Charlotte's Journey

Charlotte did great for the first of 7 Neuroblastoma vaccine injections. And our travels were “easy peasy lemon squeezie” as Charlotte would say. Due to the CODVID19 restrictions and quarentines, the traffic was nonexistent. What would usually be full of congestion and bumper to bumper traffic, was almost an eerie empty stretch of road. I’ve never seen anything like it. It is evident that everyone is in fact staying home. During certain parts of our drive we wouldn’t see many cars at all and it was fun to approach someone and wave “hi! Another human!” And Charlotte is a great traveler. So we were able to drive up Monday and get home late Tuesday night! My focus was on keeping us away from contact as much as possible. NY and NJ have 5 times the transmission rate as anywhere else in the country. So although not an ideal time to go there, we did what we must to get Charlotte on this important maintenance trial so she can continue her fight. We will need to make this trip up to NY on Mon

I know we are not alone as all of us are facing unprecedented challenges in one way or another during this time, but I called an audible at the line of scrimmage and today Charlotte and I drove up for her appointment tomorrow morning in NYC at MSK in which she WILL BEGIN the Neuroblastoma vaccine clinical trial (for her second time). It’s a quick up and back trip but we will need to do this every week for 3 weeks and then it spaces out. We are staying at a vacant condo near AC for tonight that my mom had rented but ended up not being able to use this spring due to the outbreak. Trying to limit contact so that she can continue to keep on going. She’s come so far and we can’t stop now. This trial has a lot of promise and good outcomes for kids like Charlotte who receive it a second time around after a small focal relapse. So, we are doing what we must and trying to make lemonade and feel every blessing amid it all. Charlotte wants to share a joke her Poppy told us😂❤️🌈Thanks for showeri

We have preliminary results that show she is CLEAR of disease🌈❤️🌈❤️Thanks be to God! Charlotte is officially done with active treatment now and our eyes turn to what is next to help keep her clear. Getting her the maintenance treatment she needs in the window required will be very difficult. We have spoken with our doctors and are taking all of their feedback to help us decide what to do. We have even reached out to a new trial with a different treatment plan for kids like Charlotte but instead of being far away, they are 2.5hr drive away in Charlotte NC. One thing is certain, we will do what we must to help her keep going. All doctors are in agreement that Charlotte will need maintenance treatment to help her cancer from reoccurring again. Please be in prayer with us as we navigate some more tough decisions on what is best and possible at this time where things are changing around us every day due to the pandemic. We love feeling your prayers! Keep them coming #charlottestrong

Some needed good news: Duke has cleared Charlotte for her scans today and tomorrow. Now we need them to be clear showing no evidence of neuroblastoma so we can officially close out the end of active treatment and qualify for the next stage of maintenance treatment. This week marks her 4 year anniversary of diagnosis. I looked back at the pictures from this day 4 years ago where we sat with so much uncertainty then, making hand print St. Patty’s day art together in the hospital...just waiting for whatever was to come. I remember that today as we sit here 4 years later waiting again. Back then, on today, she had her first MIBG scan which lit up all the areas where Neuroblastoma had infiltrated: her entire abdomen, her hips, spots on her legs and spine. I remember hitting the floor at the words Stage IV Neuroblastoma. And not only is she still here, albeit still fighting, but she is thriving amid it all. So we will harness all  of that hope and all of that strength she has shared with us

We know we are not alone in feeling so uncertain during these uncertain days due to this pandemic. It is hard out there for everyone. But truth is our little fighter suddenly has more obstacles in her way. She has added challenges to face in light of the global and national changes. There are things beyond our control at this time that may impact her access to treatment that she needs to receive in order to help her overcome her cancer. And our fears are mounting. Charlottes odds at starting the necessary Vaccine trial up at MSK in NYC are being stacked against her. FIRST of all, we need to complete scans this week and like other institutions, Duke Children's has strict policies in place at this time which may impact her having her scans. Charlotte has had slight respiratory illness symptoms for over a week now that we believe are likely due to seasonal allergies or a mild cold if anything. She has a slight stuffy nose and an occasional productive cough. Upson checking in, patien

Last night, Charlotte took a bubble bath and this message (pictured below) dissolved from her bath bomb....couldn’t be more perfect. We could use some prayers village. Our doctors at MSK in NYC have started limiting patient appointments in clinic for now due to the Coronavirus. Patients undergoing active treatment can still be seen, but many nonessential appointments are being canceled with TBD for rescheduling. They have a lot of international families as they are one of the worlds experts in Neuroblastoma and it is clear they want to limit exposure at this time to the immunocompromised kids in treatment. My initial reaction was heartbreak for families that are doing everything they possibly can to get their child to the place where they can receive the best of the best treatment. However, this news could pose an issue for our Charlotte who is scheduled to be seen in clinic up at MSK on March 24 to begin their Neuroblastoma Vaccine clinical trial. So far we are still on the schedule