‘He had red dots all over his body. ‘He needs to be seen in the ER right away.’ No one would look at us. I was in shock.’: Mom of 9-month-old with Acute Myeloid Leukemia says ‘We’ve been given a second chance’

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“March 6th, 2019 was the last full day I got to live in the ‘before cancer’ realm. It wasn’t that I hadn’t had experiences with it — my husband, Josh, fought cancer before we were together and his mother had fought the same Leukemia just three years prior — but it hadn’t consumed my life up until that point. It hadn’t come in and taken over my timeline, my career, my future plans, and my son. It was a decently normal day in the life of a working mom.

My sweet 9-month-old baby had run a low-grade fever and had a stuffy nose for a while so I volunteered to stay home with him. I dropped his big sister off at daycare and swung by the school to drop off my plans for the substitute, visited my coworkers to show off my cute little stuffy son, and then headed home. I was ready to settle into a day of nursing my baby, eating snacks, and watching reality TV. Holden was fussy that day and still had a pretty large bruise on his forehead from crawling right into the doorframe a day or so prior, but otherwise seemed to be fine. I heard from a friend there had been cases of the flu and strep at daycare so we decided to take Holden to an urgent care facility when my husband came home. We took the whole family and planned on grabbing take-out afterward, completely oblivious to how these were the final moments of our seemingly normal life.

Courtesy of Jess Harris

At urgent care, Holden had the pleasure of getting nasal swabs to check for all the usual culprits and then was treated to a popsicle. While we waited for the results of the nasal swab, Holden developed small red dots over his entire body. I came to learn this word and use it often: petechiae. They are a sign of low platelets, like little busted blood vessels. This development prompted my husband to share we have a ‘family history of blood cancer.’ I had never taken this into consideration before. As I stated, his battle was before I knew him and during our time together he had only reported for routine monitoring so I assumed that chapter of his life, and our life, was closed. This development prompted the doctor to draw blood and run some additional tests. She came back and told us Holden needed to be seen in the Emergency Room and she had called ahead to a doctor. It all sounded very vague and like it was a mystery, but I have come to understand this doctor wasn’t able to give us any diagnosis but she must have known what her findings indicated. She called ahead to the ER and spoke to the on-call pediatric oncologist, but she never told us the doctor’s specialty.

Courtesy of Jess Harris

I made frantic calls. I had to call my sister to come and watch my sweet three-year-old daughter. She was tired, hungry, and confused. We very rarely missed bedtime routines up until this point, and she would have to stay with her aunt for the night. I had to call my supervisor and tell them I probably wouldn’t be in the next day, and I was taking my son to the ER. We had to rush home and pack a bag — clothes, diapers, breast pumps, bottles. We didn’t know what we were doing or packing, we just grabbed things.

Holden was tired but wouldn’t fall asleep. He stayed awake very late into the night. I have no concept of the time we spent in the ER. We watched reruns of Friends, ate snacks we had packed, and joked around. Josh and I took turns holding Holden. I would try to nurse him, try to play with him. He clearly didn’t feel well and had to be accessed for IVs several times. Our nurse was sweet, upbeat, and motherly to us until the diagnosis came. We had been in the ER for hours. Doctors, nurses, and care team members came in and out; collecting blood, information, vitals, offering food or blankets, and checking in with us to let us know they are still working. Then, an ER doctor came in, closed the curtain behind him, and sat down. You know it isn’t good when the doctor sits down at eye level with you. I held my breath and heard the word ‘cancer.’ He went on to talk about further testing or say some other words I don’t remember and finished by asking, ‘Do you have any questions?’

Courtesy of Jess Harris

I was in shock at this point. I wasn’t thinking anything except I wanted him out. Once the doctor left Josh and I held Holden and cried. Our sweet boy and cancer. It seemed like two things that were impossible to be connected, but there we sat, on a bed in the emergency room of a children’s hospital, preparing to fight to keep our son alive with no idea of what our life would morph into. After the doctor left, no one in the ER would look at us. They moved quietly in and out of the room. They would tell us information and then leave without all the pleasantries they had given. Our previously bubbly nurse was visibly saddened and we could feel how she pitied us. The look of pity is one we have grown to dislike the most in our journey.

Courtesy of Jess Harris

We were admitted early morning on March 7, 2019. Holden was hooked to fluids, tethered to a pole for weeks receiving antibiotics, medicines, fluids, and eventually chemotherapy. It took days to get his actual diagnosis, Acute Myeloid Leukemia. He was taken into surgery to have a central line placed directly into his chest so they could easily do blood draws and administer medicine. He had a bone marrow biopsy to assist in his diagnosis and was given platelets to help his body fight off the cold he had and function better, despite his cancer.

Courtesy of Jess Harris

Our first hospital admission was 33 days. I didn’t see my daughter for days because I was consumed with my son’s fight for his life. Josh and I took turns holding Holden and crying. I remember the team of doctors would come into our room to go over details. It was always five or six people looking at me as tears welled in my eyes and slowly ran down my face. We had to sign consent papers for them to treat Holden. Every box was checked on side effects and they had to read them; chemo affects the heart, nerves, reproductive system, brain, and all rapidly growing parts of the body like nails and hair. I am not sure the exact reason, but the idea of my small sweet blonde haired baby losing all of his hair tore my heart out. We, of course, consented to the treatment. It was this poison or let the cancer slowly drain the life from him. There was no other option.

Courtesy of Jess Harris

Over the next four weeks, our support system pulled together in a way I would have never thought imaginable. Family and friends shared our story and went out of their way to show us whatever support they could. People cared for our dog, they sent entertainment for our daughter, they sent meals to our home, and gift cards for when we were out, people brought care packages, and just sent texts of support to let us know we were in their thoughts. I cried more tears than I ever have, but I felt a strength and power I had never experienced. I was the advocate for this small person. I made all his decisions, I listened to doctors tell me what could happen to him and how treatments were working. I had to ask questions to better understand everything I could about his diagnosis. Prior to cancer, I was more muted and worried about talking to professionals for fear of sounding stupid or uneducated, but now I was demanding answers and wanting every detail to be explained.

Courtesy of Jess Harris
Courtesy of Jess Harris

As the treatment plan was laid out for us, we came to see this wouldn’t be just one month in the hospital but several hospitalizations that span over a six month period and monitoring and recovery that lasted far beyond that time. We made the decision for me to leave my career and focus on Holden’s health management. We came to value our time together as a family more than we ever had before. It seemed like cancer forced us to realize what was most important. We had family dinners in the hospital, we made crafts in the hospital, we watched movies, read books, and played with cars right inside Holden’s hospital room. Almost all the nurses knew my sweet boy and his loud and bubbly sister.

Courtesy of Jess Harris
Courtesy of Jess Harris

During treatment, Holden spent 72 nights in the hospital and countless trips to the oncology clinic in between. We finished chemo on August 15, 2019. After treatment, it felt like I was living without a purpose for a while. During the previous 6 months, we had been too busy to process what was going on with our family. There was always a doctor’s visit or hospitalization or some quick activity we would try to squeeze in while Holden was out of the hospital. Once the visits stopped and we just began monitoring at home, we started to truly digest the impact of cancer on our lives.

Courtesy of Jess Harris

There were moments in this journey I felt completely lost, terrified and sad, and I believe those moments make our family time that much sweeter. I feel a duty to Holden, and sometimes to myself, to make the most of our lives. To take the time to explore a new park, dance to music videos, eat ice cream for dinner and chips for breakfast, and try to enjoy life. It feels we have been given a second chance at life, one that some of our fellow cancer families haven’t had, and one that may not last forever. Covid-19 has postponed or canceled some of our plans, but we strive to make the best of the situation we have. To be more spontaneous and try not to sweat the small stuff. I have sought out professional help to process the trauma and anxieties this journey has caused. I am working on being the best mom I can be and to understand what my mind and body need to properly function.

Courtesy of Jess Harris

Holden has been off treatment for almost a year and is thriving. All of his blonde hair has come back, lighter and thicker than before, and he has had his line and port removed. If you look at him, you could never tell the journey he has been through in his short life. We will never be fully back to life before cancer — I have seen and felt things that have forever changed me as a person. I hope that life in the ‘after’ continues with stable health, time together, and new adventures.

Courtesy of Jess Harris
Courtesy of Jess Harris

I also want any family that may be starting this journey to know you will make it through. You will continue to get up each day and do whatever you have to do for your child, or family member, or self. It isn’t that you are any stronger than the people around you, but it is just the only option. You will go on, waking up every day and doing what you need to do. Hopefully, one day you will get to do what you want to do. You will find some joy, some laughter, and some peace. It is not an easy road, but it only goes in one direction and you can never return to the time before.”

Courtesy of Jess Harris

This story was submitted to Love What Matters by Jess Harris from Richmond, Virginia. You can follow their journey on Instagram. Do 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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