Charlotte's Journey

Having delays in every way right now🤪First: Charlotte came down with a chest cold and so Duke decided to reschedule her scans for sedation safety reasons. So full work up scans will be in March 17-18 and pending clear scans we will begin Vaccine study in NY March 24! Second: we got a new four legged addition to our family last weekend and it’s taken over our lives🤪Meet Chase, our 8 week old Charcoal Lab pup and new best friend! Once he gets this sleeping at night in his crate thing down, it’ll be smooth sailing...maybe😆. It feels so good to look forward to something like having a new puppy and transitioning to maintenance therapy. Once we see those clear scans, life will feel a little lighter for our hearts. Brian and I have felt pretty bruised and battered which is nothing compared to what our sweet girl and her body has had to go through and recover from. But our sprints remain strong and hopeful, our family and our dreams in tact. It’s amazing what a little grace from God can d...

After longer then usual and an unsettling email that put my stomach into knots for the past 24hours until we finally got clarification this afternoon that Charlotte’s bone marrow biopsies continue to be clear, showing no evidence of disease. I am certain I have grown in some extra grey hairs over the past few days and Brian would have too if he had any hair😆We are so glad to have this news and we expected it, but the delay in results and the initial email sure started to have me worried. There is not many moments of peace, true peace for us anymore. And I just can’t get use to that. So now we turn our eyes towards next week when she will have full work up scans on Tuesday-Wednesday. We need everything clear so we can move forward. Onward. Upward. Keep moving, keep going. She sure will. But first we had a fun snow day off school (first snow of this winter!), and we will celebrate our sweet Parker turning 9, AND welcome a new furry four legged puppy to our family this weekend! We so n...

The waiting can be one of hardest aspects of this journey with Charlotte. We are still waiting on her bone marrow biopsy results and then next Tuesday-Wednesday she has full work ups with MRI, CT, and MIBG scans, and so we are just here waiting on results but trying not to feel like we are sitting here in some big waiting room that is our life. I don’t wish it on anyone. The anxiety is so real and strong and can feel paralyzing. But life must go on in this waiting room because we have a family with 3 young children, Brian has a business to run and people to help, we have duties to do. And so we do. But there is not one second we don’t feel like we are sitting here in a camouflaged waiting room. When we are busy during treatment, we are focused on the task of caring for and healing Charlotte. But then scan times can be harder for us. Having regular scans and biopsies are part of her continued care and monitoring and will be for some time, yet this is something that I haven’t been pers...

Hi village! (Please bear with me for with the long update) We are HOME! I cannot even begin to try to describe the previous 24hours and trying to get her home, it was an Odyssey and will go down in my book as one of the most challenging travel experiences we’ve encountered due to several crazy circumstances that hit us out of left field but we are tough and we can do the hard things. The fact that she is home and finished with treatment has not truly hit me and Brian yet...but it WILL. She had not even woken up from anesthesia yesterday, after her 4 location bone marrow biopsy, before I was sitting in front of one of the MSK oncologists to sign paperwork for the next clinical trial, the Neuroblastoma Vaccine, aimed at preventing relapse. Although we knew this option was coming and that it would be a blessing to be back to this point of discussing maintenance options, I still had a very visceral, emotional reaction, which I rarely ever do with the doctors. (I approach time with them i...

There have been many firsts and lasts. But Lord hear our prayer. Let today have truly been Charlotte’s LAST cancer treatment ever. We know we have been here before, but our hopes have not changed in the face of this reoccurrence. We want to believe, we MUST believe, that our girl has truly beaten her cancer. That she will remain clear of Neuroblastoma for the rest of her life. That all we’ve been fighting for and towards is our truth. And although we know we face further decisions and uncertainty, especially immediate decisions as far as maintenance therapy options to help continue to keep Charlotte clear during the window where reoccurrence is greater, the maintenance treatments are NOT active cancer treatments. So, we celebrate today and look towards what lies ahead. I’ll write more on that when I can but for now thank you for celebrating with us as our girl keeps going, keeps moving on towards her dreams❤️🌈Thank YOU God Some one was a goofy girl this morning...we think sh...

Every time I’ve spoken on the phone with Charlotte this week, first words out of her little mouth are “How are you feeling momma?” And today, she had a harder then typical day, pain wise, with treatment and as she woke up and I called to say I love you, first words again from her little voice was asking me how I am feeling today. It’s just who she is. My heart is yearning to be there holding her but Brian is doing an amazing job caring for her and he is getting well deserved snuggles himself while she rests off this doozy of a day. Hives are beginning to reappear as well but the team has lots of meds on board to hopefully stay ahead of them this time. She just has ONE....can we shout it....ONE more day of treatment left. Please Lord❤️🌈 (p.s. today I am finally feeling human again and am on the mend from this awful flu strain)

Charlotte and Brian are taking on this final round of immunotherapy up in NYC as I suddenly came down with the flu this weekend😩. I have never missed a day of anything over these past 4 years while on this journey so I’m having a hard time wrapping my head around not being there, but I know Brian’s got this. And I have to stay home and recover. Now we need to hope and pray they stay well! And that this round can be as gentle as possible on our sweet fighter. We do not know if she is likely to have a worsening allergic response or not. But this is the finish line. Our hopes and beliefs are that this is truly her final round of active cancer treatment ever. And that she WILL remain disease free for the rest of her life. You see Charlotte has a dream. A dream that about broke our hearts because we want her dreams to be so much bigger. But we are hyper focused on making her sweet dream a reality so that she can dream bigger and more amazing then we could ever imagine. Charlotte’s teacher ...