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Jessie Journal

My Jessie Journal:: Hi Sweet Pea, it’s daddy! I know it’s not Thursday but it is March 3rd and 8 years ago today our family of five was forever rocked by a seismic shift…here is what I wrote about that day in your book Never Ever Give Up. I remember it like yesterday…I was in Fort Collins, CO when the shift started…

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At about ten o’clock in the 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.
Anything yet?
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 sup- posed 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.”
“What?”
“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 doc- tor,” 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.”
“Where’s Jessie?”
“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 writ- ten 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.
What do you do when someone puts an expiration date on your daughter’s life?

When a child is diagnosed with cancer, it isn’t just the child who suffers. It isn’t just the parents or siblings either. Imagine how many people had to hear the news for the first time—her grandparents, aunts and uncles, best friend, cousins, teachers, classmates, swim friends, coaches. It was a devastating shock for so many people. I had texted my brother-in-law, Jessie’s uncle T. I didn’t know he was also in the Denver airport at the time. He had just gotten off a plane and was waiting to meet up with his wife, who was clearing security on her way to board a flight out to a training seminar. His phone’s text tone announced my text: “Jessie has an inoperable brain tumor. Help.”

He had to wait at the end of that concourse to deliver that news to his wife, Kim. Tenderhearted Kimmy, who has been so close to the kids since the time of their births. It was the hardest thing he had ever done.
All three of us had been at Denver International Airport, for three different reasons, when we got the news. All three of us have painful memories we can never erase. Kimmy broke down on that concourse, falling to the ground sobbing. They have to walk that concourse every time they travel.

Kimmy canceled her flight and instead flew straight out to us, with T following the next morning. Tanta, who was known in our family for her emotional sturdiness, went to pick up Kim at the airport. I didn’t know that Tanta misunderstood what was happening. She heard “inoperable,” but she didn’t translate that to “incurable.” She thought it just meant it would have to be taken care of with radiation instead. It wasn’t until she and
Kim met with Stacey outside our house that the gravity of the situation set in — there was no hope aside from divine intervention. Every one of us believed in that possibility, so that’s where our focus went.

My pastor, Rick Warren, arrived to join his wife, Kay, who was already with us. Pastor Rick had been a father figure to me since I arrived in his church in the early 1990s, newly married and looking for a place to belong. Since the church didn’t have a group for young couples, I volunteered to start one and then was invited to work for the church in 1996. After attending seminary, I became a pastor at Saddleback.

Maybe people think that pastors are supposed to be “above” regular feelings like fear and grief, but it’s not true. Even though I believed in heaven, I didn’t want my daughter to go there any- time soon!

“Let’s get on our knees and pray,” Pastor Rick said, and we all did.
“God, please heal my daughter,” I said—and I couldn’t stop saying it. I just kept repeating it, loudly and painfully, an uncontrollable yelling. “Please heal my daughter! Please heal my daughter!”

I felt arms around me. “We’re here for you,” Pastor Rick said.

For about twenty minutes, I could do nothing else but yell and plead. Finally, Stacey gently reminded me that the kids would be home from school soon. We didn’t want to cause alarm. Even though Jessie knew Pastor Rick and Kay from church, they weren’t regular visitors at our house. She would know something was up, and we didn’t have the answers yet. We had to ask everyone to go so we could clean ourselves up and try to act like our entire world hadn’t just fallen apart.

The house was quiet for just a little while as the two of us the walk struggled to swallow our emotions and bottle up our fears. Then Jessie came bounding through the garage door—she’d seen my car out front.

“Daddy!” she said. “You came home early.”
“Yeah, honey,” I said. “I wanted to be here with you. I know you had to go for that MRI yesterday.”
“Did Mommy tell you I had to get a needle?”
“I heard.”

When they got home, Shaya and JT went to swim practice, but we told Jess she didn’t have to go if she didn’t want to because of her headaches. She opted to stay home. In a way, that’s what we were hoping because we wanted to tell her the news first, but in another way, it was terrifying. We barely understood what was happening ourselves, and we were falling apart — how were we going to tell Jessie just the right amount? The amount of truth that would bridge the gap between knowing nothing and knowing the abysmal everything.

Neither one of us remembers exactly how we ended up telling her. Those early days are such a blur of shock and survival. I know we said the doctors had found something wrong on her MRI and were going to have to treat it, but we didn’t know how yet. Her eyes slowly filled with tears.

“But, honey, you’re going to be okay. We’re going to fight this thing, and we’re going to get through this,” I said.

What I didn’t say out loud was, “I hope.”

When the other kids got home, we ate dinner as a family like always, and then we had a family meeting. Telling Shaya and JT was nearly as hard as telling Jessie, because they deserved to still have hope too. Whereas Jessie would just accept whatever we told her, Shaya was fourteen years old and more likely to look things up on the Internet. We told them only the broad strokes of what was happening. We didn’t use the word cancer, and we didn’t tell them Jessie could die. We just said there was some- thing in the back of her brain that didn’t belong there, and that we were all going to have to pray as hard as we could because Jessie was in for a tough fight.

Nobody had a big reaction. Everyone was worried, but it seemed all the kids were looking to us for cues. When we assured them things would be okay, they believed us. Afterward, they did their homework and took showers. We watched television on the couch—Jessie’s favorite part of the day—and we kissed them good night. Then Stacey and I went to our room and fell apart. That was going to be our routine nearly every night to come—hold it together until the kids were asleep.

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Forever a family of 5 Jess!!! I’m so sorry you got cancer…I wish it could have been me so bad!!!

Miss you so much…love you tons more…see you in a wink Sweet Pea!!! I promise!!!

xoxo,
daddy

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