Welcome to our 2024 Trust Ambassador Gregory Neff
Gregory is, and always has been, a very sweet, smiley, smart, fun-loving boy! In September, 2021, we received a call from his preschool saying Gregory (2.5 years old at the time) just wasn’t acting like himself. He didn’t have a fever, cough or runny nose, but he was drooling a lot. We went to the doctor that afternoon and in true COVID fashion, tested for “all the things” (COVID, RSV, Flu, Strep). Everything came back negative. We gave him some Motrin at the doctor, and he perked right up. The next day he was in pain and we noticed that he was reluctant to move his neck or lie on his back, so we took him back to our pediatrician for an x-ray, and everything looked clear. The following day, Gregory still was in pain and not moving his neck, so with our pediatrician’s advice, it was decided to go to Dell Children’s Emergency Room. It was here he had his first CT scan where they discovered what they initially thought was fluid behind his neck. We were admitted overnight with a retropharyngeal infection, treated with antibiotics, and then discharged the next day with oral antibiotics. All was looking great and Gregory seemed to perk up. Life resumed as normal until two days later when we went to get him from his nap and he would not bear weight on his legs. After calling the pediatrician, we rushed him back to Dell’s ER where we were re-admitted, this time for “toxic/ transient synovitis.” We were discharged the next day with a home regiment of Motrin. Again, life went back to normal but with a close eye on him just in case. He was doing great! Riding his bike, running, keeping up with his sisters, etc. At this point, still no more neck pain. Well, on Wednesday, September 29th, exactly one week from our first hospital admit, Gregory mentioned his throat was hurting, but he didn’t seem to be in pain. Soon after that, however, he spiked a fever and started going downhill again. Back to Dell Children’s ER we went for the third time in a week. This started us down the path of our next 18-day stay at Dell Children’s trying to figure out what was really going on. Gregory had another CT which still confirmed a spot on his neck. At the time, his blood work was “boring” in that nothing looked too out of the ordinary. So, an MRI was ordered for the next day. On Friday, October 1st, his scan showed that he had (what looked like) a bacterial infection in his first cervical vertebra. Dell Children’s was so great in that we immediately had a team of pediatricians, ENT and infectious disease doctors all trying to tackle this quickly. We brought up cancer and at this point they really didn’t think so since there was one spot, blood work looked “boring” and it made sense that the bacterial infection could infiltrated his bone. We started even more antibiotics and scheduled surgery for the next day to put in a PICC line as we thought we would have to give antibiotics for the next four to six weeks at home. Due to the location of the spot, the neurosurgery team also became involved. Having this many specialists with eyes on our son was very reassuring.
Well unfortunately as the days went on, Gregory started going down hill despite the round the clock antibiotics. He had a lot of stomach and leg pain, and he was drooling a lot more. Something just felt off, and he was getting worse. We switched up antibiotics again, but at this point they still were not working. On Friday, October 8th, thanks to the infectious disease doctors, we scheduled another MRI of the spine and stomach this time, and we also did a bone scan. Exactly one week from his first MRI, it was discovered that he now had four lesions down his spine, some enlarged lymph-nodes, a small abnormality on the left rib, spots in his hip bones and femurs as well as a 3cm mass above his kidney. We were in absolute shock and almost denial at this point. The next step was to figure out if we were still talking about a very serious bacterial infection, or cancer. This is when the oncology team was added to his list of doctors, and a bone marrow biopsy was scheduled. This took place on Saturday, October 9th, and we can still remember every detail of it. We were siting in the waiting room when Dr. Cooksey, our (soon-to-be) oncologist, came out and let us know how surgery went. This was the first time we heard the words, “yes, if I have to say right now, your son has cancer.” This is when the floor dropped right out from under us. Even writing this still takes our breath away. We held each other, attempted to process the flood gates of emotions and thousand of questions that came to mind, and prayed harder than we had ever prayed in our lives. In the following days we had to sit and wait for the results to come back. These were some of the hardest days to-date. By Monday, October 11th, we learned that we were now 99.9% sure it was cancer and that it was a type of childhood cancer called Neuroblastoma. However, you get one chance to get this diagnosis right, so they triple-checked, and we waited some more. In the meantime, we got the green light to move to the oncology floor. We were ready for this move. We were feeling encouraged to have an answer (although not the one we had wanted), and to start putting a game plan together going forward.
On Tuesday, October 12th, we officially got the diagnosis of Stage 4, High-Risk Neuroblastoma. Gregory had cancer spreading all over his body, down his spine, hips and legs, with the primary tumor located on his left adrenal gland and 70% of his bone marrow was diseased. At this point, we had already had a few days to process the word “cancer”, so in a way, getting the official diagnosis provided some relief so that we could begin the fight. This was the day “Gregory the Brave” and our family would begin our fight against this horrible disease. While we knew that extraordinary physical and emotional hardship lay ahead for Gregory and our family, we decided to choose positivity, hope and joy. Faced with the possibility of losing a child along with the unknown disruption and devastation this could cause for our entire family, it was impossible for us not to become emotionally overwhelmed (something we would have to battle throughout the entirety of the journey). However, we decided not to let fear and sadness take over. Instead of thinking about how far away we were from the end-result we were setting out to accomplish (and therefore becoming easily overwhelmed by the longevity of it all), we decided we would take it week-by-week, and in many cases, day-by-day or even moment-by-moment, celebrating all of the little victories along the way…and then with time, all of these little victories would add up to the ultimate victory of beating cancer!
After a relentless 16-month period consisting of 5 rounds of inpatient chemotherapy/ immunotherapy, surgery to remove his primary tumor, two back to back high-dose chemo stem cell transplants at Cooks Children’s Hospital in Fort Worth followed by long periods of isolation, 12 rounds of proton radiation in Irving, 5 rounds of inpatient immunotherapy, countless scans/ medications and pokes, 67 blood transfusions, numerous unplanned ER visits, 107 total nights spent in the hospital and many more out-patient visits, over 7 months away from home in Austin and not having our family-of-five together, physical therapy, phlebotomies, and many tears of both sadness and overwhelming joy – all of the ups and downs and small victories along the way have led to where we are today…4 years old and officially in remission as of February 2023!
This is Gregory and our family’s story. We don’t know what lies ahead, but without God, and without our family, friends, amazing doctors, nurses, technicians and hospital staff at Dell Children’s and Cook Children’s, we would not be standing right now. We are blessed and grateful for each and every day.
Published: September 1st, 2023