SunShine Kids

Sunday M-E joins the gang. She is off to Vegas with three other children from here to meet up with 24 others from around the country. I am sending the camera so we will have some pictures.

Should be fun for here.

The title will take you to the web site.

Time Does Fly

I have learned that silence makes people nervous. At this phase of life, please know that things are just slowly winding their way back to normal. We have been on a quest.

M-E is going to Vegas for gathering of like survivors. She and 27 other children are gathering to spend time together and to build a net work of kids from all over the country that have had a similar experiences. She leaves on Sunday the 1st of April and returns on the 6th. We then leave for Mexico on the 7th. Quick turn around.

The quest if for a swim suit. She has a great suit and felt another on just like it was not appropriate. Thus a quest was commenced, started, mapped out..... What ever. It has been a quest. Landsend has been called on to deliver half the inventory in stock in every color and size and possible variation. The local swim suit store has been visited. Macy's has been abandoned as a place so pathetic, why bother to go for anything but sale sheets. JC Penny's did come through. I am please to announce that Landsend did also. She is set. Suits to mix and match and wear. Suits that don't make her feel fat and ugly and gross. Her words. She has since been told by the many wise women in her life that all women feel that way.

The best part is that after a valiant effort, we have had success. She has three suits that make her feel like swimming. What more can you ask from life. I have two suits to try on but trying on suits makes me feel fat, ugly and gross........

So it is just not me.

I look at this picture of this lovely child taking care of her dog. She has hair and looks healthy. She is wearing Holy Names sweatshirt. I look and realize that at this point in our lives, no one knows what has happened if they don't know us. People don't walk up and ask what kind of cancer she has, or how I am doing. We can choose to share the news. I have found that it freaks people out. I guess that is why people start with

"I AM A CANCER SURVIVOR"

It keeps people from regretting they asked....

Here is a great piece that someone wrote about having a disabled child. It really sort of hit home. We were in "Italy" until our plane was hijacked to Holland on August 13, 2004.

WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Dear Dogs: I have no idea who wrote this but it seemed to be someone I would like to know.

Dear Dogs,

When I say to move, it means go someplace else, not switch positions with each other so there are still two of you in the way.

The dishes with the paw prints are yours and contain your food. The other dishes are mine and contain my food. (Please note, placing a paw print in the middle of my plate of food does not stake a claim for it becoming your food dish, nor do I find that aesthetically pleasing in the slightest.)

The stairway was not designed by NASCAR and is not a racetrack. Beating me to the bottom is not the object. Tripping me doesn't help because I fall faster than you can run.

I cannot buy anything bigger than a king size bed. I am very sorry about this. Do not think I will continue to sleep on the couch to ensure your comfort. Look at videos of dogs sleeping. They can actually curl up in a ball. It is not necessary to sleep perpendicular to each other stretched out to the fullest extent possible. (I also know that sticking tails straight out and having tongues hanging out the other end to maximize space used is nothing but sarcasm.)

For the last time, there is not a secret exit from the bathroom. If by some miracle I beat you there and manage to get the door shut, it is not necessary to claw, whine or bark, try to turn the knob, or get your paw under the edge and try to pull the door open. I must exit through the same door I entered. In addition, I have been using the bathroom for years...canine attendance is not mandatory.

The proper order is kiss me, then go smell the other dogs. I cannot stress this enough. It would be such a simple change for you.

Thanks,Mom

I think this is a perfect spot

Sadie on the lookout for danger........ Tucker on the lookout for food. Perfect.

Busy week. M-E and I are going to a Mother Daughter Brunch. I hope it is a good thing given we have to drive to Bellevue. Oh, I am so bad....

She is at her first Concert

She earned tickets to see Rascal Flatts. She took Whitney. I will have more to tell tomorrow night. She is spending the night with the Verhoffs and then they are taking her to school.

Should be great. She was excited.

My mom knew who they were and thought it would be a great concert. Only my mom.

The title of this should take you to a video of the group for you that are less than savey about the "music scene".. Anyone hear about something called Rap? or is it Wrap?

The Last of The Leposy Medicine has been Taken.

Leprosy you say? Well of course my daughter has been taking drugs that treat leprosy! Remember, nothing should surprise anyone. It was a drug that is used to prevent PnemoCystis Pneumonia. The killer of many immune suppressed people. It was one of the things that killed lots and lots of AIDEs patients early on in the epidemic.

Yes, we are done with that part of Post-Treatment. Thank heavens. It is over.

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.