The last time I updated on Phoenix, we had just received the news that his Neuroblastoma had relapsed, and were beginning a new type of treatment. He has since completed 3 rounds of this new treatment, and we are about to head to Dell for the 4th round on Monday.
The plan was to continue with this new treatment for as long as it was working, with scans every two rounds to measure the amount of Neuroblastoma cells in Phoenix’s marrow. (The current treatment is a mixture of two chemotherapy drugs that he has never received before, along with the Chimeric antibody that was part of his Immunotherapy protocol).
Within the first two to three days of the initial doses of this treatment (back in December), we saw an immediate positive reaction in Phoenix’s body. The high fevers went away, and the extreme pain in his back and legs went away. Phoenix has been feeling amazingly well. We went in to his scans on January 26 very hopeful, because we could all see that it was working:
We were again completely shocked and taken by surprise when we received the phone call from our Oncologist on Friday that the results from Phoenix’s bone marrow aspiration and biopsy showed no change in the level of disease. This is very confusing for all of us (including the doctors), because it is clear from just looking at Phoenix, that the treatment seems to be working. They don’t have answers for us as to why “clinically” he is better (no pain or fevers), but at the cellular level there is no change.
What these results mean for Phoenix at this juncture, is that we will be moving forward with the MIBG Therapy portion of his treatment that I briefly mentioned in the last update. This is very scary for us, and we are discouraged that we are already moving on to a different treatment option. It was my hope that Phoenix could continue getting this current treatment for the maximum 17 rounds (about one year).
We have had several weeks to process this information though, and are trying to see this from a different perspective: Phoenix will not have to endure all of this current treatment (the chemotherapy and antibody), and will instead move on to a different option that hopefully his body will respond to better. And– Something IS working, because he feels so good. That has to mean something.
So. We will be doing another round of Phoenix’s current treatment, and then more scans (two days of MIBG scans and a bone marrow aspiration and biopsy) to see how his body has responded. Then, we will head up to Dallas for MIBG Therapy. This will include a complex schedule over the next several months that includes a few days that we will go to Dallas for parent training, two separate rounds of MIBG Therapy, two separate autologous stem cell transplants, and multiple days of scans and biopsies.
MIBG Therapy is an intense week where Phoenix will have surgery to put in another central line, a day of infusing the radiative material, and then 5-7 days of waiting for that material to work its way through his body. During this time, Phoenix will be highly radioactive, so will have to stay in his hospital bed in a lead room by himself. I will be able to go in and out of his room for very short periods of time to change his diaper and help him when he needs it (eating, changing clothes), but otherwise he has to stay in the bed by himself. My room will be attached to his and have a window where we can see each other. I will not be allowed to leave my room, and we are not allowed any visitors, as I will also be considered radioactive.
The information that we have received so far states that older children do fairly well with this treatment (as it is typically tolerated very well and does not tend to include pain or chemo-like side effects), but younger children often need sedated during most of this time due to the emotionally difficult task of being alone and immobile. This is probably the hardest part for us to think about: Phoenix not understanding why we are leaving him alone in this room. It is so painful to even think about this- the confusion and sadness he will be feeling.
14 days after the MIBG infusion, we will head back to Dallas for Phoenix to get another stem-cell transplant. 6-8 weeks after the initial MIBG infusion, we will go back to Dallas for a second round of treatment (MIBG Therapy and then stem cell transplant).
Needless to say, this will be a highly stressful, anxious, and isolating time for us all. We are asking for your thoughts and prayers that this treatment works on Phoenix, and helps his body be healed of Neuroblastoma. We are also asking for your thoughts and prayers to help Ben and I remain positive and calm, and for Shiloh and Phoenix to continue to power through this unimaginably difficult time with strength and joy.