Justin 1993 - 2014
"When you think things are bad, when you feel sour and blue, when you start to get mad... you should do what I do! Just tell yourself, Duckie, you're really quite lucky! Some people are much more... oh, ever so much more... oh, muchly much-much more unlucky than you!”― Dr. Seuss
On March 11, 2010, I received a call from Officer Simpson at Surry Central High School, saying that Justin was complaining of pain in his right knee and that he was having trouble walking. Justin had experienced something similar while we were in Costa Rica at Christmas time, but it had been short-lived, lasting only 48 hours. I really felt he was blowing smoke, but I made him a doctor's appointment for that afternoon, thinking that we would get this looked into once and for all.
As soon as I saw him, I knew he was NOT blowing smoke. He was pale and in obvious pain. A short time later, I realized that his knee felt hot and swollen. By the time we got to the doctor's office, I suspected he was running a fever. Dr. Al suspected that Justin was fighting an abscess under his thigh muscle and ordered a knee MRI.
2 MRIs later, we returned to see Dr. Al Friday morning for a follow-up, and Dr. Al gave Justin and me devastating news. The MRI showed a high suspicion for bone cancer. Dr. Al sent Justin to have a CT scan of his chest, abdomen, and pelvis then to an appointment with an orthopedic physician assistant. His father Brian and other mother Tina met us for this appointment. More tests followed by admission to Brenner Children's Hospital, which is part of the medical center where I've worked for over 21 years.
A few days later, pathology confirmed that Justin had Ewing Sarcoma. Although we were relieved to have a diagnosis and a treatment plan, we knew the next 9 months were going to be rough. Justin completed 6 chemotherapy treatments, and in June, underwent limb salvation surgery to remove the tumor in his right distal femur. Bone was replaced with titanium, and in order to adhere the titanium to bone, he needed a total knee replacement and 11 more inches of titanium placed inside the existing bones. In December 2010, Justin successfully finished an additional 8 rounds of chemotherapy and was declared clear. Done! Time to celebrate!
Less than 9 months later, after a few episodes of pain and diagnostic testing, we were told that Justin had relapsed. It was the first day of his senior year of high school, and he had relapsed into his skull, ribs, right humerus, and pelvis. As a nurse, I knew then that his long term chances of survival had just been shot to h***, but as his mother, I refused to give up hope.
Justin tackled both outpatient chemo treatments (three meds with 2 more added a few months later) and school, maintained his straight A average, graduated with honors 10th in his class, and finished chemo the month after his graduation. Follow-up testing revealed that the previous tumors were seemingly gone, but he had developed new ones despite the chemo. We again hit rock bottom.
Justin was determined to attend the University of Advancing Technology in Tempe, AZ, a very specialized school for video game arts and animation. In fact, it is considered the best in the US for this degree. His father and I felt that it was important for Justin to spread his wings and fly and attempt to live as normal a life as possible. So, we transferred his care to the Mayo Clinic in Scottsdale, AZ, and he started outpatient chemo treatments there. Again, he tackled outpatient chemo every day for two weeks while taking a full-time load in college. In December, we were told again that Justin's scans were clean. Best 19th birthday present he could have asked for. Less than 6 weeks later, Justin was battling again, and by April 2013, due to excruciating pain, the use of narcotics, radiation treatments, and chemo, he was forced to drop out of college.
Justin returned home to North Carolina and resumed treatment at Brenner Children's Hospital of Wake Forest Baptist Health. In the spring of 2014, Justin had tried all chemo available, and his body was no longer tolerating chemo. He was losing 4 pounds per week, and we knew his options were extremely limited. But, Justin's determination to live never wavered. We enrolled in a Phase I Clinical Trial (called FANG) at Mary Crowley Cancer Research Center in Dallas, TX. Justin underwent surgery to remove a tumor in his right lung (leaving another behind). We felt that if nothing else, he would be with one less tumor. Researchers were able to chemically alter the tumor cells and develop 12 vaccines to return to Justin. In early September, Justin received Vaccine #1.
On September 16, during a lab and clinic visit, Justin's pain became excruciating, and despite additional medicine, became unbearable. Little did any of us know that this would be his last day at home. By midnight, he was begging to go to the hospital. Unfortunately, it still took days to get his pain completely under control, and Justin was mostly unconscious at that point. He did have some lucid moments - called his sister Sydney "Bum" (his love word for her), told me he loved me - but his remaining days were filled with semiconscious dreams and nightmares.
I left the morning of September 24 to come home and rest (I hadn't left the hospital for more than 2 hours at a time since 9/16), leaving Justin's father with him. As Robby and I were getting ready to return to the hospital on the morning of the 25th, Brian called to say Justin had passed away at 0955. Apparently, he had a very short conversation with his daddy, took two breaths, and died.
Throughout Justin's 4 1/2 battle, he underwent at least six major surgeries and biopsies, received approximately 20 radiation treatments, and ingested 14-15 various chemotherapy medicines.