A New Chapter at Home

It’s been a while since our last update, and so much has happened since we brought Bea home.

In the first few weeks after discharge, one of our biggest goals was helping her regain some of the strength she had lost during eight months of treatment and hospitalization. With physical therapy three times a week at Developmental Steps, she began walking again. She still relies on us to carry her most of the time, but on her good days she will take some steps on her own. Watching her work so hard for every bit of independence has made us incredibly proud.

We also got to celebrate Reid’s first birthday at home, together as a family. Being home for that day had been a major goal for us, and it meant more than we can put into words.

Then, in June, Bea had a very scary prolonged seizure at home. Two doses of her rescue medication didn’t stop it, so we took another ambulance ride to the emergency room at Westchester Medical Center. The seizure eventually broke, and once her vital signs were stable and she had begun recovering, we were able to bring her home.

As we got closer to her planned follow-up scans at CHOP, new symptoms began appearing. One morning, Bea woke up with severe back pain and couldn’t stand or walk. She also had a couple of accidents in bed, which is extremely unlike her. Taken together, those symptoms concerned our CHOP team enough that they asked us to cancel the upcoming MRI in Philadelphia and bring her to Westchester Medical Center instead for scans as quickly as possible.

Returning to that emergency room was emotional. It was the place where this entire nightmare began last September. Then, when Bea was admitted, we were placed in a room identical to the one where we had stayed with Reid during her own hospitalization exactly one year earlier. The familiarity of it all felt surreal.

Unfortunately, the news from the scans was bad.

The small tumor at Bea’s original surgical site in her right frontal lobe had more than doubled in size since before radiation. There were also several new lesions along her spine, which explained the back pain and incontinence. After the scans were reviewed by the oncologists at Westchester and by our primary team at CHOP, everyone agreed that this represented significant progression of her disease.

After many long and painful conversations, it became clear that there are no curative treatment options left. While there are a few single agent chemotherapy drugs that could technically be tried, the doctors do not believe they are likely to control a tumor that has continued growing through multiple rounds of induction and high dose chemotherapy, stem cell transplants, craniospinal radiation, and focal radiation. Those treatments would also require frequent blood draws and could bring nausea, fever, low blood counts, hospitalizations, and more time spent feeling sick.

At this point, our oncology team is aligned with our goal to focus entirely on Bea’s comfort and quality of life, and recommended that we enroll her in home hospice care to help support those goals.

Writing those words still does not feel real.

Our hospice team has been wonderful, though. They have helped us make plans for managing whatever symptoms may arise while keeping Bea where she wants to be: at home, surrounded by the people and animals she loves.

Right now, she has headaches, back pain, and nausea here and there, but so far those symptoms have been well managed with medication. The biggest change has been her fatigue. There is a significant amount of swelling around the tumor, which is likely contributing, along with the effects of everything her body has endured and some of the medications needed to keep her comfortable. She tires quickly and needs multiple naps throughout the day.

Still, there are happy moments every day. A highlight was a magical weekend to Disney World with me, Aunt Leslie, and her cousin Addie, made possible by Make a Wish foundation and my friends and family.

Her favorite place in the world right now is a warm bubble bath, so we are averaging about four baths a day. There are lots of snuggles, lots of movies, popsicles for breakfast, cousin sleepovers, and saying “yes” to almost anything she wants.

We do not know exactly how much time we have. With brain tumors, the doctors tell us it is impossible to predict with certainty. So we are trying not to live too far ahead, and we are holding our incredible unicorn-rainbow-glitter-butterfly Bea as closely as we possibly can.

With love,

Shannon and Brooks