Charlotte's Journey

Cancer is trying to take a little girl named Charlotte and break her. But we won’t let it. We arrived with a happy Charlotte who wanted to skip, run and play. A chatty Charlotte who was coloring in one of her coloring books until 8 minutes into the 36 minute immunotherapy infusion. We left 8 hours later with a Charlotte who looked broken, in pain and unable to walk due to nerve pain in her feet, a drowsy Charlotte with 3 prescriptions in my hand for side effects and pain management. Today was hard to describe but it is over. The 3F8 immunotherapy Charlotte is receiving is done outpatient in the MSK day hospital and so she is now back here at RMH recovering. The infusions are 3 days a week (MWF) and  are fast and intense. They are so painful but the pain isn’t doing any actual damage she needs to heal from, but is more perceived nerve pain. Older kids can describe it as your body burning on fire. Strong pain narcotics are administered in a delicate balance with the 3F8 and the b...

I’ll keep this short because tomorrow will come early and I know I’m going to need my head about me for what is to come. Brian, Taylor and Parker, AKA the worlds best medicine, came up to visit us over a long weekend! We took in a fun show (Blue Man Group), played in Central Park, and just enjoyed quality time together here at this amazing RMH (my kids need to be pried away from the playroom here). Saying goodbye to each other today was hard on the kids but Brian and I hold onto the fact that if ALL of this goes as we pray, then this could truly be the last time Charlotte needs to be away from home due to treatment for such a long duration. Between all those weeks of inpatient for chemo, months going through transplant, a month in Philly for radiation...all that we thought was behind us, yet now 3 weeks are required here in NYC for the start of this new immunotherapy. We just keep clinging to the thought that this could really be it. It could really be all behind us. Going forwa...

I signed consent forms yesterday and it is official. Bone marrow biopsies returned negative and all lab work checked out. Charlotte is enrolled on the Hu3F8 with GM-CSF for relapsed Neuroblastoma phase I/II clinical trial up here at MSKcc. We began the GMCSF injections today (which will rev up her white blood cells for battle. she has actually received GMCSF during frontline immunotherapy so our hope is for future rounds we will get insurance approval for this portion to be shipped to our home and we can administer this med there which will reduce our time here in NYC. The 3F8 infusions will begin here in clinic on Monday 9/30). Half of my heart celebrates this answered prayer of clear scans and bone marrows and being able to access the medical miracles right here in our own amazing country. The other half of my heart cannot believe we are here, enrolled in a clinical trial, on the other side of the coin so to speak where this cancer has returned. My stomach in knots after going over...

Being back here, in active treatment again and staying at The Ronald McDonald House of NYC has stirred up a lot of emotions. Emotions of humbleness and gratitude, but also some sorrow. It still doesn't seem real at times. We were hoping by now we would be in the position to be actively giving back and not on the receiving side. And yet here we are, staying at the RMH. Brian and the kids are back home where our amazing village has arranged a meal train to help us with dinners. Friends and family reaching out to help with Taylor and Parker, to mow our lawn, or do a grocery run. Countless people have sent thoughtful gifts. Schuey and Neal once again are staying with us to help some with the children while they are on September track out and Brian goes to work. I can’t keep up with the thank you replies like I had hoped. And there is more... Our own sweet school of Olive Chapel Elementary has a club that Taylor is actually a part of for her second year in a row, Kids Corp. Kids Corp ...

I’m so tired (and as you might imagine emotionally drained) so for tonight all I can muster is WHOO HOO we have clear scans!!! After a week where we have never felt more afraid going into scans, and a day that didn’t quite go as we planned, we can at least say we received what we hoped and prayed for. After what felt like holding our breath, Brian and I can take a deep one and rejoice in this news. God is so good. We are feeling grace and mercy like never before. Our girl will keep going. We have a 4 location bone marrow biopsy tomorrow here in NYC to continue her disease evaluations but we believe those will also be negative for Neuroblastoma and we will plan to start this specialized immunotherapy up here in NYC. I promise to write more when my eyes can stay open...so much to say and so much other news I need to share, but for now you all, we breathe. And sleep. Matching her Minnie. Getting ready for a scan

I know I’ve been quiet. But it’s not because I don’t have a lot to say. And I have been writing a lot. But my emotions have been so strong and honestly I wondered who I was writing it down for. This space here we’ve created has, at times, personally been therapeutic for me, but it’s intention isn’t to be a space for me to personally lay down and unpack all that I have inside. It’s a place to gather, together, and watch our girl Charlotte do amazing things along her journey. It’s a place to witness her as a reflection of God and his love and grace and strength. It’s suppose to be a space to watch her heal. And so I’ve been quiet, but we are back in the storm. The lull and break in treatment is over. It is time for scans and time to begin the next phase of a brand new treatment that only MSK in NYC can offer. And so although I have so many things I want to say, and many things I don’t, for now I will just say that our sweet girl is feeling and doing GREAT. We need scans this week to re...

Well I started this update and now editing it🙃. I was GOING to write how our girl has been on a much needed break from the hospital and treatment (even though we have had to go in to a local clinic in our town for a quick CBC several times to monitor her counts as she recovers from this last round of chemo) BUT then today she spiked a fever out of the blue so into Duke Children’s ER we go. But everything checked out and we should be going home shortly! Labs and vitals all look good, as well as a chest X-Ray they ordered to rule out infection. Hopefully just a quick virus and she will recover at home❤️Our sweet and social girl got her first FULL week of Kindergarten this week, had a friend’s pool birthday party Friday, and a day on the lake with Pops and Mimi (Brian’s dad Doug and stepmom Joanne) on Saturday, but she is technically immunocompromised and is likely to pick up little viruses maybe more often then she would have if she was not back in treatment. We do our best, but she is ...