Charlotte's Journey

We have been busy LIVING life! Charlotte is feeling great!  She's got lots of energy, is eating like the foodie that she is, and is able to just BE a typical three year old playing and enjoying family time home. She's had over 2 weeks off from clinic check ups which has been an awesome break from going into Duke. She still has some big mood swings due to the oral chemo, accutane, she is taking but nothing we can't love her through😊.  We still have one more week before our girl steps into the ring again for round 3. She's like a boxer now that I think about it. Each round of treatment is her ring, and she gets knocked down but never out. She gets back up again to face whatever is to come. Sometimes she may rise slowly, but sure enough, she's still got a lot of fight left in her. To be home this Mother's Day with all 3 of my babies and my adoring husband was so very special. Of course, everything in our lives feels and tastes a little sweeter these days. We hol...

Today, we walked in honor and in memory of the littlest Heros from Duke's Pediatric Bone Marrow Transplant Unit. It's hard to find the words really. It was a celebration, a reunion, and also a sobering reminder that although today we have Charlotte in our little family of five, we do not know what our future holds. For many families there, it was comforting to be back among all of the other warrior families. But I cannot pretend to even know the depths of their emotions. We got to see our beloved Austin family and Chloe's family as well as many others. There was even a family who just lost their son last week. They were there to honor him and stand strong together. It was so emotional, humbling, and inspiring. So many there have lost their world, their babies, their sons and daughters and brothers and sisters. During the balloon release, which honored all the little angels of 5200, holding Charlotte and Taylor and Parker near, Brian and I were so grateful to be still here o...

Today, Charlotte and her siblings along with all the other patients and their siblings from Duke's Pediatric Bone Marrow Transplant Unit (aka 5200) will be honored at Duke Children's annual Rainbow walk of Heros event. This event celebrates all the patients and families who have undergone transplant this year. It's a chance to reunite and also celebrate the memory of those who have gained their wings. This event also helps raise funds for Dukes Family Support Program. This program is vital to the patients and families in 5200 but operates under donor funding separate from the hospital. It has been a lifeline for al of us going through transplant by providing volunteers, family support services and financial assistance to help lessen the burden, coordinating fun activities for the children who are going through transplant and more. We are so excited to be able to be at a place in treatment where Charlotte can be there to participate! If you can find it in your heart to don...

I wanted to write a quick update so our village can add all of our voices to those all around the world who are praying for little Owen and his parents. They have been sent home on hospice care after learning that Owens tumor was still growing despite beginning treatment. He started exhibiting many symptoms during the first round of chemo which led to an MRI. This MRI showed increased tumor activity being the cause of his neurological issues. St.Jude's determined Owen was not responding and this was his only hope. Amanda and her husband brought Owen back to their home town to be surrounded by their loving family as they spent their last remaining days with him. However, instead of seeing him continue to decline like they were told, he has started to improve in the most unexpected ways. They have been in contact with their doctors at St.Jude's while at home over these last couple weeks and the team is surprised in these findings! They now believe there is a chance there could be...

I had written those other 2 posts (God Winks and getting Annemarie'd) last week while inpatient but I started and stopped them so often because of Charlotte's needs and my own exhaustion that I never got to proof and publish them. So I apologoze for the all of a sudden 3 posts published back to back tonight. But I really do try to be authentic and capture all of Charlotte's moments...I like and need to visualize her grown up and reading all of this one day when we feel she is ready. Maybe she will see and inspire herself all over again one day. Maybe Brian and I will make her proud. Maybe this care page turned journel will honor her and all of those who have rode along praying right beside her. She will read-see-feel the love we have all poured over her this year when the time is right one day. So I like to leave no detail out and no stone unturned in revealing her journey here in this space we've created. Here with you all. Number one, we are HOME. Came home Friday e...