Charlotte's Journey

 We know you all will celebrate this with us— This is THE FIRST DECEMBER since 2016 we haven’t had to brace ourselves and go in to the hospital for Charlotte’s disease evaluations/scans. INSTEAD, Be The Rainbow Foundation will bring holiday cheer-gifts for kids, some treats for the nursing staff, and hopefully a little hope for parents who just need to BELIEVE. Needless to say I’ve had tears in my eyes all week trying to coordainte our visit to Duke in this new capacity this Christmas/holiday season. God is so good. And every single gift and every single dollar has helped us make a real difference to so many families. Thank you all for your continued prayers and support and love Playing with her advent calendar of slime. Charlotte is constantly creating concoctions and polymers and loves chemistry I think! Charlotte and Brian in our town of Apex Christmas Parade this year with her YGuides crew! 2016 Christmas while not only hospitalized but Charlotte had never been more sick. Brian...

  Here is 9. Here is hope, and joy, and grit, and determination, and silly, and grace. Charlotte is full of happy. She is full of imagination,  compassion, creativity, and JOY. You all know how desperately we have needed to visualize her just like this today, and our prayers came true. I get bogged down like we all do with adulting and parenting but I think if Charlotte could truly ask for one gift from anyone, it would be to pause what you think is so important and just go play with the ones you love. Be in the moment with them and soak them in. Everything else can wait. Charlotte’s ask this evening is for us to take her to the pet store so she can pick out a hamster so here we go😂Happy 9th to our baby girl! We know you are all celebrating right along with her/us!

  First of all Charlotte remains CLEAR with no evidence of disease! Second of all it was the “Best scan day ever!” according to Charlotte and there have been so many scan days…but yesterday she got to bring GIFTS she helped to pick out to Duke Children's Hospital from Be The Rainbow Foundation! Thanks to all of you and your generosity, we could help some special kids, their siblings, and parents while they face childhood cancer💕🌈 Thank you all for all of your love and prayers…she gets 6 months until her next evaluation! With each scan, a mountain and a milestone. She will keep going, keep moving forward and shining that light of hers

https://youtube.com/shorts/vb8-dATqrJ0?feature=share I had just finished telling Charlotte I felt a rainbow coming on after her appointments at Duke Children’s today and then one appeared. Charlotte said “Hi God!” I believe she will always feel He is with her and isn’t that a true gift.  The video and photo is from 5 years ago YESTERDAY when we had a party at Duke Children’s to celebrate the END of 18 months of cancer treatment for our Charlotte! While waiting for scans, a musician set up their violin and started playing “Somewhere over the rainbow” right in front of us. So many God winks along our journey to heal Charlotte. We believed it was over but the cancer started to come back almost 2 years after this video. More was to be asked of Charlotte and our family. 5 years is the “magic number” in the stage IV, high risk Neuroblastoma world. That is when they stop monitoring for recurrence. Charlotte is working her way to this 5 year milestone and thank you for praying with us that...

 Well village, the week is finally here. The first time we have gone 6 months since scans and Charlotte will have her Duke check up appointments and scans Thursday and Friday this week. Most of you know Brian and I tread water during these weeks with an indescribable feeling in the pit of our stomachs. It’s not because we don’t believe or our faith waivers, but it’s because of what we’ve seen and done and what we’ve watched Charlotte endure and the fear that maybe just maybe it really isn’t all over. Hope is the only thing stronger then fear.  The last time we pushed scans back even a little was to 4 months in 2019 and the doctors found a new tumor just starting to grow into her femur. It was Neuroblastoma that returned or never died and no one knows where it came from nor where else it might also be hiding. Charlotte beat it back again but standard care is scans for 5 years and this cycle will be 2.5 years off all treatment and 3 years since her scans showed all clear. We are...

I remember the day Brian went bald for St. Baldricks. 2 years to the month later Charlotte would become so sick and be diagnosed. Never could we of imagined he would be doing something that could help fund research that could help our own baby girl. 2 years later, Parker would start his own page for St. Baldricks to raise funds for pediatric cancer research and he too would buzz off his hair in honor of his sister. So when you create your own page for Be The Rainbow Foundation, you are helping others in ways you may never have imagined. We are under way with many people starting their own fundraising page during this month of September in honor of Childhood Cancer Awareness Month. We are starting to get some pictures of hair dares being completed!  We wanted to start a simple fundraiser that anyone could do from anywhere, anyone could customize to their own comfort level and have some fun, and to help us GROW by sharing with all of those in your own social networks. We are under wa...

  September is Childhood Cancer Awareness month and this picture brings back a flood of memories. It was one of the only ones Charlotte let me snap when she lost all of her hair for a second time when her cancer returned. She should have been with her Kindergarten class that day but she was hospitalized for over 2 weeks because she needed high dose chemo once again to knock down what was trying to grow and take her away. It looks like we are having a ball. But my stomach was a ball of knots. She would soon find a hat that helped her find some confidence because she wasn’t 3 anymore and she felt strange without hair. She would also be very very sick for a period of time after this picture as the chemo coarse through her veins, helping to give her a chance to grow up. There was once a time we didn’t have a child with cancer either. Please help us help the children and families who face this. I cringe when someone says the words “rare” in the same sentence of pediatric cancer when I k...

I would of walked on by without a second glance, but Charlotte stopped me and wanted to read this almost hidden poster below at Duke Children’s Hospital today when we went in to have her damaged hearing aids replaced. She has cried a river over getting hearing aids again after an entire summer of not having them. She is afraid she will be different from her classmates and that people will make fun of her. She told me yesterday “Why did I have to have cancer! I hate it! It’s going to ruin my life.” And for a while she resisted me holding and consoling her…a piece of my heart breaking with every hurt sob. On a scale of mild to moderate to severe to profound, Charlotte’s hearing loss is severe. Brian and I have walked her through the power of these aids helping her especially in school but of course she is 8 and doesn’t want to stand out. Brian and I know hearing loss is a small price to pay for what she needed to go through to even be here, but our momma and daddy hearts break watching h...

Brian and I have sat beside Charlotte’s hospital bed more times then we could ever count. Many of the times we were either afraid, exhausted, devastated, anxious, alone. So when it was 100 degrees in the North Carolina heat yesterday, and we got to sit here at a local event helping to share our new nonprofit Be The Rainbow Foundation’s mission and promote our FIRST fundraiser, and just be with neighbors and friends and our towns folk…well I think of all the times we prayed God had a bigger plan in the making then we could of ever imagined. And this is all part of it. Hoping to help shoulder some burdens, keep families together, and bring them HOPE through Charlotte is what we are all about. And we see and feel you all right here helping us do just that. We are so excited to announce the HAIR DARR CHALLENGE FUNDRAISER to benefit Be The Rainbow Foundation’s work! Please click on the link for all the info and please help us by joining in and/or sharing! Thanks everyone! https://betherainb...

“People will forget what what you said and forget what you did, but they will never forget how you made them feel”. Yesterday, Charlotte was having ear pain along with head cold symptoms so off to the pediatrician we went. There was a nurse there helping out for the day from Duke Children’s Hospital and she REMEMBERED Charlotte from her time with the pediatric surgical team. Charlotte has had 7 surgeries during her time in treatment over the years at Duke and this nurse was helping out in the OR during one of Charlotte’s surgeries. I thought about this on our drive home and how could this nurse who sees thousands of kids remember our Charlotte and her name? And the Maya Angelo quote above rang out to me. Later on when we got home, 2 of Charlotte’s best friends rang the doorbell with get well cards they made her. Charlotte will never remember what they say or even that they did this…but she will remember the way the people she has in her life makes her feel. I believe we all do. The imp...

 Quick update but more soon—3rd GRADE here she comes! Fresh off the beach with sun kissed freckles and sweetest giggle you’ve ever heard. Wearing a bracelet that says Keep Going sent from some special person in our village. And keep going she will! Have a great first day Charlotte! We love you soooo much. And as always we feel you prayers for our sweet girl! Keep them coming please🌈❤️Thank You God

  We are off and running!! We have been able to help families by assisting with lodging, flights, travel expenses such as gas, meals, and specialty items such as collapsible wagons which help families in a variety of ways when they come for hospital appointments. We are sponsoring Panera breakfast once a month for families in patient at Duke Children’s hospital. And this past week, my heart was heavy when we helped a family bury their 4 year old little boy named Isaac who was fighting ALL, We were able to help alleviate some of the financial burdens this sweet family was facing. Do you know how much it costs to bury a child? $4,000. We have all seen the prices at the gas pumps, grocery stores, and perhaps airline tickets. These realities are especially hard for these families facing childhood cancer. And so here we are, trying to fill in any cracks and gaps as we are able. In any way we are able. And we are able because of YOU! Because of your generous gifts and donations helping u...

 We are excited to say we have begun working and helping families! We are able to start helping to ease the burden for some pediatric oncology families we have been connected with through social services and family support organizations. A few things we have been able to help with include travel expenses for families traveling for treatment, meal assistance, and some specilaty care items such as this collapsible wagon. I wanted to share this story with you all below, along with an updated picture of our family this Easter❤️🌈Thank you village! Thank you for coming along with us even further on this journey Sharing a full circle moment with you all. Some may remember Charlotte’s red wagon days. She was so sick. Just started chemotherapy. She shut down and wouldn’t walk and would hardly eat or speak. But a ride in the wagon seemed to not only bring her back, but help me feel like a stroll down those hospital halls might one day lead us to a stroll home with a happy and healthy Charlo...

6 years ago today  Posing during clinic today Charlotte sharing her news Just when we thought the news couldn’t get any better, village.  1. Charlotte’s scans are clear! 2 years off treatment for relapse and she’s still clear. This is a huge milestone! 2. Both Duke and MSK have approved Charlotte to move out to 6 month scanning intervals for the next couple years. This is a huge milestone for her specific Neuroblastoma diagnosis (remembering she was placed in the highest risk stratus and stage IV with a specific gene detected in her tumor that they shared is associated with the poorest outcomes, and with a relapse giving her an even worse prognosis but of course we never liked talking much about that). Take that cancer! As I shared, this is the week Charlotte was diagnosed 6 years ago. This picture below we took 6 years ago this morning as we got ready to send her in for her tumor and bone marrow biopsy and central line surgery placement. She would start chemotherapy tomorrow ...

  It's scan week AND the anniversary week of her diagnosis, village. Here is a special video from Charlotte. It was this exact week 6 years ago, after being admitted to the pediatric oncology unit at Duke, that Brian and I received our first gift of many from a special charity. However, they had formed their charity to help families like ours in memory of their daughter who had lost her battle with cancer. I remember looking directly at Brian, anguished and scared beyond belief, but I said these exact words "We will do something like this one day but we will do this WITH Charlotte because she is going to survive this. And will will give back and help others somehow and some way not to honor her memory, but along side of her and show the hope that we need to see right now ." I said that because I needed to believe that. It was the only fuel I could find to get us through those days and the hundreds that followed. And here she is. Right next to me making a thank you video f...

F or all of you who have loved and cared for our family over the last 5 years while we helped Charlotte battle her cancer, we are proud to share with you our special news! Brian and I have started Be The Rainbow Foundation, a 501(c)3 nonprofit, focusing on supporting families facing childhood cancer. We are so blessed to be in the space and time to give back and help in any way we can. And as always, we are so grateful to have all of you with us, helping to truly make a different for families facing the unimaginable. Stay tuned for more information as we begin and kick off Be The Rainbow Foundation! For now, like us on Facebook @betherainbow.org, and visit our website www.betherainbow.org to follow our work and to donate! Thanks for sharing and helping us grow our village! (feel free to share the donation page as well https://betherainbow.networkforgood.com/ ) Thank you GOD for this day, this season, this opportunity, and all the things yet to come.

Today is International Childhood Cancer Day. I wanted to reach back to where we were during treatment during this week as compared to where Charlotte is today. 5 years ago, we were in Philadelphia for radiation treatment where she would undergo anesthesia daily for a month of proton beam therapy. Aside from being away from our home and family, it was the easiest phase of treatment. Imagine that. Imagine this being the easiest part—living in an unfamiliar city, away from your home and family, being put to sleep daily for 4 weeks so that a beam of radiation would target the correct spots. But back then her dreams were heartbreakingly simple. She dreamed of not having to have anymore “medicine” for her cancer, of going home, of going to school with her siblings and friends, of not hurting and feeling sick anymore. Today, her dreams are still simple like an 8 year olds should be, but they are bigger too. She dreams of a future beyond the world of cancer as she understood it. What if we cou...