Charlotte's Journey

What more could we ask of our little warrior then we already have? Oh how about, "Charlotte, not only do you now need daily injections into your arm as part of this Immunotherapy but you also need to swallow a rather large pill 2 times a day AND you need to swallow it whole." We knew (and hoped) this day would come where Charlotte could begin this part of treatment. In between her inpatient immunotherapy infusions are home medications. One is an injectable shot that stimulates her immune system to overproduce blood cells programmed to fight the cancer (white cell stimulator). The other medication is an oral chemo called 13-CIS Retinoic Acid/Isotretinoin or you might recognize it's other name as Accutane. Accutane was developed as a chemotherapeutic agent before it was widely used for acne treatment! So fascinating. In Charlotte's body, this Retinoic Acid will help any immature neuroblasts, that could rapidly proliferate causing tumors, to mature into normal adult ce...

Quick update: Charlotte is home! Her last infusion finished up last night and the team gave us the green light to bring her home this afternoon. She's still not feeling great but we saw her spark return a little tonight as she mustered some energy to play with her best amigos, Taylor and Parker. All is right in the world for a little while. We are exhausted from this week in the hospital, but when we watched our 3 running together, playing in the yard at sunset with the littlest doing her best to keep up, it rejuvenated our weary hearts. She continues to inspire and amaze us all. Finally, there is a little boy, Cannon, whom I have followed since Charlotte was first diagnosed and whose mommy has been a fierce inspiration to me at times, who needs huge prayers right now. (I have written about the organization Cannonball Kids Cancer (CKc) before). Cannon has been in remission from stage 4 Neuroblastoma for almost 3 years. There has been a spot detected on his routine maintenance sca...

3/27: I wonder. If everybody had to fight this hard to live, how would they see each day? What would they do and how would they choose to feel each day they are given? Would they chose to spend energy complaining or rejoicing, hating or loving, helping or avoiding, fearing or learning, coveting or sharing? If everyone got to experience the climb these kids like Charlotte have to make, would the view at the top be all that more rewarding? Today was not how I imagined. Brian and I were not prepared to see Charlotte in the pain she was in as her body along side this therapy attacked her own nerve cells while trying to seek and destroy the cancer. Today was a day to find the "sweet spot" where the morphine is at a dose that helps keep her comfortable but what has been required has basically knocked her out. She struggles to stay conscious. In addition, fevers are spiking as her body is in this attack mode. She went from happily playing toys and painting this morning to excrucia...

Almost every morning whether at home or in the hospital, we have morning cuddles before we start the day.  Charlotte likes to play what she calls "capture Minnie" in which Brian or I bunch her Minnie lovie up in our hands and interlock our fingers creating a trap. She pries our fingers away one at a time until she frees her Minnie. Today, snuggled up next to me here in the hospital, we played capture Minnie like we have done so many mornings. But today she only pried half my fingers apart and then yanked Minnie out. I said "Whoa! How did you get her free when there were still fingers locked!?" And Charlotte said "I strong. God made me strong." And so God shows up again this morning as we begin the unknown yet very essential next phase of treatment. He continues to work in ways all around us and through her. No matter our own fears, hesitations, and doubts, he reminds us that he is here with us. He is surrounding her and infusing her with strength. Coming...

It was hard bringing you back to the hospital today. You've been playing so happily without a single care. Your laughter and feet echoing throughout the house, completing the sounds that make our house a home. Even the sounds of siblings battling over this or that is like music these days. And sometimes you or your brother or sister come to us with tears in their eyes over some childish thing, and the sheer norlmacy of that moment reminds us of the joys and challenges that being a parent entails. It's exactly where I want to be, doing exactly what I love most. But today we are starting this next phase to give you the best chance possible. Immunotherapy has given kids with high risk Neuroblastoma a better shot at completely ridding their little bodies of this cancer that likes to hide and return and steal your childhood and your life. So, today, we take this step. It's another step towards healing you. Your dad and I want to wrap our arms around you and keep you home. We wan...

Our team called this morning to tell us Charlotte's bone marrow biopsy results are negative. No evidence of any Neuroblastoma. This time last year, we just found out there was a huge inoperable abdominal tumor that had spread all throughout her abdomen, surrounding major arteries like her aorta and pushing up against all her major abdominal organs. It was snaking its way up towards her lungs. It had metastasized into her lymph nodes and 30% of her bone marrow was cancer. Her chances of responding to the standard course of treatment was a coin toss: 50/50. Her prospects looked so bleak in those early days I can still remember trying to stand to face each hour... we could hardly even breath. Today, she has no signs of cancer. In a few days, we will be back in the hospital to begin 6 months of immunotherapy to help her body destroy any microscopic disease and stay cancer free. Relapse rates for Neuroblastoma are devastating. We know we still have so much more fighting to do so she can...

Charlotte's MIBG and CT results are in! Her scans show no evidence of disease. We are still waiting on bone marrow biopsy results but Dr. Driscoll is confident they should reflect her scans and also be clear! We feel like we can take first deep breath in a long time. We are so grateful. Grateful for your prayers, for the medical team, for our family especially Schuey and Neal, for all of our neighbors and friends and village, for Charlotte's response to treatment and her beautiful spirit blossoming in spite of it all, for Gods grace and mercy and love. Our baby girl has had a long day here at Duke as she is having many different assessments performed today. We have spent the entire day at the hospital for 3 days now taking all the steps required to begin the next phase of her protocol: immunotherapy. She's currently sleeping peacefully in the stroller as we finish a once a month prophylactic infusion she needs. As I watch her sleep, I am so happy that SHE has this victory...