Merry Christmas
THANK YOU for your prayers for Poppy everyone. Schuey andNeal, as do Brian and I, believe in this power and they have felt it first hand once again. It looks like Neal is making a full and quick recovery. He is now back home even and we drove the 2 hour easy stretch for a quick visit and couldn’t believe it when he answered the door! Knowing he is still recovering, we didn’t stay too long and brought our brood back home for bedtime. We wanted to let you know and to thank you all once again for surrounding our family in prayer this Christmas season and always.
As for our Charlotte, she is doing amazingly. She is vibrant, full of life and energy, enthusiasm and pure joy. She is truly funny, but also we can see such a tender and generous nature developing within her. She often relays profound wisdom coming from a space within her that has to be God sent. She had a wonderful Christmas home here with her Taylor and Parker and Brian and I. Every season feels like such an amazing blessing, and we hold onto every moment with such deep gratitude. This is one of the gifts we are left with after the last 2.5 years.
We made a decision about Charlotte’s monitoring this year, 1 year post treatment. Duke recommended moving scans to 6 months where as MSK in NYC asked for 3-4 months due to the vaccine study requirements. We decided to do scans and work ups every 4 months this which means 3 times this year instead of 4 or 2. Felt like we met in the middle. That means Charlotte will have scans and labs February, June, and October in 2019 if all goes according to our prayers. So, we will ring in the New Year and have a month or so until her next set of scans. I wish I could say kids that look and act and have responded to treatment like Charlotte are in the clear for life. But by now if you have followed Charlotte and what stage IV HR Neuroblastoma is, we all know this isn’t her reality yet. I try not to look at her with worry under some microscope if I see an appetite change, or energy lag, or a fever, or an ear infection, or with every ache and pain. But I’ve learned this ain’t my reality. She’s had some ear infections recently and in a snap I’m brought back to the months before diagnosis in which repeat ear infections were a precursor to us finding out she had cancer. No, we know ear infections in children do not signify a major health concern, but once again we know that in Charlotte nothing is as simple. Any sign of inflammation send signals through my body that almost freeze me in space. I flashback. And I flash forward. And I picture some of the children we have become familiar with on this journey who were back to living life only for cancer to steal back somehow, unsuspecting. I say this not because I believe for one moment that this is Charlotte’s fate. Brian and I believe she will keep going, keep moving in this direction toward complete healing. But I say this because if recruiting prayers liked we have is part of the piece of her victory, then I will continue to beg and plead for those prayers. Our own Church asked if it was time to remove Charlotte from their prayer group and bulletin and chain. I said as quick as the words could form “NO! Please. Please no, not yet.” And so these sweet people continue to pray every single week for our girl. We actually met the leader of our churches prayer group, Dianne, a couple months ago. She beamed when she finally met Charlotte. She couldn’t wait to tell everyone she met her. This lady held our hands as we formed a circle of 6 that included her and bowed our heads and prayed for our own sweet dog Lucy, who was very sick at the time. We were not sure Lucy would make it for long. Our Taylor, who heard at the end of service that we could meet in the prayer room for any special prayer requests, with tears in her eyes asked if we could go pray for Lucy. And that is when we met Dianne. And that was when she met Charlotte. Imagine praying for this little 2 year old, who became 3, and then 4, and now 5, as she fought for her life. And imagine her looking up at you hoping you could pray for the same grace to be given to her dog that she loves so much. It was a beautiful moment for us all, but I remember telling her to please keep leading her group to include Charlotte. I told her the woods are deep and Charlotte isn’t quite through them yet....and she promised she wouldn’t let up. And for now, our Lucy is still here and living and actually doing as well as she can be considering there appears to be cancer beginning to take over her going on 12 year old playful boxer self.
So, Brian and I believe. We believe these collective prayers do hold power. We believe they are heard. And although what we pray for isn’t necessarily what we will always receive, it’s the conversation that matters. It’s these moments that help lift our eyes or help us hear or help guide us. And like Dianne, you all have been here caring and praying all this time. Silently working somehow to help our baby girl be here today. Merry Christmas and cheers to 2019.
As for our Charlotte, she is doing amazingly. She is vibrant, full of life and energy, enthusiasm and pure joy. She is truly funny, but also we can see such a tender and generous nature developing within her. She often relays profound wisdom coming from a space within her that has to be God sent. She had a wonderful Christmas home here with her Taylor and Parker and Brian and I. Every season feels like such an amazing blessing, and we hold onto every moment with such deep gratitude. This is one of the gifts we are left with after the last 2.5 years.
We made a decision about Charlotte’s monitoring this year, 1 year post treatment. Duke recommended moving scans to 6 months where as MSK in NYC asked for 3-4 months due to the vaccine study requirements. We decided to do scans and work ups every 4 months this which means 3 times this year instead of 4 or 2. Felt like we met in the middle. That means Charlotte will have scans and labs February, June, and October in 2019 if all goes according to our prayers. So, we will ring in the New Year and have a month or so until her next set of scans. I wish I could say kids that look and act and have responded to treatment like Charlotte are in the clear for life. But by now if you have followed Charlotte and what stage IV HR Neuroblastoma is, we all know this isn’t her reality yet. I try not to look at her with worry under some microscope if I see an appetite change, or energy lag, or a fever, or an ear infection, or with every ache and pain. But I’ve learned this ain’t my reality. She’s had some ear infections recently and in a snap I’m brought back to the months before diagnosis in which repeat ear infections were a precursor to us finding out she had cancer. No, we know ear infections in children do not signify a major health concern, but once again we know that in Charlotte nothing is as simple. Any sign of inflammation send signals through my body that almost freeze me in space. I flashback. And I flash forward. And I picture some of the children we have become familiar with on this journey who were back to living life only for cancer to steal back somehow, unsuspecting. I say this not because I believe for one moment that this is Charlotte’s fate. Brian and I believe she will keep going, keep moving in this direction toward complete healing. But I say this because if recruiting prayers liked we have is part of the piece of her victory, then I will continue to beg and plead for those prayers. Our own Church asked if it was time to remove Charlotte from their prayer group and bulletin and chain. I said as quick as the words could form “NO! Please. Please no, not yet.” And so these sweet people continue to pray every single week for our girl. We actually met the leader of our churches prayer group, Dianne, a couple months ago. She beamed when she finally met Charlotte. She couldn’t wait to tell everyone she met her. This lady held our hands as we formed a circle of 6 that included her and bowed our heads and prayed for our own sweet dog Lucy, who was very sick at the time. We were not sure Lucy would make it for long. Our Taylor, who heard at the end of service that we could meet in the prayer room for any special prayer requests, with tears in her eyes asked if we could go pray for Lucy. And that is when we met Dianne. And that was when she met Charlotte. Imagine praying for this little 2 year old, who became 3, and then 4, and now 5, as she fought for her life. And imagine her looking up at you hoping you could pray for the same grace to be given to her dog that she loves so much. It was a beautiful moment for us all, but I remember telling her to please keep leading her group to include Charlotte. I told her the woods are deep and Charlotte isn’t quite through them yet....and she promised she wouldn’t let up. And for now, our Lucy is still here and living and actually doing as well as she can be considering there appears to be cancer beginning to take over her going on 12 year old playful boxer self.
So, Brian and I believe. We believe these collective prayers do hold power. We believe they are heard. And although what we pray for isn’t necessarily what we will always receive, it’s the conversation that matters. It’s these moments that help lift our eyes or help us hear or help guide us. And like Dianne, you all have been here caring and praying all this time. Silently working somehow to help our baby girl be here today. Merry Christmas and cheers to 2019.
Christmas morning! Ready to run into living room
Icing skating as a family
Preschool Christmas program. It was as precious as you could imagine. I’ll try to post a video clip of a song
Rare Snow day in December in NC!
She loves ice skating!! She was really good and even when she fell she had a huge smile on her face.(I’ll try to include a video.) This girl is ready to try everything
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