep their space from each other during transplant, when little ones their age see each other, gravity takes over and they are pulled towards eac...

I should know better then to write at this time of night. It usually comes from a place of emotion, often fatigue driven. But writing for me is therapeutic. And I like to believe the documentation along this journey as Charlotte battles Neuroblastoma, will be a gift for her to read one day. And I have a strong belief I am meant to give this battle a voice not only for her, but because  a greater power is calling me to do something. I don't know just what yet, but writing this is a start. I started a post a few weeks ago that I couldn't finish. It was left unpublished. Never finished. I can't even bring myself back to read what I had wrote then. I wrote about Jessica Whelan. Her parents had just written that the doctors told them she had just weeks lef to live because her cancer had begun to spread so rapidly so suddenly. She was diagnosed with stage 4 Neuroblastoma at 3 years old last year.  I don't know her or her family, but I feel like I do. What a strange and uniq...

8 months ago to the day, our girl was diagnosed with stage 4 Neuroblastoma and began her first round of chemo the next day March 19. 8 months ago to the day, we thought we might lose her. But she is doing remarkable things.  After 8 months of chemotherapy, today they hung her very last bag of chemo. Ever. It will run over 24hrs and finish up tomorrow late afternoon. I wish I could say she's earned an easy last round. I can say that as she has, but it doesn't make it so. She is feeling so sick. Lots of nausea and belly pain and fatigue already. It's hit her hard and fast. But...all expected and normal side effects and so we will be grateful and hope that it continues as so. Needless to say, we are so happy to be finished with chemotherapy after so long. I wish we could stay here and relish this moment. But we are seeing signs already that her bone marrow is deteriorating. This is, of course, the expected side effect of this high dose chemo. The hope is these last infusions...

Two conversations this morning with Charlotte come to mind as I try to write this update. We had been gently discussing today with the children over the past week. We wanted to be matter of fact about Charlotte needing to return to the hospital for "more medicine" so she can continue to get better. I felt we were all prepared. We were ready. But then this morning came. And the dread and worry began to wash over me. When the bus left with the other little ones who make up my world, emotions started to overcome me. But then, Charlotte happened... I decided not to rush this morning. We didn't need to check into Duke Pediatric Bone Marrow Transplant Unit until well after lunchtime. Therefore, we decided to take a walk to the swings, one of her favorite things to do. On the way, I reminded her after lunch and a nap, we would drive to the hospital. She paused a moment and looked up at me. "Confetti hospital?", she asked. I smiled and laughed because we never called ...