Meeting With the Docs

We were supposed to meet with Dr. S and Dr. F on Monday to review scans before we started Brynlee's 3rd round of relapse chemo and 11th round overall. So we arrived at clinic, got her vitals done, and we were sent to a room to wait for the doctors. The nurse came in and drew her blood and got the cotton balls in her diaper to "catch" her urine and we met with the Child Life Specialist to update her Beads of Courage necklace, which I will have to post a picture of sometime.

Shortly thereafter the nurse came back in and informed me that Dr. S didn't want to meet with us today since we would be in clinic all week, so he just wanted to meet on Wednesday, which is the day that both Dr. F and Dr. S are in clinic. I told the nurse that three weeks ago when we met during her last chemo and scheduled her scans and this round of chemo that they specifically wanted to meet with us today to review the scans and that Dr. S had even informed the secretary to make that happen on the schedule. This nurse didn't seem to care that we were supposed to review scans (which in the cancer world you literally live your lives by the scans) and said that we needed to go out to the infusion area and that she would call Dr. S and see if he would come meet with me out in infusion. I am not a quick reactor to things like this, so in reality I should I have stood my ground and demanded to have the scans reviewed before we started to pump more poison into my daughter's body, but this thought just didn't enter my mind until later. So I was obviously disappointed getting blown off by the docs, but we went back to infusion.

The next thing that happen just added salt to our wound. When we got out to infusion, the nurse was speaking with another doctor, and it was obvious that they were speaking about us. I don't know why this doctor was even brought into the discussion as she is not Brynlee's doctor and she knows nothing about us or about the conversation that we had with Brynlee's doctors three weeks ago. She told the nurse that we did not need to see Dr. S or Dr. F as it was not their day in the clinic and that we could see them on their regularly scheduled clinic day on Wednesday. At this point, I started to get a little bit more than upset.

Let me explain a few things, the main reasons why we do scans periodically is to evaluate the tumors to see if the current treatment is working and it is also to make plans for future treatment, how long to do chemo, or if it is time to stop chemo. There was obviously a reason that we had done these scans, so they needed to be discussed before we moved forward with treatment. Otherwise, around $15,000 was just spent the previous week for no good reason, and, no, scans are not fun for us. I decided that I needed to tell the doctors that this lack of communication with us in a timely manner and before we began more chemo was absolutely unacceptable. I had two days to get my courage up to confront them and had rehearsed in my mind several times what I was going to say. I was not going to let this happen again.

Well, on Tuesday, our social worker, Kristen, stopped by to see how we were doing, and when she asked about Brynlee's treatment plan I brought up what had happened the day before and that I honestly didn't know what was planned. I asked her if it would be inappropriate for me to call out the doctors about this, and she told me that I absolutely needed to tell them that this was not an okay thing to happen. She also asked for my permission to go talk to Dr. F, which I gave, and offered to come to our appointment with them the next day.

So on Wednesday, a very humble and apologetic Dr. S entered our exam room and repeatedly apologized for not speaking to us about the scans. He agreed that things should not have happened the way they did and that at the least a quick phone call to us should have happened. He later apologized yet again and said that he would have been angry if something like this would have happened with his child. Dr. F also immediately came in and apologized and assured me that this would not happen again, to which I told him that I wasn't going to let it happen again either. Anyway, a very long story. 

To get to the part about the review of the scans, well, her tumor is shrinking. However, it is an odd shape, so it is hard to measure to determine the percentage of shrinkage, and so we are in a "gray" area with Brynlee. There is really no definitive point when they are going to know it is time to stop chemo again as it depends on how bright her cancer lights up on the MIBG scan and just various different things. We talked for a long, long time. It's very frustrating, and I explained that to Dr. F. Intermediate-risk neuroblastoma is in many ways kind of complicated as far as how much chemo and how long and when do you stop. Dr. F even brought up the possibility of performing another biopsy at some point as that is really the only way we can accurately determine if the residual tumor is cancer or scar tissue. Because Brynlee's tumor is so close to her spinal cord and they don't want to risk causing further damage to her spine, there really is still not an option to go in and resect the tumor completely out.

So for now we will scan again after round #4 of relapse chemo and decide from there if it is time to try to stop the chemo and watch and see or continue with two additional rounds. We are also still planning on doing the Accutane treatment after we finish chemo, which would hopefully mature any remaining neuroblastoma cells into ganglioneuroma cells.

It is hard to not get down or to not get frustrated by this disease. Sometimes we just feel like this is never going to end for all of us. Even when you stop chemo or stop active treatment, you are still very much living actively in the cancer world between scans and monthly urine tests. And it would appear that Brynlee is just not a lucky girl. She only had about a 10-15% chance of relapse, and she relapsed. Only about 19% of neuroblastomas occur in the chest, only 5% cause spinal cord compression (even less actually cause damage), and something like 3% have Horner syndrome, and we have had all of these things happen. So when a doctor rattles off these great odds, it doesn't give me much hope and it is frustrating. The odds would appear to be in her favor, but for Brynlee, it just doesn't matter.

On the bright side, Brynlee is still doing great with this round of chemo, is eating good, feeling good, and we are very grateful for her tolerance of treatment. It really does help to make things not so bad.