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 · 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

Cancer · Chemo mom · Childhood Cancer · Histiocytosis · pediatric cancer · PTSD · Survivor · Uncategorized

Please don’t think me weak.

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.

Cancer · Chemo Dad · Chemo mom · Childhood Cancer · Family · Histiocytosis · liver disease · Parenting · pediatric cancer · Pediatricians · Physician · Uncategorized

Tips for Pediatric Specialists: Coping with the Tempermental Relationship You Have with Parents

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

Cancer · Chemo Dad · Chemo mom · Childhood Cancer · children · Family · Histiocytosis · Husband · liver disease · Love · marriage · Motherhood · Parenting · pediatric cancer · Uncategorized

Homage to Chemo Dads

My husband is a man of many colors, a renaissance man with many cloaks and many talents.  He is humble and kind and doesn’t think much of himself, which is ridiculous, but I can hardly change him or how he sees himself after 14 years.  Much like myself, his soul was marred by our daughter’s… Continue reading Homage to Chemo Dads

Cancer · Chemo mom · Childhood Cancer · Histiocytosis · Motherhood · Parenting · pediatric cancer · Uncategorized

Dear Normal Parents, A Letter From a Chemo Mom

I am the mother of a medically fragile child.   I have been her mother for 8 years, and for nearly all of those 8 years she has been very sick, recovering, or dealing with the permanent effects of her illness.  She was born with Resistant Multisystem Langerhans Cell Histiocytosis, which is a fancy way for… Continue reading Dear Normal Parents, A Letter From a Chemo Mom

Cancer · Chemo mom · Childhood Cancer · Family · liver disease · Motherhood · Parenting · pediatric cancer · PTSD · Uncategorized

The Eggshell Child

When I was in law school, I remember being in torts class and learning about “the eggshell plaintiff.”  A plaintiff is a person who sues another person in court for injuries.  The Eggshell plaintiff is the person who is injured by something you did, but their injuries are far worse than they would be in… Continue reading The Eggshell Child