William’s mom writes, for two weeks our sweet William, at the time 2 years old, was complaining of leg pain. We believed it was growing pains. One day I noticed he wasn’t peeing a lot and had not had a bowel movement so I gave him miralax. I knew it would take awhile but still nothing. The next day he woke up in excruciating pain screaming and crying. I knew something was wrong.
I rushed William to the emergency room. The doctor first wanted to send us home with miralax. I refused and said I wasn’t leaving. They ran many tests, gave him 2 enemas and still nothing. They finally did an ultrasound where they then find a golf ball size mass in his lower abdomen. We were rushed to USA Childrens and Womens hospital in Mobile. My son spent a few days and nights screaming and crying in pain until they did a biopsy of the tumor.
Surgery day. The worse day ever. After 4 hours they came in and told us our son had a malignant, tumor which they believe is rhabdomyosarcoma. It was located in the prostate area. My son also had to have surgery to pull part of his intestine through his tummy making a stoma. He had to have a colostomy bag because the tumor was blocking his way to go to the bathroom. He could still pee regularly. We started an agressive chemo treatment which was for 47 weeks. Vincristine, Dactomycin, Cyclophosphamide, and Irhinotecan. By week 13 my son was transferred to Texas children’s hospital in Houston and MD Anderson Proton Therapy for radiation and chemo.
The week we arrived in Houston, TX William also became a big brother. yes mom was pregnant during ALL of this. William was such a great helper and big brother in Houston because it was only him, mom and baby sister.
After radiation was complete we returned home to finish chemo. However, I noticed he was straining to pee again. It was not time for more scans but I called the doctor. We rushed to the hospital all to find out that he had an infection and his tumor was “inflamed” from radiation.
Might I add William never lost his fighting spirit. He actually pushed his self because he wanted to be a firefighter.
Weeks went by, William came home, had his 3rd birthday, but Halloween night had to go back to the hospital. he started to have another fever. The infection was back but stronger. William was in for another 2 weeks. Came home. A few days before Thanksgiving his infection came back. Not only did we find out it came back but his tumor had progressed and grew except this time it grew inside the bladder and outside against the prostate. William missed thanksgiving and they changed his treatment since the original treatment was not working. He was then taking Cyclophosphamide and Topatecan for treatment. William came home, but days later had to return for the same infection. Something was wrong. Christmas was spent in the hospital, and he stayed through January and February which in February we were told, “William is not responding to chemo and his tumor is growing”. We knew he was getting worse because he was more tired, could barely walk, very weak and slept so much. He was being sent home on hospice but before he went home he was granted a wish by the Make-a-Wish Foundation.
His wish was to be a fire fighter for the day. He was a different kid. Happy, full of life and was the best fire fighter I ever saw. We weren’t ready to go home. We hung on to every second of that day.
When we got home he was different. He was exhausted and began running a temp of 103.4. Famiky was coming to see him, hospice nurses was having us fill out paper work, it was overwhelming. I was losing my son before my eyes and I was scared. Stupid cancer did this to my son! That following Saturday we took him to the hospital. We decided when the time came it would not happen at home. So when we arrived everyone at the hospital made it as comfortable as possible. March 4th and 5th I laid in bed all day and night holding my son. March 5th 2018 at 11:10 my son took his last breath.