For Liberty

I thought about doing a pithy something or other for today’s post, but I just couldn’t.

My friend’s daughter Liberty is very sick.

She only just turned five at the end of August.

Diffuse Intrinsic Pontine Glioma is even scarier than it sounds. It’s a pediatric cancer – a rare one at that – in which a tumor grows around the base of the brain stem.

Without radiation treatment, Liberty has six months.  The prognosis with radiation extends her time out to an additional two years.

She only just turned five.

Liberty’s first radiation treatment is Tuesday. In support, we are all wearing red.  Or something with Hello Kitty.  Or both, if possible.

Consider supporting her, too. She needs all the support she can get.

Love for Liberty Facebook Group

Family Indiegogo Support Page

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Ambulance Rides

You think about a lot of things when your heart is pounding at 234 beats per minute.

For no reason.

For half an hour straight.

I thought about my daughter. I thought about my husband. I thought about my cats. I thought about my friends.

I was strapped in the back of an ambulance, trying not to absolutely lose my shit as it took three tries toset up an IV, three tries of increasing dosage of Adenosine to slow my pulse to something less deadly.

I wondered if the last thing I would see would be the bags of saline, set up for easy grabbing by the EMTs. Continue reading

Life happens

Charlotte had her followup from the infection of her pilonidal dimple in August earlier this week.

After the infection cleared, she wasn’t exhibiting any more problems either visually or verbally, so we asked if it would be okay if we waited until the flu vaccine was available to go back in (in addition to the fact that I was still crystalline with anger over the doctor’s attitude). It was fine. She was fine, is fine, will be fine. And the usual nurse practitioner who has seen her since she was six months old is still there, and thrilled at how much she’s thriving.

But there’s nothing that can be done about her dimple. No corrective surgery, no treatment. Nothing. Continue reading

Following Up

I spent a bit of time on the phone with the doctor’s office today.

I like to think I am a pretty easygoing person. People have bad days, I get it; god knows I have them, too. But the doctor who we saw on Friday took bad day from cranky to… I don’t want to say neglectful, because there are a lot of negative – and justifiably so – connotations with that word. But to say a certain basic quality of care was lacking would not be wrong. Continue reading

My Butta Hurts

Twenty four hours ago, I was sitting here trying to figure out why I have this thing up and running. Topics were bouncing around my head and I was discarding them just as quickly as they came into focus.

I had thought about doing a parenting blog, as I’m home with Charlotte and have been for the vast majority of her life, but I don’t really do anything that would make me stand out from the crowd. Continue reading