Thursday, May 31, 2007

ALL, Leukemia, Cancer, Liquid Tumor, Frederica

I don't care what you call it, it is time for it to no longer be a part of our vocabulary. We need to move on to Survivor, Trooper, Good Former Patient, Normal. I wonder if now is the time. But then if not now? when?

I have been a bit surly these last few days. Some say it is the full moon or lack of sleep because of Tucker waking with the robins (5:00 this a.m.) or let down after the long week-end or lack of enthusiasm about people's complicated and difficult lives.

I think it all started when I looked in my drawer and found "Summer 2004" and realized there has not been a folder made for 05 or 06. I just made me realize how long we had been doing this. But we are done for all intents and purposes. We have a few more months of appointments and then a few more years of follow up. September 13, 2014 is cure date. Too far to even think about but lots of living to be done.

What I don't want to loose from this experience is the appreciation and gratitude I have gained over the last three years. I don't want to loose my perspective on what is important. I don't want to loose my sense of humor. It served us well during the our journey.

It is time. This is a normal summer. Camps, visits with friends and lots of time in the back yard, long walks with the dog. Instead of being cancer free time, it is school free time..................

Wednesday, May 30, 2007

An Old E-Mail I found and want to move to the Blog. THIS IS THREE YEARS OLD AND NOT CURRENT.

Tales from the Medical Rabbit Hole or Why no one has heard from me since Thursday afternoon
On Thursday the 17th of June, I took Mary-Elizabeth to see the eye doctor. I was found to be near sighted when I was a kid and have always taken her for regular appointments. (I should report I believe she has her father’s good eyes.) At this appointment he found some hemorrhages by her optic nerves, within 10 minutes of this discovery, she had appointments with our family doctor and a Retinal Ophthalmologist for the next day.
On Friday, our regular doctor found no medical reason for this condition. He did extract two gallons of blood for further investigation. The Retinal guy was less positive. "Well, it might not be a brain tumor…….., it might be hydrocephalus……….." He sent us to a Neurological Ophthalmologist. Dr. May was much more positive that whatever she had we could fix. Her vision loss might return and she is healthy otherwise. We have a MRI with a special eye guy on Friday.
I have had my nervous breakdown and have regained my sense of humor. I will be here the rest of the week from 9-2:15p.m. M-E is in camp and we are keeping a normal schedule. If I seem a bit distracted, please forgive me. Asking me how I am is very kind but makes me cry but quite frankly this is the most frightening thing I have ever been through.
Someone said that this was God’s way of making the next few years seem like a walk in the park. I must not be a good student; I could have done with a less extreme lesson.

Tuesday, May 29, 2007

Look What I found on the WEB

Click on the title and you will be taken to the Children's Hospital Web site with a nice article with a great picture of Mary-Elizabeth. I guess it has been there a while. Google is a good thing when you are waiting for a judge to call....................

Sunday, May 27, 2007

Memorial Day 2007

M-E is spending the night with Dr. Tracy and the new African Grey parrot named Moci. He is 9 months old and has some clothing issues. He was sick as a baby and was given some medication. It made him itch and he pulled out all of his feathers in three days. Only the down has grown back. He has his wing, tail and head feathers but the rest of his body is covered with little tiny down feathers. He looks like he is wearing a fuzzy turtle neck.

He has taken over the former home of Hailey. The 13 year old that decided to fall off her cage a few weeks ago and break her back and had to be put to sleep. She had been Dr. Tracy's companion since she had been an egg. (The bird, not Dr. Tracy) Hailey was a funny bird. My favorite was her call to the dog "let's go tinkle". We also appreciated Hailey because one of her favorite foods was toast with Grandma Mary's Jam. A bird of great taste.

Beverly and Maggie were listening to me and afraid I might try and become a parent to a parrot. This will not be happening.

First they live for 60 - 90 years. My dogs would want to eat them. (Tucker evidently things he is a bird dog.) Most importantly, they don't like me. In the Mercer Island Parrot store there is 7 year old bird named Quito. He talks up a storm to M-E and will not talk with me, at all. He was walking down a rope and M-E asked where he was going and he said "on a trip". When she left he would call her back... " tut, tut, tut, come here....."

No were are working on the house and the garden and the garage. My attempts to reclaim the garage are stalled. The good will stuff is gone but the carpet from down stairs and some other less identifiable items are now filling the space. I am sure in the long run, it will be a good thing.

Time to try and do laundry..... I don't know why I just don't give up, pack it up and take it to be done......

Sunday, May 20, 2007

Two Roads and other such nonsense.

The Road Not Taken
Poem lyrics of The Road Not Taken by Robert Frost.

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler,

long I stood And looked down one as far as I could

To where it bent in the undergrowth;
Then took the other, as just as fair

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that, the passing there

Had worn them really about the same,
And both that morning equally lay

In leaves no step had trodden black

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.
I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and

I I took the one less traveled by,

And that has made all the difference.

Oh, Mr. Frost. I don't recall when I first encountered this poem. I have loved it and remembered it. I have re-read it on occasion but like most things, it just sort of sits on the back of the shelf and waits to be taken off for use occasionally. Like the good China.

I don't think it makes it any less important or has less value. It is still a cherished bit of wisdom.

It came to mind when Mitch died. I realized that we were on the same path for a long time together. It seems unfair that he has gone down the other road so soon but then we have all come to those points when we have to take a sudden turn.

Friday, May 18, 2007

Pre-Trial Crazy Ness

We are going to trial on couple of issues. We are having so much fun reading and reviewing and working on what everyone has said, will say and might say. I hate that anything has to be said.

We have passed the point of no return. We are going to trial because everyone has so much invested in the process. It is no longer about what is in the best interest of a child but who can get the most from the other person. Who can say the meanest thing. I am going on the hopes that we can exit this process with a little bit of dignity and something to bring this family back together again. There are no winners. Maybe the child will have something out of this.

There are so many things we do for the "sake" of the child. We give everyone medals in a competition. We make sure they have the same material possessions. We monitor their television and computer interaction. We plan for kindergarten, and middle school and high school and college. I wonder who the real beneficiary of this activity is to be? I think there is way to much parent ego in this whole solo kid project.

I hope there has been enough balance in the direction I have launched Mary-Elizabeth. I hope that some of her working hard and studying hard and going to crew and all of that is partly what she wants to do. I would hate for her to think that her time has been wasted.

Well I have to go work on the trial.

Sunday, May 13, 2007

13th a Mothers Day

It has not been, a breakfast in bed, Brunch, hang the fuchsia basket kind of day. This has been a day where I have been counting my blessings because I am still Mary-Elizabeth's MOTHER. It is on days like this that I just get weepy and say the chant.

I am still a mom. I am still a mom. I am still a mom.

M-E asked what I wanted for Mother's Day and I told her I wanted to be able to park in the garage. I was well on the way when her father was hi-jacked and diverted to another project. The difference is profound and the garage will be assuming it's true avocation and house the car soon. I will be happy when that finally happens.

Dad and brother Alex were here this week. Lots has been removed from the basement and around the house. Alex did a bit of yard work. He removed the dirt from around the edge of the front flower bed. He is working on making it a less attractive place for the newest guests in our house. "Moisture Ants". They figured that since no one else was living down stairs, they should move in. They were not counting on the bug police. Another story for another day.

Mantra today.... I am still a Mom. I am still a Mom........

Sunday, May 06, 2007


She has grown some hair, the kitchen tile has been replaced. We are able to go to places like Swanson's for lunch and Tucker ate the legless Barbie.
I also have been struggling with the various soap dispensers that have been installed during the "Cancer Years". I used to understand them and knew how they worked. I could push a button and was certain where the soap would come from and know what form it would take. I hated the powdered stuff and much of the liquid smelled like the stuff they tried to use to make the gym not smell like dirty feet. New places that have replaced our old favorite haunts while we were away, have installed a variety of devices. No longer do you press and then receive the liquid/powder. Now you press and get foam or more often a glob of stuff falls to the floor because there are not clear instructions on where the stuff comes out. Some are "eco" friendly and only dispense after you say the magic words, wave a wand and stand on you head three times.
The faucets and paper towel dispensers are just as tricky.
Oh well......change and "improvements" happen, whether or not it makes any sense, you are ready for it or notice it is happening. While our life was on pause, the new and improved bathroom soap dispensers invaded.

Saturday, May 05, 2007

Gone Missing, Had Gone Missing??

Gone Missing....................... I don't think that is an appropriate gramatically correct sentence....

The plane has gone missing............ Shouldn't it be: The plane is missing. If the plane is missing, we know it is gone.

Gone missing, should I just "get over it"