Today is the 8th Remission Anniversary for Sophie defeating Langerhans Cell Histiocytosis, a rare form of cancer. Eight years ago today, we were told that Sophie’s cancer was gone. Eight years ago today, we had hope that Sophie would grow up ,she’d grow old, she’d have a wedding and a job and children and a… Continue reading Eight years and It Doesn’t End
You just read that title and thought “I know my kid is mortal. I’ve faced this.” And I would agree with you before my daughter was diagnosed with cancer. But I didn’t realize what my child’s mortality really was until it slapped me in the face. I knew, when I got pregnant, that I had… Continue reading The Moment You Face Your Child’s Mortality
We had an “incident” at our daughter’s after school a couple of weeks ago. Three boys surrounded her while she was coloring with chalk on the ground, circled her while saying “we’re circling you, you can’t get up, neener neener neener” (kids really are idiots… seriously… wtf?). Her response was to throw a piece of… Continue reading Hard Decisions and Trying to Emulate Normalcy
3:30 a.m. Tuesday morning. I have Sophie tucked into her booster seat behind me. Butterfly pillow between her head and her brother’s car seat as she leans into it. Sugar-skull covered fluffy blanket over her. She’s still in her Lego movie pajamas and falls right back to sleep once I get the truck moving. I… Continue reading Feeling Squishy
In my last blog I said I didn’t want to be negative. I didn’t want to make a list of things NOT to say to the parents of chronically ill children. And I still don’t. But someone said something to me that has brought this one thing forward. One thing that should NEVER be said… Continue reading Do Not Dictate How I’m Supposed to Feel
When you have a child with a chronic illness, you have to go through the steps of grief emotionally to handle the disease. But once you go through those and get through the initial emergency period, you can get complacent during long stretches of generally good health where the “chronic” doesn’t rear its ugly head. … Continue reading The Steps of Grief with Each Doctor Visit
Most everyone starts off on the “fighting pediatric cancer” journey with loads of friends and family. The second you say the word “cancer,” it’s like you are suddenly the host to the world’s largest love fest. You have friends you didn’t know you had and your family members all stand up and offer to help,… Continue reading Culling the Herd: How Relationships with Friends and Family Change When Your Child has Cancer.
Disclaimer: This is not a preaching moment for me to tell you that you have to or even that you should believe in a God or Goddess or Gods or have any faith at all. I believe in the freedom of religion, whatever that religion might be, and that includes the freedom to NOT have… Continue reading My Faith and My Daughter’s Cancer
I find myself thinking those words more often than not in the last few weeks. I’ve always been the bad@$$ in the herd. The black sheep with the bandana, playing the metal music and not bending to the judgement of others. I didn’t cry for anything, ever. I didn’t cry when I moved away from… Continue reading Please don’t think me weak.
You are a Pediatric Specialist. You work in an office attached to a hospital, and you are an expert in your field. You do amazing things. You know the liver, heart, lungs, bone marrow, and tiny tiny cancer cells better than anyone and you know how good you are. Us parents aren’t trying to discount… Continue reading Tips for Pediatric Specialists: Coping with the Tempermental Relationship You Have with Parents