We were ecstatic right from the moment we found out we were expecting a baby. We had made so many plans for our child! We’d have a nice house with some land. There’d be space for a ton of toys and dogs. He or she would be able to run wild. It would be perfect.
Then we found out it would be a ‘he’ and picked out his name – Bentley. We waited impatiently to meet him. When he arrived, Bentley was just what we needed to make us into a family. He was perfect – happy and healthy. His pediatrician said he was advanced for his age. He was gentle, outgoing and always had a smile on his face.
In May 2015 we bought two acres of land in the country and began to plan our house-building project. We decided to move out of the city so we could get used to country life. In time, we’d make all our dreams come true. That seemed to be happening when, in October 2016, we learned our second child was on the way. were so excited! We couldn’t wait to see Bentley as a big brother – he was great with other kids and such a kind, giving child. My doctor had some concerns about my pregnancy because I had high blood pressure. She wanted to monitor me, which meant more appointments. At the time, we were living almost two hours away, but I didn’t want to switch doctors as I was comfortable with her. So, in November 2016 we moved back to Depew, New York, where we rented an apartment.
One night, I got up to go to the bathroom and checked on him – I was shocked to notice one eye was swollen shut. The lid looked transparent
Within two weeks, I noticed there was something ‘off’ about Bentley. At first, I thought he was just getting a cold. Then, a few days later, he stopped eating. He barely drank. And he was so tired – he just wanted to sleep.
I was a stay-at-home mom at the time. Phil, my husband, was working out in the country, leaving the house at 5am and not getting home until 8pm. So I took Bentley to see his pediatrician, who agreed he probably had a stomach bug. She advised me to give it time and keep him hydrated.
Three days later, Bentley was worse. More tired and not eating or drinking at all. He wasn’t having any wet or dirty diapers. His doctor suggested a suppository in case he was constipated. I syringed water down his throat, just to get something into him.
Imagine holding down your pretty-much-lifeless child and doing this. I cried every day and was exhausted. I felt there had to be something else going on.
Bentley still co-slept with me then. One night, I got up to go to the bathroom and checked on him – I was shocked to notice one eye was swollen shut. The lid looked transparent. I told my husband I was taking Bentley to the children’s hospital right away.
We waited hours to see the doctor, who said Bentley had periorbital cellulitis. He prescribed a 14-day course of antibiotics. After ten of those days, Bentley’s other eye swelled shut. They tried another, stronger antibiotic. We were warned the infection could travel to Bentley’s brain and to take him straight back in if the swelling spread.
How could a perfectly healthy two-year-old go deteriorate so quickly from being lively and energetic to this lifeless toddler with cancer?
The next morning, I could see it was travelling up his nose. Instead of going back to the children’s hospital, I took Bentley to Five Star Urgent Care. As part of their evaluation they wanted Bentley to walk, but he collapsed when he tried to bear his own weight. We were told it was something in his brain and we should return to the children’s hospital for scans and tests. I refused, arguing that they just kept saying it was an infection.
Instead, we went to Millard Fillmore Suburban Hospital where Bentley had blood work, X-rays, and scans. The doctor said Bentley needed more tests they weren’t equipped to do, so we were rushed back to the children’s hospital by ambulance.
The hospital assumed Bentley was either constipated or had twisted intestines. Then they discovered his red blood cell count was low and said he’d need a transfusion. They’d run some extra abdominal ultrasound tests to confirm their suspicions while we waited.
Bentley was asleep and the technician joked it would be the easiest ultrasound she had carried out all day. She was nearly done when Bentley woke. I was standing to one side, and he twisted as he reached for me.
The technician gave me a look and asked if she could take more images. She said she couldn’t tell me anything at that stage, so I could do nothing but agree and wait.
About two hours later, the doctor told me they’d found a cancerous tumor in Bentley’s right adrenal gland. They weren’t sure yet how bad it was. I said it must be a mistake. How could a perfectly healthy two-year-old go deteriorate so quickly from being lively and energetic to this lifeless toddler with cancer?
I was living a nightmare, trying to wake myself up and find out it wasn’t real
I called everyone I could think of. I was living a nightmare, trying to wake myself up and find out it wasn’t real. We waited until 4am for a room on the hematology oncology unit and were told what would happen. There’d be a biopsy to confirm the cancer and determine what stage it was at, then prognosis and treatment plan.
I barely slept, researching as much as I could. The next morning, the oncologist looked shocked when I asked if it was neuroblastoma – she realized I’d had a busy night. She said that was what they suspected but wouldn’t know until after the biopsy.
It was so hard to hand Bentley over to their care. I couldn’t sit still, jumping up every time the door opened. I was waiting for the surgeon to come and give us an update – or, better, to say everything was ok and Bentley was fine. That the nightmare was over.
Instead, it was just beginning. Two days later the results were in – stage four, high-risk neuroblastoma. The next step was the Children’s Oncology Group (COG) protocol. Six rounds of chemo, with stem cell harvest and tumor removal. The days began to blur together.
As a parent, you can’t help but wonder if you’re doing the right thing. If there’s anything you should be doing differently
I kept cancelling my own medical appointments because I didn’t want to leave Bentley. After his first chemo session he had the expected side-effects – weight-loss, nausea, vomiting and tiredness. As a parent, you can’t help but wonder if you’re doing the right thing. If there’s anything you should be doing differently.
That’s when my husband and I decided to look at other hospitals for a second opinion. Something just didn’t feel right.
After Bentley’s chemo, the drugs needed to be flushed straight out so they didn’t damage his other organs – a get-in-get-out approach. We had to hold him down to give him medication – as if he wasn’t going through enough. He was feverish and shivering, but still sweating. We didn’t know why, or when it would stop.
Round Two. He coped better overall, although he still vomited. We were told he could also still need a blood transfusion; in fact, we’d end up staying in the hospital for seven to ten days each time, with weekly blood work to make sure things were under control.
During the third round, we were in the play room with Bentley hooked up to his chemo IV. The nurse came to disconnect the bag and put him onto hydration. As she went to pick him up, she didn’t notice she was stepping on his IV line – it pulled out, snapping the Broviac catheter from his chest. There was blood everywhere. We ended up having to clamp it shut, and the next day Bentley had to have emergency surgery to replace the line.
While this was going on, we were still looking at switching hospitals for Bentley – we wanted the best possible care for him. We got our consultant appointment with the Memorial Sloan Kettering Cancer Center in New York City but decided to stay with our local hospital for the time being. We were told the two oncology teams were in agreement – chemo was chemo no matter where it happened. Both hospitals had the same frontline protocols and our local hospital was familiar with us and Bentley.
That changed, though, as the time approached when Bentley’s tumor would be removed. The oncologist at our local hospital said he wasn’t comfortable removing the tumor due to its nature – so Sloan Kettering it would be after all.
We then learned Bentley had other tumor spots we’d been unaware of
There was a further delay when Bentley had a line infection and wasn’t stable enough to travel to meet the consultant. This meant the tumor removal was postponed too. Bentley struggled to shake the infection and ended up having surgery to remove and replace the line, so it was February 2017 before we went to meet the surgical and neuroblastoma teams in NYC.
They were optimistic they’d be able to remove all Bentley’s tumor, but the doctor wanted to carry out some scans just to double-check everything first. We then learned Bentley had other tumor spots we’d been unaware of. There was the main tumor and Bentley’s right adrenal gland, and then another one on its way to wrapping around the main vessels of his spine. The doctor was still happy to carry out the surgery, but it would mean two separate, long and invasive procedures.
I felt my heart shatter all over again. My head was full of questions. Were these tumors new? Had they been there all along? Did our home hospital know about them? If so, why hadn’t they told us? We would never know the answers.
They had to get him into surgery and remove that line immediately
The first operation was scheduled for April 18, 2017. As the day approached, Bentley developed another line infection. It was an anxious time.
Bentley was given anxiety medication prior to going into the operating room; his neck swelled up and we realized we’d have no chance to say a proper goodbye. They had to get him into surgery and remove that line immediately.
We were nervous wrecks when Bentley was in surgery. We got updates every couple of hours, but we didn’t really know what was happening. I couldn’t stop pacing. My son was in good hands, I knew that – but would I see him alive again? Just how invasive was the surgery? How bad would his scars be? Would he remember all this in years to come?
The procedure ended up taking 14 hours – the longest time I’d been separated from Bentley since he was born. The surgeon explained everything that had happened and what to expect when we saw Bentley. He’d have a scar from the center of his abdomen to his back, and another across his neck. He’d have a breathing tube, a chest tube and a drain tube, as well as a catheter. He’d look swollen due to the overload of fluids and would be asleep as long as he had the breathing tube in.
In the event, it wasn’t like that. He’d managed to get the breathing tube out and was awake. It was a scary sight – he was puffy, with monitors and tubes everywhere. I held his hand and he turned his head to me, but his eyes were so swollen he couldn’t open them. He asked for his Paw Patrol blanket and a sippy cup.
The doctors had him up and moving just nine hours later – too soon, I felt, but accepted they knew best. He was unable to eat or drink for three days, though. After four days in the ICU, Bentley was moved to his own room.
We met with the neuroblastoma team and said we wanted all Bentley’s care to be transferred there, to Sloan Kettering. Bentley started his next round of high-dose chemo that day and it hit him hard. He couldn’t walk, barely ate, and his weight dropped to 26lbs from 41lbs. He picked up a virus. My due date was getting close, but I couldn’t leave his side.
I thought I had wet myself, only to realize my waters had broken
We were due to go home a week after the chemo. As we sat in the Ronald McDonald room, I started having contractions. I knew I had to get home. I called my own mom to come and get me, from Buffalo, and left while Bentley was asleep.
The next morning, my husband and son flew home, where we all stayed for a month. Bentley had weekly blood draws and transfusions, and there were a few nights in hospital too. He was discharged on May 9, and the next day I started getting really strong contractions. I took a bath to try and ease the pain. Bentley wanted to take a drive so off we went. Then I thought I had wet myself, only to realize my waters had broken.
So, back to the hospital we went. This time it was my turn to stay behind – my husband took Bentley home until it was nearer the time for me to give birth. We’d never left Bentley since his diagnosis – one of us was always with him. We’d sold our land and second car so we could do this. Now, though, I needed my husband and Bentley couldn’t come along.
My sister stayed with him, but as soon as our second son was born I made Phil go back home. As if we didn’t have enough to worry about, Clayton – our new baby – had breathing issues. He was put on oxygen and moved to the ICU. I was depressed and anxious being away from Bentley. Sitting alone in the ICU with my newborn son didn’t help.
Then, when we were allowed home, I had a heart-melting moment when Bentley met Clayton for the first time. He’d managed to get off the couch and walk to meet his little brother – the first time he’d walked since his surgery. They’ve been best friends ever since.
How could I be happy for the new life I’d brought into the world when the one I already had was fighting for his life on a daily basis?
Clayton was just three months old when it was time for Bentley’s second operation, to remove the tumor on his aorta and spine. It was a more invasive and complex operation than the first and I found it harder to hand Bentley over to the hospital staff.
My heart was breaking. How could I be happy for the new life I’d brought into the world when the one I already had was fighting for his life on a daily basis?
As before, we got regular updates. “Bentley is stable. His vitals are great. Dr L is still operating.” I felt I couldn’t leave the waiting room – what if they came looking for me and I wasn’t there? Five hours after the operation began, we got another call. So soon? My heart sank.
“Hi, Mrs Hayden. The doctor wants you to know he’s ready to close and would like to talk to you. Can you head up to the fourth floor?”
Really? After just five hours?
We learned a neurologist had been present for the whole procedure. The tumor was wrapping the nerves of Bentley’s spine and they wanted to make sure he didn’t end up paralyzed. We were told to expect the same scars as before – one from Bentley’s abdomen, around his ribs to his spine; the second on his neck. Bentley would recover in the ICU and would then move to his own room for a week of high-dose chemo before being allowed home.
A month later, we returned for scans. The tumor was gone from the surgery site, but they found three new spots. The team decided to put Bentley on a new intensive treatment, but he had an allergic reaction. I constantly asked myself if we’d made the right choice.
I asked if he could come home for his third birthday before the next round of treatment. We had a huge party and Bentley had the best time – but that night he got sick again. We went back to the children’s hospital, where they found he had E. coli. This was the worst infection yet. After a few days Bentley’s lungs started to collapse; my baby was put into a medically-induced coma with a machine doing most of his breathing for him. Gradually, he improved. I made arrangements for us to be transferred back to Sloan Kettering.
We almost lost our son on his third birthday. Since then, we’ve spent extended periods in NYC just so he can be treated there. He’s had 14 radiations cycles, 19 rounds of chemo, nine rounds of 3F8 treatment and two cycles of MIGB therapy.
I was praying and begging for a miracle. Bentley couldn’t die. How would I live without him?
In October 2017 we were told the treatment wasn’t working and they’d need to plan what happened next. I cried and screamed and decided to take Bentley home. I didn’t want to wait there, only to hear there were no more options and my son would die.
I stared at the sky during the nine-hour journey, praying and begging for a miracle. Bentley couldn’t die. How would I live without him? And it seems I got an answer. The next day, Bentley’s oncologist called to say my son was NED – No Evidence of Disease. The other oncologist had read the scans wrongly!
Sadly, our joy was relatively short-lived. We continued with treatment, just minus the chemo. And then in January 2018 we learned there were completely new spots. I was devastated. When would Bentley get a break? When would he be able to enjoy a normal life?
That was when the team decided to try MIBG therapy – something a person is only allowed two rounds of in their life. Bentley had to lie on a bed behind a lead wall and we had to stay a minimum distance away from him because his body would be giving off dangerous levels of radiation. I couldn’t understand how I could say ‘yes’ to letting my son endure this but stay protected myself.
His levels were checked every day, and finally – on Day 5 – we were allowed to go home. We still had to keep him away from Clayton for two weeks though, which meant our little family was often divided. It really wasn’t fair.
After five weeks, it was time for more scans – which showed there was no change. I couldn’t help but blame myself. I wondered what I’d done that was so bad for my son to be punished like this.
The team agreed Bentley could have his second – and final – round of MIBG therapy on April 17, 2018. As well as coping with the aftermath, there were other issues to deal with.
Bentley is seeing a psychiatrist and is on anxiety medication. He has to see a specialist as his gastrointestinal tract is screwed. There’s also some hearing loss due to the chemo. He doesn’t deserve this. No child does.
We were handed a 30-day eviction notice from our apartment
Our situation means we have no income. We sold our land and our car. We’ve had to rely on SSI (Supplemental Security Income), donations and charitable foundations to pay our bills. We’re proud people, and it’s hard to swallow. Our priority has been to pay our rent, usually months in advance, to make sure Bentley had a safe place. Somewhere he knew was home.
So it was a punch in the stomach when in April, for no reason at all, we were handed a 30-day eviction notice from the apartment we’d rented since November 2016. Our landlady knew what was going on with Bentley. But when I asked her why, she told me she didn’t need a reason – they’d just decided not to lease to us anymore.
Now, on top of everything else, plus planning for Clayton’s first birthday, we had to find another place to live. Pack up and move on. We were lucky our community helped us.
We’re not kidding ourselves. We know there’s a long way to go
This was followed up by some good news in August 2018 – the first PET scan after Bentley’s last treatment showed no evidence of neuroblastoma anywhere in his body.
We’re not kidding ourselves. We know there’s a long way to go. There’s still some treatment to go through. Then, if the follow-up scans are still clear, Bentley will move onto a vaccine trial only offered at the Memorial Sloan Kettering Cancer Center – that will last a full year and will hopefully prevent any relapse.
We agreed as a family that travelling back and forth to New York City, plus trying to get our lives back on an even keel and start earning again, was just too hard. So we packed up and left Depew to move as close to NYC as we could. It means that, after treatment, Bentley and Clayton can be home with their own toys and sleep in their own beds.
It’s tough as we try to get things back together, find jobs nearby and work around Bentley’s treatment. But we’ll do whatever we have to for him. We might be struggling, but at least we’re all together.
I still question daily why my son had to go through this. He’s never done anything wrong in his life, yet he’s fighting every single day.
There are some days when I just want to say stop – that’s enough suffering. Then I look into Bentley’s big brown eyes, see his smile and dimples. And I pick myself up and carry on, because he is worth it all. His strength will help me get back on my feet a million times over. He will beat this. And one day, he’ll make a difference in this world.