Today was a very long day for Hazel and I. We checked in early this morning for scans, which is a very long process. She did not finish waking up from sedation until about 2:30pm. Then we met with the doctor around 3:30pm to go over results, and then we were sent to get her first dose of her next round of treatment in the infusion center. We finished this process at around 8:00pm so they decided to just admit us onto the oncology floor instead of having us check back in tomorrow morning. We finally just got settled, so I can now fill you all in on the results.
First of all, Hazel's bone marrow biopsies came back clear! So this means that the cancer has still not spread to her bone marrow! Her scans, however were not as obvious.
The results of her scans are actually a bit complicated and convoluted. But after much discussion and deliberation with her doctor it boils down to this: Her scans have changed since the last set of scans, but it is too difficult to tell if these changes are positive or negative. The spot in her neck grew larger, but looks like it is not lighting up as much, and even appears that it may be dying from the inside out (but this may not be the case). The other spot(s) in her abdomen are slightly smaller, but are lighting up brighter.
Unfortunately, the way that PET scans determine uptake, does not actually reflect Neuroblastoma very accurately. So, these brighter spots could just be brighter because of inflammation, or indicating the immunotherapy is doing it's job. But it could also indicate that her cancer is becoming more active. It is not usual for a Neuroblastoma patient to receive regular PET scans for this reason. Usually, children receive MIBG scans. These scans are Neuroblastoma specific, and only light up if there are Neuroblastoma cells, and not for any other reason (with the exception being scar tissue related to previous Neuroblastoma spots). Hazel did not receive the MIBG scan this time because the one she received in August did not light up, when the PET scan did. The doctor does not really like doing PET scans because it does not give her the information she is really looking for, however, we needed to do these as a comparison. Unfortunately, the results were so mixed that it did not give us an accurate comparison.
So we had to spend much time discussing whether or not to proceed with the current treatment Hazel is on, or to try something different. Most kids who respond to this treatment, do so fairly quickly, so the doctor is concerned that she did not show a very overwhelmingly positive response. So her first thought was that this may not be working, so we should move on. But again, with the PET scan not giving us the most accurate data, we may not really know if she has responded or not. So we have decided to do one more round of this chemo/immunotherapy combo this week, and in two weeks have her do an MIBG scan. The hope is that the original MIBG scan did not light up because we were so early in Hazel's relapse, and that it has been long enough for it to show up. So maybe we can get a better idea of what is going on in there.
This does, however present us with a couple of dilemmas. The first is that we are continuing a treatment that may not be effective for her, which, in turn would only be allowing this cancer to grow these next two weeks. I pray that this is not the case, but if it is, we will move onto something new immediately. More than likely, it will be the directed therapy for her ALK mutation. The second, is that this is working, but her new tumors are no longer MIBG avid and will not light up on the MIBG scan either way. If this is the case, we will do another PET scan to see if we can see any changes from these last two scans. Both the PET and the MIBG scans are also done with CT scans, which is the scan that gives us our measurements, but does not measure cancer activity. So we will still get measurement comparisons with both scans, which is good.
As you can see, we got a lot of complicated information today, and I didn't even share all of it. My brain is on overload now, and I am in a bit of a fog, so I hope that this is clear enough for you. But really, all I need to make clear is that our little Hazelnut still desperately needs your support and your prayers as we continue treatment, trying to make the best decisions, and follow this disease closely.