Charlotte's Journey

 I’ve struggled posting this update: For those who have been praying for Elijah, he passed away early Christmas Eve morning, after fighting the bravest fight for 5 years. His cancer progressed with vengeance. He was taken off the trial and brought home, where he could be at peace surrounded by all his siblings and his parents until God called him home. His mother Samantha’s faith has inspired me over the years. To do what was asked of this family is unthinkable and yet she still has the most gracious faith. I will forever be changed by witnessing Elijah’s journey through his mother’s narrative. I know Elijah got to be with Jesus for Christmas and I pray that God helps guide us in our mission to help families just like Elijah’s in whatever way we are able. Thank you for lifting this family in prayer

 Charlotte’s scans are CLEAR, marking the farthest out from therapy she has been without reoccurrence. I didn’t want to put this out into the universe in words, but her scans today were at the identical interval that we found out she had suffered a relapse. Not today cancer. Not today. And not our baby girl❤️🌈Thanks for your loving prayers everyone—we felt every single one. Thank you GOD for this day and now we can focus on the JOY of Christmastime. #charlottestrong

I hesitated picking up the phone this morning, but something told me to. Although Charlotte’s been having scans during every December for the past 5 years, this December interval remains the hardest one for us. Partly because we are trying to remain in the Christmas spirit while also balancing an enormous amount of anxiety. Those 2 are like oil to water. How can one exist inside the other? So we try to do some of the things we do best—we keep SUPER busy, we pray, we put our brave and calm faces on for our children, and we let God in. So I listened and I picked up the phone. It was our pastor calling to pray for Charlotte’s scans this week and for our family. I want to run and hide sometimes, but then how can I let God work in my life and help us fight for Charlotte by doing that? And so the birth of something very special that Brian and I have had on our hearts for a very long time has happened. We have started a 501(c)(3) nonprofit, Be The Rainbow Foundation, to help support other fam...

 This little light in the world is 8 today. As I glanced at her very first picture in our arms, and her very first birthday pictures, I was reminded of all the hopes we held in our hearts for our baby Charlotte. We could never know the road her life would take us back then of course, but those hopes still remain fierce and strong and POSSIBLE. Thank you God for gifting us this special soul to raise and to love. She continues to make every day of our lives more richer, more meaningful, and more joyful. I know you all celebrate every single milestone with us and thank you for loving our Charlotte. Happy birthday sweet girl! We love you so

If you ask a child “What would you like to be one day?” You might expect them to answer with anything other then “An adult.” But that’s the reality of 1 in every 285 children who will be diagnosed with cancer before their 20th birthday (ACCO.org stats) Will you help us, village? It seems rare and far removed, until it isn’t.  Have I ever shared that one of my best childhood friends, whom I grew up with throughout middle and high school AND roomed with for a year at Virginia Tech had a son who lost his battle with Stage IV Neuroblastoma few years before Charlotte was diagnosed with the same disease? In fact, one of the reasons I went into a physical state of shock when Charlotte’s official diagnosis returned was because I knew that word, Neuroblastoma. I knew what it was because I watched Trevor fight Neuroblastoma through his own carepage that his family would update. And I knew he fought so hard but gained his angel wings anyway. I literally hit the floor in shock and anguish when...

When we began this journey, Charlotte was but only 2. The 5 year survival rate for her high risk, stage IV diagnosis was 6 out of 10. Line up 10 Charlottes and 4 wouldn’t make it 5 years. In addition, the relapse rate was 5 out of 10 would have disease reoccur. Half. And Charlotte fell into that half in 2019. I have never, could never have asked our doctors of those kids who relapse, what are their chances. And that’s because Brian and I believe that number is changing drastically with new advancements in therapy, specifically the immunotherapy she has received. I did learn however, that in 2016, the year she was diagnosed, relapsed Neuroblastoma actually had a less then 5% chance of survival.  I know statistics like that could keep us up at night but they DO NOT reflect Charlotte specifically nor all the treatment she has received. I don’t for one minute believe there is a number that would reflect Charlotte. And I still hang on to what Dr Sun told me on day one, when I was litera...

Waiting is painful, but our oncology team spared us a tough weekend by sending me a message before they left for today—the official radiology report has not been released as they still need the attending to sign off on the initial reading but thankfully they could let me know that the preliminary results were good—no evidence of disease. Most of the day we walk around feeling sick while awaiting the news, and that is something that’s never going to change I’m afraid. It’s just all part of this. And no matter how much confidence and belief we have that she will remain clear, nothing can remove the sickening feeling we walk around with until we know for sure. The fact that they were able to extend us this kindness today is a true mercy. About to go sip a glass of wine with Brian by the fire pit and EXHALE. We wanted to let y’all know as we sure appreciate each and every one of you pulling so hard for our girl all this time. We believe the official report will return by Monday backing up ...

 First of all, I have had issues with this blog and I understand it will no longer notify those who have subscribed to follow Charlotte's care page when there is a new post. I am in the process of figuring this out and potentially change some things. Secondly, CHARLOTTE IS DOING AWESOME! She has routine scans tomorrow. She was seen in clinic today and besides one area of concern with extremely elevated ferritin levels (basically iron overload likely from all the blood transfusions due to treatment), her labs and check up look great. She will have an additional image taken of her foot because she has been complaining of pain for a couple weeks now on and off--likely just an injury from all her running and playing, but they like to leave no stone left unturned. We have an early morning tomorrow with both scans and audiology check ups, but I will update  with what we believe and pray will be CLEAR scan results as soon as I am able. We have so much to share and catch everyone up o...

Buying time. There are many parents being told that they are just buying time. Their child's cancer continuing to remain or grow despite treatment. They are left with difficult decisions to make regarding which treatment could benefit without doing tremendous harm. Quality of life decisions.  Trying to answer the question of what gives them a good chance for more time without causing damage that would shorten their time or impact the precious days that remain. As I write this, parents are hearing those words, sorting through those decisions and the grief that accompanies. There are two in particular. I have grown attached, my heart pulled towards both Elijah and Beckham. I have written occasionally about Beckham, but not as much because his family is a bit more private and shares only on occasion. Beckham is 11 and very close with his sister Navy who is just about 1 year younger then him. I spent some occasional time with them while at MSK over our time in treatment there, but it i...

 Charlotte’s scans remain CRYSTAL CLEAR❤️🌈Before we knew results but after our appointment, we blew off the rest of the school day and grabbed a mocktail 😆 and lunch and explored just a corner of the beautiful Sarah P. Duke Gardens next to the hospital. Charlotte loves bamboo trees and she found a forest of them along with a pond full of wonders. She collected some treasures and we carved our names and wandered amid the beauty. God is so near when we stop to try and feel him. Praise the lord. Our baby girl will keep going and keep moving towards the direction of our prayers. Thank all of you for your love and support and prayer! More to update very soon!!

 It’s scan week. If I could bottle the confidence this one often has and drink it during this week…. First scans off clinical trial and all treatment.  This picture was snapped while we took the vacation we had planned to take right before Charlotte relapsed. We swept the kids and Brian’s mom away to Atlantis in the Bahamas over a long Mother’s Day weekend and had a complete blast. We had to navigate through international covid precautions and not everything was up and running necessarily as they were keeping numbers low at the resort, but we just felt like we needed to GO and celebrate like we always wanted to do. And when I look at the bubble of hope and energy that runs around before me, the full of confidence sweet heart of a child in this picture, it’s impossible to believe she can be anything but well and fine. But we need prayers that her scans continue to be clear of any evidence of neuroblastoma. We are not naive, but our hope transcends our fears. And we feel each of...

 I have some updates of our own but for now I wanted to write this quick update on Elijah as some of you have been asking.  How amazing it is to see the scope of care that has been extended from our village to him. Anyone who has followed most if not all of our own Charlotte’s journey knows the yo-yo one can be on going through this. But I’m not sure I’ve ever seen a family go through as much uncertainty and bear the burden with as much grace as Elijah’s. The recent scans came back so hopeful as they were not what they expected them to be. Instead of showing progression and major metastasis, they showed minimal disease and stability. The family was in shock and felt a miracle could be happening. And maybe it still is...but his mom has reported that the tumor in his jaw is now growing back and fast. They can visibly see it again. His Neuroblastoma has been stubborn and they fear it is resistant to the existing conventional therapy. They have decisions to make that I cannot even...

It felt like we’ve been asked to walk across a tight rope without any training or practice. The expert tightrope walker says to us before we walk across, “Here is an extra rope. If you take it, should you fall then it could save you. But, if you take this extra rope then there is a chance this rope could make you sick and cause you great harm. You might not even need this extra rope at all because you might not even fall.” Furthermore, when we ask this expert tightrope walker what would they do? They answered “no one can know the right answer. No one knows your outcome.” I’m only just now able to sit and update. Things haven’t been sitting so well with us after the sudden decision required by last Friday and the enormity of it. I think I can speak for Brian as well, but this was the hardest decision we have had to make. Most of our other decisions up to this point seemed intuitive. They may have been hard, but they felt right. But deciding whether or not to enroll Charlotte on this cl...

The past 36 hours have been unexpected. Yesterday afternoon, Brian and I had a remote conference with Dr. Sholler who runs the DFMO trial out of Levine Children’s in Charlotte NC. This trial is aimed at a 2 year oral medication to help during maintenance called DFMO and has been studied for quite some time. The current trial that is open has added an additional low dose chemo in oral pill form called Etoposide. Charlotte’s had etoposide several times already during treatment and this dose would be a much lower dose for 3 week cycles for about 6 months. Then continued oral DFMO foe remaining 2 years. Some extra evaluations would be required (2 more bone marrow biopsies when we hoped those were all done) and some extra MIBGs. Here are the issues: 1.Charlotte would be the first ever on this trial out of the Neuroblastoma Vaccine study. They do not know how kids who have gone through vaccine will respond to the etoposide. Will the supposedly slight immunosuppression from chemo combat all t...

Today, Charlotte swallowed her FINAL dose of medication that accompanies the year long investigational clinical trial she has completed not once but twice now. (She has been swallowing a very large volume of a very viscous solution for 14 days in a row every 2 weeks on and off for a full year. Many cannot hardly stomach this but she has always taken it easily and has even shared videos of herself swallowing it for other children on this study who struggle in an effort to help and cheer them on).  Charlotte’s first grade school picture came in recently. Her Kindergarten school picture shows a timid and uncertain little girl straight out of chemotherapy and radiation, who was proud that she made it to school after her world was flipped upside down once again. Her first grade picture shows a confident and self assured little girl who is still proud to be here, thriving and blossoming. Brian wisely told me once how the things you don’t want to happen in life happen very quickly, wherea...

 Good morning village: our friend Elijah could use your prayers today. After his 3rd relapse with Neuroblastoma, his disease is progressing despite treatment. Tumor has infiltrated his jaw. He is having a scan this morning to determine the extent of disease but his family is reporting their greatest fear—that his cancer could be resistant to treatment and that they may be running out of options. Elijah and his mom recently came from their home in Ohio to Charlotte, NC for new treatment options, with a brand new baby brother whom Elijah adores more then anything. My hope and prayer today is that the scans and their new team of doctors here who specialize in precision therapy that targets tumor genetics, can find a way. That Elijah’s journey is partly to make a way. That there would be therapy to slow down this progression while still allowing for a good quality of life and TIME for a cure to be developed as there is so many new and exciting advancements happening. That his parents d...

Joy and Pain in this moment I want to update all of you who have been loving our family and cheering for our Charlotte all this time, but I am having a hard time writing this. (We have returned from MSK where Charlotte received her 7th and final NB vaccine shot on this clinical trial, had 4 bone marrow biopsies (returned clear), and met with survivorship team for tests and exam and to establish care for long term follow up appointments.) Yesterday, on the same day that our Charlotte received what we pray was truly her final cancer therapy treatment, our Poppy took his last breath while holding his wife’s hand. We loved this man so so much and there are just no words at this time that can be said as we try to process this sudden and unexpected loss of our stepfather, father-in-law, and grandfather who was such a special soul and presence in our lives. Neal and Schuey have been here supporting and holding us since diagnosis and now, it’s our turn to hold them close and surround Nana Schu...

 Quick update to let you all know that Charlotte remains CLEAR with no evidence of Neuroblastoma! Now that Charlotte is growing older amid all of this, one of the truly special and remarkable parts of has been watching her reaction when we tell her the news. She can genuinely feel the joy I think because she knows some of what it has cost her to get this news. She immediately beams that smile and seems to light up. Although Brian and I try to never let the children see the weight this is on us, the worry, the fear, she feels it too. She wants this to be behind her too. She asks us what will happen if her scans showed that the cancer has started to grow again. We tell her that we would fight it off once again. That we would keep fighting it off. And honestly, that is what we are doing right now in this clinical trial. So now we turn towards NYC and trying to find a way or MAKE a way for her to keep having access to what could make all the difference not just for her, but for so many...

 Starting today, Charlotte has some big appointments. We start off at Duke for 3 scans over today and tomorrow for her routine disease evaluations. Then Sunday, we leave for NYC for appointments there. She will have a 4 location bone marrow biopsy and the 7th shot for the Neuroblastoma Vaccine trial. We actually do not know if we are wrapping up this trial at this appointment or if she will be offered a continuance as we hope and pray for. Charlotte is doing amazing but she is still in the window for reoccurrence and we want to do everything possible to help continue to keep her clear. So, my anxiety is at a high as we await what will be possible...of course we need these scans to be clear first. I wish we felt at peace and could welcome the finality of finishing this clinical trial once again. But we simple do not and cannot. We are also under discussion about arranging a consultation with another Neuroblastoma expert who has just relocated to Levine’s Children’s hospital in Charl...

How we feel, captured so perfectly by I Draw Childhood Cancer Charlotte and Parker's first day of second semester virtual school: 1st and 4th grade Hi village. I’ve really missed writing about our amazing Charlotte and her journey, but at the same time, I felt like I needed a break. But now, here we are again, in the place we prayed we would be again. And it’s terrifying. In just a few weeks, Charlotte could potentially have her FINAL dose of cancer treatment EVER. One would think this a great celebration. A great sigh of relief. She made it! She beat it back and remains clear of disease, the treatment working. She is finishing a promising trial for maintenance. She is here and she is thriving! Celebration time! And yet, we are terrified and feel somewhat frozen instead. Brian and I feel strongly that further maintenance therapy is needed especially in children like Charlotte who’s cancer returned after all of that intense treatment. Neuroblastoma has a large window of 3-5 years af...