A new fight
Saying this makes it real. I don’t want to write this. Duke has confirmed that the spot on her MIBG scan is a small tumor in her leg bone. The lesion is less then 2 cm in her left femur, just above her knee. The MRI confirmed our fears. Although the spot is small, we can not be sure it is co rained to only this spot. We do not know if more cancer cells are lingering somewhere, remaining undetected until they have grown into a larger mass and able to be detected. She is not having any pain there and no mass felt. Her labs and other scan results were all normal. She is asymptomatic. She is feeling great....she hopped on one foot most of the way into her appointment, she showed everyone her missing teeth, she talked about starting kindergarten and swimming and gymnastics and going to the beach this week and to the Bahamas in July. Oh God why.
Please bear with us as we yo-yo emotionally right now. We wish we could reach out personally to everyone who has loved and prayed for our girl all this time. We are trying to pick ourselves up off the floor. We are devastated and heart broken and crying in private so we can be brave and strong in front of Charlotte and her siblings. Her sister Taylor took the news especially hard. The children are older now...they understand more after living through what we did. They know what is at stake. They understand in simple yet truthful terms that Charlotte has a spot in her leg where the doctors believe her cancer has started to grow back and we need to figure out what to do so that it doesn’t grow and make her sick again. Charlotte is being thoughtful about what is going on and has asked some heart breaking questions. So have Taylor and Parker. We do not have the answers, but they are being covered in love. Oh how I wish I could go back to sleep and wake up back in another day. There are moments I felt like throwing up and grabbing my family and running away. Then there are moments I start to feel the fight in me arise once again. I think Brian and I are at the beginning of the grieving process.
We are still able to take our family on our planned week at Topsail island, NC. We leave tomorrow. We will soak up our time there, giving the children the best vacation we can muster. We will recharge and come back to fight. We have aligned ourselves with the worlds best Neuroblastoma experts up at MSK. They will consult with our Duke doctors about our next steps. When we return we will make a plan. Sloan sees more Neuroblastoma relapse patients then anywhere in the world. Children can and have done this. There is treatment. We will find a way to do this again.
This morning the three amigos were happily playing together in their imaginary world they have together and I watched with new eyes. I wanted to keep them there in that world. I wanted to protect them from what is to come. To think about Charlotte having to go through anything more, to think about what it costs Taylor and Parker...it’s to much for me to even say. I want to scream and punch and run.
But I can’t. It’s time to fight again. Charlotte needs us. I don’t even know what to say to God right now. I was having a hard time even knowing what to pray for besides strength and wisdom for Brian and I. And then a moment came and hit me. I took the girls out today for a treat to get pedicures for the beach. We wanted pretty toes to put in the sand and of course Charlotte asked to add on a manicure☺️ (the girl loves a salon). I saw the 2 of them sitting in their little chairs next to each other.
A song came on and Charlotte started singing a little and did a little seat dance. Taylor looked on smiling. I could see them at 20 and 25, 50 and 55, 75 and 80. And then I knew what to pray for in that moment. I pray that they will be little old women, sitting together someday, laughing, happy in life. Parker is there too of course. Maybe he meets them out for dinner after their salon time. Maybe they catch up over dinner or walks or movies often. Maybe just once in a while. But there they are. Out there in the future. Maybe they talk about all the happy times they had growing up together, remembering their mom and dad who loved them more then anything and how they always felt that love through everything. No matter what.
This is my prayer. ALL THREE of our children—old, happy, wrinkled, and loved. Please God help me. Please God help us.
Please bear with us as we yo-yo emotionally right now. We wish we could reach out personally to everyone who has loved and prayed for our girl all this time. We are trying to pick ourselves up off the floor. We are devastated and heart broken and crying in private so we can be brave and strong in front of Charlotte and her siblings. Her sister Taylor took the news especially hard. The children are older now...they understand more after living through what we did. They know what is at stake. They understand in simple yet truthful terms that Charlotte has a spot in her leg where the doctors believe her cancer has started to grow back and we need to figure out what to do so that it doesn’t grow and make her sick again. Charlotte is being thoughtful about what is going on and has asked some heart breaking questions. So have Taylor and Parker. We do not have the answers, but they are being covered in love. Oh how I wish I could go back to sleep and wake up back in another day. There are moments I felt like throwing up and grabbing my family and running away. Then there are moments I start to feel the fight in me arise once again. I think Brian and I are at the beginning of the grieving process.
We are still able to take our family on our planned week at Topsail island, NC. We leave tomorrow. We will soak up our time there, giving the children the best vacation we can muster. We will recharge and come back to fight. We have aligned ourselves with the worlds best Neuroblastoma experts up at MSK. They will consult with our Duke doctors about our next steps. When we return we will make a plan. Sloan sees more Neuroblastoma relapse patients then anywhere in the world. Children can and have done this. There is treatment. We will find a way to do this again.
This morning the three amigos were happily playing together in their imaginary world they have together and I watched with new eyes. I wanted to keep them there in that world. I wanted to protect them from what is to come. To think about Charlotte having to go through anything more, to think about what it costs Taylor and Parker...it’s to much for me to even say. I want to scream and punch and run.
But I can’t. It’s time to fight again. Charlotte needs us. I don’t even know what to say to God right now. I was having a hard time even knowing what to pray for besides strength and wisdom for Brian and I. And then a moment came and hit me. I took the girls out today for a treat to get pedicures for the beach. We wanted pretty toes to put in the sand and of course Charlotte asked to add on a manicure☺️ (the girl loves a salon). I saw the 2 of them sitting in their little chairs next to each other.
A song came on and Charlotte started singing a little and did a little seat dance. Taylor looked on smiling. I could see them at 20 and 25, 50 and 55, 75 and 80. And then I knew what to pray for in that moment. I pray that they will be little old women, sitting together someday, laughing, happy in life. Parker is there too of course. Maybe he meets them out for dinner after their salon time. Maybe they catch up over dinner or walks or movies often. Maybe just once in a while. But there they are. Out there in the future. Maybe they talk about all the happy times they had growing up together, remembering their mom and dad who loved them more then anything and how they always felt that love through everything. No matter what.
This is my prayer. ALL THREE of our children—old, happy, wrinkled, and loved. Please God help me. Please God help us.
We don’t understand but we know God is with us. While Charlotte and I went to Duke for her MRI, I received dozens of rainbow pictures from our prayer village in our neighborhood. The biggest Ed double rainbow appeared right over our home. Brian was there to see it. What an incredible moment of grace once again.
Incredible. Our house is on the right.
Pampering my sweet girls
Comments
Post a Comment