Old E-mail I found and thought I should store somewhere. Sent September 2, 2004

Subject: Good and Bad News about Mary-Elizabeth
Good afternoon:

This is the first day I have been able to take a moment to compose an e-mail and send it out. We have a lot to be thankful for but some worries are ahead.

Good News:
A. She has the best kind of Lukemia. ( I refuse to learn to spell it.) She has ALL and we are into week three of a 2.5 year period of treatment.

B. I will have a working home office by week's end for the times I need to be home.
C. She has been able to be in school all week.
D. She is a girl and not a boy. Boys are treated for 3 years.
E. She never had any Luequemia symptoms before we found the problem.
F She did not have to have brain surgery in order to make the diagnosis.
G. 75-80% of the kid make it and she has always been better than a C student.
H W e live close to Children's Hospital and don't have to live in the Ronald McDonald House.
I . We have friends that will bring us something to eat. Just be forewarned when you enter the Children's Hospital cafeteria you enter 1952 only with instant potatoes.

Bad News: We can not be more than 60 minutes from Children's Hospital for the the next 9 months.
She does not want my input on her Make-a-Wish. I really thought that having John Travolta fly here with Tom Cruise as co-pilot to pick us up to fly to Dell to pick out a lap top and meet Lance Armstrong and then on to Disney World where Brad Pitt would meet us and we could go on all the rides without waiting in line was a good idea. Oh, yeah that would be the plan for me and my sister.

Reality Check`

We are headed into month three of 'Post Treatment" time. We are regaining some things that we lost in those dark years of leukemia. I ignored lots of things like people and our yard and the house and my health. We have lost touch with so many people and so many parts of our old lives. We seems to be making some attempts at re-connecting. Some more successful than others. I am running into a pretty common phenomenon in that people have been afraid to contact us. Our silence has made them wonder if things are okay. If M-E is alright. If there has been a turn for the worse and she had died and no one bothered to tell them. I hate that my silence may have created those thoughts.

Suffice it to say, we are here, alive and well. We are doing what we can to enjoy and honor each day. We are very aware that life has not been easy but it is also not impossible to deal with. We have had the best of all outcomes.

At some point in M-E's treatment, I began looking for other blogs done by parents with similar issues. I found the one about a little girl named Hannah. She was diagnosed with ALL and died within weeks of that diagnosis. Her mom has kept writing as the year as passed since that death. It is a very different life they live. I will not expound more but she has important things to say. I wish there was more that we could do for everyone but I think Tracy is right. Some times we have to be returned to heaven and have a "D0 Over."

First Day of Lent or What I am giving up for 40 days and 40 nights.

I used to give up things like fabric. I don't really buy fabric any more since I have not really be quilting any more and I was sort of distracted by that Leukemia thing for the last few years. I have been known to give up E-Bay. I do like to look at things.

I was shopping this morning so I could send my sister an assortment of cards. She sent my daughter a thank-you card and it was an altered Sympathy card. She says she was being resourceful. I am going to do something to fill that need. Of course is that any stranger than having my father use a 1936 Christmas Seal for a 36 cent stamp? Evidently the post office did not seem to mind. What really boggled me is that they did not even cancel it.

So here I am back at Lent. 40 days, and 40 nights of giving up something. That old fasting thing. I think I am going to give up something productive like clutter. Maybe I could find 40 spaces in my house to clear. Now that would be a good thing. Maybe I could give up dis-organization. I could sort and throw and clear. Maybe I could give up not going to the Dog Park with the dogs. They do love it. Maybe I could give up short afternoon walks and take long walks instead. Maybe I could give up weeds in my back yard. Maybe I could give up using my garage as a storage locker. Maybe I could give up...................

I think it is much easier to give up something you can see and touch and think about. I am going to try the clutter thing and the walking thing. I also have banned bread and pastries from my world. I have decided that does not mean tortillas or crackers. It is not all desserts so cookies are okay. I am just not very good at Lent.

I asked Mary-Elizabeth what she was giving up and she said Chemo........ and then pointed out that she had given up more than enough. I had to agree. 40 days..............

Beach Time

Mom is a Mountain Person. I am a beach person. I can sit for hours and listen to the pounding and the birds and the wind. It is a place that I belong. I don't need to be in it. Just by it. I am not an Atlantic Ocean person or a sunny beach person. I am a stormy beach person. I love the time there.

We met Mom and Dad at Moclips on the Washington Coast. The North Beach area as the locals call it. It is literally 9 miles from the end of the road. Desolate, quiet, harsh windy, sandy. All those good things. It is not Canon Beach but it is beautiful. No tide pools but then endless stretch of beach is a great thing for walking or just sitting. It was cold and very windy. High and Minus Tides. Crazy people digging razor clams in the dark. Small bar/restaurants that scared my daughter and time to learn how to play cribbage with Grandpa. Time to read, off leash time and good meals. It felt very normal. We will be going more often. No need to return to that location but finding a place down the road.

Birthdays and Other special Occasions

Tomorrow is Dad's 76th birthday. It is not "old" in today's world where some people live to 114 but it is darn right respectable in any world. Father, Dad, Daddy, how do we ever actually honor him? How do we ever thank him for all that he has done for us? How do we ever let him know what an important person he is to us? How do we explain the lessons he has taught us? How to see, how to listen, how to evaluate, how to work and work hard. How to see potential at every picked over garage sale? How to face life and all of it's challenges. How to laugh when there is nothing funny about a situation. How to ask the hard questions. How to admit you are wrong with conviction and integrity. How to tell a tall tell. How to create memories for our children. How to teach them to want to travel and try new things. How to make a pair of shoes last a little bit longer. How to value friends and family and put up with all their foibles. How to fry perfect bacon and make sour dough pancakes ( I am still working on that one.) How to put stamps on an envelope so they are not all cancelled and can be reused. How to forgive yourself for not letting a man poorer than yourself polish your shoes when you only have two dollars in your pocket. How to give the best of yourself to those that seek your help. How to not carry a grudge. How to accept people for what and who they are but still expect the best of them. How to place the best picks in the office pool for March Madness. How to have the courage to make big life changes and stop what is making your so so unhappy to find what you really want to do. How to milk a cow and pull off a chicken's neck. How to go on endless road trips and camp out every night. How to appreciate art and music. How to stop at historical markers just because. How to try and understand the mistakes we as a culture have made and do a little something to fix it. How to appreciate Chief Joseph and the importance of seeing where the battle occurred. How to drive a stick shift. How to treat your life partner. How to accept all the weird things your children do. How to forgive your children for all the weird things they do do. How to get a 4 point in college. How to have an interest in lots of things and not be a nerd. How to laugh at yourself when you make a laughable mistake like saddle the draw horse and not the riding horse. How to take advantage of every possible opportunity when you have the chance. Find out where you are and explore a place for more than the obvious. How to face serious and life threatening challenges with grace and honor. How to be thankful of each and every day knowing they are a gift.

I don't know how to say the right things so I have decide to put this on my blog and and send him a copy for his birthday and try not to comit mail fraud by using old stamps or Christmas Seals.

Hair History

I think what this really shows is smile history. Always a smile. We are working on keeping that smile as the pressures mount at work and at school. We have lots of balls in the air and sometimes breathing is a forgotten pass time. Each day is better and then there are days of total exhaustion but the energy returns with more regularity. Lots of activity. Spring is coming. The light is returning to the world and we have HAIR

Full Moons and Weird Dreams

The difference between a good hair cut and a bad one is 6 months in Tucker World. Tucker is wanting to meet the newest Seattle "it" scottie. If you click on to the title, you will be wisked away to the new dream girl in his life. He is hoping to get to meet her some day.

Endless exhausting dreams. Weird, nonsense sorts of madness. Murders and non-responsive police. Endless treks that lead to no end. Restarting of dreams even after waking. I did have tea in a really great tea house with the Sisters of the Holy Names. Evidently I had failed to notice the lake side retreat area out front next to the ferry dock. Oh, well it has been a busy couple of years.

We are gearing up to gear up to be busier in a different way. M-E is going to part of an exercise study at the Hutch. Chipper, cheerie personal trainer for 12 weeks. She can get there on a bus after school. The one afternoon of work study and then crew one night a week. She will transition to crew more as her other obligations drop off. It is pretty exciting. I think I am required to hunt for appropriate outfits for the tasks.

One more day this week and then we settle into a quiet week-end. Maybe the dreams will subside.

Wise Words

" I know what I can do. I just don't know what I want to do."

Ruth Verhoff 1-27-07

I have been having these crazy dreams the last few nights. Long working dreams. The one's where you wake up tired. The ones that keep going even after you wake up and go back to sleep. They are the type where you are lost in a dark dark town. You finally find someone and find a place to stay but have to keep going to get there. I ended up in Vermont. I could look out over the valley and was perplexed as to why I did not see any cows. En route to Vermont, we must not forget the giant mother and baby skunk in the field. Or the small problem with my backing into the 1944 WinWam ( Looked like a VW Van to me) The blond teenager wanted to know if I was going to help pay for the small crease in the fender and asked for $2500.00. Evidently it is expensive to fix a 1944 WinWam. I was at the movie theater before I realized I had insurance. Then there was the evil neighbor that would not leave us alone and we came home and had to leave our house and stay with them, but they were moving but could not move until he delivered the baby that was due on that day. His wife was ready to go to work and I had to stay and there was a big rottweiler that needed to go for a ride and I took him and everyone wanted to pet him and he was vicious and I could not find a place to turn around to go home...............

See, sleep is exhausting and confusing and oh so disturbing. I think I have to make some changes in my life and my dreams are definitely search dreams. We shall see what tonight shall bring.

M-E update: No news is good news.

Looking and Seeing

Look..... Look..... Look, a word that echoed through my childhood. Come see.... We didn't have a TV so we played games, read books and looked out the window at the birds, clouds, trees, or the weird neighbors. It didn't seem to matter.

Girls came over today to bake. For some reason M-E wanted to have them over to bake. We had a bunch of stuff left over from the Christmas baking that did not happen. So they arrived and they baked. Now when more than one 14 year old is in the kitchen, only limited baking happens. So one pan of 7 layer bars and a cheese cake. A movie has been attended and some art work has been produced. The dogs have been walked and fed and then lots of talking.

I found myself saying Look....... as the birds arrived. I found that Look still works and still has the same power. They all came to the window and we had a short bird lesson. After the moment, they went back to the "baking" and chatting and I took a moment to look. I saw 4 girls lost in the chat of girls. I saw smiles and heard laughter. I saw "Normal". I loved that I did not have to look very far.

It Seems like We Should Be Done

But then something little happens, in this case a fall down the stairs.

Something so little and the worry mode is triggered. Did she fall because she was mad at having to help put Christmas away. Is it left over from the Vincristine? Was she just moving too fast? Was it a bit of all of the above? How bad will the bruise be? Is anything broken? Why is the back of her hand still so bruised? Is she tired because of being 14 or has her hematocrit dropped? Should I just clean up Christmas or worry/

See, I thought it was over. There is really nothing to worry about but then I thought I was done turning on the Christmas Lights. When the snow started, I turned them back on because they looked so wonderful.

We still have a fair amount of the white stuff left. More is coming tonight. I don't worry that this is a product of Global Warming because we do have these storms on occasion. I worry about Global Warming when it is 50 degrees in Red Square and no snow in sight. Now that is a problem. I still get cold when I think about Dr. Zhivago!

They Know What They are Saying When They Say YOU CANN'T GET BLOOD OUT OF A TURNIP. Did you know Mary-Elizabeth is a Turnip?

I found out yesterday that she is not human or even in the mammal family. She is a turnip. She does not look like a turnip, smell like one or even taste like one when dipped in dressing or roasted in olive oil and salt. She just looks like a kid. But she is not.

Yesterday she had her first post-chemo blood draw. No veins were found, and when one was coaxed into appearing and was poked, the blood went to other parts of her body and her hand pretended to be a turnip. The blood would not flow no matter how much they coaxed. Finally when the other hand realized it was next, some and I mean some, in a very minute but sufficient way, came out.

The lab said it was "just enough" only a drop too much.

We have to plan on how to do this next time.

January 8th

This may have been Elvis's Birthday

This may have been my Grandmother's Birthday (She would have been 99)

This is more important than any of those items:

It is M-E's first Post Treatment Blood Draw. There is a knot in my stomach that no amount of Chocolate will fix.

Numbers to be posted later.

Cranes

They fall in Bellevue.

They swing around in the wind in Seattle and break windows.

They are brought back from certain extinction by old family friends.

They are folded by cancer kids in search of survivorship. What I find wonderful is that this folding and stringing has brought a "string of kids' together.


M-E began her 1000 during one of her dexemethosone times. It was a very hard time for her because she was full of anxiety and needed to do something, had no energy because of the chemo and had to do them perfectly. She has many more to go. Elise R. had a folding party this summer. Her 1000 cranes are with her all the time, either in the room or at home. As I have mentioned before, Elise R. is a little girl with nasty ALL. Hers laughed at chemo therapy and she went straight to transplant. M-E and I have spent time with the family in lots of ways. Phone calls, visits, cards, letters. We gave Elise 13 pieces of tiny beautiful paper for her Day 13. Now M-E and Elise and her brother Jared are in a contest to see who can fold the tiniest crane.

We were asked to help a family and be a resource. M-E She was a bit reluctant at first because she did not feel like a survivor yet. She could not imagine what she would have to offer to someone else with cancer. It did not take her long to realize she had a lot to offer. In fact, this has become her service project for school.

The chain of cranes has expanded to another child. Estifania, Fani for short. She is a lovely little girl from Eastern Washington with a high energy Lupe clone. Elies's family decorated Fani's room for her long transplant stay. M-E made her 100 cranes for the first 100 days. When we delivered them, M-E showed Fani how to make them and thus the cranes are continuing in their journey.

M-E's presence was requested for a second lesson and during that time, another child hitched a ride on the lesson.

We have to go buy more paper. Not just paper but "good paper". It doesn't really matter. What ever lifts these kid's spirits.

Thoughts on the End of the Year

They are a strange sort of thing. Thoughts and new plans. I guess I have the belief that 2006 should be summed up and plans made for 2007. I feel a need to do the usual unkeepable resolutions and then find the list and laugh at my big plans. It seems to be part of what we do with life. We plan, we resolve, we organize and plan some more.

I don't feel that I can do that right now. I can plan some of the big things. The major events that require more than grabbing a tooth brush and going out the door. High School and two 4 legged creatures make that difficult. They require some thoughtful planning. A movie can happen on the spur of the moment. A play takes a bit more. Dinner plans are easy. I guess it is about taking a few hours here and there. Maybe that will be the resolution.

Not the Basement: One box at a time.

I will work on the list for tomorrow. Maybe that will be the resolution. Make a list of things to do. I did find a frame in the basement and I did frame a picture of one of M-E's art pieces. See I can accomplish tasks.

The Big Wind Down

Lots of activity. Lots of clean up. Lots to be thankful for. Lots of great friends. Lots of great family. Lots of things to think about. Lots of dishes to put away. Lots of things to think about and do. Lots and lots and lots.

But I guess the best part is that there will be lots more Christmas Seasons. It is so easy to say that you know things will "be alright" but the real test is in having that all rightness deep in your soul. It takes that kind of belief in Santa to make it seem real. Remember back when Santa was so real. He cared and he delivered. It was a simple relationship. You were good and you were reasonable on your list. You communicated the list and you waited. No doubts. Not questions that it was going to be great and the thing you wanted or in some cases, the perfect present that you did not know you wanted but Santa could see the want deep in your heart.

You know you have to believe even when the reality of and enormity of what Santa does starts to creep in to your Psyche. Flying Reindeer are not as hard to swallow as the size of a sled, the number of houses and the time thing alone.

It is the same with Leukemia. It takes a long time to even believe that your child has it. It is so intense at the beginning. The chemo and appointments and the expected side-affects that don't come and the unexpected ones that blind side you. Telling everyone, trying to make them feel better because if they feel better maybe the making them feel better will make you believe it is okay.

The "its going to be okay" is starting to sink in. The fact is we are surrounded and aware of so many that don't have a happy ending. So many that the littlest thing goes wrong and they never are allowed back on the path. Things you only hear about and never really know exists in the world.

We have been so blessed by our family, our friends, our doctors, my work. I could never repay those that have given so much to us. I can do stuff for other's and give back when I can.

We are winding down but then gearing up for the best year of all 2007.

Ornament Hangers and other Christmas Issues

Where have all the ornament hangers gone? They must be hiding with all the good Christmas Cards. I am not impressed. maybe as we get older we are more interested in quality rather than quantity. I value my ornaments and they need more than 54 gage wire ( I think that is thin) in a little pack for 59 cents. Hey I would be much more inclined to spend a few bucks for hangers that won't release their charge and smash years of memories on the floor.

Oh, I have become my father...... Now there is a realization.

I am done with work sort of for the rest of the year. I am going to try and turn it off in my head. I really need some time to do some mundane things like put up more tasteless Christmas lights and get out the last of the Christmas cards.

I have a list:

1. Organize all my pins. They are in a number of boxes and should be out somehow to be seen and have a chance to be put on a Jacket.

2. Clean out and start the pond. It would be great to listen to with my new windows.

3. Wash the covered area stuff. I have a new washer, it should be useful.

4. Clean out the cool blue bowl, sort through the rocks for the good fossils and put them in a good box. They are old and need some care.

5. Get tickets for the theater for the Tap Root.

6. Relax, relax, relax.

7. Find the lost gift cards that I put somewhere.

8. Sort through a box a day and get rid of stuff.
9. Put all the pictures in one big box or several.
10. Relax, find some decent ornament hangers and Christmas cards for next year and figure out what the denomination was for 1975 Christmas stamps.

Maybe it is Over....

We have just been going to school and going to work and doing homework and writing Christmas cards. The tree is purchased. The gifts are under control. Not much going on there this year. I have to make decisions about Christmas Dinner. What to serve. Lamb, Bone in Breast of Veal or wild Mallard. How to decide. Maybe we will have a real pagan feast with only meat.

I am seeing a change. I don't know if it is really there but it is a change. A bit more energy, a bit more umph. A settling into the hair coming out. I think it has slowed down. I think it heard me say, let's get curlers and a curling iron and lots of hair goop. If it is coming out lets just fry it on the way.

I have thrown, literally, thrown some lights out. Hey, at night it just looks pretty, freestyle. I think I am ready to fact clearing the table and looking at the boxes down stairs. It just feels like work. I am trying to just recover from 2.5 years of hell. I am not motivated to do the perfect Christmas because I am certain for the first time that there will be more of them to come.

I also am in a battle with my child. We might have to have separate trees from now on. I want a white tree with white angles and silver starts. She wants color and big and glitter. It must be from her father's side of the family. I want simple and clean surfaces and garland and ribbon and ............. Oh, maybe I am to blame.

Oh, time to get back to work.

Post-Chemo Depression

It is not found in any versions of the known DMIV that keeps track of those sorts of things. I think M-E has a case of it. Last night she said it did not seem like it was over. I would agree with her but then.......

She said that even though the chemo made her tired and was a constant reminder that she had cancer, she said it was a comfort zone. She knew what to expect and how she would feel. Now she is waiting to see how she is going to feel.

Because of the long use of the drugs, the recovery will not be swift. She is going to work on rebuilding her red blood cells. She has been on the low side of the supply and all of that takes time. Reds are weird creatures. They live for 120 days or so and evidently don't always get much of the bone marrow factory time. They say it will take six months for her to recover her counts. They will increase slowly over time.

I would prefer a bit bump. Maybe back to normal in a week or so. Seems reasonable. You would think that if they could kill them so fast they should have figured out a way to make them come back. Seems only fair.

Here at Last Here at Last Here at Last

I can't believe it, I can't' believe it, I can't believe. I have to let it sink in. Too much going on to do a proper entry. Just know we are breathing......... Grateful and very relieved.

The last dose.

Tears and Anticipation

I think I am starting to breath. I don't really know for sure. I am just a bit edgy and ready to deal with life in general and just wanting to get on with it. For the first time in a long time I feel like we can make some plans and look into the future and have the presence of M-E as a part of that future. I am just feeling the tension and the stress leak out in positive way.

The windows were installed usterday. What a project. Hard to imagine the uproar of 5 big guys swinging sawalls and diamond blades and sledge hammers. This house is going no where.......