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Never Ever Give Up
The Inspiring Story of Jessie Rees and Her Joyjars
By Erik Rees, Jenna Glatzer
ZONDERVANCopyright © 2014 Erik Rees
All rights reserved.
It was unseasonably warm for February, even for California. The day was sunny and crisp, and we had a four-hour break during my older daughter's swimming competition, so my younger daughter asked me if we could go shopping. Naturally. Eleven-year-old Jessie loved to shop, and it had not escaped her that there was a candy store just a few blocks away. Fashion and sweets — combine those two things in a single day, and you could make her as happy as a wren in a birdbath.
I connected with my wife, Stacey — "Meet us for lunch after Shaya gets showered and dressed" — and then headed out for a walk with Jessie. It was something we did often, window-shopping and checking out the latest in preteen clothes and accessories. It was such a happy day, far too beautiful for me to suspect it would herald the worst trauma of our lives.
We were in Long Beach to cheer Shaya on in the Junior Olympics. All three of my kids had taken up swimming, originally to my dismay. I was more of a competitive team sports guy — in fact, I had coached their soccer teams until Shaya one day said she wasn't enjoying it very much and wanted to try another sport. I was hoping she'd say basketball. "Swimming," she said. Well, that left me right out. I hated the water, but my wife had been an All-American swimmer.
Jessie and their younger brother, JT, joined as well because my wife couldn't imagine trying to drive three kids around to three different sports programs. They all joined the Mission Viejo Nadadores, a team with an impressive history. They'd been around since 1968 and won forty-seven national team championships and twenty Olympic medals. Because of our family involvement, Stacey even ended up working for the team three days a week as a bookkeeper.
After joining the team, Shaya became a terrific swimmer and was very competitive, whereas Jessie was more toward the middle of the pack and did it for the camaraderie. She made closer friends on the swim team than she did in school. That afternoon, though, she was not competing, and I had her all to myself.
As we passed a pet shop, we saw a little dog wearing a pink outfit with metal spikes in the window.
"Look, Daddy!" Jessie said with a grin. It was like a punk-rock Chihuahua.
We held hands as we crossed the streets, six or seven blocks. At one point, we stopped in at Jamba Juice for smoothies, and Jessie ordered the Razzmatazz. We turned left out of the building, and a group of about fifteen people was heading toward us because the traffic signal had just changed. It was too hard to get through the crowd side by side.
"Walk in front of me," I told her. "I'll stay right behind you." She did, and then there was a long stretch of nothing much on our left side. Just a big brick building — a bank or something. That's why it surprised me to see her staring at it. She was walking straight ahead, but her head was tilted to the side, seemingly looking and looking at this building.
"What are you looking at?" I asked her.
"I'm just walking, Daddy."
I continued watching her, and she kept her head at that same odd angle. I didn't say anything for a little while — until I couldn't understand it anymore. What was so interesting off to the left?
I pulled her aside into a parking area and stood right in front of her.
"Look at me," I said.
Her head was still tilted. I gently took her by the chin and straightened out her face.
"Do you see me?" I asked.
"Yeah, I see you."
"Okay. Keep your head just like that."
I stepped back a couple of steps.
"Do you still see me?"
"I see ... blurred."
"Okay. Stay like that."
I stepped back again, until I was about ten steps back from her.
"How about now?"
"I see you, Daddy. I see two of you."
"Turn your head until you don't see two of me."
Slowly, she turned her head right back to that same odd angle again.
"Now I see just one of you."
"That's ... interesting. Okay."
When Jessie was in fourth grade, we had taken her for a routine eye exam where the optometrist told us she needed reading glasses and also had a bit of a lazy eye and needed help strengthening her eye muscles. We'd spent months doing "pencil pushups," where she'd focus on the pencil's eraser as she gradually moved the pencil from arm's length all the way up to her nose and then back again to work the muscles. It had done a lot of good at the time. Maybe we need to go back to doing that again, I thought.
Despite the fact that she could sometimes be a bit of a drama queen, Jessie didn't seem particularly worried about seeing double. I was more alarmed than she was, but I didn't see a reason to get her nervous. Instead, we headed on to the candy store, where Jessie roamed around gleefully while I waited for Stacey for about twenty minutes. Then I texted her. "Something's wrong with Jessie's eyes. Where are you?"
"What are you talking about?" she wrote.
"Tilting her head sideways to look forward and says she's seeing double. Need you to see this."
"On our way."
Just because I figured it couldn't hurt, we did some of those pencil push-ups with Mentos in the store while we waited. I watched Jessie as covertly as I could — when she bent in to look at the jars of jelly beans, she kept her head straight. It was only when she backed up a little that she began tilting again.
Using a giant lollipop as a point of reference, I repeated my experiment when Stacey arrived.
"What do you see?" I asked Jessie, holding it close to her face.
"One lollipop," she answered.
Two steps back. Blurry. More steps back.
"Two lollipops," she said.
"Okay, tilt your head."
She did. "One lollipop."
Stacey and I exchanged looks, and then we put it aside and went to lunch, where I caught up with the latest exciting news about how the kids got to order room service in their hotel while I had spent the night back at home to take care of the dogs. Jessie loved staying in hotels, but in particular, she had a curious fascination with the miniature ketchup bottles and jellies and syrup that always came with room service trays.
As soon as we got back home to Orange County, Stacey scheduled Jessie's visit with the same optometrist we'd seen earlier. After an exam, he agreed that Jessie had some muscle weakening in her left eye — left lateral eye palsy, he called it — and sent us to an ophthalmologist and a doctor who specialized in eye muscle therapy.
She also had symptoms of a sinus infection, though, so the next stop was her pediatrician's office a few days later. In addition to giving us a prescription for antibiotics, Dr. Del Valle told us to go back to the optometrist to check out Jessie's bloodshot left eye.
The next two weeks were filled with doctor visits, one after another. The doctor didn't know why her eye was bloodshot but prescribed drops to relieve it. The specialist suggested a certain type of prism glasses to help correct Jessie's double vision.
"Has she had any other symptoms?" the specialist asked.
"Just any other physical complaints or problems?"
"She's had headaches lately."
Jessie pointed to the back of her head, down by her neck. She had been complaining about headaches for a couple of weeks, about once a day.
"Let's do an MRI just to rule out all the bad things," the specialist said.
Once we were home, though, Stacey questioned that idea. "An MRI for an eleven-year-old? That sounds unnecessary. Let's talk to her pediatrician first."
But the pediatrician agreed. Of course it was probably just a weak eye muscle, but let's be totally sure.
It was with this sentiment that I prepared to leave for a training seminar in Fort Collins, Colorado. I was scheduled to go for a certification in organizational development consultation, to help organizations with their strategic planning. I liked learning and adding to my skill set, and I had been to several seminars like this through the years. We couldn't get the MRI scheduled before I left — it would happen during my trip.
"Do you want me to stay?" I asked.
"No, you go ahead," Stacey assured me. "I'll call if there's any problem."
Little did we know.
The MRI on March 2, 2011, was done in two parts — first a regular MRI, then one done with contrast dye. That meant Jessie had to be injected with a needle, which she absolutely hated. Abhorred. As soon as I heard about it, I felt guilty for being so far away instead of standing alongside her in the room to hold her hand. Daddies are supposed to do that when things get scary.
The technician told us the doctor would call with the results. I continued to take notes at the seminar and catch up with my friends, some of whom I hadn't seen in years. It was a fairly small group of us in the field, so we tended to run into each other at events like these and share experiences.
How nice it would be to rewind to that time, the last moments I'd ever live without the terrible knowledge that was on its way.
At about ten o'clock the following morning, Stacey sent a simple text: "Call me."
My heart jumped. She knew I was in the middle of the seminar, so she wouldn't ask me to call if it wasn't important. I excused myself and headed to the hallway.
"What's up, Stace?"
"They found something on the MRI," she said with panic in her voice.
"What did they say?"
"Dr. Del Valle called and said they found something on the film, but they don't know what it is yet and I have to bring Jessie to see a pediatric neurosurgeon at the hospital in an hour."
"Let's not think the worst. It's probably no big deal. Just a cyst or something. I'll get on the next plane home — just hang in there."
I really did believe it was just a cyst. Although something worse was in the back of my mind, I was more concerned about how they were doing emotionally than I was about the MRI. After all, Jessie was a kid. Kids aren't supposed to have real health problems. I just wanted to be there to hold their hands in case things got scary. How would they remove a cyst? I wondered. Probably with lasers — medical science had come so far so quickly.
I went back to the seminar to tell my colleagues why I was leaving. It was a Christian-based group, and they formed a circle to pray with me. Then my friend Bart drove me to the airport, where United Airlines got me booked on a flight right away. I had to rush to make it to the gate because the flight was ready to board.
Gate B-23. Gate B-23. Michael Jordan's number.
It's strange the things you think of at times like these. I thought it was a lucky number.
Stacey and I texted back and forth while I sped through the terminal and arrived at the gate. It was just past the appointment time, and this was the closest I could get to sitting in the waiting room with them.
What are you hearing at the hospital?
I don't know. I'm waiting to talk to the doctor.
A few minutes later, I'd try again.
Not yet. Still waiting for the doctor.
First-class passengers boarded, and I was in the front of the coach line because I had "status" — a perk of being a frequent flier. And then, as I waited for the attendant to announce our boarding, the phone rang. As I answered it, all I could hear was my wife sobbing. She couldn't speak through the tears, so it took her a while to get words out.
"Honey, what's going on? I love you. I love you. Tell me what's happening," I said.
"Where are you?" she asked. Her voice was small and choked.
"I'm at the gate, just about to get on the plane. What's going on?"
"Jessie has a brain tumor."
No, I thought. That can't be right.
I searched for the right words to say — my wife and my children were more than a thousand miles away, and this was supposed to be just a cyst. This was supposed to be nothing, but it was a brain tumor?
Take it back, I wanted to say. Our daughter can't have a brain tumor.
It didn't make any sense. She was an athlete, a healthy little girl. Smart and good and careful. The kind of girl who follows all the rules. There was no brain cancer in our family history. This didn't add up. This could not be!
"I just spoke to the doctor," Stacey continued. "He says the tumor is in her brain stem — and it's not good. It's in a bad place."
"What does that mean?"
"It means it's inoperable."
"He said we should just spend as much time with her as we can."
My first reaction was anger. How dare this doctor tell my wife such a thing? What does he know, anyway?
"Put him on the phone with me! I want to talk to this doctor," I said.
"He stepped out of the room."
"Honey, it's not true. We'll get another opinion. Listen to me — we're going to get through this. Where are you?"
"I'm in the conference room and I'm on the floor and I'm scared and I don't know what to do."
"She's in the waiting room with Papa. She doesn't know yet. I don't know what to do ..."
The sobs started again, breaking my heart to pieces with the knowledge that my wife was all alone on the cold floor of a hospital, and she had just been told our daughter had an inoperable brain tumor, and I could not get there fast enough.
"Okay, don't say anything to Jess yet. Wait until I'm there and we can talk to her together."
"She knows they found something, though."
"That's okay. We'll get a second opinion. We'll learn everything we can first, and we'll tell her together. Just stay calm and keep Jessie calm. I'm on my way, honey. I'm on my way."
It was a lot to ask, especially because I couldn't keep myself calm. As soon as I hung up, I lost all control right there in the boarding line. I sobbed and prayed, "Please heal my daughter," over and over.
I remember sending out frantic text messages to my family and friends asking them to please pray for Jessie. My whole body shook. Many of the people closest to me learned the news via a very blunt text message.
A few people got phone calls, including Jessie's great-aunt Marilyn (whom the kids called Tanta). She had known about the MRI and had checked in about it, so I called and told her that Jessie had a brain tumor. Then I couldn't speak anymore.
"Erik, are you all okay?"
"No," I told her, "I'm not okay. I'm in an airport in Colorado and I need to be home with my family."
I cried the entire plane ride, punctuated by frequent pauses to blow my nose, in the middle seat between two men. It was seat 7E, behind the bulkhead. Through my headphones, I listened to one of my favorite worship songs on repeat — Kari Jobe's "Healer." I must have listened to it fifty times: "You hold my every moment ... I trust in you ... you're my healer."
God, please heal my daughter.
It was frantic and desperate, the hardest prayer I'd ever prayed. I couldn't breathe, and time was not moving.
Please don't let this be true.
I sobbed until I felt dry heaves coming on, so I went to the bathroom to try to throw up, but I couldn't. I just cried out and prayed, and eventually I returned to my seat. Awkwardly, neither man next to me said a word to me the entire flight.
The moment we touched down, I called Stacey again. She had arranged for a friend to pick up my car from the airport, and her father came to get me so I wouldn't have to drive. He told me they'd sent Jessie back to school so she'd have some semblance of normalcy while we figured out what to do next. She wanted to go because she had to take a test that day and was very focused on getting an A. On the way to school, Jessie had asked Stacey to quiz her.
I burst through the front door and saw several people already there to comfort us. It was good they had come, but all I wanted in that moment was to see my wife.
"Stacey? Where are you?" I called out.
She met me in the entranceway, and we just hugged and held each other. I greeted the others — my wife's family, our friends — and then I wanted information. I couldn't sit down; I gripped the kitchen chairs and stood on one side of the kitchen island while Stacey stood on the other, and I asked for every detail about what they knew so far.
Stacey handed me a piece of paper, and on it she had written the diagnosis the pediatric neurosurgeon had given her — pontine glioma.
It felt so foreign, these two nasty little words. It didn't tell me anything. All I knew was that those words were my enemy.
"What can they do for her?" I asked.
Stacey looked at me and didn't say anything for a minute. It was like she was trying to soften what she had to tell me. "Honey, they can't do anything for her."
"What do you mean?"
"It's incurable. They said all we can do is palliative care."
"Are you telling me Jessie is going to die?"
"I don't know, honey. I don't know. They said ... twelve to eighteen months."
I pushed the chair away and walked over to my wife and we hugged again, crying in each other's arms. I don't know how long we stood there, but when we finally let go, we saw that everyone else had left the room.
Excerpted from Never Ever Give Up by Erik Rees, Jenna Glatzer. Copyright © 2014 Erik Rees. Excerpted by permission of ZONDERVAN.
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