Charlotte's Journey

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...

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...

The NYC Marathon was today. Me and our cab driver might have been the only 2 people in New York City who didn’t know that.😂 He dropped us off 2 blocks away from RMH because of road closures and either he played the part well or he had no clue it was the famous NYC marathon which literally ran directly next to RMH up 1st Avenue! So, here is Charlotte and I with 2 suitcases, a medium duffel bag of books and crafts and toys, 2 back packs of gear, and our winter coats walking towards RMH through the crowd. When we see it’s a race with blockades, I asked a stranger “Is this a marathon? As in the New York City Marathon?!?” Deep breaths...we were dumped by our cab on the opposite side of the barricades with no foreseeable way across. We walked back up  and found a little restaurant to regroup. Some chips and guacamole and a couple carnitas later, I formed a plan. I hailed another taxi to take us to where we could cross and planned to then walk across to other side to hail a cab back th...