Charlotte's Journey

We have a clear scan! Her MIBG showed no uptake; no evidence of Neuroblastoma. She keeps going, keep moving y’all. And Brian and I can actually take that deep breath and feel the joy of this amazing season. Time to celebrate another “Ultimate Christmas” as we thank God for ALL of His gifts. We will spend Christmas home and ring in the New Year together before Charlotte and I will head back up to NYC in early January for round 4 of 5 of 3F8 immunotherapy. Her next set of scans will likely be in early March after round 5; upon completion of this treatment and it will entail a full work up (another MIBG, CT, MRI, 4 location Bone marrow biopsy). But for Now, it’s Christmas fun and all the magic of the season. We continue to thank all of YOU and continue to be humbled by your love and support. Merry Christmas! https://youtu.be/V2QJXxzAi9E

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 succes

After waking up at 5am on Saturday morning burning up with a 103 degree fever and we treked in the bitter cold, 5 blocks to the hospital for her to be seen for the fever protocol, Charlotte was unfortunately feeling pretty bad the rest of Saturday when Brian and the kids arrived. She stayed in the room to ride out her fever and had a restful day while her siblings enjoyed some of the holiday festivities at the RMH. We played family games in the room and watched a movie and let her recover. The fever was likely from the treatment and so by the next morning she was feeling so much better! Therefore, Sunday we got to go out and enjoy some Christmas time magic in the amazing New York City all together. We took in Rockefeller Plaza and the beautiful tree, the LEGO store, some special store front Christmas displays, and ice skating in Central Park. It was a special day and although Charlotte wasn’t 100 percent (primarily having a huge suppression in appetite), we soaked up the time here to

Round 3 of this treatment is over. She did so good❤️🌈It is a blessing to be here but we cannot wait to be home. We saw a beautiful picture today of our little hometown of Apex, NC all decked out now for Christmas and as amazing as NYC is, there’s no place like home for the holidays. However, our HOME is coming HERE tomorrow! Brian and I decided to bring the kids here for the weekend so we can have some magical Christmas time in NYC all together, with the hopes our baby girl is up for it. When we can, we like to make lemonade and memories. You’re prayers life us up. Keep them coming you all. #familystrong #charlottestrong Charlotte has met Santa 3 times so far this week and so it’s safe to say he definitely knows what’s on her Christmas list😆Macy’s Santa came twice! The RMH is continuously having special events here all month for the children and families so Santa will be coming several days a week. There are times a child may not feel up to coming down (like Charlotte tonight

We are on a roller coaster. A roller coaster in the twilight zone. You know, that alternate universe from 80’s TV? It’s the only explanation because none of what is starting to feel normal IS NORMAL. It’s a rollercoaster in the twilight zone, but we can’t get off and there is no escape in sight. I type this thankfully while sipping a glass of wine because momma needs it. Although the RMH doesn’t allow alcohol, tonight is an exception as they had a huge and impressive soirée to celebrate their 40th anniversary. There were 4 floors decked out, music, food and desserts galore, broadway singers caroling, Santa, and thankfully a cocktail/wine bar. How could it have been just this morning I was laying a dozen ice packs on our baby girl because she was in so much pain during the 3F8 infusion. She was able to receive pain rescues this time, thankfully, because her BP and vitals were perfect, but she had so much intense pain with about 6 minutes left of treatment yet it felt like 60. When t

Today was rough, but it’s over. The first day of each round can be tough. Today Charlotte’s blood pressures were dropping to dangerously low levels which caused us to pause her infusion to manage and let them return to a normal level. Because her blood pressure was so low, she was losing consciousness and it was not safe to give her the strong pain narcotic rescues during the infusions which meant she didn’t get as much relief as my momma heart hoped for but none of this is uncommon and she did very well and over came it all. I carried her back to the RMH during a pretty snow fall where we rested and relaxed watching the snow fall the rest of the day. She also tested positive for an upper respiratory cold virus which could impact her ability to recover and bounce back this week but we shall see. She is likely to feel much better tomorrow on her day off of treatment. During times like this, where you might walk by faith and not necessarily by sight, sometimes we get a glimpse of somet

Quick Update for now but more coming: After a wonderful 3 weeks HOME, which included Thanksgiving, Charlotte and I have arrived in cold, snowing, sleeting NYC for round 3 of treatment. First words out of her mouth when she saw some snow showers: “Can we go sledding??!!”😂😳 Then she sang Santa Claus is Coming to Town most of our cab ride. Bruce Springsteen himself would have been proud. And after we got settled at the RMH, we looked out of our window and although the city view was pretty it was only 4:45pm and the sunlight was gone 😩.  Between the storm clouds and all the tall buildings, this time of year we won’t have many hours of sunlight but then again...it’s Christmas Time in NYC! Maybe she will tolerate this round as well as before and we can get the opportunity to enjoy some of the special Christmas magic that NYC has this special time of year❤️🌈Thank you for loving and praying for our sweet girl as she starts the next round of 3F8 immunotherapy tomorrow morning.❤️🌈 #charlott

When you are waiting for any kind of scan or biopsy result and the phone rings, showing it’s your doctors on the caller ID, you try to find somewhere alone to sit down. Your stomach starts to do flip flops and you just try to take a deep breath. It was always hard, but after Charlotte’s relapse it is so much harder. But today, we got great news! MSK called to let us know Charlotte’s bone marrow remains clear of any evidence of disease! And it’s not just Neuroblastoma that they are looking for. Leukemia, for example, can be caught early in the bone marrow, and is unfortunately a potential side effect some kids can face due to treatment. But today, today we can celebrate that Charlotte’s bone marrow’s clear! Praise!! We can take a deep breath and embrace a Thanksgiving at HOME SWEET HOME❤️🌈 Thank you God. Thank you village. #charlottestrong #familystrong

HOME❤️🌈 Hopped the earliest flight possible (on standby and we ran through the airport to make it as we heard our name announced for boarding). We got home for a family dinner prepared by a friend because we have the most amazing village here. There is a Meal Train arranged for while we are in NYC and this is just one of the ways we are feeling all the love and support. We are so grateful and are ready for some fall days and Thanksgiving. #charlottestrong

It is truly a blessing we’ve gotten days like these while under going this therapy! My mom was a birthday present as she came to visit us here yesterday for my birthday! We were able to take in a show together at Radio City Music Hall to see The Rockette’s Christmas Spectacular show and have a delicious dinner in the city out for my birthday! My mom has always wanted to take me to see the Rockettes and the show was great! Charlotte was captivated. Although she needed some pain meds yesterday for neuropathy in her fingers and toes, once we got that under control, she was feeling great! Today, we just tried to keep up with her! We enjoyed playing here at the amazing RMH, and also went to a nearby salon for mani/pedis for a treat❤️We may never know who Mr. Mark is, but we will do our best to get him a thank you note after some detective work. This sweet gentleman met us while at the salon, and after chatting a bit, he quietly paid for our manicures and pedicures on his way out. The kind

I met a grandmother here with her almost 5 year old grand daughter who under went her 8th round of 3F8 this week. This little girl ended up in the PICU with complications and is now out and recovering from a hard week. Meanwhile, Charlotte was doing pirouettes and skipping around the place, ready to  play. This is what makes the doctors here often scratch their heads. There seems to be no telling how a child will respond to this treatment each time and although the nursing staff is highly trained and prepared to handle anything, this remains a mystery. Charlotte did exceptional this week and as I write this, she is peacefully fast asleep with minimal lingering side effects. Today, she finished her last day of round 2 of 5 of this immunotherapy. We snuggled this morning and she verbalized how she “hates” this medicine and who could blame her sweet heart. And yet amid it all, her joyful and strong spirit remains in tack. This is something Brian and I pray for every single day. That som

Meet Barlotte, Charlotte’s alter ego today🤣THIS KID! She blew me and the team away today. After recovering from the intense 3F8 infusion, she was ready to play and goof off! A group called Mustaches For Kids Long Island was in the MSK playroom today and Charlotte joined in😂 Each day she receives this treatment, no one can know what to expect and so we are so grateful when she has an easy recovery like today. She has been able to verbalize what she is feeling, and although the location of the pain varies each time she receives this therapy, she is able to describe that it feels like she is on fire. This is perceived nerve pain caused by the immunotherapy. Monday, it was her stomach and buttocks, today it was her mouth and arms and legs. Besides various medications given before, during, and after (and there are TEN of them...) to help manage side effects, simple cold ice packs are her best friends. My job is basically popping and placing ice packs wherever she screams for me too (tod

I tucked Charlotte in and planned to write a quick update last night, but I briefly closed my eyes and woke up 12 hours later! We both crashed and must have needed it. Her body is working so hard as evident of how much she slept after treatment yesterday and last night. She handled day 1 of round 2 incredibly. This is hard on their bodies, but we just keep trying to envision this therapy creating an army seeking and destroying any cancer cells. The pain came with just 9 minutes left of her infusion time and she was able to handle it remarkably. She had some blood pressure issues that kept us longer then normal, but once that resolved, we were able to head back to the RMH to rest. She get well enough for a little playroom craft after dinner and then got a great nights sleep. Today she woke feeling good and got a day off (infusions are Mon, Wed, Fri)! We were able to play a lot and got a few groceries for the week after we played at a nearby playground. She enjoyed a lot of different a