I was going to wait to call the hem-onc clinic about Madeleine’s pathology results until tomorrow. We’d been told that we probably wouldn’t hear until Monday, so as today wore on, my mom was growing more and more anxious. I’m not sure why I wasn’t? Perhaps I had a gut feeling everything was ok. Perhaps I’ve been too stressed out these past couple of weeks with her surgery and trying to keep family happy and worrying about her and how she’s healing and not getting any sleep because she’s up every few hours again that I no longer had the energy or ability to stress further. Who knows. But I wasn’t. But I digress.
I called the clinic this afternoon to check in and got a call back from Cori! Here are the findings: Most of the tumor is now benign (aka: matured). They have classified the tumor as being a treated Neuroblastoma.
What does this mean? It means that they consider her finished with treatment at this point. They feel the damage that can be caused by more chemo at this point is not worth the benefit of shrinking/getting rid of the cells that still remain.
I asked in as many ways as I could think of what this means. Since there was still some active tumor, could it come back and we’d have to go through it all again? Can the part that’s still in her spinal column start growing again and compress her spine again? How do we know it won’t come back? Are they sure??? After all, it wasn’t all benign.
Cori is fantastic. She assured me that based on her tumor pathology and genetic markers, they do not believe that it will come back. She said that there are lots of tumors that are not operable that they don’t even do surgery on and leave them in to mature and just watch them. That since Madeleine’s was operable and they felt she’d have developmental difficulties if it wasn’t removed, they did operate. That she has far less tumor than many patients with similar types/aggressiveness of Neuroblastoma end treatment with and that she will more than likely be just fine. She said that this is why she’ll be so closely monitored for years.
Phew. Big sigh of relief.
Somehow it seems impossible that this nightmare is so close to being over. Sure, we’ll still have regular physical therapy until she is back on track developmentally and monthly doctor’s visits and MRI’s every 3 months for the next year and a half. Then the MRI’s go to every 6 months, I believe, and she’ll have to be monitored, to a degree, for the rest of her life. So I guess the word over is not entirely accurate. But these weekly, daily doctor’s visits and blood draws and chemo and transfusions…those are done. It seems like yesterday that she was diagnosed, so for it to be finished with chemo and have the tumor out, I’m almost in a state of shock, I think.
What is left for her in the near future? Well, we’ll find out more on Friday when we meet with Cori, however based on my conversation with Dr. Park before she had surgery, the next step is to remove Madeleine’s port. Risk of infection via the port is higher when it’s not being accessed regularly. So we will more than likely be scheduling that surgery ASAP.
Thank you all so so so so much for your support, help, shoulders to cry on when I was having a rough day, hospital visits, love and just being there. It has meant the world to us to have all of this support, no matter how much, to help make this time easier. I honestly couldn’t have done it otherwise.
The stress and toll these last 3 1/2 months have taken on me, Alex and Madeleine is immeasurable. If I have not been as in touch with folks as I normally am, I apologize. My communication with the outside world has definitely suffered as other factors took priority. But Madeleine has an army behind her and is our little miracle baby. We feel so lucky and thankful to have come through this journey with such an amazing outcome.