ACA · Affordable Care Act · Cancer · Chemo Dad · Chemo mom · Chemomom · Childhood Cancer · Family · Histiocytosis · Motherhood · Obamacare · pediatric cancer · Uncategorized

Eight years and It Doesn’t End

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

Cancer · Chemo Dad · Chemo mom · Childhood Cancer · children · Daughters · Family · Happiness · Histiocytosis · Love · Motherhood · Parenting · pediatric cancer · Uncategorized

The Moment You Face Your Child’s Mortality

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

Chemo mom · Childhood Cancer · children · Histiocytosis · Homeschooling · liver disease · Motherhood · Parenting · pediatric cancer · Uncategorized

Hard Decisions and Trying to Emulate Normalcy

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

Cancer · Childhood Cancer · children · Histiocytosis · liver disease · Parenting · pediatric cancer · PTSD · Uncategorized

Feeling Squishy

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

Cancer · Chemo Dad · Chemo mom · children · Friends · Uncategorized

Do Not Dictate How I’m Supposed to Feel

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

Cancer · Childhood Cancer · Histiocytosis · liver disease · pediatric cancer · PTSD · Uncategorized

The Nature of a Panic Attack (**language warning)

I like writing.  It calms me.  So I thought that maybe I could stop a panic attack if I just wrote during it.  Maybe just getting my thoughts out of my head.  So, I wrote this as a stream of thoughts I had while actively having a panic attack.  I planned ahead, considering I have… Continue reading The Nature of a Panic Attack (**language warning)

Cancer · Chemo Dad · Chemo mom · Childhood Cancer · children · Histiocytosis · liver disease · Motherhood · pediatric cancer · PTSD · support groups · Uncategorized

The Steps of Grief with Each Doctor Visit

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