“From the day we found out we were expecting — we were ecstatic. We had so many things planned for our child. A nice house with land so they can have a ton of toys, dogs and run wild. When we found out we were having a boy, we immediately had his name picked out. We knew he was what our family needed. We lived a normal life as husband, wife and son. My husband and I both worked to provide and give Bentley everything we could. Bentley was perfect — always so happy and healthy; his pediatrician said he was advanced for his age. He always had a smile on his face and was so gentle and outgoing.
In May of 2015, we purchased two acres of land and started planning our house to build. We decided to move to the country to get used to that way of living and begin making all our dreams come true. In October of 2016, we found out we were expecting our second child. We were very excited and couldn’t wait to see Bentley as a big brother, seeing as he was so great with other kids and always so giving. My doctor was concerned about my pregnancy because I had high blood pressure and she wanted to monitor my pregnancy as high-risk, which meant more doctor appointments. We were living almost two hours away at the time, but I was comfortable with my doctors and didn’t want to switch. Since we only had one vehicle, we had to move closer to the doctor.
We moved back to Depew, New York, in November 2016, and within two weeks, I noticed something was off about Bentley. I thought he was just coming down with a cold and that it would play out. After a few days, Bentley stopped eating and was barely drinking – he always so tired and just wanting to sleep. At this time, I was a stay-at-home mom and my husband kept working his job out in the country; he would be gone from 5 a.m. until 8 p.m. and I never left Bentley’s side. I called his pediatrician and brought him in for an appointment where she agreed that he had a stomach bug and to give it time and to keep him hydrated. But after about three days, Bentley was becoming more and more tired and more unable to eat or drink at all. He also was not having any wet diapers throughout the day or any bowel movements. I called his doctor to explain what was going on and she suggested giving him a child’s suppository to try and help him go to the bathroom (thinking he was constipated) so I bought one at the store. When I got home, I immediately had to push it into his rectum. I was trying everything I could. I would use a syringe to get water down his throat just to try to get something into him. Imagine holding down your already lifeless child and forcing them to eat or drink something. I cried daily. My heart was shattered. There had to be something more.
A few days later, I woke up to go to the bathroom and happened to check on Bentley (he still co-slept with me). I shined my phone light at him and noticed his eye was swollen shut — so bad that his eyelid looked transparent! I called my husband and told him I was taking Bentley to the hospital. Off to children’s hospital we went, where we waited which seemed like hours to be seen. Finally the doctor came in and said Bentley had periorbital cellulitis, an infection on his eyelid, and was put on a 14 day antibiotic. Ten days passed and Bentley’s other eye swelled shut. The antibiotics weren’t working. We went back to children’s hospital where they tried another, stronger antibiotic, and told us the infection could travel to his brain, and if the swelling spreads to bring him right back in. The next morning, Bentley’s eyes were were swollen shut and it had started to travel up the bridge of his nose. This time instead of taking him back to children’s hospital, I took him to Five Star Urgent Care where they did an evaluation. They wanted Bentley to walk, and when he tried to bare weight on his legs, he collapsed.
Bentley and I waited for the ambulance and we were rushed back to the children’s hospital where my husband met us. They were assuming Bentley was constipated or had entwined intestines, so he endured more blood work and testing. They finally told us Bentley’s red blood cell count was low and he would need a blood transfusion, so while we waited for that, they said they were going to run some abdominal ultrasound tests to clarify what they were suspecting. At this time, Bentley was asleep. The ultrasound technician came into the room and since he was still asleep, the technician joked that this was going to be the easiest ultrasound she’s done all day. She continued to take her pictures and Bentley woke up and went to reach for me. I was standing on the left side of him, so he turned his abdomen towards the right to reach for me. The technician said, ‘Mom, do you mind if I take more imaging? If not, I can get an order from the doctor.’ I agreed and asked her if she suspected something. She told me she couldn’t tell me anything and that she would feel more comfortable taking more images.
About two hours later, the doctor came in and asked if anybody was there with me. She proceeded to tell me they had found a tumor on Bentley’s right adrenal gland and they knew it was cancerous. They were unsure as to what staging or kind, but they knew for a fact it is cancer. I held Bentley so tight, crying and asking, ‘How do you know? Are you sure? Why him?’ She grabbed my hand and said, ‘I am sorry, but we are sure.’ My husband showed up and I was a complete mess, barely able to breathe. He asked me why I was crying. I looked at him and said, ‘They told he has cancer.’ He didn’t believe me. It was a complete shock to everybody how a healthy 2-year-old, never injured, never had anything wrong, can go from being so happy, healthy and energetic to not eating, not drinking and lifeless, to being diagnosed with cancer.
I was living a complete nightmare, trying to wake myself up, and that’s when it hit me that we weren’t going home. We waited for a room on the hematology oncology floor to open up. I barely slept, doing all the research I possibly could do. The next morning when the oncologist had came in, I mentioned neuroblastoma and if this could possibly be it. She was completely shocked and said, ‘I see you didn’t sleep,’ and I said, ‘Absolutely not.’ She confirmed they believed it was neuroblastoma, based off where the tumor is primarily located, but they would not know the staging or treatment options until the biopsy came back.
The next day that they went down for his port placement and biopsy and I remember just holding him. When the nurse said, ‘OK, we’re ready to take Bentley in,’ I couldn’t find myself able to hand him over. I was scared. I felt like this was a complete nightmare and it wasn’t real. I couldn’t sit still. Every time I heard the door open I was looking to see if it was the surgeon giving me an update, or if it was my son coming out smiling, letting me know everything was OK and that I could wake up now — the nightmare was over. But it wasn’t. It was just beginning.
The biopsy results came back that it was indeed Stage 4 high-risk neuroblastoma. The following day we started the COG protocol, round one of chemo, round two of chemo, round three of chemo, stem cell harvest, round four and five of chemo, tumor removal surgery and then round six of chemo. From that day on, the days just seem to blend together. I was constantly canceling doctor appointments for my pregnancy because I didn’t want to leave Bentley’s side. After the first round of chemo, Bentley had the expected side effects: weight loss, nausea, vomiting, tiredness — As a parent, you can’t help but wonder if you are doing the right thing or if there is something different you should be doing. That’s when my husband and I decided we wanted to look into other hospitals to get a second opinion because we just didn’t feel right.
The second round was better than the first. He still threw up, but still seemed to play through it. We would stay in the hospital for 7 to 10 days at a time. After months, we finally got our consultant appointment with Sloan Kettering in New York City. A few days prior to leaving for New York City, Bentley ended up with a line infection and had to stay in his current hospital for antibiotics and cultures until the infection was cleared. Once the hospital felt Bentley was stable, we traveled to the city to have our consulting with both the surgical and neuroblastoma team in February 2016. The surgical team felt very optimistic they were able to remove all of Bentley’s tumor. But the doctor also felt he wanted to do scans at their hospital to doublecheck things prior to surgery. That same day, we had a CT scan done and the surgeon told us about other spots of tumors we were unaware of. He told us about the main tumor on Bentley’s right adrenal gland, and that Bentley had also had a tumor wrapping his aorta and the main vessels into his spine. He said he was comfortable and willing to do the surgery, but it would need to be done in two separate surgeries because they would be very invasive and long procedures. As a parent, my heart re-shattered. It was as if we were finding out all over again about cancer, back to day one. Questions were flying through my mind – ‘Were these always there? Were they new? Did our home hospital know about these and just not tell us?’ We would never have the answers.
We had surgery one of two scheduled for April 18, 2016. I knew he was in good hands, but I also didn’t know if I was going to ever see him again. How invasive was the surgery actually to be? What were his scars going to be like? Was he going to remember this? The surgery ended up taking 14 hours and that was the longest time I’ve ever been away from Bentley since the day I had him. When we saw him, it wasn’t at all what we were expecting. He somehow managed to get the breathing tube out and was awake when we saw him. He was extremely puffy and had tubes everywhere. He had all these monitors hooked up to him in a room full of nurses. It was a very, very scary sight and I just couldn’t believe that was my son. I held his hand and he turned his head, unable to open his eyes from being so swollen — he asked for his Paw Patrol blanket and a sippy. He was unable to eat or drink for 3 days after the surgery, but by the next morning — only 9 hours post-surgery — they had him up and moving. That same day we started our next round of high dose chemo. This chemo hit Bentley extremely hard. He wasn’t able to walk and barely ate. He went from 41 pounds to 26. He would just sleep.
My due date was quickly approaching — but I still never left Bentley’s side. After a week after chemo, we were able to go home. We were sitting in the Ronald McDonald’s room and I started to feel contractions — I called my mom to come get me from Buffalo, New York. I waited for Bentley to fall asleep and I left New York City without him. That my first time leaving him other than surgery. My husband and Bentley flew home the next morning with the help from PALS. We went home for a month. May 10th I was having extremely bad contractions so I took a bath and afterwards Bentley wanted to take a drive. I thought I had peed myself so I made my husband head back home so I could change. When I got out of the car, my water had broken fully. I called my friend to take me to the hospital where they confirmed it was my water and I was starting to have a baby. It began time to push. We didn’t ever leave Bentley, one of us was always with him. We sold our land and second car to be able to stay home with Bentley, get ahead on bills and just focus on taking care of Bentley.
When my newborn son Clayton and I were discharged from the hospital and he met Bentley for the first time, my heart melted. Bentley got off the couch and walked to the car seat to meet his little brother. That was the first time he walked since surgery! Ever since day 1 they have been inseparable — they truly are best friends.
When Clayton was just 3 weeks old we went back to New York City for surgery number two. This surgery was more invasive and complex than the first. I felt my heart sink. How was I supposed to be happy for a new life I brought into the world when the one I had previously fights for his life daily!? I was terrified.
Five hours into surgery and we got a phone call and my heart sank. I immediately started to think the worst. ‘Hi Mrs. Hayden, the doctor wants me to let you know he is ready to close and would like to talk to you. You can head up to the 4th floor.’ I couldn’t believe it. Just 5 hours. We were told to expect the same. Another incision on the opposite side of Bentley’s abdomen around his rib cage and to his spine, another incision over the prior one on his neck, he would go to ICU to recover and then to his private room for a week of high dose chemo.
A week after chemo, Bentley was cleared to head home. We returned for scans four weeks later and they found three new spots in Bentley’s soft tissue, but where the surgery was, thet tumor was gone. The team decided to move Bentley to a new treatment called HITS — high dose chemo with 3f8. We ended up spending long days and nights in the hospital. Bentley ended up having an allergic reaction and swelled everywhere. His heart rate would drop so low and his heart rate would increase. I constantly questioned if we made the right decision. We were given the choice to start the next round of treatment but I asked to go home so we could celebrate Bentley’s birthday. We had a huge third birthday party for him at home and he really enjoyed himself, but that night, he seemed off. He had really bad diarrhea. We went to the hospital for cultures and they came back positive for E. coli. We started antibiotics for the E. coli and trying to clear the line. This was the worst yet — Bentley would spike extremely high fevers, be freezing cold and shaking but yet sweating while shivering. I screamed for the doctors to just remove the line. If this is what was making him so sick, ‘get it out of him or I’ll do it myself,’ I shouted.
Bentley started to have a hard time breathing so they did a chest X-ray and his lungs were starting to collapse. We were moved to the ICU for closer monitoring. They did another X-ray and both his lungs were collapsed — my baby was dying. They rushed us out of the room and put in a breathing tube and put Bentley in a medically induced coma. While a machine did 98% of my son’s breathing, I sat next to his bed holding his hand, begging him to breathe. They tried to tell me he couldn’t feel anything, but I saw tears falling from him closed eyes. The doctors decided to lower the machine to see if Bentley would take a breath on his own and he did. I finally was able to lay in bed with my baby! We almost lost our son on his 3rd birthday. Since that day we haven’t stepped foot in our local hospital. We would stay longer periods in New York City just in case he needs some type of treatment.
Bentley has undergone 14 cycles of radiation, 10 rounds of chemo, 6 rounds of 3f8 and now two cycles of MIBG therapy. In October of 2017, we were told that treatment wasn’t working and that they would need to have meetings to come up with another treatment option. I cried and screamed and decided to take my son home. I didn’t need to sit and wait to hear there’s nothing left for him and that my son was going to die. The whole 9-hour drive home I cried. I stared at the sky praying, begging for another option. I can’t live without Bentley — if he dies, I die. I never spent a night without cuddling him — how am I supposed to do it forever? I can’t, and I won’t.
The next day, October 26, 2017, Bentley’s oncologist called to give us the official read of the scans — Bentley was declared NED (no evidence of disease). The oncologist who read them to us prior read the wrong scans! We were ecstatic, but yet so upset for the other oncologist giving us such bad news. We continued with treatment, just without the chemo. We did 5 days of 3f8 a month and scans every two rounds. On January 15, 2018, we learned Bentley had relapsed in his skull — completely new spots. Now, we restart. I was devastated. I still am. When does he get his break? When will he be able to live a normal treatment-free healthy life!?
The team decided to try MIBG therapy, which you’re only allowed two rounds of in your lifetime. I couldn’t grasp it. I still can’t. Why my son? Why any kid? Why is this our life? When we went for our first round of treatment it was a nightmare. Bentley got an Injection of high-dose radioactive iodine and had to have a Foley catheter put in. He couldn’t move off the bed and had to stay behind a lead wall, and my husband and I had to stay a certain distance from him because his body would discreet the radiation and it was dangerous levels. How am I as a mother supposed to say, ‘Yes give this to my son,’ but I get to be protected? There have been so many sleepless nights. Day 5 we were cleared to go home. This meant keeping Bentley and his brother away from each other for at least 2 weeks. Our family was constantly being divided, it wasn’t fair to any of us.
We went home for 5 weeks where we continued weekly blood draws and then returned to Sloan for scans. With this treatment, the longer it stays the better, but the cans determined there was no change to the spots. I just don’t understand why. What am I doing wrong? What did I do so wrong for my son to constantly be punished!? Why can’t I take the pain away from him?!The team had a meeting and decided to try his final round of MIBG therapy. April 17th Bentley has his second round of MIBG therapy and we are currently home awaiting the dates for the upcoming scans. Based off those scans, we will find out the next treatment plans.
He now has to see a GI specialist and a psychiatrist and is on medication for anxiety. They also have done a hearing test and believe he has hearing loss due to the chemo he has received. He doesn’t deserve this. No child does. This has been extremely hard on all of us. We have no income — we depend on Supplemental Security Income and foundations to help pay our bills. Every penny we have received, we always paid our rent months in advance to always make sure Bentley has his home — his safe place. He always knew where his home was. And that was taken from us for absolutely no reason at all.
April 24th we were handed a 30-day eviction notice from the apartment we have been at since November 2016. We have always paid our rent, kept to ourselves and we were barely home seeing as we were spending weeks in New York City at a time. We sold our land and car to pay months in advance on our rent. All the money that’s been donated from our community went to the rent. When we received the eviction notice, it was a punch in the stomach. Our hearts shattered. My sons home, Bentley’s safety zone, his happiness, was taken away. We’re thankful for all the help from our community and we have now found another place to call home, and Bentley is very happy there. And that’s what matters most — his happiness.
I still question daily what my son did to ever deserve this. He’s never made a mistake in his life, yet he’s fighting every day to live. This isn’t fair. This isn’t right. There are many days I want to say, ‘Enough, stop making my son suffer,’ but then I look into his big, brown eyes and his little smile and dimples and I get back up off the floor, and I will continue to do so, because he’s worth it. And with his strength I will continue to stand back up a million times over again, because he will beat this, and he is going to make a difference in this world. Bentley will move mountains! He may think he needs me, but in reality, I’m the one who needs him.”
This story was submitted to Love What Matters by Krystal Hayden, 27, of Depew, New York. A version of this family’s story originally appeared on SweetBuffalo716.com. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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