Thanks! – Katie

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I especially love all the cheery exclamation points!

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Hi Katie,

Name of Person
Email Person’s email address

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So I’m wondering what she thinks my “aha” moment would be? Maybe, “Aha! My child just died!” or “Aha! I haven’t stopped crying for two weeks!”

(This is a good reminder to PR folks to READ BLOGS BEFORE YOU PITCH THEM. Sounds simple enough, doesn’t it?)

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Today H will be transferred back to the acute-care, higher level hospital where he spent the first two weeks after his injury. For the past two weeks he’s been at another hospital’s in-house neuro rehab program, but to be honest, he hasn’t made much progress and in fact, his condition has deteriorated over time. Then, in the past 48 hours, he had a significant seizure episode and has become rapidly less aware or able to communicate or follow simple instructions. A new CT Scan yesterday (which I had to insist on being done) revealed increased edema in the frontal lobes. He is also in significant pain from a bad headache, a new development.

Yesterday afternoon, I headed over to the hospital after work. While H was asleep and I was perched next to his bed, I wrote a blog post about the negative changes we were seeing in his overall condition. Then I spent some time on the phone with his doctor, talking about the changes. His doctor admitted that he was very concerned, but said he wasn’t quite sure what needed to happen next. He said he would consult with a neurologist in the next day or two to consider our options. I hung up feeling worried. My gut told me that H needed to receive more focused care immediately. I just knew that something was changing with him, that something was very wrong.

After I wrote the blog post in the late afternoon, I posted a link to it on my Facebook page. A neighbor of mine, who is my friend on Facebook, saw the post and became concerned when she read about how H’s condition was worsening. She asked her husband, Dr. R. a well-respected neurologist in town who hasn’t been treating H, to take a look at what I had written, which he did. Dr. R. was concerned enough by what he read in my blog post that he called another mutual friend/neighbor of ours (he didn’t have my number) to ask her to get in touch with me. So she called me and explained that Dr. R had read my blog post and was worried about H. She gave me his number and asked me to call him.

To make a long story short, I called Dr. R. He quickly came from his house right over to the hospital, which happens to be located in our mutual neighborhood. He examined H and gave me his opinion that H currently needs a higher level of care than the rehab center provides; his condition has deteriorated since he was moved from hospital #1. Dr. R. was concerned about the seizure, H’s continuing “mini seizures,” the edema on the brain and other issues we’re seeing. After spending some time examining H, Dr. R. called H’s doctor, whom he knows, and within an hour it was decided that H would be transferred today back to the acute neurology unit at the higher-level hospital where Dr. R is on staff. Dr. R is admitting him, and his group will be treating him. H is having an MRI today to find out more about the source of the edema and the seizure activity, and H’s doctor agreed with Dr. R’s recommendation that he be started on depakote, an anti-seizure med. He had his first dose last night.

After Dr. R. left, H’s nurse came in to his room, shut the door and told me quietly that she was SO GLAD that Dr. R. had gotten involved because she had been very worried about H. She said several of the nurses had been talking about how H needed to sent back to the acute-care hospital where neurologists would be overseeing his care.

“You did the right thing getting Dr. R over here. He’s the best.,” she said to me. “You’re a good mom.”

I really appreciated her saying that because as a mom, I feel so incredibly helpless in this situation most of the time.

Today I am feeling pretty indebted to Dr. R and his wife. And also pretty grateful for community – both virtual and real. You hear a lot of horror stories about social media, but not enough about stories like this one.

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Thanks Amy!

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Layla Grace

I learned about Layla Grace’s battle – and her mother’s blog about that battle – from my sister and other friends on Facebook. In recent months, mothers from coast to coast and beyond have been following Layla’s battle and her parents’ struggle until the end came yesterday. Layla’s mother’s blogging and Twitter posts were eloquent and brutally honest. By bravely sharing her family’s heartbreaking journey, Layla’s mama helped raise awareness about Neuroblastoma in a way nothing ever has before. Through her sensitive blogging, Layla’s mother also led other moms all over the world to rethink their frustration with that day’s toddler tantrum or the sleepless night spent nursing the baby or the preschooler’s crayon masterpiece on the new sofa. After hearing of Layla’s latest day spent in the hospital or declining at home in her parents’ bed, a little mess in our own homes or another fit at the grocery store seemed like a blessing rather than an annoyance. Reading Layla’s mother’s posts, we knew she would give anything to have just one more “normal” day with her beautiful two year old daughter, frustrations and messes included.

There but by the grace of God, we all thought as we read about little Layla.

Parents who followed Layla Grace’s illness and passing also bonded online, becoming a real, vibrant community of caring around this lovely child and her parents, demonstrating what I’ve known about social media for a long time now. While I make my living helping companies use online tools and platforms to reach out to consumers, I approach my job with HUGE respect for the “community” and “social” elements of the work that I do. These relationships we forge online are real and meaningful and can change lives; they aren’t just vehicles for marketing. The online community that grew up around Layla Grace’s journey demonstrated that. It’s a beautiful thing, and the reason I’ve been singing the praises of this thing called social media for more than a decade now; online community and relationships can be a truly meaningful part of our lives if we approach them with the same respect and honor that we accord to our “real” relationships.

I didn’t know Layla Grace in person, and I’ve never met her parents. But I can tell you right now that the sadness I feel about Layla’s death isn’t “virtual” in any way. It’s very, very real.

Rest in peace, Layla Grace.

And to all of you reading this, I hope you give your babies – no matter what age they may be – an extra hug today.

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