Embryonal Rhabdomyosarcoma Awareness

"Trying to go back and think about that time in our lives it’s like stepping into a tornado that is still whirling in my head. It is difficult for me to relive that timeline just due to the feelings that bubble up and the tension that builds in my body. 

Payton was a normal, healthy, 18 month old girl. She had just had her 18 month wellness check, and everything was fine. We recently went to a cancer fundraiser in New Orleans, and Payton held a banner that said “beat cancer.” Little did we know that Payton would be admitted for pediatric cancer in the coming couple of days. 

Payton didn’t have any real symptoms until she was constipated and in pain one day. I brought her to our regular pediatric doctor, and she did notice that Payton‘s stomach was extended, but she said, in retrospect, she just thought that was a normal belly for her age group, and she did not think anything was truly abnormal. Due to her pain level, the doctor recommended that we go to the main hospital to get some testing done. 

We went to the emergency room at Ochsner, and they did an ultrasound on Payton’s stomach. That is when we saw the grapefruit-sized mass in her belly. I had no clue what journey our family was about to go on. I was scared, frightened, and had so many questions. We were admitted at Ochsner and were greeted the next day by our team of doctors that we still are in contact with today. 

They told us that Payton’s tumor sample was cancerous, and the doctors had to ship her sample to figure out which type of cancer it was before starting her treatment. 

We were in the hospital for two weeks. Trying to keep Payton as comfortable as possible before we received her diagnosis of what particular type of cancer she had. I remember being oddly joyous to hear the doctors had Payton’s results. Because I knew this would at least give us some answers and some view about what our life was going to look like. Payton was diagnosed with embryonal rhabdomyosarcoma. It is a soft tissue-like cancer, and it was in the abdomen. Her tumor was not operable due to its location around her bladder and other vital organs. 

The doctors told us that due to it being inoperable pain Payton would have to undergo chemotherapy as well as radiation to treat her cancer. I always thought cancer treatment was a couple of months, six months at most. We were shocked to find out that people would be on this journey for her life for 1 1/2 years. 

Payton began her chemotherapy treatment shortly after her diagnosis of her particular cancer. I had a hard time adjusting to our new life as her mom, but also her sole caretaker in her illness. I was doubting myself in my ability to care for Payton  due to my lack of medical background. 

Her doctors supported me and helped me transition to be the best caretaker for her and reassured me that my love for Payton and my gut instinct as a mom would be enough to help her through this time. Payton’s first chemo was that July in 2019. She had an adverse reaction to her first chemotherapy treatment, and she turned purple. I didn’t know what was happening or how I could best help at that moment. I just knew that it looked like Payton was leaving us. Brian had left to go to a birthday party that day, and he came running down the hall as he noticed all the nurses and doctors running into our room at the hospital. 

Payton had an adverse allergic reaction to a certain chemo medication, and she would no longer receive that medication due to the extreme reaction she had. Patient would turn purple on us two more times in her treatments, and they never got easier to handle. 

We were welcomed into the Oschner pediatric chemotherapy family with open arms. The nurses and staff are your extended family during this time in your life, and they are nothing but supportive and loving, and will make you smile when you are having the worst day. I know I couldn’t do it without them. 

Payton underwent chemotherapy to shrink her tumor, and then we went to MD Anderson in Houston for her radiation treatment. She underwent seven weeks of radiation five days a week, as well as her chemotherapy when she could tolerate it. That was probably the worst time during our treatment due to her reactions to the radiation and just the toll it took on her body and her immune system. Our family came to visit and help and our community stepped up to help us afford an apartment close to her facility for treatment which helped tremendously. 

We returned home at Christmas after we finished her radiation. Payton was cancer- free in the summer of 2020. We were so excited for her to be done treatment and to ring her bell. We then talked to our doctors, and they recommended that she complete maintenance chemotherapy. Payton tolerated her maintenance chemotherapy much better than her front line treatment. She was able to live a more normal life. The medication was less damaging than her Frontline treatment. Payton finished her treatment in March of 2021. 

Payton has now been cancer-free for over 2 years now. It’s hard to know exactly how I feel about our journey. Sometimes I felt the guilt that my child made it,but other children and their families did not. I know our family will always find ways to help families going through this journey and help them see that these children are so resilient, more than we could ever imagine. And to just remind parents to take things one day at a time. 

We are so grateful to our community and family and friends, who stepped up in multiple ways to make us feel like we weren’t alone in this process. With their support you spiritually felt like so many people were cheering for Payton and her health. 

I know there are greater lessons for our family to learn by going through this journey. One is that the silver lining is gratefulness. I am grateful just to see her face, for her to dance, for her to go trick-or-treating, for her to create friendships. I am grateful for these everyday moments because at some point, I did not know if she would have them. Payton is a loving, funny, outgoing child. She continues to thrive in her health and in her life. 

To anyone going through this journey, take it one day at a time and know that you’re the only mom or dad or grandma that your child needs. You are more than they could ask for, and you are doing everything you can. Never doubt yourself. You are all they need."

-Payton's Mother

Payton's collection was inspired by the tools needed by the women who crocheted her an Elsa Wig to wear while in the hospital after losing all of her hair due to treatments.