God answers all prayers. Sometimes the answer is No.
We did not receive any good answers today. Still Chronic Kidney Disease (CKD). No going back. Only not moving forward.
Well, hell we are great at doing that. We know how to stay put for a long long time and we know how to wait. We don't like it very much but we know how to do it.
Who could have known? Who would have figured out "Your Child has Leukemia" was a better diagnosis than, CKD... At least with Leukemia they hand you a plan and you head out to conquer that mountain. Your life goes to hell but then it all settles down.
This comes with vague general comments like, don't eat processed food, avoid salt, and water and protein and......... we will have to see how it goes and....
So we left the hospital today, had lunch and went to Paint the Town. Painting pottery seemed like the only thing we could do. Nothing more nothing less. So we sat quietly and did three colors and Mary-Elizabeth's was perfect. We watched the bored mom's and nanny's trying to explain how the colors worked. Some finally let the eyes and hands of 4 years do their magic. Other's "though it best to go home for while and let it dry". One small child decided her grandma needed a few painting lessons.
We both are working our way from anger and disappointment and denial to some sort of way to cope. Heaven knows we have done lots of coping. I just don't know what else I can do.
So, I will be supportive of families dealing with "just leukemia" as they start the journey. I will hug the mom of a child who also received bad news. I will mourn the loss of another child that relapsed the same time Mary-Elizabeth did and say an extra prayer.
Okay, she is going to be a cancer survivor and she will keep herself healthy and take care of those kidneys of hers. It is just what has to happen. No amount of whining or cajoling is going to make this diagnosis different. No that I am not going to keep on trying.
I will carry on and try and do something positive with my life.
There is always someone trying to walk on a wire across some big open space. Grand Canyon, the quad at U of W ( I go there you know), or just between a building or two.
We ooh and awww and we are amazed all holding our breath lest they plummet to their death. We are so impressed with their strength and determination and their ability to concentrate so so much that they don't fall. They have to breathe so we hold our breath for them in support.
We Cancer World people live on that wire and we hold our breath all the time. We try so so hard to make it across to the other side.
"Your child has cancer. Here is the plan. You have two years and 14 days to suffer." They mention secondary cancers and other such stuff but you focus on "getting to the other side." We mostly get to the other side.
Remember the movie Holes, well after you live on the wire for a what seems like a million years, you find the "other side" is not inviting.
There are Holes, and dangerous animals and scary twists and turns. There is no way to prepare for anything but as Paul Schliep put it.... Surprises.
Pick an organ, any organ. Cancer treatment can effect it... If not now, in the future. It took 5 years for Mary-Elizabeth's thyroid to die. Her kidney's are not so forgiving this time. Total Body Radiation, pages of meds, months of steroids and well......
Kidney's are sick. They are tired of filtering and doing their job. They are going to have hissy fits and not do their job very well. They don't regenerate like their neighbor the liver. My brain is not big enough to wrap around this issue.
I do know the answer is not a Kidney "transplant". OMG. Everyone this is not television medicine. Transplants are the last resort. They are the worst thing that can happen to someone. Needing a transplant is like having a tiny bottle of air and having to make it until next Tuesday for the Russian capsule to bring some more! Now, not that I am not grateful for the fact they are even available but this is a terrible experience. It is not Jump out of the twin towers or die in the flames bad, but it is close. She had to jump and hope they built the net in time.
I am hoping we make it across the abyss.
Stage 3 Kidney disease......
Kidneys are not like livers, they don't heal. They can be stabilized and encouraged and protected from further damage but......
So that is the news. I don't have any other answers other than we are going for ramman tonight. Doing some research and freaking out a little bit.
I think I am going to go watch some South Park or some more sushi movies.... I just can't think about it right now. I makes me sad.
