A new start for a new year. This was my hope. I believed that we would be together, cancer free and moving up toward our new life as a family. So now I am stuck. I can't get past the days when she was declared NED by her doctors at children's. I can't get past the ill advice that we received from them about treating her in the last month, and I can't get past the miscommunication that happened throughout her treatment after her surgery.
What's the worst is the guilt I feel for not being more clear minded when we were trying to switch protocols. Two things stick out in my mind that I feel would have kept her alive. The first was when she was having her bone marrow biopsy at children's after her induction therapy was done. Mike asked if they could do the four site biopsy in preparation for going to sloan. They advised no, but said we could if we really wanted to. I said no. If I had said yes, we could have possibly avoided the second biopsy, or could have known earlier and asked better questions when we were at sloan. The second is when we found out about her second biopsy from Sloan. I still felt that antibody would have been the key to clearing her bone marrow for good, and when I asked about the protocol for refractory/residual disease, I was told "we like to make sure it's resistant." If I had simply asked "is she qualified as of now," we would have gotten a different answer (as she was technically qualified), and we could have had a choice to do or not do the chemo.
What makes me the most mad and frustrated is that doctors make you beg, plead, and argue with them to get more information than "well, that's not the normal thing to do." They are the ones we look to to for answers, for suggestions, for new ideas. We bring them information that we have found to find out if our child qualifies, and rather than giving us the straight answer, they bog it down with "well everyone else does this." I thought peer pressure was supposed to be done after high school! She was our child; we had to make decisions that were right for her, not because everyone else was doing it. We were in the right place, and making the right decisions, and her doctors were pushing against us forcing us into treatment we didn't want and didn't feel was right for her. How can they do that to families?!
My baby should have been here now. She should have gotten the treatment we wanted her to get. She should have been accepted the first time we asked. This is traumatic for a parent to go through. No one wants to hear bad news, and doctors should not be making a traumatized parent repeat themselves multiple times in order to do as they wish. We were bullied by her doctors into doing treatment that we didn't want, and weren't informed that she was qualified for the treatment we did want. Their "agenda" caused my baby her life. And now, my biggest fear, is that they are still doing it to other families.