Charlotte's Journey

Charlotte didn’t understand why we wanted to celebrate today. We tried to explain how having your port removed means you are finished with cancer treatment. Of course, she surprises us with her understanding as she instantly made the connection that she’s still in fact receiving shots in NYC for her cancer and that now she’ll need to have a different kind of “poke” when she gets her pictures taken instead of using her port. She doesn’t see the end like we try to do, and who can blame her. You see she’s already had an end of chemo party in 2016, 2 confetti parades after both of her stem cell transplants, she already rang the bell after radiation in 2017, had another confetti parade after finishing immunotherapy the first time, she had a dance party celebration when she had her central line removed and then rang the end of treatment bell in 2017. She then rang another bell signaling another end of radiation after she relapsed in 2019, along with another celebration when she finished trea...

Special milestone today! With more hair and less teeth, Charlotte will have her port removed this morning❤️🌈Although her next surveillance scans are on June 10, Duke is finally able to schedule this type of surgery and we would love to have this access be removed for many reasons, one being to allow her to be healed and fully FREE (without worry about fever protocols) for our beach week in which we leave for just days after her scans in June. Brian and I WANT more then anything to FEEL, really feel, the hope that this day should bring. We feel as hopeful as we feel scared of that hope. We have prayed for God to help us let go of the worries that come with this journey, so that we can be truly present in the glorious and joyful moments, like today . We have today. We keep hoping for tomorrow. One more scar, one more step to moving on forward towards the rest of her LIFE. The 5th and final scar. Thank you God for this day #Charlottestrong You did it sweet girl From Centr...

You all I am sorry but we got back safe and sound easy peasy. Time is being experienced in strange ways for me these days with everyone home doing school and work, the days blending together with the unusual rhythm of the week. So, Brian and I had noticed recently that Charlotte seemed to be bruising a lot lately. We seemed to find a new one everyday, although they are found in places where kids who are playing may get them like on her shins, elbows and forearms, knees and thighs. We know she’s been playing hard lately and has the energy of a typical a 6 year old but there is very little peace for Brian and I when it comes to Charlotte. We seem to look at her under a microscope and it’s just part of our reality I guess. So while I’m clinic Tuesday, I had some worries waiting for her labs to return and asking the team here their thoughts on her bruising of late. Swimming through my head are thoughts of “what if she has weakened capillaries from all the treatment? What if her platle...

Someone we’ve never met nor never will is matching every single donation dollar for dollar so that families like ours can stay somewhere safe near MSK during their child’s cancer treatment. Due to COVID, RMH is still not accepting new families and now there is a new procedure where we need to come to MSK a day early for Charlotte to be tested for COVID before she can be seen in clinic for the next step of her maintenance therapy. So, Band of Parents (an AMAZING organization that funds Neuroblastoma research at MSK) has helped arrange a dedicated floor for families at the beautiful Marriot Residents Inn near MSK in Manhattan, subsidizing rooms for families coming in for treatment. Charlotte and I drove up today for her to be swabbed and are now all squared away in our room here. We are so grateful for a safe, close by, and very clean space to stay (although I did wipe down entire room when we arrived as NYC continues to be hit so hard by COVID). Candlelighters of NYC is offering groce...

This was just 1 year ago. Like a dream or even another lifetime for our family where Charlotte had beaten her cancer, was about to finish Preschool and getting ready for Kindergarten, having her first dance recital, taking gymnastics, and thriving like our prayers had asked for a million times over. But look closer. This is a picture of a little girl with cancer growing...regrowing inside of her. No sign of disease, the picture of a happy little girl in perfect health. But in just a few weeks, the storm we thought we made it through would somehow snatch us and drag us back in. But our human spirit, HER spirit, although tested once more and battered and dragged through the unknown and despair, WOULD overcome. The unexplainable presence that our family would begin to feel once again would settle into our heart and bones, and help us find the faith and strength that only God can. Look again and you will see a little girl who is about to beat her cancer a second time all while trying to ju...