Ultimate Christmas: please pray

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Christmas of 2017, I coined the term “Ultimate Christmas” in our house. It felt like the happiest Christmas season of my life because during the year prior, Charlotte was going through a scary time in patient during her second stem cell transplant. She was so sick and we were so scared. We spent Christmas Eve and Christmas morning apart that year. So when the next Christmas of 2017 came around, and we were out of treatment with clear scans and on the vaccine trial for maintenance, we felt like we were on top of the world. We pulled out every single decoration, listened to Christmas music constantly, decked the halls with every Christmas tradition we could muster because we were all together. Charlotte had pulled through and beaten her cancer. That was our hope and prayer.

Similarly with Christmas of 2018, the kids laughed and asked if we were having another “Ultimate Christmas” mimicking my grand pronunciation of it. “Of course!”, I replied. And we did. Charlotte has just successfully completed the vaccine trial. She was still clear of disease after a year off therapy. It was indeed a Merry Christmas again home all together. Christmas time continued to feel even more magical after going through what we had during 2016. And we celebrated with another ultimate Christmas, thanking God all the way.

And this Christmas, I want to feel that way so badly. I want to feel the feelings of what our Ultimate Christmas’s have felt like. I have not been able to get there. I know I’m still nursing a broken heart from when our world came crashing down back in June with Charlotte’s scans showing her cancer returned. Being back in active treatment has devastated Brian and I. And although her recent scans in September reflect that she is responding to the new therapy and that there is no longer evidence of cancer again, our ground has been shaken so badly. Our hope is strong, but it wouldn’t be true to say our confidence hasn’t taken a beating. And so although our Charlotte has done so well, taking everything in stride and is happy, we have scans looming over us again this Christmas. Tomorrow she has an MIBG scan (the scan specific for Neuroblastoma) as part of her routine monitoring. There could be no greater Christmas gift for our family and our Charlotte then a clear scan. And then maybe, with a little bit of Christmas magic, our hearts can be lightened enough for the Ultimate Christmas joy to be felt. The immediate worries and fears cast aside, so that we can embrace another Christmas season together. Another new year. And ultimately continue to regain what this disease is trying to steal. I feel shame in a way feeling this way when there are people who will miss their loved one this Christmas and yet here we are, still in the fight. Still here. Still strong...even in our weak moments of fear and doubt.

Thank you for loving us in our weak moments and in our strong, through our fears and amid the hopeful. And may you all glance around at the ones you hold so dear this Christmas and in the coming new year and feel the happiest Ultimate Christmas blessings from our family to yours. We hope to have results by Thursday. Please join us in storming the heavens for clear scans for our baby girl. 



Children’s Miracle Network and Raleighs 101.5 radio is holding their annual radiothon for Duke Children’s this week. 


And as soon as we walked in the door today at Duke for her MIBG tracer injection, a friendly face that our Olive Chapel Elementary friends would recognize as PoGo Jo was here supporting the fundraiser!


Some fun after our appointment today at the amazing Durham Museum of Life and Science. We have an annual membership here and try to enjoy it as much as we can, especially after hospital appointment days as it is near by Duke Childrens❤️🌈

Comments

  1. ppa1dayatatimeDecember 18, 2019 at 7:34 PM

    Wholeheartedly praying for clear scans for Charlotte XOXO!!

    ReplyDelete
  2. Kevin SweeneyDecember 19, 2019 at 10:09 AM

    Lifting Charlotte up in prayers for clear scans! Love you guys, in our thoughts always.

    ReplyDelete

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