Lots of cancer's are "staged". It depends on the kind and lots of factors. Stage Four is bad. Stage One is not so bad. People move back and forth in the stages and it rules their lives.
Leukemia is sort of like being pregnant. You are or you are not... Simple.
Mary-Elizabeth does not have leukemia any more. She has not had it in her system since some time in November of 2011. She has been in "remission" or not pregnant since then. In order to have her transplant, she had to be cancer free. The whole cancer free thing seems to be confusing because of the length of the "treatment". It does not fight leukemia, it just beats up the bone marrow to such an extent that in theory, no respectful leukemia would dare to come back.
The various kinds of stem cell transplants, bone marrow, cord blood, related, non-related, self-donated, all of those are just jargon. You sign papers, let them kill the cells in your bone marrow that produce blood cells and replace them with healthy, happy, normal cells. Or that is the plan.
So, since we live in Leukemia World and we don't get to have stages, (not that we really want them), I have decided we are in Stage Ten. I figure we have been here long enough to just make up stuff.
Stage One: She was diagnosed on Friday the 13th of August 2004.
Stage Two: She was Leukemia free or in Remission on September 13, 2004.
Stage Three: December 7, 2016, she took her last dose of Chemo therapy.
Stage Four: Relapse on September 28th 2011.
Stage Five: Remission November 10th, 2011.
Stage Six: Double Cord Blood Transplant, 2012.
Stage Seven: First new baby countable cells show up in her blood, February 11, 2012
Stage Eight: August 1, 2014, the final doses of immunosupressents are taken. (Should have only had to take them for 100 days, but who is counting....)
Stage Nine: De-Portation Day. The port that lives under her skin with a nice tube going directly into her heart, is removed. August 25, 2014...
Stage Ten: Trying to begin to believe and trust it is over.
This is a journey at its end. We have traveled across the country to find a path to the sea and have returned to tell our tale. Like Lewis and Clark we are worn and battered and very ready to sleep in our own safe homes.
Stage Ten begins today.
Docs have secret ways to inject poison into children. In the outside world we are all familiar with the IV. Well IV's fail, need to be changed a lot, create problems when the veins figure out something is going on and they rebel.
So.... there are 4 things kids in Cancer World people receive.
1. PIIC Line. It is put in a child's arm like an IV but there is a catheter that goes into the child's heart. The docs love to put lots of chemo into children and if the end of the line is in the heart it is dispersed very quickly throughout the body. Mary-Elizabeth had one of these from August 2004 until December. They didn't want to give Mary-E a port so we had to make the PIIC Line last and last and last. It was it's own kind of nightmare. It had a dressing that had to be changed and her skin did not like it and on and on. It had to be flushed twice a day.
2. Port-A-Cath. So this is what she has now. It is commonly called a Port. It goes under her skin and is attached to her chest wall. The tube/line goes into the heart. Notice there is a theme here.... It is great because nothing is left hanging out. When there is a need for access. The fluids go in and out of this. They have a special needle that goes in and makes all of this happen.
Ports are wonderful because once the scar heals you can go swimming. Showers even happen earlier.
Hickman's. Named after Dr. Hickman. I think he might be alive and lives in Edmonds. He is retired. The Hickman can come with one spout or two. I am not sure why some people get different ones. I knew from Cancer Part 1 that a Double Hickman meant a transplant. We all know how much I didn't want her to have to have a transplant but that is old news. When our new nervous and flustered doctor told us she was going to have a double Hickman installed, I knew what it meant and was not happy. It did turn out to be a good thing.
In Central Line world she has been very lucky. No line infections, some stubborn times but all in all they have been just fine. They all fail eventually. The PIICs require twice daily attention with saline and heparin Ports must be accessed once a month at least. Hickmans are on a once a day schedule.
So short hand; PIIC lines, Ports, Hickmans.
Our friend Bob suggest that they should install a USB port and then do all the blood work via computer. I am sure he will be the next to retire.
