A Summer of Love
Hello from our little bubble <3 Since I’ve taken a step back on social media for now, I thought we were overdue for an update here:
Over the past several weeks, we have unfortunately continued to see signs that Bea’s disease is progressing.
She remains at home on hospice, which has allowed us to keep our focus exactly where we want it: on keeping her comfortable and giving her as many good moments as possible without hospitals, procedures, or appointments. We have a fabulous hospice nurse who comes by once a week to chat, and I am texting her constantly. It’s a great relief to have that access, and to have a full pharmacy here at home.
Physically, things have become harder. Bea has lost a significant amount of weight as her appetite has decreased. We follow her lead completely now — if she wants to eat, she eats whatever sounds good, and if she doesn’t, we don’t push her.
Her fatigue has increased substantially. She spends much more of the day resting in bed or on the couch, and we continue to carry her to and fro since she cannot bear weight anymore. We have a great jogging stroller for our rare expeditions out (typically to DeCicco’s, Bedford Farms, or once, the Shell station for some candy!), and even made it to South Dartmouth for a much needed respite by the sea (thank you Pammy and Roger for the hospitality!).
We are also seeing more neurologic changes. Her speech has become slower and at times a bit muddled, she has moments of anxiety and mood swings, and she occasionally has trouble using her left arm and leg.
Headaches and nausea have also become more frequent, along with intermittent back pain. We are now using morphine when her pain is more significant, alongside Tylenol, nausea medication, anxiety meds, and the rest of her comfort medications.
Despite it all, there are still really good days and lots of fun moments mixed in. Just recently she woke up feeling well enough to go out to breakfast and enjoyed some bacon and eggs. She watches her favorite shows and movies, luxuriates in her baths, draws cards for friends and family, “talks” her stuffed animals, snacks when something sounds good, spends time with the people she loves, and continues to be very clear about exactly what she does and does not want. In Bea’s ever-so-tactful manner, she’ll dismiss visitors with a polite “I think I’d like some alone time now.”
Back-to-school season has been a hard reminder of the milestones we once assumed would be part of Bea’s life. Instead, our world right now is very small and very simple: Is she comfortable? Is there something she wants to eat? Does she want a bath, a movie, a snuggle, or some quiet?
We still don’t know exactly how much time we have. Brain tumors do not follow a predictable timeline, and a surprisingly good day can still appear in the middle of a difficult stretch. But we can see that Bea’s body is changing and that things are becoming harder for her.
For now, she is still here with us, at home where she belongs, being loved tremendously.
And that is enough for today.
With love,
Shannon and Brooks