An Update on Phoenix’s Treatment

“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.  

We were told that we should go to Dallas to see a Neuroblastoma specialist, and that we would learn of more options at that point.

We traveled to Children’s Health last week, and Ben wrote a summary of what we learned while it was fresh in our minds:  Now that Phoenix’s body has recovered from the first dose, he will go into Dell Children’s Hospital this coming Monday for another week-long stay to begin a second cycle of the same drug combination he received three weeks ago.  (This is a treatment that was in trials approximately two years ago, and children responded so well that now all patients with relapsed neuroblastoma receive this treatment for a period of time.)  He will be given 2 weeks to recover from the treatment, and then he will be scanned over 3 days to see if the neuroblastoma has either lessened, been stabilized, or has grown worse.

If the scans reveal that the disease is stable or has lessened, then we will begin another 2 cycles of the treatment described above followed by 3 days of scans to see the effectiveness of the drugs against the neuroblastoma. If the disease is stable or has lessened, then you repeat the 2-cycle treatment process again. This can be done up to 15 times (totaling approximately one year). It all depends on the progression of the disease.

It is not expected that the chemo / antibody treatment that he is now receiving will cause Phoenix’s disease to go into remission again, though there is a very remote chance of it doing so. The reality of our situation is that these therapies will likely buy us time, but not a cure. The probable outcome is that at some point the scans will reveal that the disease has become worse in spite of the drugs. At that point, our plan is to schedule what is called, MIBG therapy (targeted radiation), through Children’s Health Hospital in Dallas.

MIBG therapy requires a one-week hospital stay in Dallas, then we would be released back home for about a week before taking Phoenix in for another stem cell transplant (done over a single day- this will not be the same as his transplant during the summer where we stayed for 4.5 weeks). After 6 weeks of recovery from the first dose of MIBG, we would do another cycle of the therapy (again in Dallas), followed by another stem cell transplant (single day), and 6 weeks of recovery. This 2-cycle MIBG treatment for relapsed neuroblastoma is Phoenix’ best chance for survival at this point. This will be an extremely tough treatment that we will describe more in detail if the time comes.  If the MIBG therapy does not stop the disease, then we will still be able to look to clinical trials around the country.

As we move into this new phase of Phoenix’s battle the doctors will be testing specific genetic characteristics of his disease to help us find the best new targeted therapies and trials available. We feel we are in very good hands and continue to find that we are fortunate in our misfortune.  Each day Phoenix seems to feel better and better.  The better he feels, the better I feel and the more I can breathe a little.  The only thing that we were assured of is that there will continue to be many ups and downs.  We will continue to keep our face to the sun, and we thank you all for supporting us on this journey we never hoped to be on.