Charlotte's Journey

The past 36 hours have been unexpected. Yesterday afternoon, Brian and I had a remote conference with Dr. Sholler who runs the DFMO trial out of Levine Children’s in Charlotte NC. This trial is aimed at a 2 year oral medication to help during maintenance called DFMO and has been studied for quite some time. The current trial that is open has added an additional low dose chemo in oral pill form called Etoposide. Charlotte’s had etoposide several times already during treatment and this dose would be a much lower dose for 3 week cycles for about 6 months. Then continued oral DFMO foe remaining 2 years. Some extra evaluations would be required (2 more bone marrow biopsies when we hoped those were all done) and some extra MIBGs. Here are the issues: 1.Charlotte would be the first ever on this trial out of the Neuroblastoma Vaccine study. They do not know how kids who have gone through vaccine will respond to the etoposide. Will the supposedly slight immunosuppression from chemo combat all t...

Today, Charlotte swallowed her FINAL dose of medication that accompanies the year long investigational clinical trial she has completed not once but twice now. (She has been swallowing a very large volume of a very viscous solution for 14 days in a row every 2 weeks on and off for a full year. Many cannot hardly stomach this but she has always taken it easily and has even shared videos of herself swallowing it for other children on this study who struggle in an effort to help and cheer them on).  Charlotte’s first grade school picture came in recently. Her Kindergarten school picture shows a timid and uncertain little girl straight out of chemotherapy and radiation, who was proud that she made it to school after her world was flipped upside down once again. Her first grade picture shows a confident and self assured little girl who is still proud to be here, thriving and blossoming. Brian wisely told me once how the things you don’t want to happen in life happen very quickly, wherea...

 Good morning village: our friend Elijah could use your prayers today. After his 3rd relapse with Neuroblastoma, his disease is progressing despite treatment. Tumor has infiltrated his jaw. He is having a scan this morning to determine the extent of disease but his family is reporting their greatest fear—that his cancer could be resistant to treatment and that they may be running out of options. Elijah and his mom recently came from their home in Ohio to Charlotte, NC for new treatment options, with a brand new baby brother whom Elijah adores more then anything. My hope and prayer today is that the scans and their new team of doctors here who specialize in precision therapy that targets tumor genetics, can find a way. That Elijah’s journey is partly to make a way. That there would be therapy to slow down this progression while still allowing for a good quality of life and TIME for a cure to be developed as there is so many new and exciting advancements happening. That his parents d...

Joy and Pain in this moment I want to update all of you who have been loving our family and cheering for our Charlotte all this time, but I am having a hard time writing this. (We have returned from MSK where Charlotte received her 7th and final NB vaccine shot on this clinical trial, had 4 bone marrow biopsies (returned clear), and met with survivorship team for tests and exam and to establish care for long term follow up appointments.) Yesterday, on the same day that our Charlotte received what we pray was truly her final cancer therapy treatment, our Poppy took his last breath while holding his wife’s hand. We loved this man so so much and there are just no words at this time that can be said as we try to process this sudden and unexpected loss of our stepfather, father-in-law, and grandfather who was such a special soul and presence in our lives. Neal and Schuey have been here supporting and holding us since diagnosis and now, it’s our turn to hold them close and surround Nana Schu...

 Quick update to let you all know that Charlotte remains CLEAR with no evidence of Neuroblastoma! Now that Charlotte is growing older amid all of this, one of the truly special and remarkable parts of has been watching her reaction when we tell her the news. She can genuinely feel the joy I think because she knows some of what it has cost her to get this news. She immediately beams that smile and seems to light up. Although Brian and I try to never let the children see the weight this is on us, the worry, the fear, she feels it too. She wants this to be behind her too. She asks us what will happen if her scans showed that the cancer has started to grow again. We tell her that we would fight it off once again. That we would keep fighting it off. And honestly, that is what we are doing right now in this clinical trial. So now we turn towards NYC and trying to find a way or MAKE a way for her to keep having access to what could make all the difference not just for her, but for so many...

 Starting today, Charlotte has some big appointments. We start off at Duke for 3 scans over today and tomorrow for her routine disease evaluations. Then Sunday, we leave for NYC for appointments there. She will have a 4 location bone marrow biopsy and the 7th shot for the Neuroblastoma Vaccine trial. We actually do not know if we are wrapping up this trial at this appointment or if she will be offered a continuance as we hope and pray for. Charlotte is doing amazing but she is still in the window for reoccurrence and we want to do everything possible to help continue to keep her clear. So, my anxiety is at a high as we await what will be possible...of course we need these scans to be clear first. I wish we felt at peace and could welcome the finality of finishing this clinical trial once again. But we simple do not and cannot. We are also under discussion about arranging a consultation with another Neuroblastoma expert who has just relocated to Levine’s Children’s hospital in Charl...

How we feel, captured so perfectly by I Draw Childhood Cancer Charlotte and Parker's first day of second semester virtual school: 1st and 4th grade Hi village. I’ve really missed writing about our amazing Charlotte and her journey, but at the same time, I felt like I needed a break. But now, here we are again, in the place we prayed we would be again. And it’s terrifying. In just a few weeks, Charlotte could potentially have her FINAL dose of cancer treatment EVER. One would think this a great celebration. A great sigh of relief. She made it! She beat it back and remains clear of disease, the treatment working. She is finishing a promising trial for maintenance. She is here and she is thriving! Celebration time! And yet, we are terrified and feel somewhat frozen instead. Brian and I feel strongly that further maintenance therapy is needed especially in children like Charlotte who’s cancer returned after all of that intense treatment. Neuroblastoma has a large window of 3-5 years af...