Making it matter

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 Just weeks before Charlotte’s diagnosis, I snapped these pictures of our silly 2 year old girl including one where she was proudly wearing her potty training underpants. I have come back to stare at these from time to time, trying to see any signs of cancer or the mass in her abdomen that would soon be discovered. She started to have unexplained abdominal pain and constipation, as well as lethargy and paleness. The blood work showed anemia and our pediatrician used terms like TEC and viral causes that could be causing a temporary condition of bone marrow suppression and kept pushing Miralax to help with the constipation. Meanwhile, our girl suffered as the cancer began to grow and spread uncontrollably, silently. I carried her everywhere, she became too weak to play for long and slept more then normal. We went to our doctor every week for over a month for follow ups. Her belly started to distend.  At one point during all the repeat follow up visits, our pediatrician drew further blood work to rule out cancer apparently because she came back in with a big smile and announced to me “Well! Good News! It’s not leukemia!” My stomach hit the floor when I heard that because I honestly hadn’t thought of cancer at all at that point. Then I felt relief flood me...thinking phew we missed that one. After 5 weeks of this, we had enough. We headed to Duke Children’s where it was discovered the next day. So picturing our old pediatrician’s face, hearing her voice in my head, and the word Miralax are all triggers for me. My heart starts pounding and I can hardly breathe. Can you imagine thinking your baby has some temporary virus and then your world comes crashing down as you realize she is fighting for her life with stage IV cancer? Her bone marrow infiltrated. Her abdomen filled with cancer and distended from a huge tumor snaking it’s way up into her chest and spine, wrapping itself around her aorta. Hearing the words Neuroblastoma as it dawns on you that your childhood friend and college roommate in Virginia had lost her son 6 years prior to the same cancer. Hearing 50/50 chance. I still have not either erased the 2 voicemail messages from her pediatrician calling to check on her after we were admitted nor returned them. The anger subsided over time...after all whose fault is a cancer such as this. But time is still trying to help me heal and the trauma is real though hasn’t ruled over me nor Charlotte nor our family. But we are changed. And sometimes I want back what was lost or stolen while other days I feel so blessed to have the countless special gifts and moments and people in our lives that we now do because of this damn disease. 


I want to share some things during this month, the month of Childhood Cancer Awareness, because I want our testimony to help in any way and our daughter’s fight to matter. It all needs to matter. #charlottestrong

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