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PTEN Patient Symposium 2026: A Community Connection
I had the exciting experience of attending the 2026 PTEN Patient Symposium yesterday at CHOP. Sometimes, 15 years after diagnosis, you can get in a rut, thinking you know everything you can know....
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When Parents are Patients…
I recently fount this post in my “drafts” from August 2024. I edited only the dates. I have no idea why I never published it. Now, in August of 2026, 3 more Meghan surgeries later (including a double...
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Foobs- When Cowdens Meets Breast Cancer
It was difficult to explain to the plastic surgeon how I had come to be sitting in his office this morning. The short answer of course, was that I wanted my breast implants evaluated for rupture as it...
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Second Chances
We rescued our first dog in November of 2005. Meghan was a toddler. A sick toddler. I was functioning with little sleep and trying to balance being a full time mom of a beautiful, yet painfully...
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Difficult to talk to…
That was the assessment of my sister-in-law, some time in 2004. She told me I was difficult to talk to, and I had no idea how to speak to children. There was a longer story than that, obviously, but...
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What if?
What if we all tried to really take a minute and put ourselves in the shoes of someone less fortunate? Not to beat ourselves up, but to build each other up. Imagine how different things would be....
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Finding Strength in Struggles: A Mother-Daughter Story #beatingcowdens
They never go away. Your experiences, that is. Our lives are literally made of them. And in all of our lives, some are happy, some are sad, others are joyful, or sometimes traumatic. We can’t change...
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“It Doesn’t Suck”
“Thank you…” That’s how she led at 6:30 on a Saturday morning, when I picked her up 140 miles from home so she could squeeze in a uterine biopsy on the weekend, so as not to miss any class her first...
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It Was “Ruff…” / Graduation and PTEN Awareness May 2025
Meghan’s faithful service dog, Ella taking a post- graduation rest. You’d think at 51 years old, I’d be in better control of my emotions. I mean, you’d think I’d at least have them labeled and...
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Perfectly Imperfect- Orchids and Life Lessons
I don’t remember when I got the first orchid. I don’t remember who gave it to me or even what color it was. I remember it was after looking through droves of flower photos from my father’s images...
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Rare Disease Day 2025
This is technically our 14th “Rare Disease Day,” since our PTEN diagnoses came in the fall of 2011, but if I am fair, the entirety of 2012 was such a blur that I feel like this is more like the 13th...
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Red Flags and Butterflies
It’s really a dizzying vacillation between the two. So much time is spent at the red flag, laser focused, all hands on deck stage, that when there is a pause to give some time to breathe, and maybe...
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Today Was a Difficult Day
There is no longer a need for pain meds. At least not the ones that heal your physical pain. The pathology, all nine pages of it, has been sent to several places for “additional review” due to the...
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“I Support The Girls”
Years ago when we went to have Meghan professionally fitted for a bra, Tina was kind, helpful and just a wonderful human. She fitted Meghan a few times through the years and at one point the...
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The Glider- from Birth to Bilateral Mastectomies
The glider I added to my baby registry in 2003 was arguably the piece I cared the most about. I am not big on stuff, and am unimpressed by “fancy.” I am all about practical functionality. That glider...
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My Letter to the CEO of Disney
This is not the way I intended to talk about Meghan’s next surgery. However, as I have told her so many times before, we know ours is not the only story that needs telling, but who are we to complain...
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Just Let Me Know if I Can Do Anything….
Spoiler alert… If they are messed up enough from something, a loss, a trauma, or literally ANYTHING that prompts you to ask that question, they are likely INCAPABLE of figuring out what they need, let...
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No Rest for the Weary…
I have found when I am just exasperated by life, I get really quiet. Like hide in a corner, under a table in a dark room kind of quiet. And if you’ve been looking for me, that’s where I’ve been since...
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Status Update…
We met with the surgeon for Meghan’s follow-up visit yesterday. He was so pleased with her, and with how incredibly hard she is working to recover. He is amazing, her orthopedic surgeon. He is humble,...
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Narcan?!?!?!
We got home from the hospital late Friday of last week. After 5 days and 4 nights-her longest hospital stay since she was a toddler, we trekked from Long Island to Staten Island, a 35-mile journey...
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