No more to go
I keep wondering if this is how it will feel before every scan from now on. To describe the sickening anxiety is impossible. So I can't. For past scans and biopsies, there was always more treatment still to come. If for some reason the results did not reflect our hopes, then we could have always said "Well, that's ok, she still has more to go! Maybe next time." But this time, there is no more to go.
This time, we go into these scans as the culmination of therapy. This time, we need the cancer gone. We need our girl declared NED (no evidence of disease) and in complete remission. Charlotte can keep going, keep moving as we pursue the Clinical Trial for the Neuroblastoma Vaccine up at Sloan Kettering Memorial in NY. We believe in research supporting the need for more during the maintenance period for the type of cancer Charlotte has. We know what we were up against, we saw what she faced, we witnessed her beat it down, and now we understand what else is at stake. Relapse rates for Stage IV NB are still devastating...why? Due to its complexity, we believe long term coverage is needed and perhaps this Vaccine is the answer. Or atleast part of the answer.
So this morning, our baby girl will wake up and we will hear her little feet pad across the hardwood floors to our room. Like every day, around 7 something she will climb up into our bed for her morning snuggle with Brian and I. Her brother and sister shortly follow for the big bed cuddlefest. It's how we start every morning and have for years and years. However, unlike most mornings, today she will begin to cry because she won't be able to eat breakfast. Instead we will do our best to distract her while her brother and sister eat their breakfast and get ready to start a fun day. Charlotte will then know she will be getting "sleepy medicine" today. Same for tomorrow morning. It will be a hard morning for her but one she has been made for. She has been made for this life, given exceptional tools that help her and also help guide us all. We will attempt a short hour or so this morning of preschool in the hopes it is a good distraction before her 11am appointment at Duke. We will all do what we always do: face the day with hope and gratitude and as much joy as possible.
So, Charlotte will have scans over the next 2 days. On Thursday afternoon, we will meet with our team to go over results and also for Charlotte to have her clinic check up. Our hopes and prayers are for her results to show no evidence of disease. Our wish is for her to get to ring the end of treatment bell with that beautiful smile on her face that reaches her little eyes. She has earned it. Oh God, please let her keep going, keep moving. Thank you all for your continued prayers. You will all be here right next to us in spirit when our girl rings that bell. You've been with us every step of the way and we continue to be so grateful for your love and encouragement and prayers. We are really feeling the energy as it feeds us towards what's to come here at Duke and hopefully up in NY.
This time, we go into these scans as the culmination of therapy. This time, we need the cancer gone. We need our girl declared NED (no evidence of disease) and in complete remission. Charlotte can keep going, keep moving as we pursue the Clinical Trial for the Neuroblastoma Vaccine up at Sloan Kettering Memorial in NY. We believe in research supporting the need for more during the maintenance period for the type of cancer Charlotte has. We know what we were up against, we saw what she faced, we witnessed her beat it down, and now we understand what else is at stake. Relapse rates for Stage IV NB are still devastating...why? Due to its complexity, we believe long term coverage is needed and perhaps this Vaccine is the answer. Or atleast part of the answer.
So this morning, our baby girl will wake up and we will hear her little feet pad across the hardwood floors to our room. Like every day, around 7 something she will climb up into our bed for her morning snuggle with Brian and I. Her brother and sister shortly follow for the big bed cuddlefest. It's how we start every morning and have for years and years. However, unlike most mornings, today she will begin to cry because she won't be able to eat breakfast. Instead we will do our best to distract her while her brother and sister eat their breakfast and get ready to start a fun day. Charlotte will then know she will be getting "sleepy medicine" today. Same for tomorrow morning. It will be a hard morning for her but one she has been made for. She has been made for this life, given exceptional tools that help her and also help guide us all. We will attempt a short hour or so this morning of preschool in the hopes it is a good distraction before her 11am appointment at Duke. We will all do what we always do: face the day with hope and gratitude and as much joy as possible.
So, Charlotte will have scans over the next 2 days. On Thursday afternoon, we will meet with our team to go over results and also for Charlotte to have her clinic check up. Our hopes and prayers are for her results to show no evidence of disease. Our wish is for her to get to ring the end of treatment bell with that beautiful smile on her face that reaches her little eyes. She has earned it. Oh God, please let her keep going, keep moving. Thank you all for your continued prayers. You will all be here right next to us in spirit when our girl rings that bell. You've been with us every step of the way and we continue to be so grateful for your love and encouragement and prayers. We are really feeling the energy as it feeds us towards what's to come here at Duke and hopefully up in NY.
Charlotte went to Ralieghs Fairytale Ball. Thank you for this gift Brush Family❤️
It could have been Disney to her! She didn't want to leave the dance floor.
Charlotte and Lydia dancing
Elania has become a new favorite princess
It was truly magical for her
Some pictures just living life and having fun:
New hope valley train ride with friends
Labor Day Weekend/ Her last dose of medication signaling end of treatment at Beach Pictures:
Look at the picture of the wall in the condo we rented! 5 little beach huts one for each of us and the artist is Reynolds!
Family strong!
Beautiful pictures. Prayers as always. Love you guys. #charlottestrong #familystrong
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