Approaching a fork in our road: a celebration and a decision
Charlotte is recovering beautifully. Her appetite and energy are back up. She gets a break from going into Duke for clinic check ups this week and we've weaned her off of many medications. Y'all, we are talking about her LAST inpatient treatment coming up in about 1.5 weeks. We are here. This is happening! Tears come to my eyes almost everyone I talk about this. It's been about 1.5years to get her here. I know you know this. You have been with us, walking next to us, holding us close, wrapping us in prayer and love, feeling every high and low with us. It's been one and a half years of the most amazingly life changing experience one could never imagine. How is having a child diagnosed with life threatening cancer and watching them battle this beast be "amazing"? I think it's because of God and his work within all of us. It's the only answer that makes sense.
So we are here. Living life between inpatient treatment for the final time. We got to celebrate the 4th of July in our little town of Apex with friends and neighbors. We were able to experience some of our little towns 4th of July festival. We were able to have friends over to cook out and play and do fireworks with our neighbors. She ran, laughing with sparkler "magic" trailing in her little hands. Her giggles and smiles lighting up the evening sky. She hid her face in my chest and covered her ears when the bigger fireworks came out and the sound was loud. She had popsicle "lipstick" dribbling down her chin. She followed her brother and sister, along with the neighborhood kids, up and down the street chasing rolling smoke bombs. Oh God please let her keep going, keep moving. She wants to keep "keeping up" with her big brother and sister more then anything. We believe she can and will, but our reality is never simple....
The first other family we ever met at Duke going through stage 4 Neuroblastoma treatment as well is Jacobs family. We met him and his mom Kim during Charlotte's first transplant back in September. Jacob was going through immunotherapy at that time. He's 6 months ahead of Charlotte in treatment. He is 3 and a little brother to a big sister. He is a few months older then Charlotte, turning 4 this summer. He finished treatment too. His cancer, undetected at the end of immunotherapy has returned. They went to begin the Vaccine trial we are considering up at Sloan Kettering in NYC and his scans returned with more activity including a new spot on his skull. He is not Charlotte. She is not Jacob. We know this. But this is our reality. This is what lays heavy on us when we want to celebrate the end of treatment. This is such an ugly beast of a cancer. And researchers are still trying to understand why some children relapse while others don't. Who will Charlotte be? No one but God can know this. Have we destroyed this cancer for good or have we just bought her more time until new treatments and technologies are discovered? Instead of turning 4 like he should in a happy and carefree way, Jacob is back in treatment trying to reach remission again so that he can qualify for this vaccine. He is going through more chemo, more of a different type of radiation to his face and skull, and a new antibody/Immunotherapy treatment where he will live in New York at Sloan Kettering to receive. Please pray for this little boy and his family who are putting one hopeful step in front of the other. Whom we have followed in their path for this last year in so many ways. My personality is easily drawn into others journeys but my hope and belief is confident as well. For some reason, maybe you feel it too, we think Charlotte is having an exceptional experience. Charlotte has responded so remarkably to everything thrown at her and her cancer has been very sensitive to treatment so we believe her next scans that signal end of treatment can and will be clear. But God isn't subtle all the time. Sometimes he smacks you right upside your head when you need it. And for me and Brian, Jacobs story is a fresh reminder that although we can celebrate this HUGE milestone coming up, we can not get too comfortable just yet. Listening to Jacobs story, hugging his mother, feeling what was placed in my heart...well it wasn't subtle. Charlotte's doing amazing things but there is more on the table in front of us. And we will pray on this and listen to God to help us help her keep moving, keep going. Thank you village for praying for Jacob to respond to this new treatment so he can too.❤️🌈
So we are here. Living life between inpatient treatment for the final time. We got to celebrate the 4th of July in our little town of Apex with friends and neighbors. We were able to experience some of our little towns 4th of July festival. We were able to have friends over to cook out and play and do fireworks with our neighbors. She ran, laughing with sparkler "magic" trailing in her little hands. Her giggles and smiles lighting up the evening sky. She hid her face in my chest and covered her ears when the bigger fireworks came out and the sound was loud. She had popsicle "lipstick" dribbling down her chin. She followed her brother and sister, along with the neighborhood kids, up and down the street chasing rolling smoke bombs. Oh God please let her keep going, keep moving. She wants to keep "keeping up" with her big brother and sister more then anything. We believe she can and will, but our reality is never simple....
The first other family we ever met at Duke going through stage 4 Neuroblastoma treatment as well is Jacobs family. We met him and his mom Kim during Charlotte's first transplant back in September. Jacob was going through immunotherapy at that time. He's 6 months ahead of Charlotte in treatment. He is 3 and a little brother to a big sister. He is a few months older then Charlotte, turning 4 this summer. He finished treatment too. His cancer, undetected at the end of immunotherapy has returned. They went to begin the Vaccine trial we are considering up at Sloan Kettering in NYC and his scans returned with more activity including a new spot on his skull. He is not Charlotte. She is not Jacob. We know this. But this is our reality. This is what lays heavy on us when we want to celebrate the end of treatment. This is such an ugly beast of a cancer. And researchers are still trying to understand why some children relapse while others don't. Who will Charlotte be? No one but God can know this. Have we destroyed this cancer for good or have we just bought her more time until new treatments and technologies are discovered? Instead of turning 4 like he should in a happy and carefree way, Jacob is back in treatment trying to reach remission again so that he can qualify for this vaccine. He is going through more chemo, more of a different type of radiation to his face and skull, and a new antibody/Immunotherapy treatment where he will live in New York at Sloan Kettering to receive. Please pray for this little boy and his family who are putting one hopeful step in front of the other. Whom we have followed in their path for this last year in so many ways. My personality is easily drawn into others journeys but my hope and belief is confident as well. For some reason, maybe you feel it too, we think Charlotte is having an exceptional experience. Charlotte has responded so remarkably to everything thrown at her and her cancer has been very sensitive to treatment so we believe her next scans that signal end of treatment can and will be clear. But God isn't subtle all the time. Sometimes he smacks you right upside your head when you need it. And for me and Brian, Jacobs story is a fresh reminder that although we can celebrate this HUGE milestone coming up, we can not get too comfortable just yet. Listening to Jacobs story, hugging his mother, feeling what was placed in my heart...well it wasn't subtle. Charlotte's doing amazing things but there is more on the table in front of us. And we will pray on this and listen to God to help us help her keep moving, keep going. Thank you village for praying for Jacob to respond to this new treatment so he can too.❤️🌈
Baby your a firework
Pool birthday party celebrating Addison. Charlotte splashed and enjoyed being around friends and treats! Next year she can't wait to be able to swim with everyone
Back yard water party with lydia and friends
Clinic check up with her best amigos, big sister and brother. They have a few more days of summer break before they start back up at school July 10.
Breakfast drive way picnic
Morning play with Taylor...they decided to match in white tanks and undies 😂
Her dance moves to a fun dance CD my friend Sharon made and sent the kids. She may be break dancing to Michael Jackson here
In a span of a couple days, we received a flood of rainbow pictures from some village members 😂 This feels like a wave of love washing over us from above. What does it say when hundreds of people stop to think of and pray for Charlotte when God send a rainbow? It's truly magical and I believe manifests into peace and healing for Charlotte and our family. Thank you so so much
Last round! Amazing. Thinking of you all constantly. She is on her own path and battling with grave and courage. Prayers for Jacob and his family and his path as well.
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