Bathrooms

How would you feel if someone stood at the door of the bathroom listening and asking details of what you are doing, every time you went in to the bathroom. We listen to Riley pee to make sure he is hydrated and has good flow. The color needs to be yellow not dark tea. Dark tea is the sign of stressed kidneys. The poop is not to be constipated or diareah. Diareah may be an indication of illness and constipation can cause scraping in a vulnerable area to bacteria. So, every time Riley heads to the bathroom we pause and listen. If he takes his time we ask how he is doing. If he says he is pooping we ask what kind. Its all in the details.

When Riley raises his voice in frustration, I don't reprimand him. It is an invasion of his privacy. We have been very good though at telling him why his poop needs to be loose but not runny and his pee needs to be light in color. When I remind him to drink his water, he huffs at me but he gets his glass and drinks.

Tom worries that Riley pees too often and not enough volume. We worry about diabetes as one of the side effects. I have been paying attention to the fluids, so I know when he makes three trips to the bathroom, Riley has just finished a can of pop shortly before. Tom is a worrier. I am worried also, but we can not let it consume us. Thursday we get a CBC. It could tell us everything or nothing. Our hopes are that the numbers keep going up and up and up. But if we dwell on the waiting, and the thought that the numbers might be bad, that is not good for anyone.

Let it go. The situation is what it is. The numbers will be what they are going to be. We can celebrate or make hard decisions accordingly. But in the meantime we have to function, not dwell or let the worry consume us. This is our normal for a while. You get one shot at life. Do you want to enjoy it or be miserable all the time.

Right now Tom listens at the bathroom door thinking the worst. Riley comes out and tells him in a gruff voice he is fine. Riley wants his space. He does not need any more of a downer than his life has already thrown at him. We look , listen, and ask, but then we need to just let it go. Riley is doing better with the situation than his father. Riley knows the story. He is smart. He listens. I have discussed it with him. His Dad has discussed his case and the decease with him. The doctors have discussed his options and situation with him. He gets it. Which is why he doesn't chew our heads off too badly when he opens the bathroom door to a barrage of questions or let us check the toilet before he flushes, so we can see for ourselves.

He is truly an accommodating teen ager. I would always say that while Trevor might be an accident waiting to happen, Riley has a good sense of self preservation. What we need to do is just live life. I think of my friends who are retired with age related health issues. They still do things. They travel and see friends. They take their pills and they still enjoy life as fully as they are able regardless of the health restrictions. We need to do the same. Follow the rules, but don't dwell or think the worst before we know anything.

Patience, Tom complained over the course of our marriage that I have no patience. I would rip into a project without restraint. But with Riley and this illness, I don't dwell too much. If I don't think too much about the future and live in the moment, it is much healthier mentally for all of us. Tom is doing enough worrying and dwelling for the whole family. The numbers will come. In a few months hopefully Riley will be well enough to attend high school. If the numbers are not good enough then we address the bone marrow transplant. There are good and excellent matches. He has an excellent chance of recovery if we do it.


Two weeks in the hospital for intensive Chemo to kill the marrow, then the transplant, and 3 to 4 weeks in isolation under the watchful eyes of Dornbecher staff. Survival odds are very good. I look at either road as a win. Patience, the numbers will come and we will have more information.

On the zoo field trip I met a mom who was just a year out from a bone marrow transplant for Lymphoma. It gives me a strange feeling to think about our meeting. What were the odds of us just randomly sitting together when there were four buses and 180 students with 35 chaperone's, some driving their own cars, that I would sit next to this woman who has just gone through what we are facing, recently. We did not know each other. I was not pointed out to her as "that mom with the sick child." She just sat down next to me in the last empty seat. If you don't believe in God's blessings, its your loss. I know in my heart there was no way we would
have met coincidentally. Her story, the details, if Riley does need BMT it is not horrific or unmanageable. It is survivable. He will come out healthy at the other end. The first three weeks will be miserable then its all good.

If we lived our lives dwelling on what might happen, we would worry there might be a car wreck or a horrible accident. We would never leave the house. I am slowly learning to be willing to take Riley out and do things with him. We can't be house bound forever. The doctor encourages us to be doing things. Now that we haven't had to rush to the hospital or need blood or platelets, we need to get over fearing that the worst will happen. Live in the moment. Be smart, but don't plummet to the depths of depression, and don't rush the doctors or the cure. Check the poop and pee, but then forget it and go have fun. Riley is doing well. Don't see negatives where there aren't any.