So what does that mean?

I haven’t posted in awhile. I guess with Facebook and those short posts, I didn’t have a long rambling post to make. Life has been crazy. With Katie-Anne, work, and home…I haven’t felt that I could breathe in a very long time. That’s really no surprise though to those that know me in person, or are going through this journey that is cancer. At this very moment I am sitting on the couch at the Ronald McDonald House in New York. First, this is seriously the most comfortable couch in the world. It’s huge and soft and a comforting brown color that immediately makes me think of home. I love this couch. Second, we had mIBG scans and bone marrows this morning. First case of the day and we are already done and back at the house. She had a little trouble and her oxygen went way down because she started coughing on the table during sedation. They had to wake her up a little then put her back to sleep. She just has a lot of fluid that can’t be peed out. She’s had the equivalent of about a half gallon of liquid the last week shot into her veins. So she’s very wet and they had to suction her out. Katie-Anne got mad at them because she was awake, I wasn’t there, and they were trying to get her to cough by softly pounding her back. She was maaaaaaaaad.

After she was awake and not spitting pea soup at everyone, they paged Dr. Kushner to talk to me with preliminary results. Things on the mIBG looked the same, if not a little faded. It’s hard for them to tell exactly with them side by side from her previous scans because her last scans were taken at Dallas Children’s so the machines are different, but to him and Dr. Modak, they look a little better with no new spots.

So what does that mean?

It means that Katie-Anne will never be NED. She will always have those three spots of mIBG avid spots. It means that nothing new has grown. It means that she is “no evidence of active disease”. This is pending PET scans that we will have in Dallas.

So what does that mean?

It means that we are going to start the vaccine trial at MSKCC. It means that we are done with frontline treatment and going on to maintenance. It means we will no longer be treating her cancer (or what remains of it) with chemo, antibody, radiation, or anything else that is considered frontline treatment. She is done. Dr. Kushner made a very good point when I brought up how the very thought of this scares me. He said that we can’t give her chemo or those other treatments for the rest of her life. At some point, we have to go onto maintenance. The time is now. The time is now to trust that the remaining disease is matured and not active. It is time to trust that she will not relapse. It is time to give it back to her body to do the fighting on it’s own with the vaccine.

The vaccine in this study targets three markers on neuroblastoma cells. The aim of the vaccine is to trigger a response of the immune system against neuroblastoma by causing the patient’s body to make antibodies against these markers which would, in turn, cause white blood cells to find and attack the cancer cells (mskcc.org).

Kushner told us that it has been two years we have been fighting and if she were going to have new growth, chances are it would have already happened. In effect, she would have already relapsed. But that we also can’t be too careful. This disease relapses so easily, and we need to be extra cautious.

So what does that mean?

It means that she gets to live a normal life with no more chemo, treatment (other than shots and a few medicines), and she gets to hopefully forget all about all of this. It means that I will spend every moment worrying if her neuroblastoma has grown back. It means that every bump, pain, and fever will send me into a panic. It means that her hair will grow back and I will forever be playing with it. It means that she has a second chance at her life without cancer.

Now starts a new chapter. Weekly flights to New York for the shot for a few weeks and then tapering down. There will be scans every 8 weeks to check for new growth (relapse). We will be starting a new medicine. It’ll be a new life for her. I’m more scared now that I have ever been and I need this to be true. I need her.

Tonight Times Square is going gold for pediatric cancer. We will be there with all our new friends and fellow cancer kids. I’ll be holding her up, looking at all the boards shining gold. I will be crying tears of both pure joy, and pure fear. And when she asks me, “Why are you crying Mama?” I’ll be able to tell her that it means that we are done.

It means there are no more buggies.

 

 

 

 

 

 

 

 

 

One Reply to “So what does that mean?”

  1. Oh my God please know that I’m not using my Lords name in vain, I’m praising Him for He is so good. I have followed your daughter and you I think since your first post. I’m a Christian,a wife, mother, grandmother and also a great grandmother. I’m also a RN, and I’m so incredibly happy for you. I understand your fear, you’ve already been to a hell of sorts. But you have to rejoice, trust in our Lo d and Savior because as much as you love your little pooter Jesus loves her more. Let us pretend we are standing ,holding hands as we thank Him for this beautiful child he has given you and the Bible says where ever two or more are gathered here I will be also. So together we stand and firmly declare that Katie is healed. God Bless you both as you start this new chapter. Sue Martin.

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