“Keep your face to the sun and you will never see the shadows.” -Helen Keller
When Phoenix was first diagnosed in January 2016, I received something in the mail that happened to have this quote on it. It really spoke to me, and I have kept it in my mind during this year of treatment. Throughout all of the pain, confusion, fear, and uncertainty of this year, we have aimed to stay happy, positive, thankful, and to not let Shiloh and Phoenix feel our fear. This is much easier said than done sometimes, but nevertheless it is our goal.
I have really tried to keep this quote in the forefront of my mind during this month since we learned of the relapse of Phoenix’s Neuroblastoma. Below is an update on how we learned of the relapse, and what our new plan is moving forward, keeping in mind that we are very much trying to fill ourselves with hope, and not let the fear take over.
After Phoenix’s most recent round of Immunotherapy over Thanksgiving (what was scheduled to be his second to last inpatient stay at Dell), he seemed to be taking a really long time to recover. Compared to his other rounds where he would come home and bounce back immediately, he was experiencing a great deal of fatigue and pain. I began to get worried when he began to complain of back and leg pain and began walking in a very stiff manner. We spoke with our doctors many times, and they tried to assure us that they were not concerned: leg and back pain can be side effects of many of the different medications that Phoenix is on. As his pain continued to worsen, we decided to do scans on Phoenix to “rule out the possibility of relapse”.
We had 3 days of scans scheduled (a bone marrow aspiration, and two days of MIBG scans) starting Tuesday, December 13. On that Sunday (December 11), Phoenix woke up from his nap with a 102 fever. At that point, as much as I tried to tell myself that it wasn’t relapse… I knew. This pain and fever was exactly how this journey with Neuroblastoma began in January. We went to the ER for his fever, and were admitted up to our Oncology floor.
Phoenix had a bilateral bone marrow aspiration on Tuesday, and because his fever had not returned since Sunday, we were able to spend Tuesday evening at home. On Wednesday, we headed back to Dell to do the first day of the MIBG scans. During the 4 hour waiting period from when they inject Phoenix with the radioactive dye and do the scan, we went up to our playroom to play and wait. While we were in the playroom, Phoenix suddenly began shaking and screaming. Ben ran to get one of our nurses, and she came to take his temperature- 104.2. They gave him IV medicine to bring down his fever, and we went down to the surgical waiting room to wait for him to get anesthesia for his scan.
While we were waiting for the anesthesiologist to come, a child life specialist came and took Shiloh to a nearby room to play. This had never happened before, (taking Shiloh away to a separate area), so at this point both Ben and I were fairly certain that we were about to get some news. Our primary oncologist, nurse practitioner, and social worker walked through the surgery waiting room doors and came over to where we were seated. The rest is a fog of terror, grief, and pain as were were told that the bone marrow results came back and Phoenix’s cancer had relapsed, and appeared to be very aggressive. The entire team of oncologists, nurses, and nurse practitioners were absolutely shocked at the results. Phoenix has done so well throughout treatment, and this was not the result that anyone was expecting.
The rest of the week is hard to remember, but I know that we began an emergency round of treatment (two new chemotherapy drugs along with one of the antibody drugs that Phoenix was receiving during Immunotherapy) as quickly as possible. This began on Thursday, and by Sunday Phoenix’s fever was down and his pain was much less. We can only hope that this means the combination of drugs was successful in slowing the progression of his disease.