In honor of Pediatric Cancer Awareness Month, we are featuring some real life stories on the blog. Our aim is to put faces to names and learn about the reality of this dreadful disease. Please share this story with others, and let’s bring attention to the stories of these families. Please remember to give if and when you can to the charities that help these kids. If you have a story to share, please do feel free to send it to me at [email protected].com.
Today we feature the story of Nicole and her son Sebastián.
The roller coaster of childhood cancer officially started for us on Friday September 13, 2013. For the second time in a week and a half, my son Sebastián could not pee and had to be catheterized at the doctors office. This time however his pediatrician ordered an ultrasound and that evening on the 13th a doctor called and told my husband they saw something and they wanted to do a CT scan the next day. In my ignorant bliss, thought it must be some blockage that could be removed–no big deal. However the next day when we showed up they wanted to admit him, not just complete a CT scan.
That day was pure hell to say the least since the first person to come see us was an oncologist; he hadn’t eaten since the day before in order to do a sedated CT scan; he couldn’t pee and the nurses were having issues catheterizing him; he had to have an IV placed, which was tried multiple times; and because he was in pain–from everything–he was just screaming and moaning and we felt powerless to take his pain away. Around 5-6pm the CT was finally done and a urologist placed his catheter properly; everyone kept telling us we had a long road ahead of us, but I never would have guessed what road that was as I still had a slight hope that they were all wrong.
The next day it was confirmed that he had a 6cm x 7cm tumor in his prostate and the oncologist believed, and was later proven right, that it was Embryonal Rhabdomyosarcoma, a rare childhood cancer. Fortunately it had not metastasized, but due it’s size he was stage 3, group 3 just two months shy of his 3rd birthday.
Within a few days he had a Broviac catheter installed and his first chemotherapy treatment was given on Friday 9/20/13. He endured a 40 week protocol of three chemotherapy drugs that were given inpatient and outpatient, and 6 weeks of radiation therapy starting 4 weeks into the protocol; not to mention I was taught how to give a daily shot in his thigh in order to boost his WBC’s.
The kicker is, he started radiation on a Monday morning, and I had his baby brother the Friday right before! I was (obviously) very pregnant when he was diagnosed, and caring for both a newborn and an almost 3 year old was the hardest thing I have ever been through. At the end of radiation we took his catheter out (literally my husband pulled it right out) and it had shrunk so much that he was able to pee–never was I so happy to see pee! On Christmas Day Sebastián peed in the potty for the first time since before he was diagnosed; it was a happy Christmas.
Sebastián’s last inpatient chemotherapy was 7/8/14, a CT scan was completed two weeks later which showed the tumor is basically stable with slight shrinkage, a biopsy was performed a week after that and at the beginning of August Sebastián was declared cancer free!!! Thanks to my husbands OCD Sebastián did not get a fever once and therefore did not have to be hospitalized outside of his chemotherapy treatments–for this I am very grateful.
Throughout this whole experience I have felt just about every emotion possible, positive and negative, and I can without a doubt say this has made me a stronger person in more ways than I ever thought possible. I have also been able to see and experience the awesomeness of human beings since so many people helped us spiritually, financially and emotionally, including perfect strangers. Having never experienced cancer firsthand, with myself or a relative, I had no idea of what to expect. Now that I’m immersed in the world of childhood cancer, it is unbelievable to me how many children are being diagnosed and the lack of good research for prevention, to improve treatments, and increase survival rates–especially rare childhood cancers. In the future I have plans for doing advocacy work, but right now I am focused on raising my young children while having to work full time since I am the financial provider for our family.
Sebastián just started preschool last week and is adjusting well, trying to put this all behind him. CT scans will be done every 3 months for the next few years and yearly after that; as of right now he has a 70% chance of survival and I continue to remain positive that he will live a full life.