‘Doctor…please believe us. Our son is not OK.’ He looked at us like we were crazy. ‘He looks perfectly fine to me!’: Mom urges ‘trust your gut’ after son’s Stage 4 Neuroblastoma misdiagnosed, cancer cells detected during ‘cancer-free hospital party’

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“My little sister, Heather, was diagnosed with leukemia at the age of 17. When I received the news, I was about three months pregnant with my third child, so you can only imagine how hard it was for me at the time. Her diagnosis hit home really heavily. It was too much for me.

Although I know she would have loved for me to see her when she was at the hospital for days at a time, I just couldn’t. Being pregnant and emotional, it was so hard for me to even imagine myself stepping foot in there. But I was always there to welcome her on the days she was able to be home. I did my best to try to make her as comfortable as possible.

There were times she wanted to give up. She would say the pain was so unbearable. To see someone you love go through so much pain is hard! But I saw how much harder it was on my mom. She was working long days and long nights at the hospital, and staying with my sister, watching her slowly become so sick. Day after day, it became her routine. She had no days off, no sleep, and there were times she went without eating a warm meal. So as much as I could, I would try to help.

Courtesy of Tiffany Zapien

But she did it! They both did. A year later, my sister was cancer free! We celebrated, and St. Jude threw her a ‘no more chemo’ party, as they do for all patients after they are cancer free. Thank God for all the doctors and nurses. After a long year, our family was at peace again. Life as we knew it was going back to normal. My sister was trying to get back to school, back to her friends, and back to enjoying life as a regular 18 year old.

I, on the other hand, had given birth to a beautiful baby boy. He was born on April 12, 2016, and was 8 lbs, 7 oz, and 22 inches. We named him Jerry Buckley Jones III. But because his father was already named Jerry, we had decided to give him a nickname. One time, while he rubbed my pregnant belly, his father said, ‘I will call him Pepe!’ I didn’t think it would stick, but it did. He had everyone calling him Pepe, even before he was born. I, myself, started to like it and found myself calling him Pepe too.

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Other then having a c-section, my delivery went pretty well. The first two days after birth, Pepe was so quiet and didn’t cry much. He slept a lot and was a good baby. But I noticed something different about Pepe’s breathing, unlike my other two babies. I stayed up the second night just to listen to his breathing. It seemed like he was working harder to breathe.

I waited for his doctor to come see him the next morning before we got discharged. I told him my concern but he said it was normal; all kids breathe differently and all tend to have heavy breathing. We were sent home, but I had this feeling in my gut, telling me it wasn’t normal.

Days and weeks went by and Pepe started to get bigger. I looked past his breathing because he was such a happy baby and seemed healthy. He was eating well, growing well, and things seemed okay.

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But things changed quickly. One night around 11 p.m., when Pepe was about 3 months old, he let out the most painful cry I’d ever heard! At first, we thought something had bit him, because of how loud and painful the cry was. His father and I checked his whole body but found nothing. We calmed him down and went back to sleep. Little did we know, that night was the beginning of a hard journey yet to come.

Days passed. Pepe started to cry through the nights. We had no clue what was going on with our sweet baby boy, because all day he was such a happy baby. But when night came, he become the opposite. For hours, he would let out a cry of pain and hurt. We checked night after night and still didn’t understand why he would cry for help at nights.

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We took Pepe to his doctor and told him our concerns. His doctor looked at us like we were crazy, because Pepe was nothing but smiles when being seen. He wrote it off as gas pains. We started giving him gas drops every night, yet the crying continued. The thought of not knowing was starting to eat at us as parents.

Then Pepe developed a cough. It was strange because the cough came out the blue — no fever, no runny nose, no nothing. Just a cough like he was congested. Keep in mind, he was still crying at night. Now add coughing. It had gotten bad! One night when his father got home from work, I told him, ‘I feel like something is not right with Pepe.’ We took him into the ER, never knowing this was just the beginning.

In the ER, Pepe was happy, playful, and so full of life. The doctor walked in and looked at us as if we were the sick ones. Yet again, we got a crazy look! ‘Are you sure this is the baby you describe as being so sick?’ he said. ‘Because he looks perfectly fine to me!’

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‘Doctor…please believe us. Our son is not okay. I know he may seem as if everything is fine, but please check him again.’ He said, ‘Ok, I’ll see about this cough. I’ll send for some x-rays but otherwise, he is perfectly healthy.’

Hours later, after a few x-rays, he said, ‘Well, I see he has a bit of pneumonia in his left side. But as far as I can see, there’s nothing that should be causing him to cry.’ They sent us home with yet another prescription, this time for pneumonia. Off we went thinking, ‘Yes! Things should get better now.’ Oh, how we were wrong!

While Pepe was on the medication, his cough actually got better — although his crying didn’t stop. After the 14 days of his prescription were up, his cough started again. This time it was uglier. We took him in to see his doctor and he gave us another prescription for his cough, and advised us to give him warm baths at night before bed. Maybe that would help sooth him. So we did, we tried it all. Nothing was working! I had enough. I told Pepe’s father, ‘This is ridiculous. Something is wrong with our son, I just know it. I feel it in my gut…We are not crazy.’ These cries were cries for help. Cries of, ‘Mommy, I’m hurting.’

After a few weeks, we decided to take him back into the ER. His cough had gotten so bad, he couldn’t breathe while he was on his back asleep. More x-rays, more waiting. Only to be told the pneumonia had turned into bronchitis. We went home with yet another prescription, hoping this would help.

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Surprisingly, the next afternoon, I saw I had a voicemail. It said, ‘Hello Ms. Zapien, this is Pepe’s doctor. I have been trying to get a hold of you ever since I received Pepe’s second x-rays from your visit last night at the ER. Please get a hold of me ASAP!’ This is where things would become harder than we could ever imagine.

Three doctors were awaiting us at the hospital. They rushed us into a room and told us things were going to be okay. We were there for days, as they ran tests on Pepe, left and right. A few hours went by, and some of Pepe’s tests had come back. The doctor started to say, ‘The mass I saw in the first x-rays they took three months ago, has actually gotten bigger. We are afraid to say this could be cancer. I don’t want to alarm you both, but it’s something we have to put out there.’

My heart stopped. I felt like all the blood in my body turned cold. My legs got weak and I felt like I couldn’t breathe. As much as I tried to keep it together, my tears came rolling like a river and all I could hear was the word ‘cancer.’ Not again! Not my baby! Noooo! But how?! And why?! Every question you could think of came running through my head. I felt like my life had shattered into so many pieces.

Although it wasn’t set in stone yet, I knew deep in my soul it was cancer. I just felt it in my gut. Pepe’s father couldn’t believe it. He kept telling himself, ‘I will not believe it until they know for sure! Nope, our son has a bad cold and that is it!’ As he tried to keep positive, I knew it was cancer. I knew in that moment, I either had to accept it and start to prepare myself mentally and emotionally for what was to come next, or keep lying to myself like nothing but a bad cold was keeping our baby from being himself.

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Pepe was about 9 months when he was diagnosed with Neuroblastoma, stage 4. A mass the size of my fist was pushing down on Pepe’s left lung, and many other small ones were forming all over his little body. It was the worst day of our lives, to hear our sweet baby boy had such an ugly sickness. It had only been a few months after my sister had beat cancer, and yet our family was hit again! My mom came running when I told her the news, and in her arms I felt so small again. I didn’t want her to let go. I stuck my face in her chest, like a little girl, and cried. But it was my time to be brave and strong, as she was. Pepe needed me more than ever.

Pepe’s father couldn’t handle it, he couldn’t bear to see his son go through what he was about to go through. His heart wouldn’t allow him to accept all of this. I understood him, I really did. I remember feeling the same way with my sister. So I had to be the strong one for both of us. My role had switched to my mother’s role, and I was determined to be as strong as her! I did have a break down here and there, to the point where I wanted to curl up and cry until I couldn’t anymore. I would have days where I got angry at God, where I was furious and upset at him. I didn’t want to pray. I told myself I had no time to pray. I couldn’t understand why he had let this happen to such a small angel like my baby.

I went through so many emotions. It was a journey I didn’t want to take on, a journey I wanted to refuse. I just couldn’t find myself not being so angry. Then times came where all I did was blame myself. Maybe it was me? Something I ate or did wrong while he was in my belly? What could I have possibly done so wrong to come to this point in life? It was just a constant battle between myself and my mind. Pepe’s father dug himself into work, trying to find ways to run from it as well. We just didn’t know how to cope, or where to start.

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Treatments started a week after he was diagnosed, on February 28th, at St. Jude Children’s Hospital. From that moment on, St. Jude became our second home. Before Pepe could get treatments, he had to have a line inserted into his chest, straight to his heart. The procedure was only supposed to last 45 minutes, but it took three hours. The mass on Pepe’s lung was so big, they almost lost him while under the anesthesia. Pepe had stopped breathing. After three hours, Pepe was in the recovery room on a breathing machine, because his breathing was still low.

It was in that moment, I had my biggest break down. It was the first time I looked at Pepe’s father and told him, ‘I don’t think I can do this. As much as I’ve tried to prepare myself for all that is to come, I can’t! I’m scared out my mind! I feel so helpless! I’m doing such a bad job at keeping it together.’ Jerry held me and said, ‘I know. It’s impossible to prepare yourself for this, just as it’s impossible for me to run from it. As much as we try, we can’t. We can only live it day by day.’ And that’s exactly what we did from that moment on.

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My sister Heather walked in just moments later. She hugged me and said, ‘This is going to be very hard for Pepe. It’s going to be painful to the point where there will be days he can’t bear it. But you have to understand, what will make it easier on him is you staying positive. When you feel helpless because you wish you could take it all away, trust me, you being there every time he looks up, no matter how hard or ugly it gets, is more then enough! Plus, he is in good hands here at St. Jude, all these doctors and nurses are not going to let you guys fight alone. And you have us as well. Just as they did for me, they will do for him.’

We had bad days, we had good days. Every day that passed, I started to let go of my anger, stopped blaming myself, and stopped being so mad with God. I started to pray a lot. I prayed every time I felt like I couldn’t do it. When we had bad days, I prayed. On good days, I gave thanks. I was living it just as Pepe’s father had told me to…day by day. Jerry was my hope. I was his strength. And what kept us going through it all was Pepe.

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Throughout all the chemo, long days, and hard nights, Pepe always kept a smile on his face. He laughed, smiled, and played like there was nothing wrong with him. Because of him, we were able to stay positive. He smiled so much it was as if he was telling me, ‘Mommy, don’t be sad anymore. They found it. The bad thing making me hurt, they found it.’ We were getting our baby boy back. Not all the way back, like we wished, but he was getting there.

Underneath all the meds, chemo, needles, and lines in his chest. My baby boy was becoming himself again! No more loud painful cries at night. No more heavy breathing or coughing. Despite the bad days, long nights of no sleep, and days of chemo after chemo and medicine after medicine. Weeks of being isolated for infections that knocked him all the way down. The light at the end remained bright. Pepe fought cancer, determined to win, as we fought beside him every step of the way.

Fast forward to almost a year later. Pepe had spent his first birthday at the hospital, his first Christmas, his first steps, first words… pretty much his first everything. It was as if the hospital halls became Pepe’s playground. Jojo and Daniel (Pepe’s older sister and brother) were a big part in helping him still feel like a normal one year old.

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Pepe had finished all his treatments. It was time for testing again, to see if the cancer was gone. As usual, when tests were done, we had to come in everyday for a week straight. After four whole days of testing, the results came back that his cancer was all gone. Tears came rolling again, but this time they were full of joy! As Pepe’s father and I were going through the paperwork, I saw one test had not been done on him this time around. I was confused.

His doctor said it was because all the other tests looked good and his x-rays were nice — no sign of a mass or of any of the small ones. They were all gone. I let him know there was something telling me, deep down, Pepe should also have this test done. I would not be at peace until he did. The doctor understood and had it set up the next day, without any question. He told me, ‘I have learned to never question a mother’s intuition. We can have the results at Pepe’s ‘no more chemo’ party. Just so your mind can be at ease.’ The finish line was right in front of us, and I was ready to run through it!

Pepe’s ‘no more chemo’ party was three days way. We had invited everyone, but unfortunately family was not able to get off work, and neither were friends. It was just Pepe’s father, one of his good uncles on his dad’s side, Pepe, and I. Although it was a small group, we were ready to celebrate his big finish!

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Dr. Davi walked in, his face looked as if he wasn’t so excited. It was then my heart started to feel heavy again. ‘I’m sorry, but there are still cancer cells in his bone marrow. Today will not be his ‘no more chemo party’ as he has to take on another six months of treatment.’ It was as if they had snatched the finish line right from our faces. It was literally there one minute, and gone in a split second. I didn’t cry this time. I sucked it up and said, ‘Ok, let’s get this over with.’

Dr. Davi told us, ‘This is one of the big reasons I will never question a mother’s intuition, and why you should never question your gut as a mother. You guys have come a long way, don’t feel discouraged now.’ Honestly, Dr. Davi was an amazing doctor! He was kind, caring, and treated Pepe as if he was his own son. He was offered a higher position in another state. He refused to take it until Pepe was all done with his treatments, and completely cancer free. That right there, was one of the reasons we felt Pepe was going to be okay.

Those six months went by. Pepe started to look better than ever! He didn’t cease to amaze us. During his first treatment, they told us Pepe would mostly likely not be able to walk until he was about 3 years old, due to all the chemo. Pepe didn’t let that get to him. Being very careful, and carrying his IV backpack everywhere he went, he didn’t let anything stop him. He started to walk around when he was a year and a half old. His second round of treatments was just as hard as the first, but we pushed through it.

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We approached the end of his treatments. I could see the finish line again, but this time I just knew it wasn’t getting taken away from us. I just knew we were going to cross it, and we did! I was so proud of our baby boy and how well he fought. We did it! Words couldn’t explain how happy and excited we were. It was time to start our new journey being cancer free.

A week later, we had to come back for just one more check up, before Dr. Davi could actually say his goodbyes. He gave him one more good check and told us it was time. Pepe’s doctor cried as he hugged him, telling him he was so happy to have been his doctor. He said he was the bravest baby he’d ever seen go through what he went through. He couldn’t believe how, through all of it, Pepe always had a smile. It was hard saying goodbye to a doctor who not only helped us get to the finish line, but cared about our baby as if he was his own.

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The nightmare was over! He got to start doing a lot of what a normal 2 year old does — like going to the park, swinging, and going down a slide; trying certain foods for the first time; and getting to play with other kids. Everything was new to him. He was very shy the first year he was around any new people. He was literally attached to my hip, and no one could touch or come near him without him freaking out. I think it was because every time he’d seen a new smiling face come into his room, it was to poke at him or hurt him in some way. It took a while for him to start trusting again.

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Still to this day, at 4 years old, he tends to get iffy about new people. Other then that, Pepe is a healthy, loving, caring, sweet, kind, supper happy, joyful 4 year old! We still go to St. Jude for check-ups every six months, to make sure his cancer does not come back. After he turns 5, they say his type of cancer is not likely to come back, because it’s mostly seen in children under 5. So far, two years later, we are still cancer free and very thankful.

I am proud to say I, Tiffany Zapien, gave birth to my hero! In many ways Pepe will never know how much he changed me. I learned how strong I actually am. And because of Pepe and this journey in our life, I can honestly say, I learned life can come at you fast and change in the blink of an eye, but if you take it one day at a time you can overcome anything. It also helped me learn to always try to find the good in every bad situation. To trust in God and always listen to your gut feeling. A woman’s gut feeling is a gift God gave us, don’t ever question it and ALWAYS GO WITH IT!”

Courtesy of Tiffany Zapien

This story was submitted to Love What Matters by Tiffany Zapien of Tennessee. You can follow her on Facebook and follow Pepe’s journey on InstagramDo you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube  for our best videos.

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