A buffet of emotions: excitement, sadness, joy, worry, fear, anxiety, and most of all HOPE
And she's off! Her final infusion of her antibody therapy begins today. We checked in yesterday for her final inpatient round! She was full of energy too. We checked in, got labs drawn and took a pass to leave the unit and go explore outside. We ate dinner in the courtyard. We "hunted dinosaurs"...she even roared at a few passer bys 😂. We played chase and hide and seek, and then came back up to 5200 and she wanted to ride all the riding toys. She saw our Austin's bike. She always had been afraid to try it but this time, she walked right up to it and asked "I ride Austin's bike?" "I think he'd love that" I said. "He watching from heaven?" She asked. "He sure is. He'd love you to have some fun on his bike." And she climbed on and smiled proudly at being on his big boy bike, and said "Hi Austin!!" She happily and proudly rode in up and down these halls we now know so well. I flashed back to the days they became buddies and would ride together up and down the halls when either of them felt well enough to do so. I looked at these nurses and the staff who have become like family to us over the past year. I heard her laugh and ask to chase a nurse. I could see her strength and determination. She's grown in every possible way this year.
My emotions are running high for so many reasons: excitement for Charlotte getting to be finished with inpatient treatment, sadness in having to say good bye to the nurses who feel like an extended family now, joy for moving on toward whatever lies ahead for our girl and our family, worry that all of this is too good to be true and holding my breath while waiting for the ball to drop, fear of stopping this treatment that has saved our girl's life, worry for the upcoming scan results to tell us where she stands, anxiety about the decisions we must soon make on continuation of experimental treatment for this maintenance period after standard treatment ends, and hopeful that God, who has brought us this far, will provide us the wisdom and guidance to do whatever we must so that our girl CAN keep moving, keep going.
Although I keep fighting back my emotional mommy tears for one reason or another, our girl is a bright smiling beam of sunshine. (Well, until the medicine makes her feel yucky, irritable, and cranky but nevertheless....) She is ready to move on towards living her life outside of these hospital walls. We are so close to making that a reality. For how long? We can not know. It will truly be a day by day, week by week, month by month, year by year process. We are years away from knowing if this cancer is truly gone. So, of all of these feelings we are experiencing simultaneously at this moment: excitement, sadness, joy, worry, fear, anxiety, and hopeful, I think the one that is the strongest is hopeful. You could not have walked beside Charlotte and witnessed this journey over the past 1.5 years and not feel hopeful, right? You all have been right here with us! And what a special gift hope truly is.
If this round goes according to plan, Charlotte will come home Friday. We will have a little over a month of at-home medication to complete the 6 months of immunotherapy. We will begin planning for scans, and her central line to be removed, and the Vaccine Trial up at Sloan Kettering in NY. We will transition back to Oncology for post treatment care. We will get ready for preschool, maybe gymnastic or dance classes, perhaps some indoor swim lessons in the fall/winter? Plan for her 4th birthday in October. Plan a family vacation. Plan for her make-a-wish. Take a breath. Tune out the interference so that we can listen closely to how we can make the most of our time here living this life we have been given for however long we are given it, how we can give back and make a difference, and how we can BE the difference.
My emotions are running high for so many reasons: excitement for Charlotte getting to be finished with inpatient treatment, sadness in having to say good bye to the nurses who feel like an extended family now, joy for moving on toward whatever lies ahead for our girl and our family, worry that all of this is too good to be true and holding my breath while waiting for the ball to drop, fear of stopping this treatment that has saved our girl's life, worry for the upcoming scan results to tell us where she stands, anxiety about the decisions we must soon make on continuation of experimental treatment for this maintenance period after standard treatment ends, and hopeful that God, who has brought us this far, will provide us the wisdom and guidance to do whatever we must so that our girl CAN keep moving, keep going.
Although I keep fighting back my emotional mommy tears for one reason or another, our girl is a bright smiling beam of sunshine. (Well, until the medicine makes her feel yucky, irritable, and cranky but nevertheless....) She is ready to move on towards living her life outside of these hospital walls. We are so close to making that a reality. For how long? We can not know. It will truly be a day by day, week by week, month by month, year by year process. We are years away from knowing if this cancer is truly gone. So, of all of these feelings we are experiencing simultaneously at this moment: excitement, sadness, joy, worry, fear, anxiety, and hopeful, I think the one that is the strongest is hopeful. You could not have walked beside Charlotte and witnessed this journey over the past 1.5 years and not feel hopeful, right? You all have been right here with us! And what a special gift hope truly is.
If this round goes according to plan, Charlotte will come home Friday. We will have a little over a month of at-home medication to complete the 6 months of immunotherapy. We will begin planning for scans, and her central line to be removed, and the Vaccine Trial up at Sloan Kettering in NY. We will transition back to Oncology for post treatment care. We will get ready for preschool, maybe gymnastic or dance classes, perhaps some indoor swim lessons in the fall/winter? Plan for her 4th birthday in October. Plan a family vacation. Plan for her make-a-wish. Take a breath. Tune out the interference so that we can listen closely to how we can make the most of our time here living this life we have been given for however long we are given it, how we can give back and make a difference, and how we can BE the difference.
That smile. Checked in to our room. She knows this is her last round!
Remember our fish friends?? We always stop to check on them when get to the 5th floor. They are still swimming strong!
Exploring outside Duke
Playing hide and seek
Chase
Hunting dinosaurs and being 3
Confident
Riding Austin's bike
Open gym: gymnastics fun with friends last week before admission
Collecting more rainbows. They just keep coming and often with the most impeccable timing. Thank you so so much. God is just amazing!
Dear Jennifer, your written testimony of this journey is already part of the difference you are making and will continue to make. My heart goes out to you and your family and it is full of wishes for continued patience and strength. I pray and trust God will provide you the wisdom and guidance to do whatever you must. Charlotte is a true gift from God.
ReplyDeleteThanks so much Patricia❤️That is so kind to say. Sharing this journey has been our honor. I hope she enjoys reading about it one day. And also thank you for all your words of support and encouragement over all this time. I hope we get to meet again one of these days!
DeleteI am inspired by Charlotte and your entire family and village. I see the good in this world through Charlotte's journey. Love and prayers to you all.
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