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