"The Summer When Everything Changed," by Linda Martin

In the summer of 2016, Linda Martin received a call from her husband that changed her life forever.

Transcript

It's almost hard to believe now, but the summer of 2016 was a game changer, a life changer. Everything in my life had sort of fallen into place.

The summer of 2016 was amazing. My kids were grown, I was an empty nester. My older daughter had two beautiful boys. My son had one beautiful baby girl. My younger daughter had just gotten married a few months before. We had just sold our company and my husband and I had gone to Europe for a celebration trip.

As we had planned, he went right to Florida to our home and I went to Chicago where I was so excited to babysit my new baby granddaughter.

So, I'm in Chicago and I had just put my baby granddaughter June to sleep, came downstairs to relax after the trip. I was a little bit jetlagged and the phone rang. It was my husband calling.

I was like, “Hi. It's great to hear from you. I'm having so much fun.”

And he said, “We have a problem.”

I was like, “How could we have a problem? We just got back from vacation. We couldn't possibly have any problems yet.”

He said, “Well, I just had coffee with Kim and Kim said that she had gone to the doctor with Amy.” Amy is our younger daughter. She had just gotten married, as I said, a few months before. Was doing great.

Amy was sick, so Kim had accompanied her to the doctor and came back. Amy had said, “Don't tell Mom. Don't tell Mom.”

True to her word, Kim did not tell Mom. Kim told Dad.

So Dad was calling me to say, “I've got some bad news.”

But we didn't even know what the bad news was yet. All we knew was that Kim said, “Dad, I went to the doctor with Amy. She has something called chronic pancreatitis, but that's not what I'm worried about. Dad, Amy is dying.”

I was just speechless. How could this happen? I had just seen her a few weeks before.

Then I thought about it. I had not seen her a few weeks before. I hadn't seen Amy for a few months. She had gotten married, she had gone on her honeymoon. She and her husband were busy and happy. I hadn't seen her for a few months, but, as far as I knew, she was fine.

And, suddenly, I'm back from vacation, I'm babysitting my granddaughter and she's dying? And what is chronic pancreatitis? I never heard of it. None of us had ever heard of it.

So, I said, “Well, we have to do something.”

My husband said, “Obviously, that's why I'm calling you. You are the someone who does things.”

And I said, “Yeah, but I don't know what this is.”

So, we hung up and agreed that the next day we would talk again when we could make some more sense of it and I could talk to Amy and reveal that her sister had told us what was going on.

And so I hung up the phone and I did what every mother does when she has no idea what's going on with her kids but she knows enough to be worried, sat down on the floor and I Googled.

I Googled chronic pancreatitis. What was it? How could she be dying? I found out that she might not be dying, but chronic pancreatitis was associated most commonly with alcohol abuse.

I kept reading article after article after article about alcohol causes pancreatitis and then pancreatitis evolves into chronic pancreatitis only in some unlucky people. Apparently, my daughter was one of those unlucky people.

I thought, “Well, I think I saw her have a glass of wine at her wedding,” and I know she occasionally has drinks. She's 40 years old. She's had a drink before, but she's not an alcoholic. She has never abused alcohol. This just didn't make any sense to me whatsoever.

I didn't sleep at all that night. I did a lot of Googling. I thought, “I just don't get it. I just need more answers. I need to find out who's an expert in this sort of thing.”

The next day, of course, I talked to Amy and my daughter Kim. Amy said, “I don't know. I've just been really sick, Mom. I've been so sick I just didn't want to tell you because you were so happy. You were going on vacation and I knew you were babysitting. I thought there's time. When you get home, I'll tell you that I haven't really been feeling very well.

But then Kim convinced me to go to the doctor and my doctor gave me a referral to a GI. We went to the GI. She took some scans and then she said, ‘You've got a big problem. You have what I think is chronic pancreatitis and you've had this for a really long time.’”

And Amy said, “So I said, ‘So what do I do,’ and the doctor said, ‘Just stop drinking.’”

And my daughter Kim said, “That's exactly what she said, Mom, and she said it even meaner than that. So we left and we were in tears and we didn't know what to do. And so chronic pancreatitis, and we need to do something.”

I said, “Okay. We're going to figure this out. There are people that know what this is all about. There are doctors who are specialists. We're going to find them, we're going to take you to them. I just don't know what to tell you. But, Amy, have you been drinking a lot?”

She said, “Mom, yeah, I drink occasionally. I have a glass of wine occasionally. You know I don't drink that much.” And she said, “I was so mad at the doctor. I said, ‘But I don't drink,” and she said, ‘Don't lie to me, young lady. Just stop drinking.’”

I said, “Okay, okay. We're going to figure this out.”

I was in complete stupor. I didn't know what to do. I kept Googling, I kept looking for where are the experts and it seemed like there were none. Where was the research going on? There was none. Where was there drug development going on? There was nothing. There was just article after article that said, “Alcohol causes pancreatitis and pancreatitis leads to chronic pancreatitis, which leads to diabetes and, eventually, to pancreatic cancer. There's a lot of pain involved and it's a debilitating disease that's progressive. There's no cure and there's no treatment. There's nothing you can do.”

So, we said, “Okay, this is who I am. I fix things. It's like there's a problem here. We have to solve the problem. We just have to find the people.”

So in my Googling, I had found a press release from a woman who said, “I think I'm going to start a nonprofit organization called Mission: Cure to find a treatment for pancreatitis. My brother has chronic pancreatitis. There are no treatments. There's no cures. We need to do something and I'm going to start a nonprofit.”

So, I got in touch with her and said, “I'm coming to New York to meet you.”

And I sat down with Megan Golden, who was thinking about starting an nonprofit, Mission: Cure and said, “I need to do this with you. I just sold my company. Nobody's doing anything. We have to do something. We have to find a solution for this.”

In the meantime, my daughter is getting sicker and sicker and sicker. She's in the hospital every few days and then maybe a week goes by, back in the hospital, back in the ER. They give her fluids, they give her pain meds and they send her home, say, “There's nothing we can do.”

So, we just continued down this path, trying to find somebody who is learning something, doing something, and, eventually, got in touch with a couple of doctors that were working on pancreatitis.

Eventually, I learned that the University of Minnesota in Minneapolis is the one institution in the entire world that treats chronic pancreatitis and had perfected a procedure called a total pancreatectomy with islet transplant that was a huge surgery to remove the pancreas and four other organs. It was the only treatment, and is today, for pancreatitis. There are still no drugs, no treatments, very little drug development pipeline, a little bit more research after the last seven years of Mission: Cure, but still no real treatments.

But my daughter was getting sicker and sicker. Amy was in the hospital, eventually went into sepsis. The doctor in the hospital said, “Do you know any place that knows any more about this disease, because there's nothing else we can do to help you? I want to just discharge you and you can go find someplace that can treat you better.”

Amy called me from the hospital and said, “Mom, I'm being discharged.”

I was like, “Oh, Amy, that's great news.”

She said, “No, Mom. They said I'm in sepsis. There's nothing they can do for me and they want me to go find someplace else.”

So I went and picked up Amy, we flew to Minneapolis and she got a full assessment there. Together, we sort of just wandered through a jungle of information that we had no idea what it was about, but eventually decided that this tremendous surgery was the only possible solution for what had become 24x7 nonstop pain.

In the ensuing time, Amy had lost tremendous amount of weight, was surviving on little Boost cans of protein drink. It was the only thing she could keep down. And she had no life. She had previously run a software company and had to go on disability, quit working because she was in bed, in pain 24/7, and losing weight and, as my other daughter said, about to die.

So she made this terrible decision that was to have these four organs removed in this total pancreatectomy solution.

In November of 2018, finally the surgery gets scheduled. Amy has the surgery and, ta‑da, no pain. She can eat anything she wants., It was a very long recovery, but life was back. Amy had a life again.

All of that is just amazing. It's like the highs and the lows. She's dying. No, she's not dying. I'm going to have to live with a disability all my life. No, I'm actually going to have to go find a job again. And how do I as a mom support all of these roller coasters of things going on in my daughter's life?

In the meantime, her husband left. Amy is all by herself now. So, we make it through all these things. And while chronic pancreatitis is not a death sentence, people don't generally die from it, it robs you of your entire life.

But Amy had this surgery, a surgery that's full of risk, left her as a fully diabetic and taking enzymes with every bite of food for the rest of her life, because the pancreas does two things: it makes insulin and it makes digestive enzymes. Without a pancreas, you need to do both externally, which she was doing.

But she was getting her life back, went back to work, when, suddenly, the complications started coming in. And because of years and years of misdiagnosis and a very long journey until she was finally diagnosed, she had had so much inflammation that she had robbed her bones of blood supply and had had to have two hip replacements, followed by complete and total kidney failure and is now back on disability and going back in to try to correct some of the scar tissue and other problems. Now, she's back into complete lack of ability to keep down food, vomiting back in the hospital, off and on, over and over again.

This story is one that has so many highs and so many lows. Through the last seven years, my daughter has gone through what seemed to be a cure, at least a treatment that took away chronic pancreatitis. She does not have chronic pancreatitis. She doesn't have a pancreas so she can't have pancreatitis. But it isn't a real solution.

We so need therapies. We so need to find pharmacological solutions so that children and adults who get pancreatitis don't have to go through this life‑changing surgery that is not a panacea, and shouldn't have to continue to live with the suffering, the digestive issues and the terrible pain with the only solution to go through this 15‑hour under general anesthesia surgery that doesn't end in Happily Ever After but just in some different manifestations and complications that Amy will have to deal with the rest of her life.

Thank you.

"Ben's Story," by Leah Myers

In the first few months of her baby’s life, Leah Myers worries that something is off.

TRANSCRIPT

Ben's story starts out like a dream, the kind of fairytale that every parent hopes for. He's born on a Friday, weighing 8 pounds, 9 ounces. The moment I lay eyes on him, I know I have never seen anything so perfect in my entire life. I swear, he's the prettiest baby in the nursery and that's a fact, not my bias.

The first morning after he's born, I'm just too excited to wait for help. I get myself out of bed and I dress Ben up in the softest baby blue sleeper that I had packed with so much anticipation. Seeing him in that little baby sleeper just made my heart want to burst with pride and love.

I had waited for that moment for 20 weeks ever since we had learned that he was a boy on the sono. I don't need to wait anymore or imagine. My baby is here and I am a mom. That feeling of holding your child for the first time, of looking down and thinking, “I did this. I created this life,” is overwhelming.

As a kid, I'm always the neighborhood babysitter, always pretending to be a mom. Caring for kids is a huge part of who I am. I imagine, one day, I'll have a family of my own and it'll be big, a whole gang of kids running around. Everyone that knows me doesn't doubt that's my destiny.

But as my 20s roll into my 30s, the dream of a large family starts to slip away. At 34, I finally get those two pink lines on the test. My dream is coming true. But because of my age, my pregnancy is deemed high risk, but I couldn't care less. None of that matters to me.

I figured this might be my only chance so I'm going to cherish every single second of it. Every flutter, every kick, every movement feels like magic. I'm literally glowing, the happiest pregnant woman you could find. I've waited so long and now, finally, it is happening.

The first few months after Ben is born are a blur of joy and exhaustion, as it is for any new parent. I'm mesmerized by every little thing that he does. But underneath that joy, I have this gnawing feeling that I just can't shake. I keep telling myself that all babies are different, but something about Ben is, I don't know. It's off.

My mom friends brush off my concerns, tell me it's hormones or first‑time mom and not to worry. And Ben is an easy baby. Super laid-back, very mellow. He barely cries. But there are moments when I look at him that I see something that feels wrong. He seems too flat, too disengaged at times. He won't nurse, although I try everything.

He won't make eye contact with me, and that's probably the hardest part because I've dreamed of those intense bonding moments where you're feeding your baby and you lock eyes and the whole world melts away. I want that so badly, but it doesn't come.

I start to think, “Maybe I should blame myself. Maybe I'm doing something wrong.” But, deep down, I know Ben isn't like the other kids that I've cared for in my past and that really scares me.

I try to voice my concerns to his pediatrician, and every single time I'm dismissed. I hear it all. “You're a paranoid first‑time mom. He's a boy and boys are lazy.” Which isn't untrue, right?

But just before he turns one, the changes become undeniable. He stops smiling. He loses the few sounds that he was making, which were ‘Mama’ and ‘Dada’. I feel like I'm watching my baby slip away.

My husband and I are sure it's autism and we try to brace ourselves for that reality, but, still, I find myself clinging to hope. I want to believe that Ben will be okay, that he's going to be the kid that I dreamed of and that he's still in there somewhere waiting to come out.

At Ben's one‑year checkup, we stand strong. We stand our ground and we demand to be heard, insisting that something is wrong. We're finally referred for developmental and hearing tests, but six days later, Ben starts to have seizures.

At first, I don't even recognize these as seizures. They don't look like what I had imagined. No convulsions, no dramatic movements. Just these quick, aggressive head drops that happen over and over and over again in clusters, one every six seconds. On bad days, these clusters lasted up to an hour. It's terrifying, but because we're so fixated on the idea of autism, it doesn't occur to us that this could be medical.

Thankfully, I've been persistent with our pediatrician. So, when I call to report it, she says, “Get to the neurologist really quickly.”

Suddenly, we're plunged into a world we don't understand. Conversations about brain disorders, terrifying diseases, even end‑of‑life care. It all feels surreal. Like, how did we just go from me trying to convince the doctor something was wrong to having a seriously sick baby? It all escalates so fast.

Within a few weeks, we learned the truth. Ben has a type of epilepsy called infantile spasms. The first thing that comes up when I Google it is an article titled “Little Seizures, Big Consequences.”

I'll never forget reading those words and feeling like my world is collapsing around me. The prognosis is grim. 90% of babies with infantile spasms either don't survive childhood or go on to living an extremely disabled life.

But I grab on to the only hope I can find in there, that 10% chance that we can still be one of the lucky ones and I tell myself we're going to do everything we can to fight our way into that 10%.

The first treatment is a brutal round of steroids, the kind of dose that you'd give to an adult. Ben's little body doesn't handle it well. He swells up, his sweet face red and puffed. He loses every single milestone he had gained in his first year. He can't even hold his head up anymore.

But when I call his doctors desperate for reassurance, they tell me to keep going, so I do. I force that drug down his throat four times a day, hoping it will work, praying it will stop his seizures, but it doesn't. Neither does the next drug or the next or the next.

Each time we start a new medication, I let myself hope again. I picture Ben's future, imagine him laughing, running, maybe playing Little League one day.

Then one day during a new round of treatments, Ben goes an entire day without having a seizure. My husband and I, we hold our breath, not wanting to get too, too excited, but that night we let ourselves dream again. We talk about what sport Ben might like, what it would be like to see him in that Little League uniform. I can picture it so clearly, a bat in his hand, grinning from ear to ear.

But at 2:00 AM we're jolted awake by the sound of Ben's head hitting the crib rails as another seizure hits. Crash! It's like the sound of hope shattering.

This goes on for months. Each new drug, each new glimmer of hope, followed by another crash, another heartbreak. I hold on to the belief that we have to be one of the lucky ones.

After months of searching for answers, we seek a third opinion in New York City. This doctor admits us right away and we spend eight long days in the pediatric ward at NYU Langone Medical Center.

I will never forget how small that room feels, crammed with machines monitoring my baby's brainwaves. He's hooked to wires. There's a camera always watching us. There's no privacy, no peace. I sleep on this crappy, blue pleather chair next to his hospital crib.

Ben is hooked up to everything. I have to jab him in his thigh with injections twice a day and he barely cries. Neither do I. I hate it. I hate every moment, but I cling on to the hope that this will be the treatment that works.

Then, miraculously it does. Ben’s seizures begin to slow and then, after five days, they stop all together.

We're ecstatic. And at our follow‑up EEG, the doctors are just as thrilled as we are. They said that they see major Improvement on his EEG.

I allow myself to believe that we're finally in the clear. Ben's going to be okay. We are the lucky ones.

As we prepared to leave the hospital, I called my sister to share the good news. And while I'm on the phone with her, I turn around just in time to catch Ben having a major seizure.

I drop the phone, hit the nurse call button and I start screaming for help.

The next 45 minutes is a blur. I remember holding Ben as he continues to seize. The clinical team comes in. They get me to sit down in that hateful blue chair. They shove a pillow under Ben's head so it won't hit the armrest on the chair as it violently drops over and over and over again.

I'm hysterical, completely opposite of the hopeful composure I've been able to keep up with since diagnosis. The tears flow steadily as I unleash the pain, as I've not yet let myself grieve. I start to cry that I'm going to lose my job, that Ben will never play in Little League. I'll never be able to have another baby, killing my dream of a large family.

I'm completely disoriented by the swing from elation to devastation. It's like the rug was pulled out from under my feet, leaving me emotionally freefalling, just trying to make sense of this abrupt shift.

The team just sits and listens and monitors Ben. They don't even try to tell me it's going to be okay.

My husband walks in somewhere in the middle of this. He has no idea what had just happened and he has this profound look of helplessness on his face, yet I'm incapable of comforting him as I'm still in crisis myself.

As Ben's seizure begins to slow and eventually stops, so do my tears. I'm utterly exhausted and barely able to function. Somehow, we managed to pack our bags, go through the discharge process and load up into the car to drive the five hours home.

I sit in the back seat with Ben and I stare at him. He sleeps most of the way, being post‑Dicel and snowed on drugs to stop his seizures, and he seems different to me somehow, almost like a different baby.

I'm tortured with the guilt of feeling that this is not the kid that I had planned for, that I had dreamed of. That baby is gone and I'm going to have to figure out how to parent this beautiful boy an entirely different way than I had ever planned.

We were so close to being one of the lucky ones.

Thank you.