The Plan...for Now Anyway

So I finally spoke with Dr. Stadden and Dr. Fluchel today regarding all of Brynlee's scans and tests and what the treatment plan will be at this point. Dr. Fluchel I guess has more of a specialized interest in neuroblastoma, so I guess that's why he was in on the call to help explain things.

Anyway, so the main tumor mass in Brynlee's chest has shrunk by about 95%. The two largest liver masses have shrunk by 85%. All other smaller liver spots are gone. The MIBG scan, which lights up spots wherever there is neuroblastoma, showed no uptake in her bones, so that means that the three spots that had cancer in her bones are gone. The bone scan, however, showed uptake in the bone, but this is thought to be bone remodeling from where the cancer was and will be monitored on further scans. Her bone marrow is still clear and without cancer. However, the biggest kind of unknown at this point is there is an unclear spot in her right lung that lit up on the MIBG. Now Brynlee's lungs have always been a question as to whether there was cancer in them or not. We were told initially that there was cancer and then we were told that they were just lymph nodes showing up. So essentially the MIBG is showing something in her lung, but the CT isn't really showing anything. The other mystery with this is that the spot in her lung appears to be larger than when she was initially diagnosed. On all of the CT reports that I have, it is reported as atelectasis, which is a collapsed or partially collapsed lung, which Brynlee had so much trouble initially with her lungs collapsing and being blocked that there might also be a possibility of some damage from all of that. However, we will just monitor this on scans for now. Also, the electrocardiogram they did of her heart came back normal, so this is wonderful news that the chemo hasn't damaged her heart at this point.

So where do we go from here? At this point, there are no plans for surgery or radiation. There is a possibility that Brynlee will require more chemotherapy. Basically neuroblastoma can continue to shrink and go away on its own without active treatment. In fact, there are some infants born with neuroblastoma tumors that haven't metastasized that have no treatment and it goes away. The doctors feel that Brynlee is at the point where her tumors have responded well and shrunk to the point where we can pause treatment for now and see what happens. They do not feel that by waiting a few months that anything will be lost. So here is my favorite part, we get to go through all of the scans that we just did in ten weeks. Yippee! My challenge will be to get Brynlee to be able to drink some sort of clear liquid by then so she won't have to have an NG tube for the abdominal CT scan. They are leaving in her central line for now in the chance that we do have to do some more chemotherapy or radiation in the future. The concern is they aren't sure what to make of the lung spot.

We are in no way out of the woods at this point, so we still need lots of prayers for her. She does still have cancer in her body that needs to go away. We have the big appointment with the rehabilitation doctor next week, and we will likely be starting another huge journey with that and lots of therapy and who knows what. It's been an odd feeling this past week not having anything going on for Brynlee. No blood draws, no chemo. It has been nice. I have also been amazed that Brynlee seems to be a little bit stronger this past week and moving her legs more. It hasn't been anything dramatic, but it has been noticeable, so I am hopeful that these are positive signs of things that we can build on with therapy and rehab. It's also been wonderful to have Brynlee eating solid/table foods so much better. Overall, I think she is feeling pretty good not having chemo.

Crikey! I don't know how to feel right now. I feel blessed as things are improving for Brynlee. I guess you could say I am cautiously optimistic and hopeful that we can continue to make baby steps in getting rid of all of her cancer and getting her down the path to recover from her spinal cord damage.

Thank you for your love, support, and prayers for our Brynlee and for our family! We have felt your love throughout the past six months.