Eleanor Sayers- Sean and Alison

Good Morning.

I will let Sean and Alison tell their story… here we are just looking to help Sean, Alison, Eleanor and Sam. First they have asked for prayers. Also, if you are an SMCPS employee member of the sick leave bank, you can donate leave days to both Sean and Alison. Please contact Stacey Brown at HR. Financially we are looking to offset the cost of daily trips to the hospital, uncovered medical costs and whatever else comes up.

Here are Sean’s words. You can follow along on Facebook- Moving On To Old Maui.

Day One.

Today is day one of chemotherapy.

Our Eleanor is resting in a bed that makes her seem small and suddenly fragile.

Bags of fluids, blood, or platelets hang from the pole beside her. A constant parade of doctors and nurses moves through the room.

We were driving through the marina just last week, and like clockwork, Eleanor asked, "Can I run home?" She was already unbuckled. We stopped near the service shop, and I watched my girl bolt across the hundred yards of field towards the dock. Eleanor's legs pumped as she accelerated through the freshly cut grass– her dress flapped like a cape.

"You're like a cheetah!" I said after parking. Eleanor was swinging on the 1970's vintage swing set, smiling. "I know," she said and laughed.

I was thinking about her water bottle. "Is that all the water you drank today? How many times did you refill?

A few days before, she complained of a headache and stomach pain. "You're dehydrated," I told her. The pain came and went through the week. I paid little attention, telling Eleanor she needed to drink more water.

My last four weeks included pneumonia and days at work being more of a body than a teacher. Covid, Sam’s birth, and my father’s illness have nearly depleted my leave, so I work sick. We hadn't been to jujitsu in weeks, and I was finally well enough to sit on the bench and watch Eleanor train. She loves jujitsu, her coaches, and her "battle buddies," so I asked, "Do you want to go to Jujitsu on Monday?" I watched her eyes light up.

She trained hard and worked with another much larger girl, so at home, when she said her stomach hurt, I assumed it was muscular.

Alison stood to the side as we pulled up Eleanor's shirt and poked around, asking, "Does this hurt? How about here? What's this feel like?"

"She was really strong!" Eleanor said.

"Ok, drink more water," was my response.

The next day, a few bruises appeared on her arms and legs. Then, in the afternoon, Eleanor showed us a smattering of tiny pinprick red dots on her arm. "That cat," I grumbled, then looked at Alison. "I think Hammy brought fleas to us." I sighed.

On Wednesday, Alison sent me a message. Eleanor was curled up in the nurse's office, crying because of stomach pain. I exhaled and looked at my students, knowing that leaving would be impossible. I later found out that Eleanor sat on the sidelines during PE, unable to participate because of the pain. This news made me wince. Eleanor loves to be included and loves physical sports or games.

Pancreatitis, I thought. I messaged Alison. Take her to the ER.

An hour later, another message arrived. No parking at ER. Going to urgent care.

I automatically thought of a key American fact. The number one reason for bankruptcy is medical-related debt.

Key long sigh upon reflection.

The following message I received was that Eleanor was being transported to the ER by ambulance.

"She's still going to be stuck sitting in the waiting room," My father's voice commandeered my inner monologue. He had been a driver for our local rescue squad and had some experience with the ER. I knew he was right.

I prepped my sub plans for the next two days and bugged out of work while sorting logistics for Samwise and retrieving the Jeep.

The hospital parking lot was packed, and I knew what the ER would look like. Oh, Alison, I thought, imagining her cradling Eleanor as kids rampaged around them in a sea of coughing humanity.

I circled the parking area.

For the final lap, I drove into the construction zone and parked next to a shipping container. There's a toolbox on the truck, I thought. No one will question it.

I walked into the ER and didn't see my crew. “They're in the back already!” I realized. So, I pressed my ID into the glass booth and waited for the receptionist to look up. A moment later, I was looking for room 30.

Appendicitis, I was sure of it.

I found them in room 30, just as the doctor examined Eleanor. She was lying in bed, flushed, and groaning with every push of the doctor's fingers. Eleanor looked at Alison, "I wish I was you. It hurts mom." There was already a port installed in her arm.

Suddenly, the doctor became very interested in the small red spots.

Do not google enlarged pancreas and red spots. Do not google enlarged pancreas and red spots.

Do not google enlarged pancreas and red spots. Do not google enlarged pancreas and red spots.

I repeated methodically.

Later, I followed Eleanor to a different room and listened to her groan as the ultrasound tech scanned her organs.

Back in room 30, a portable x-ray machine arrived.

Alison and I made uneasy eye contact.

Later, the doctor stepped back in as the nurse drew several more vials of blood. "I've been speaking with hematology as Children's, and they'd like me to run a few more tests."

Time was starting to stand still.

Do not google enlarged pancreas and red spots. Do not google enlarged pancreas and red spots.

Do not google enlarged pancreas and red spots. Do not google enlarged pancreas and red spots.

I repeated methodically.

We googled it anyway. Everything pointed to cancer.

The doctor arrived later. His mannerism was distinctly different. Kinder, sadder, softer. "Children's wants you there tonight. Do you need transport or…?”

I interrupted. "I'll take her." I checked my watch. It was 7:30. No one had eaten lunch today, and we were all hungry. I began running logistics. "We'll get there around midnight," I said to Alison.

At home, we dumped a backpack out and filled it with essentials. Then we were on the road, and the gravity of the situation seeped in. The truck was quiet, and I relived the trips to DC with my father while he was undergoing treatment for pancreatic cancer. I could almost see him in the passenger seat. Every trip took a little more strength from him. We watched him transform from a strong 210-pounds to a frail 90-pound skeleton. Eleanor had seen the worst of what cancer can do to the strongest people.

More thoughts swirled around my mind. Stop it. My inner monologue shouted.

We were there, parked, and Eleanor was awake. I followed the signs, up the stairs, and around the corner. "We're the only people here." She said. I was hopeful but knew better. Around the gentle curve in the hallway, the noise of people quickly drowned out the pure silence.

They were everywhere. Coughing, crying, yelling, shouting, on phones, and asleep. Every chair was filled with people, even those seats stationed down the hallway as an afterthought. I sighed, and we moved into the check-in line. I looked around, aghast. "Touch nothing," I said.

A few minutes later, we were standing before an exhausted clerk. I checked my watch. It was 1230 in the morning.

"Phone number," she said, avoiding eye contact.

"We were sent here by St. Mary's Hospital," I said.

"Phone number," she repeated.

I gave her my info.

"There's nothing in the system. She slid an inch-thick packet of paperwork through the glass partition."

I slid it back. "Let me give you my wife's number." I watched the clerk punch in the numbers, and we made eye contact seconds later. She slid a thinner packet of paperwork under the window and sent us the triage nurse. She was pleasant but exhausted.

"I'm sure it's nothing," She said. "These outside doctors get nervous."

We filtered to the end of the hallway, walking past people that looked like they had been waiting for weeks. Finally, Eleanor and I sat down. I tried to control my severe cough and started filling out the paperwork. Seconds later, we were seen by another nurse in a small office. While she was checking Eleanor's vitals, I scanned her patient screen spreadsheet. Eleanor's name was one of two, highlighted in yellow. The nurse disappeared for a second, then reappeared. "They'll call you soon," she said.

Yeah, next week, I thought. We shuffled down the hallway catching wary glimpses from bloodshot eyes as I coughed like an old steam engine. We sat down and settled in. "SAYERS!" Someone yelled. My hand shot into the air. "We're here!" I said.

We followed the nurse through heavy security doors and into the maze-like ER. He was walking fast, and Eleanor was hunched, clutching her stomach. We were guided into a small room past a half dozen parents curled in hallway hospital beds around their children. Our glass door slid shut, and the nurse started working on Eleanor. Within minutes, an ER doctor arrived, and another port was installed in my daughter's arm. She was physically and mentally exhausted.

"We're going to rerun labs, and we don't read other people's ultrasounds, so we'll send her back for imaging." The doctor was kind, gentle, and expressive even behind his mask. As the hours slid by, more doctors and nurses came and left. In imaging, I listened to Eleanor grunt under the press of the tech's hand.

Back in the room, a hematologist was waiting for us. "We're going to admit you," she said after a brief introduction. Then the doctor started explaining her findings. I stopped listening to the words but instead listened to her tone and watched how she leaned forward. There's a formula for empathy when you're exhausted and protecting yourself when practicing trauma stewardship. There's a formula for preparing people to understand awful news. It includes slight amounts of hope sprinkled with doses of reality. I use this formula often. I knew what she was doing.

At 530 AM, we were taken upstairs to the fourth floor. When the elevator doors opened, I saw signs for oncology with arrows.

We were following the arrows.

My stomach began to sink even further. We approached another set of security doors with laminated pictures of cancer ribbons. The doors opened. How is this possible? I asked myself.

This post was supposed to be about the new composting toilet I installed. Or something about fiberglass. Or dock life. Or something else.

Instead, we find ourselves on a different kind of journey. One where my daughter looks at me and cries, "I wish I was you," thinking of that parent swap movie. “I know, sugar lump. Let's trade," I say.

Then the phone rings. Of course, it is billing, aka admissions. "Sure, let me get my credit card," I say.