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30 DAYS/30 STORIES® 2023

September 28th

Ben

Hello, my name is Holly. I am a single mother taking care of my son, Benjamin. I believe everything happens for a reason. That God will prepare you before it happens, in my experiences. I would like to share his journey of battling cancer as many times as I can. Rather than be embarrassed or ashamed, but to be proud of how brave he was during it.


In Fall of 2019, I was taking classes at Northampton Community College, majoring in Registered Nursing. This was a huge transition for me, as I resigned from a full-time job to take on another different lifestyle as a full-time college student. I knew I was making the right choice for myself and Ben's future. One of the classes I was registered for was Medical Literature. One of the topics talked about in an open discussion was cancer. We watched a movie, "WIT", where an English Professor was diagnosed with Metastatic Stage IV Ovarian Cancer. We also read the book, "At the Will of the Body", in which he shared his perspective on cancer. Throughout the class, we shared stories of family members and friends who were diagnosed with cancer and how they survived through it. I realized I had never been exposed so much to hearing about cancer until I took this class.


Another class that prepared me before my son's diagnosis was Anatomy and Physiology. In this class, I gained more knowledge of Hematology (the blood). I remember my professor explaining blood typing to me. She said if I was going to be a nurse, it was very important to know blood typing, so you won't make a mistake on a patient. There was a reason why it was so important for me to take medical classes before my son was diagnosed.

 

In June of 2020, Benjamin developed a small lump on the right side of his neck. He was in a little pain, so I had him checked out by his pediatrician. They placed him on an antibiotic, Clindamycin, for two weeks and were holding off on sending him for blood work because of COVID. It crossed my mind that the lump could be cancerous. I didn't want to scare my son and followed through with the doctor's orders. After two weeks, the lump came down in size but hadn't completely disappeared. It was about the size of a pea. About a month later, it reappeared bigger – about the size of a golf ball. At that time, Benjamin was playing at his best friend's house, when I got a call from his friend’s mother that Benjamin wasn't feeling well. He had a fever, was feeling very tired, and he couldn't move his neck. Something didn't seem right…the lump coming back the second time. I immediately dropped all my errands and planning our beach trip to rush my son to the pediatrician again.

 

When we arrived at the office, they couldn't see Ben because he was running a fever. With COVID regulations, he was sent to the Express Care of Lehigh Valley to follow up with a physician. They wanted to get an X-ray, but the techs were gone for the day, so the physician recommended sending him to Lehigh Valley Reilly Children’s ER. There, we found out his blood work came back abnormal with the white blood cell counts very low. Next, they admitted him to Lehigh Valley Reilly Children's Hospital to follow up with the Hematologist/Oncologists. It was heartbreaking to me, seeing the look in my son's eyes of how nervous he was, the pain he was in, feeling tired and weak, and asking the medical staff if he was going to die. I had to stay strong while holding back my tears in that moment. As Ben had more questions for the Hem/Onc doctors, they spoke honestly on a child level to explain everything going on with him. A tear ran down his face. He was sad and the only thing I could do was stay close to him with comfort. I found out on July 21, 2020, he was diagnosed with B-Cell Acute Lymphoblast Leukemia (ALL). They wanted to start chemotherapy right away.


The antibiotics were continued for the infection of the lymph nodes. He was scheduled for a lumbar puncture and a bone marrow aspiration. He was admitted for a week. After discharge, he was to continue lumbar punctures in the clinic and chemo treatments. Ben was in this phase of Intense treatment for about 9 months. After hearing the news, our life was turned upside down. Life stood still for about 2 years while he was in treatment. The new life for Ben was losing hair, the side effects of the steroid dexamethasone, chemo treatments, lumbar punctures to check the interstitial fluid in the brain and spinal cord. We were in and out of the clinic regularly.


Ben has been in remission for a year now. Last year, in September 2022, he was taken off of chemo meds (from home) - Methotrexate and Mercaptopurine - as he ended treatment. He had his port taken out and rang the bell last October. He continues doing all the things he loves, like playing basketball, swimming, video gaming, and hanging out with his friends. He is currently a middle schooler in 6th grade. I am currently working for a physician practice in a cancer center and taking classes.


I am very grateful to have the support of an amazing organization like PCFLV. They really made us feel loved and kept us up lifted in our hardest times, along with the continued support of friends and family. It was very comforting hearing the stories of people who had cancer and knowing that there is light at the end of the tunnel. I am happy for those who I have crossed paths with.

 

Written by Ben’s mom, Holly


Please consider helping children with cancer and others in our community by scheduling a blood donation at Miller-Keystone Blood Center: https://donor.giveapint.org/donor/schedules/zip



If you would like to donate in Ben's honor.

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