Charlotte's Journey

 JOY TO THE WORLD! Charlotte’s scans are CLEAR of disease. When I told Charlotte, she said “Did I do a good job laying so still mommy? They weren’t blurry?” Oh sweet girl you did amazing and they were perfect🥰. We are feeling the wonders of His love and grace this Christmas. We know there are many suffering in this world through one thing or another...so if we can shine a little light, spreading some hope and faith, then maybe we have a gift we can share. God bless, happy holidays, and Merry Christmas!❤️🌈🎄🎅 Joy to the world! Merry Christmas! Charlotte’s best neighbor buddies that I mentioned in yesterday’s post, Reid and Isla. They are such blessings in her life and she sure loves them so.

 Charlotte has hit a huge milestone, village! She was able to have her MIBG scan awake and not sedated! This is a very long scan that takes about 90 minutes and she must lay completely still or else imaging is affected. There are times where the camera comes very close to her face, but the majority of the time she can turn her head and watch a movie! What this means for her is that going forward, she will be able to eat and have zero recovery that influences the rest of her day! One of her motivators, besides getting breakfast, was knowing she could go outside and play as normal without restrictions that are in place after she’s been under sedation. She said “So can I stand up on our web swing with Reid and Isla?” That’s right baby girl! Her love for playing with her favorite neighbor buddies has motivated her❤️These kids play either at recess or after school on the daily🥰She is rocking this!  As we celebrate this milestone, thank you for sending up those prayers for clear scans! Than

 Charlotte is here at Duke Childrens, drinking her contrast for her CT scan, and being a sweet goofball on Snapchat. We wanted to share that Duke Childrens is having their annual radiothon today and tomorrow! If you are able to donate via this link or text Dukekids to 51555! All proceeds go to helping this hospital make a difference for so many children and their families. We are forever grateful for the care and child life and family support services we’ve received.  Charlotte will have CT and MIBG over today and tomorrow. We hope and believe results we are praying for will be in sometime on Thursday and then we can truly take a breath and feel the peace of Christmastime. Thanks for praying for our baby girl this week.❤️🌈 https://giving.dukechildrens.org/events/radiothon

It was a bittersweet day, village. Our warrior had her hearing aid molds made today and picked out her colors. She chose nude to blend in with her skin and hair color as she decided she did not want it to stand out. They should come in next month. The good news is her hearing loss has stabilized! The aids will help her not work so hard at hearing the higher pitch/frequency sounds as well as language when there is background noise and now in today’s world: masks. She loved learning that they will be like her own AirPods as they have Bluetooth! She will continue first grade virtually for the remainder of the year, as will her brother and sister. Brian and I debated all the pros and cons for quite a while before the deadline to decide smacked us upside our heads today. In the end, we decided we have the opportunity to allow Charlotte’s immune system to FOCUS on the immunotherapy that this Neuroblastoma vaccine trial promises. We can help try to keep her immune system strong and focused on

We are lucky. I’m writing this update while watching Charlotte swim. She is so happy swimming. She is taking lessons to improve her swim strokes and learn skills so she can be on a year round swim team. This is her goal. Between cancer and CoVid19, her goals were put on the backburner at times. She has had to miss a lot of tender Kinder and first grade school moments as well as many of her favorite activities. She is not alone of course. So many have paused their own goals or plans because of one thing or another. And COVID has disrupted and complicated everyone’s lives in various ways. We know to count our blessings though...we know well enough to just be GRATEFUL we are all together and happy and healthy TODAY, in this moment in time. And yet, I shamefully admit, I feel like I have started complaining a lot.  It’s as if I joined some kind of band wagon I didn’t mean to join, absorbing the climate around us all. It is not hard to feel it. There is ALOT of negativity in the world right

 It’s both uneasy yet nice to not have a lot to update on with regards to Charlotte. What spurs me to write this update involves someone who has been laid on my heart:  These days if Charlotte isn’t singing a song, she’s skipping around humming or sitting somewhere sketching or outside riding her bike or playing in the yard with friends or her siblings, or maybe she’s creating some unique craft from her imagination. Her world right now is as we prayed it would be. In this moment, she is a happy and vibrant and healthy first grader. Elijah’s world was once how his parents prayed it would be. But this beast can come back in the night and rob them of a childhood. He is fighting so hard but he is going through a tough time fighting his recent relapse with Neuroblastoma. The new tumor is pressing on a nerve behind his eyes affecting his vision. He is having a hard time seeing even inches from his face and suffering some other side effects from both current treatment and this disease. His co

 This will be short and sweet but I’ll write more soon I promise! I’m sorry I have taken a break but your girl Charlotte hasn’t! She’s been living life like a 7 year old should! That’s right her birthday was Oct 18 and she’s SEVEN! We have been busy juggling virtual remote learning along with, well, life!  She just returned from around 6 of 7 of the vaccine trial at MSK as well! You guys....she looks so good. She feels so good. She is growing, and learning, and just HAPPY.  Praise God! We know not to take a second of it for granted. Let me come back to write much more soon.  Thank you for keeping her close in prayer you all...they are working and we still need them❤️🌈#Charlottestrong

For the final day of September’s Childhood Cancer Awareness, I wanted to share one of many tough memories. Today, last year, was another hard and scary day. It was Charlotte’s first day of a new specialized immunotherapy called 3F8 she received for her battle against relapsed Neuroblastoma. Today, I want to tell her it’s all over. Today, I want to tell her she’s d one fighting and her cancer is gone forever. Today, I want to tell her she will never go through painful treatments again. Because of so many of you out there, those statements are becoming a reality! Amazing new therapies have given her a real chance. But I can’t tell her any of those things today. We have always told her a simple truth. Her simple truth is that we believe she will overcome and beat this damn disease but her r eality is she needs help. She needs cutting edge maintenance therapies to help her body, specifically her immune system, to fight any lingering, residual cancer cells that could be hiding, stems cells

https://youtu.be/_aBupb3Q7Es Charlotte has happy news to share❤️🌈Thank You God!! She gets school. She gets to go camping. She gets her birthday in October. She gets Halloween and Thanksgiving. She gets to play with her siblings and friends and be home. She gets to keep going, keep moving forward.  Thank you thank you. She knows you are praying for and loving her. She knows you are celebrating with us. We try to help all of our children understand the love that is surrounding us while we witness God’s grace. Thank you for being part of her story. 

So proud of our sweet girl as she decided herself to have both her CT and MRI today without sedation. She did beautifully! The MRI images her head/brain and she must lay still with her head enclosed in a vice so she doesn’t move it. The machine is very loud and the “tunnel” has scared her in the past. But today she made the choice herself to stay awake and happily laid there for the 40 minute scan (and was able to watch some of a movie during it too🥰). The CT (picture above) is quicker and over in minutes as it images her chest, abdomen, and pelvis. Tomorrow is the long MIBG scan which she just hasn’t wanted to try awake yet. For all these scans, Charlotte’s little body is flushed with toxic chemicals and radiation every few months for the necessary imaging, hurting our hearts every time. Today, she received contrast for the CT, contrast for the MRI, AND a radioactive tracer injection for tomorrow’s MIBG, thankfully no sedation narcotics. Scan toxicity is a real concern for these kids

Our sweet girl helping BOP❤️🌈Thank you so much to those who have already donated to this special group who has helped fund research that has directly impacted our Charlotte! And thank you for all for your support and prayers this week and always. Charlotte has scans Tuesday and Wednesday this week. We feel surrounded by hope and faith in that she will keep going, keep moving onward towards complete healing. Thank you for sharing the video to help fund important research that can and is saving our baby girl and many other children. (link here too https://vimeo.com/457764895) Band of Parents  video link

This year, in first grade, Charlotte was asked to write about a time where she was hurt. When I heard this, I quietly walked over to see what she was going to write about. I wondered which of the countless moments she would choose. There were so many and with every single one, me and Brian’s heart would quietly break. Those breaks can never be fixed of course but we patched them up when we could and moved on. But not Charlotte😊She picked up her chunky pencil and wrote about dropping a heavy object on her toe which made her toe nail purple. She then drew a picture of the falling object landing on her purple toe. I don’t know what she remembers or what scars are left that we can’t see. But I know when she was asked to write about something that hurt, she contemplated the time she fell of her bike or the time she jumped off the bed and hurt her ankle, ultimately choosing the purple toe story instead of countless others I can recall during her fight. I know I have shared my fair share of

 Every victory from one of the children we know who are fighting Neuroblastoma feels like a victory to us all. And every set back, feels like a gut punch to us all. There is a family with a little girl named Nori, who is so much like our Charlotte. First time we met her, back in 2017, she was always wearing her Snow White night gown and dancing. She too just started first grade after fighting relapsed Neuroblastoma. She too runs around happily while playing with her sister. She too grew back her hair a second time and healed from more treatment. Her laughter echoes through her parents hearts, just the same as our own children’s, just like your children’s echos in yours. And now they sit in fear as a new spot was found on her scans after several years of clear scans again.  Every victory feels like it could be our girl too. But, in return, every set back can fuel and fan our own fears. I look at this happy, round, pink cheeked, sweet face of Charlotte’s and I think “how can she be anyth

 Just weeks before Charlotte’s diagnosis, I snapped these pictures of our silly 2 year old girl including one where she was proudly wearing her potty training underpants. I have come back to stare at these from time to time, trying to see any signs of cancer or the mass in her abdomen that would soon be discovered. She started to have unexplained abdominal pain and constipation, as well as lethargy and paleness. The blood work showed anemia and our pediatrician used terms like TEC and viral causes that could be causing a temporary condition of bone marrow suppression and kept pushing Miralax to help with the constipation. Meanwhile, our girl suffered as the cancer began to grow and spread uncontrollably, silently. I carried her everywhere, she became too weak to play for long and slept more then normal. We went to our doctor every week for over a month for follow ups. Her belly started to distend.  At one point during all the repeat follow up visits, our pediatrician drew further blood

 September is Childhood Cancer Awareness Month. Go GOLD if you can on your social media page, or by spreading awareness in any way you can to help support the missions of many amazing organizations who help create the funds needed to fight pediatric cancer and help support these families in their time of need. Help honor our Charlotte, those who came before her, those knee deep in their fight, and those who have yet to start their journey...for your own child, grandchild, friend of your child, niece or nephew. No one is safe from pediatric cancer and we can’t fight alone. Thank you for helping us village. We have been surrounded by so much help, so many blessings and opportunities while on this road to heal our baby girl. We are pulled and call to give back in small ways As well as hopefully big ways in the future. #charlottestrong

 13 years ago, a group of parents, just like Brian and I, felt helpless and desperate. They asked the Neuroblastoma doctors at MSK what they could do to help their children. That’s when these parents banded together and formed The Band of Parents. They have helped fund what we are praying can help cure our Charlotte: 3F8 immunotherapy and the neuroblastoma vaccine for maintenance. CoVid19 has hurt fundraising efforts. So, Charlotte was asked to help. We sent this video for them to use in conjunction with other children who have benefited from the research they helped fund now for over a decade. They have also helped house us and many others while in NYC (Manhattan) for treatment. Unfortunately, the cure for cancer is....money. Advancements would not be possible without groups like this because federal funding is very limited for pediatric cancer research. Only 4% a year is allocated, which leaves researchers looking for help. I try to imagine sitting in the hospital like they did back

Today, we won the coin toss. Charlotte’s bone marrow biopsy has returned CLEAR! And I realized that this year, she gets to start school, precious first grade, with no evidence of disease. She has full scans Sept 8-9(MRI, CT, MIBG) for her routine surveillance, and her next injection for the vaccine study is end of October, but for now....for now she gets to be 6 and enjoy life. She gets to have the end of her summer full of endless playing and lots of swimming and get to just be. We get to breathe and relish in what feels like God's grace for a few more weeks until we hold our breaths for scans again. I realized recently how to put something I feel into words. You know when you toss a coin? It flips in the air until it lands and you never know which side will land up. Its 50/50 heads or tails. Brian and I live in that space where the coin is flipping in mid air. As it approaches landing, our insides clench and our hearts feel like they are beating outside of our chest, and we simul

“Keep going. That’s all you have to do, ever. You really don’t have to be amazing or fierce or beautiful or successful or good. Just keep going. Slowly is fine. Crawling is fine. No feeling is ever final. Except hope.” -Glennon Doyle Her remarks spoke to me on so many levels. Maybe they speak to you and so I’m sharing them. And the good news from us is that Charlotte keeps going, keeps moving onward, forward. And I’ve stopped worrying about the pace because slowly, as it turns out, is just fine by us. We just arrived in NYC today for her round 5 of 7 for the Neuroblastoma Vaccine for maintenance trial. We flew this time and that went very well. We are still staying at a nearby hotel arranged by the Band of Parents as RMH is still not accepting new families. Both of us went in today for COVID testing (or as Charlotte calls it “tickling our brain”🤣). Tomorrow she will receive her 5th vaccine injection and then Wednesday she’ll have a 4 location bone marrow biopsy for routine surveillanc

Our week at the beach last week started less then perfect, stormy with chilly air and rain but rainbows, sun, and warmth soon followed. For Brian and I, it honestly could have been a tropical paradise for all we knew because this year we truly were able to relax and unwind and soak up the glorious news of Charlotte’s scans showing no evidence of disease (NED)! Our perspective forever altered for the better amid a very hard year. Then today, a memory popped up from my phone with pictures reminding us of today just one year ago...today was Charlotte’s first day back in treatment. My heart stopped when this memory came up today. We’ve been on cloud 9 I forgot today was the day. I’m not sure how I even found the words to write below the pictures I had snapped at the hospital as Brian and I were so devastated and afraid. We didn’t know what this year would look like...would her cancer progress with vengeance like relapsed Neuroblastoma can do, would she respond to treatment and fight it b

Charlotte’s scans are CLEAR! No evidence of disease🌈❤️We waited all day for the call and  the agony of waiting is impossible to describe but I write this update with my heart still beating out of my chest! We are so grateful for this moment and this day and for all of the love and prayers. Our sweet girl gets a summer. Our sweet family gets a vacation at the beach next week to really just BE...be together, be at peace, be with family, be truly JOYFUL. Oh thank you God #familystrong

Scan week is here. Because of COVID restrictions in place, only one parent can accompany Charlotte for her appointments. Usually we have a clinic appointment the day after her scans to go over the results with her doctor, but the anxiety of me doing that alone has built up and thankfully our Oncologist let us flip her schedule and do her check up first and instead receive a phone call later today or sometime tomorrow with scan results. Yesterday, after her radioactive tracer injection, we spent time with child life at the MIBG scanner learning more about it with the hopes Charlotte could work towards having this long 2 hour scan done without sedation and lay there to watch a movie instead. It’s a long scan and she is strapped down and unable to move or else they will have to repeat it so for young children this is very daunting. Today, she chose to be sedated again and so we will keep working towards this one baby step at a time. I can’t tell you in any known words what emotions we

We made it❤️🌈It’s safe to say this school year did not go as we had hoped. Just a few weeks before the first day of school, Charlotte was diagnosed with relapsed Neuroblastoma and our world came crashing down. She was thrown back into treatment...more chemo, more radiation, a new immunotherapy we had to travel over 5 months to NYC for. We juggled school and activities and home life best we could among the appointments and scans and travels and side effects and fear and worry. Then COVID further complicated the world and everyone’s lives including ours. Yet....we saw our children somehow BLOSSOM amid it all. Taylor shined and has graduated on to middle school. Charlotte mastered all grade level expectations and received a “Class Hero” award yesterday at her virtual end of year K celebration as she taught everyone what hope and determination could do. And Parker...who is still his happy go lucky, sweet, charming, bright and happy self excelled and finished 3rd grade strong! Of course, w