Hello dear people.

This is Marc writing. It has been about a month since the last “How’s Hanna?” update. SO much has happened. Hanna’s mom was here much of that time, and other family has visited. There were outings—to a cabin in the woods, to “The Ruins,” to tables and porches and gardens and ponds all around. And seemingly bottomless engagement with systems and infrastructures of care.

I’ve talked with a few of you recently, and heard some common questions. Maybe those questions are a good guide for this update.

How is Hanna?
The surface, physical answer is “pretty great for someone with a terminal diagnosis.” She notices some progression of her symptoms—speech difficulty, strength, breath, energy. At the same time the routines of sleep and energy, diet and weight are paying off. She has gained ten pounds since her low point in March. Her days have many moments of joy, she’s getting things done. I imagine she would say she can’t do everything she wants or thinks she should do. But if you’re distant from Hanna you should think of her as someone still very much engaged in life.

New gear aplenty
Over the past month, a lot of helpful gear has arrived at Chez du Plessis. A few are helpful on the voice and communication front. This includes a “boogie board”—a thin, butt-simple tablet for quick messages like, “A small oat milk latte please” or, “Baie dankie, my skattebol.”

There’s an iPhone app called Speech Assistant that makes it quick for Hanna to type things which the app then speaks out loud. It uses a proper-sounding English-accented lady voice that I find pretty amusing.

And thirdly, Hanna has a voice amplifier like you might see someone using who’s leading an exercise class. It has a thin headset microphone and a not-too-big amplifier and speaker on a strap. She can wear it around her neck and be heard in a large room or at a noisy dinner without working hard to raise her voice. We learned from a speech pathologist that the effort to be heard contributes to Hanna’s depleted energy at the end of the day. This voice amplifier helps.

And there’s more! The arrival of the ventilator and cough-assist device was a big day. When you hear “ventilator” you might picture someone at a hospital hooked up to a machine that breathes for them. This is not that. This is portable, much like a CPAP device for people with sleep apnea. Hanna can use it at night with a mask to help her breathe well while sleeping, or she can use it during the day with an attachment that looks like the stem of an oversized smoking pipe. If she’s talking a lot or otherwise feels short of breath, she can put that in her mouth, inhale, and the ventilator helps by providing pressure. She gets deeper breaths with less effort. More blood oxygen, more energy, better days.

Which is all great. At the same time, all these devices are reminders that Hanna is someone who needs them. The day of the ventilator’s arrival was emotional. Difficult. It’s wonderful to have good deep breaths, it’s wonderful to be understood and participate in conversations. And it’s difficult to realize you need help with these basic aspects of life.

How is Hanna? Stubbornly joyful.

How did Creative Mornings go?
It was really great. It was moving, profound, and very huggy. They are working to edit a video of the session. We’ll post it here as soon as it’s available. Meanwhile here’s a photo gallery.

So is the diagnosis final then? Still having tests?
Yes, the diagnosis is final. There’s a rhythm of visiting the ALS Clinic every three months, engaging the clinic’s various specialists as needed in between. Clinic visits include a breathing test and strength tests as well as a standard protocol that’s repeated each visit to monitor progress of symptoms. When Hanna returns from Ireland she will begin a new medication (“tastes like bunny dook!”) which for many people slows progression and extends life.

I hope it’s okay to ask, but how’s the money situation?
The short answer: this is currently not a source of stress, and there has been incredible progress.

The longer answer: we’ve made great progress in enrolling Hanna in programs that qualify her for different kinds of insurance (hello, Medicaid), which will greatly reduce or eliminate some of the most expensive co-pays. There’s still work to do on this front, but things are falling into place.

Then there are expenses we can only anticipate without knowing when they will arise. That’s why we started the donation fund last month, and…

Holy smokes, you all. The generosity. The fund is now just short of $18,000. More than half of that came from two donors. The care, connection, and generosity has left me speechless and has touched Hanna so deeply.

I can feel embarrassed by this bounty. I talked with my neighbor about this. She is a cancer survivor, well familiar with what it’s like to navigate the finances of a serious illness. Her advice to me: “It’s too early to relax. Don’t say no to offers of help, thinking you’ve got it covered. There will come a time when the costs go up and the story is no longer a fresh concern for people. You’ll need everything you can gather.”

As a bright-side-looker, I feel it’s important to hear balancing lessons like this. So we’re going to leave the donation link up. A thorough and humble thank you to all who’ve given in this way. (And others in so many other ways!)

Thank you. Thank you.

Marc