Friday, November 30, 2007

14 Year Olds Don't Get to Make Some Decisions

I don't care how "mature" a 14 year olds might think they are they don't get to refuse medical treatment when there is a great chance they can continue to live. They just don't. Don't try and tell that to any of the 14/15 year olds in the car pool this morning. They are so certain in their beliefs and what is right and what is wrong. Well 4 years ago they believed in Santa Clause and the tooth fairy. It it was the parents refusing
the treatment, they would draw and quarter the family and put there pictures on the cover of People Magazine. Congress would be called back into session and new laws would be passed.

We don't let children vote, or drink or drive. We make them get their vaccinations. We drill their teeth and put helmets on them. We make them buckle their seatbelts. We make them go to school, of some sort. We make them brush their teeth and take baths. We make them wear cloths to school and we make them take ALL of their antibiotics. We make them eat, some times healthy food. We make them leave the house and interact with the world. We don't have long discussions with them about drug use and abuse, we just say NO. We tell them they are wrong and in most cases we enforce the rules. If the kids get out of control we send them to counseling. If that does not work they end up at OUTWARD BOUND. Or as the kids now say "He has gone on 'VACATION'".

As anyone that has read this blog knows, kids with leukemia die. Kids that are treated for leukemia sometimes die. Kids that start the treatment and then are not transfused die. The young man that died this week did so of suffocation. The child has a hematocrit that would not have kept a snail in hibernation in the winter alive. He had no oxygen in his system. His red blood count dropped like a rock. His leukemia was really scared of chemo therapy, his bone marrow was on the run. He might have had a really great result.

What really scares me is that now the precedent is set. Kids at 14 during the worst treatment of their lives get to be recalcitrant and just say "NO". I think the judge made the right decision for this child to let him die given his body had been robbed of oxygen for so long but what will it do for the rest of us that have kids that may need treatment.

Remember, it has only been a few years since they believed we could kiss it and make it better. We would not let a child walk into a busy street even though "he accepted what would happen."

Sunday, November 25, 2007

I still need to add to the this Blog

I want to think we are done. That I have written the last of this part of the story. I think it is part of Cancer Denial. A little known or documented syndrome. It is sort of like the day we when to see Dr. Ojaman and schedule the biopsy of the growth in M-E's scull. At that time he shared part of the waiting room with the Hem\Onc clinic. I could see those really sick kids and remember saying to M-E how thankful I was that she did not have cancer.

It then took me a long time to think of Luekemia as cancer. They call it a liquid tumor. How can you win a battle against one bad cell that decided it was a good idea to go awry?? It makes finding Weapons of Mass Destruction look like a cake walk. It is such a strange way to think or in this case not think. It is just so much information. So much that keeps us from sleeping and thinking and being able to focus.

A tumor is just that, a large, ugly thing that can be attacked with lots of really great killing things. A wayward bone marrow cell. Now that is something very very scary. A cell. Something we can not see. Something we can touch but would not know we had done so. Sort of like faith and grace. We know they are there but then we can not see them, we just have to know.

Friday, October 05, 2007

Been on a cruise.
Lost weight., go figure.
Tucker has learned to go downstairs in the basement.
The tomatoes need to be picked.
Winter is coming.
I have been forced to turn on the heat.
Mary-Elizabeth does not have Mono but lots of her friends do.
I am thinking it is time to order a turkey.

Translation: Things are Good. Life is Normal.

Tuesday, September 11, 2007

I thought I was done but I think this is much harder to escape than I believed

I thought we were done. I thought I had posted the last post on this site. I thought ........ guess what, I was wrong. While she is done, her ANC is very high, I guess the immune system is more than ANC. It involves lots and lots of other stuff. She can fight off stuff, but once something arrives, it likes to stay a bit longer than with others of us that have a good system.

She has a cold. She can't talk, she feels miserable, her throat is sore and she is very unhappy. She is in bed.

So, I checked in. Yep.... she is normal. She is post treatment but needs a year to really get back to herself. So now they tell us. I will relay the message and hope for the best for her.

She becomes so freaked when she is sick. She told me yesterday that she just worries and becomes depressed. Who can blame her. Oh, well. Chicken soup tonight. (Mexican of course).

Sunday, August 26, 2007

End of Treatment Party...... The Review and other Ramblings

Perfect. Perfect weather, Perfect place, Perfect group, Perfect amount of food, Perfect timing.

What more could any one ask. I took a moment every now and then and just looked around. I saw people that had helped us in so many ways do what we needed to do. Sometimes it was a phone call or a roasted chicken. Sometimes it was an e-mail or a varied box of presents for M-E to open on the bad days. It was a basket of magazines and balloons, a bouquet of cookies or just a hug when I was weary. A Tully's card, a chance to go to the grocery story.

Frederica was a miracle. A life changing event.

I know that I have said this before that this blog is done. We have told the tale of Frederica, we have whined and complained and asked for prayers and burned enough candles to create global warming. We have been on a very very long journey and for once this really does feel like a stopping point. A time of new beginnings.

M-E starts her sophomore year tomorrow. This is the first start of school that is not under the Leukemia cloud. Only a few appointments this year. No worries about chemo and radiation. No scheduling of port removal. No hair to sweep up. Just a normal year.

It is time. I am facing my own little adventure this fall. Much less dramatic. I might jot a few words now and then. I am sure nothing earth shattering. Our ties with the hospital are strong but not moment to moment. We will keep in touch with the hospital and lend a hand to any family that needs to know what to worry about and what to ignore when they get the invitation to Cancer World.

We will never truly leave this behind but for now we are just knowing and wise visitors, Elder statepersons in Cancer World.

I will put some pictures here from the party but this is pretty much the end of Frederica's Wild Ride. It is time to make August a time of happy things, road trips, friends visiting, tomatoes ripening. September a time of new beginnings. Friday the 13th just another day, (unless there is a full moon).

It is time for me to spend some time doing some work making this blog useful for someone who has just started. This backwards stuff is hard for someone that just heard the word ANC or PIIC line for the first time.

Thank-you for everything. Thank-you for your prayers and thoughts and gifts of time and food and friendship. Thank-you.

Tomorrow is another day and it starts at 5:30 a.m. I wonder if I have any coffee. I am going to need it before the carpool gathers and we head to Holy Names for the first day of her second year in high school..........

As always, we need lots of prayers, and candles and good thoughts coming our way.


Tuesday, August 21, 2007

COME ONE COME ALL

BIG PARTY DOINGS......

WEATHER SHOULD COOPERATE. EVERYTHING IS ORDERED. I MAY ADD TO THE PLATTERS.

WE WILL HAVE A GOOD TIME.

4:30 TO 8:30 P.M. THE 23RD OF AUGUST. LINK TO LOCATION SITE ON TITLE.

Sunday, August 19, 2007

Visions and Healing


It has taken me three years to realize that since August 14th, 8:35 a.m 2004, while sitting the deck in Lake Chelan drinking coffee and talking with my friend Judy Sommerfeld, we have lived in an alternated universe, CANCER WORLD . More precisely, CHILDHOOD CANCER WORLD. It is a parallel universe. No one can look at us and know we have been given the secret pass words. There is a whole world that is way to familiar of our secret language and shares our fears and our hopes and our sadness.




In CCW, there is a different reality. It comes with a greater appreciation for each day, moment and laugh that comes from a child. People can read about it and listen to stories about it. They can empathise and grieve and feel the same helplessness that each of us feel. But no matter what, they can only really "imagine" what it is like. The best description in the world does not explain the true flavor of a ripe mango or bite of crisp lettuce. I always remember lots of my friends have lost parents. I realize I will not really understand that particular pain until I have the same experience.




Those of us in CCW have a different understanding of what is happening with the little girl Gloria Straus. She is in ICU having been in a medically induced coma for more than a week right now. A very sensitive and involved Seattle Times Reporter Jerry Brewer, has been writing about the story. He is posting a couple of times a day about her plight and the paper has been following the story on a pretty regular basis. Gloria and her family ran out of treatment options in April and are now relying on faith, prayer and pure determination.



Gloria has had 5 months of some ups and downs. She has been home and able to be with friends and family. She has been able to run and jump and play and just laugh. She has had five miracle months.


She is on a number of machines and tubes and had her heart restarted while in route to the hospital. I am sure lots of people are saying "enough is enough" . It is something those that watch say and do so with only the most gentle kindness. Only the family can make that decision. If that is the final decision, it will be made when they have had the time to know it is right for them. I have never had to make that decision. My most trying decision was what kind of juice to try and entice M-E to drink. We always had options and hope and alternate protocols. While we inhabit the same world, we are on different floors.



Apparently each member of the family has had a dream about Gloria and they see her walking. She is visiting them all. She has even visited Jerry. I do wonder if it her way of telling them she will be okay once she is released from this part of the journey. Visions are very much a part of Cancer World. I think we are a people that used to be more open to them and were guided by those very important messages that came to us in dreams and during special waking times. Once you have been knocked out of our first lives, they become possible again because everything is so so upside down.


Mary-Elizabeth had a vision.


I can finally, finally talk about the healing vision M-E had at her Healing Ceremony. She was finally able to deliver the message to Rick Boyle and so here goes.



Gerald King, the Chief Medicine Man, told M-E that she might see things during the ceremony. She settled into her seat, Buffalo, Deer, Mountain lion, hides, covered with corn pollen and sacred soil and the chanting began. Waves and Waves of repetitive sounds, sound I would love to be able to listen to on a regular basis. After the ceremony, after the tea, the blue corn meal mush, after the feast, M-E was very very quiet. I asked her if she was okay. I figured it was just nerves and exhaustion. We had done a lot and had been many places.


In the evening she finally began to talk.


Mom, I saw something.

Where?

During the Ceremony. It was sort of scary.

What was it?

(Insert some soothing word, words of encouragement, general platitudes about how this is normal while freaking out and wondering what was in the corn pollen.)


I saw the moon. Very clear and full. I saw Joseph Boyle and he talked to me.

(Gulp, okay, act like this was a normal vision and ask)

What did he say?


He told me he was okay and to tell his dad that he was fine. He told me that he was always with them and that they should not worry. Then he told me that he had been with me and that I would be okay.


What did he look like?

He was older, like 12 or 13.


Mom..... tears, Mom........


What does a mom say. I don't remember what I said but most likely my usual.


Thanks for telling me, it is okay. Everything will be all right.... Rock her back and forth, Rock her back and forth.


It has been a year since all of that happening. I tried to get her to talk with Mr. Boyle. I certainly would like to hear from my child that had died. She was finally able to tell him.


She was testing Joseph B. to see if he meant what he said. I think her ability to verbalize the message means she is starting to believe the part of the message that meant for her. She is going to be alright.


Visions and messages have great power.

Saturday, August 18, 2007

Dr. Tracy AKA DR. FISHNETS......











I know I babble endlessly about the good things that arrived in our lives because of M-E's battle with Leukemia. I just don't know how not to.
Dr. Tracy Hentz was one of our most precious gifts. She was brand new as a fellow. She was 13 days into her first rotation as the In-Patient Hem/Onc fellow and she was Children's gift to us. It sort of went like this...

Good Morning:

I am Dr. Deb Friedman. I am the inpatient Attending. This is YOUR fellow Dr. Tracy Hentz. She will be yours for the entire time you are a patient here. Quite frankly, I would have rather had a high-speed connection and a very stiff drink at that point in time but I have since learned she was the best gift of all.

She cared for us, she fussed over us. She watched and worried about everything. She came to see us even when we were not her job for the day. She took the time to do all the extra things that helped and asked all the really insightful questions about how we were doing and would fight for us to leave when we were sick to death of being at the hospital. (She only yelled at me once when I didn't take M-E to the emergency room when she had a fever. I am still in trouble for that one. But I knew what it was and I just could not face 378 hours of waiting.)

Tracy also became our friend. At some point I took great comfort in the fact that she was willing to be more than our doctor. It was a sign to me that M-E was going to make it. In some of those very dark days of worry and lack of progress, she was going to be okay.

We love her so much that we sent her to live with Belle and Karen in Chinlee. We could not let her stay here and be unhappy and Tracy will be a great fit for the Dine' (Navajo). She listens, she has a special ability to figure out what people really need and it is not always medicine. She will value the healing ceremonys and learn from the Medicine Men. She will be able to help with the cancer kids that will need her and she will feel like she is not too far away.

She has made it to Chinlee and has unpacked. She has discovered that rattle snakes and tarantulas are nothing compared to the Black Widow Spiders. She is settling in to walks with the REZ dogs and red dust. She is bonding with the local grocery story and grieving about the loss of good coffee. All in all it is good.

Before she left we gathered some people and decorated Waiting for the Interurban. Here are the pictures.

Tuesday, August 14, 2007

August 14th 2004-August 14th 2007

In one hour and 45 minutes, we will mark the moment in time that we entered Cancer World. It is odd, that now looking back, it seems like only yesterday yet I know it has been a long and arduous journey. We are some of the lucky ones. We are about the celebrate the end of treatment and launch M-E into her sophomore year at Holy Names. I love when the good comes with bad.

Cancer World: my new title for the realm we inhabit. It is not a bad place but it is a place that only a select few visit. Others can drop by and lend support but it is sort of like motherhood, until you have a child you are not a member. (Dads have their own world no matter how hard they try.)

Cancer World never lets you leave. It is sort of like being born Swiss. Once Swiss, always Swiss. You can move on but there is always a mark, a secret handshake, a language that only a select few are allowed to know.
It is not a bad place. It is a place where you learn to receive instead of give. You learn to trust and be flexible. You learn to forgive yourself in ways you never knew possible. You re-adjust your priorities and your expectations of life, people, and the world. You learn that planning is for people with nothing better to do but believe they have an iota of control over their destiny. You learn about the fragility of life.

Your learn that children die. That medicine is not the only answer. That God answers all prayers but not in the way you wish. That parents are so so strong but the children are stronger. You learn that death is not the worst option but is to be accepted, sometimes. You learn that sometimes it is the best answer.

Today, the day we acknowledge three years of being in Cancer World, another family's battle with cancer is being played out in a very public way. Gloria Strauss has been the subject of a Seattle Times series. She is at Children's as we speak in ICU and there is enough pain and prayer to cover the whole world. The title will take you to Jerry Brewer's journal. He has been with the family writing about their journey for more than 6 months and is spending lots of time at the hospital.

Today would be a good day to say a number of prayer for the family and for Gloria.

We are just very thankful that this is just an anniversary.

Sunday, August 12, 2007

END OF TREATMENT PARTY...... COME ONE, COME ALL....


We are gathering at the Lake Union Crew facility. It is really a "cruise ship" that has to be taken out to maintain it's "SHIPNESS' We have found brick oven pizza guy. He will be making pizza for everyone and there will be goodies and other kinds of food. All Mary-Elizabeth's favorites. She is refusing to let me make jello. She also wants a chocolate fountain and I am just refusing to do that..... I am not sure why.


If you can come great. Let us know so we can make sure you have all of your food and beverage needs met.


END OF TREATMENT...... WHAT A BLESSING.

Thursday, August 09, 2007

Granma Mary is 75


For some reason this birthday counted. She is a very funny lady. Sometimes she is practical and dismissive of hoopla. Sometimes she shows the part of her that would be Grandma Foster and wants the celebration. 75th was one of those years.


She called and wanted me to get on the Internet and arrange for tickets to see the Rembrandt exhibit Portland. Then she wanted to stay somewhere that they did not take dogs. They she wanted train tickets. Then she invited us. No one else. Okay, task accomplished.


We all trekked to Portland. Stayed at the Embassy Suites and even made dad eat Chinese food. By the time we arrived via car, Mom had read the history of the Multinoma Hotel and knew who made the china. She had talked with half the staff and was organizing everyone. She called housekeeping no less than a half a dozen times and was fully supplied with such items as extra radios and a pillow or two.


We went to the museum, the Chinese garden, shopped a bit, had good food, found a french guy that made good coffee, spent time in the pool and failed to convince mother she should have a spa treatment.


Mom was not given her Rolex by Dad. He gave her $75.00 of Good Will gift certificates. Amy gave her Rolaids, Dad is shopping for a Rolodex, claiming that he is hard of hearing and Mom had a good time.


Check out the old hotel sometime. They flew an airplane off the roof in 1912, a queen or two stayed and breakfast is included.


Wednesday, August 01, 2007

Harry got to us.......




Yes, we have been out of touch. On Friday the 20th of July we joined the "I MUST HAVE THE BOOK NOW" craziness at our local Barnes and Nobles. (I did manage to cancel some of the copies I had pre-ordered from Amazon.) So we arrived about 11:00 a.m. at the book store. We were not smart enough to figure out that there were rules for all of this. One had to enter the very overcrowded bookstore full of people in costume, helicopter parents and old ladies that were ready to jump on anyone that even was thinking about cutting in line, and obtain a band that allowed your color and letter to be called for buying the book.
Instead, we went to have some coffee.... Seemed like the thing to do. We watched the people and marveled at the variety of those "attending" the event. There were scores of 20-30's all decked out. They had been fans for 10 years. They were serious about their outfits. Lots of dementors and school girl outfits. Then there were the 40ish parents with the "SOLO AND MUCH OVERPROTECTED' child. These parents joined in the frivolity by wearing capes, Harry Potter glasses and carrying a wand or two. The SOLO AND MUCH OVERPROTECTED child was also dressed in a very spiffy outfit that was made by the OVERPROTECTIVE mother between Child and Me Yoga classes and Latin for 6 year olds. This group sort of puzzled me because once everyone commented on the cute child enough they wanted to go home. I overheard multiple conversations that followed this path:
Emily, Courtny, Madison, Zoe, Zach, Zim, (Pick a name) can you agree we have had a great night and you have had a chance to participate in an event that will forever be a part of your catalogue of special events that will provide you with the necessary depth of experience in the future so that you may write the perfect " Why I must be admitted to the exclusive _____________ ( fill in blank of any exclusive Middle School.) essay. Wouldn't it be a better use of our time if we went home instead of waiting with all these crazy people for hours and hours to purchase a book we are not going to read until tomorrow anyway????
I was not quite sure why people were here for this if they weren't going to stay to buy the book, but then, we had actually read the books and seen the movies and really wanted to start reading.
So we waited, we named people and guessed about their lives, we cut in line for fun and tried to buy three and not just two books. We finally held the sacred tome at 2:20 a.m. Yes, we did wait. I must say it was worth the process. M-E started to read in the car as we headed to deliver a copy (via owl mail) to someone that would never have made it to the store.

3:00 a.m. We were in bed. For the next two days we read. Tucker was so upset that we did not move and ignored him that he decimated M-E's book. Great end, good book. Fun things and lots of loose ends tied up nicely. Deaths not too bad. It was fun to be a part of the "event" 8 million books were sold in 24 hours..... in the United States. Pretty impressive. I think Shakespeare would have approved.

We read the next three days. Tucker expressed his displeasure at the reading part by taking apart M-E's book. Oh, well. She still was able to read it.

Good ending. Satisfying ending. Harry will be missed but then an entire generation has learned that a book can suck you in and keep you there. Great to know it is not just TV, Video games or movies....

Thursday, July 19, 2007

I hate that Life is not Fair but then We would all get sick of Candy!

I am pouting and playing the "woe is me" record. No dream trip to the spa and rest and relaxation for me. I guess I should have just given up when I had to change it the first time. It is just falling apart all around. First a problem at the office kept me from being able to go. I had a situation that could not wait and had to be handled. Then the person that was supposed to go with M-E to Camp Good Times backed out so she is not going to that camp during the same week I had planned to go.

I guess I could leave anyway but then the whole purpose was to be able to go and relax. I could camp M-E with her dad or her grandparents or send her to Idaho or to Arizona but then I would worry about hobbling together a plan. I will just tough it out and not think about it.

I have thought about a few days or some other sort of plan but don't seem to have the energy to put it all together again. While a couple of days seems like a good idea I just really need to have some real time. It takes me three or four days to relax. I have to get out of town, have everything planned so I don't have to worry. Maybe some other time.

Okay, I feel better. It helps to whine.

Monday, July 09, 2007

Off to Camp, I hope she stays this year

She is facing things like hot weather, cold water and more reflexes. No meds, no port and great numbers. There is that Friday the 13th to face this week but then we have faced other great obstacles.

I had one of those unreasonable panics today. One the creeps in every now and then. A week or so ago, M-E mentioned nose bleeds on a regular basis. I saw some unexplained bruises on her legs. She has been "EXHAUSTED" Of course I was sure she had leukemia or a new other kind of friend........ ITS BACK......
kept creeping into my brain. I asked if she wanted a blood draw and she said yes, it felt like it had been too long.


So Sunday after swimming we went to Children's. I am sure M-E would not want me to mention I did not have a bra on during the trip. Opps.

Any way we went and did the draw. No easy task. Our body's are not very willing to give up blood when the heat attack is in full swing. Our veins retreat to the nether regions and hide. So task done, on to other things.

This morning I thought I would inquire. I e-mailed both Dr. Tracy and Nurse Karyn. No instant answer. I didn't think about it until later in the afternoon. The process went sort of like this:

I wonder why they didn't open my e-mail? I am sure they are just busy and working on curing cancer and stuff.

But I e-mailed this A.M. Karyn is busy on Mondays but she always checks her e-mail even when she is on vacation. She is just busy. Dr. Tracy is playing first year fellow and it is really busy.

Maybe they are not calling because they have to figure out what they results mean?
Maybe they think it is back. Maybe they have assembled the team before they tell me. Maybe they called at home and no one answered. Maybe I should check my messages. Maybe I should call the hospital. It they want me to come in then I know this is bad.... Oh, Now that M-E has cancer again, do I have to bring her home from camp. Should we let her stay and have good week.

If we do will she crash and have to be air lifted to Seattle. Will we have to start at Mary Bridge and the horrible emergency room? Oh, this is very very bad. I knew that with the first nose bleed we should have called 911 and had her transported to Childrens. I don't think a helicopter can land in my front yard. I think my trees are too big. I knew I should not have planted the trees.

Oh, now what. Call. Make them tell you to come in. Be brave.

987-2000
Hem/ONC clinic please

(Voice Mail Hell)
If this is an emergency hang up and call "911" ( I always love that one. like someone in an emergency would want to visit a phone tree!!!!!)
If you are a physician needing to contact a physician in the clinic please press "8"
If you are a patient needing to schedule an appointment please press "2"
If you need to contact the charge nurse please press "3"

Hem/Onc Susie

Hi Susie My name is Sally Lanham, My daughter's name is Mary-Elizabeth Sierra Lanham she had a blood draw ( and I know that it is very very bad and we are going to be best of friends soon) and I was wondering if you could check the results.

Oh, I have to wait for Vanessa to call me back. I see....... (this is so bad everyone knows. They are pretending they can't find the records.) Okay, my number is......

Oh, Vanessa is off the phone. Thanks. Vanessa could you check the counts for ...... Thanks. Yes I am ready. Oh, you are going to give them too me. Oh, yes I do want to know.

Crit 38.6 should be 44ish but okay
Plat 225 very normal. She could loose a toe and clot like a sailor.
WB 6234
ANC 4239 Oh, she could lick door knobs and still be okay.


Thanks. Oh, no, I am fine. It was just a bad moment of apprehension....
( We are home free again for awhile.) Camp is saved. Friday the 13th will be saved. New friends will be made, new memories, new experiences.... It will be grand..
]
Thanks......


It spins out of control so fast. My sister will have plenty to say about it. But she says we only need to be concerned about unreasonable and irrational fears. I don't thing I am there yet..........

Friday, July 06, 2007

Public Service for Those that Live in Seattle

Today's featured link is to the Side Sewer Web Site. You can find out where your neighbor's sewer connects to the main. You can find out that your sewer goes down the side of the house, makes a weird turn, across the front of your lawn, under the side walk leading to your front door, under more lawn to end up in the middle the driveway before heading to the street.

If you were wondering. I did find that the trees are not in the line because the line is nowhere near the line. But who knew.

Good news we are only in the bid stage. No problems, only trying to be proactive.......

Wednesday, July 04, 2007

She has made it to 15, YEAH..............







We have arrived!!!!!! I have lots of friends that bemoan each and every birthday of their children. They seem them points marking time where the child will leave them.
I am just so happy and relieved and thankful for Birthdays of any sort. I love that we are now at 15, we are 6 months post treatment and it is Sun on 4th of July.
Today, I am writing while a very tired bunch of girls lounge on the couches, playing a weird "I never game" and barely able to speak or think. We are supposed to go to a party but I think my daughter is wilting. I am going to lure her anyway.
We make Hollywood Nails open up at 9:00 a.m. and they did 5 sets of toes. Here are the pictures to prove it.






Monday, July 02, 2007

Best Laid Plan s


No trip to Canada this month. Maybe next if things at the office don't fall apart.


Something happened that made me cancel my trip. I even have my monogrammed spa robe in hand. I am going to to my best to try and go the week in August that M-E is at Camp Good Times. But then I have learned things don't always work out the way you want them to....


Big birthday doings..... several girls spending the night. A cake has been baked and then Hollywood Nails at 10:00 A.M on the 4th for pedicures all around..... Johnny will regret he would not let her get her nails done until now. I have visions of jewels and air brushing and.................................

Wednesday, June 27, 2007

Dad in the Garden


Here is a very normal picture but one that give my the creeps. Not that it is a bad picture or anything, only I have one almost like it with my Grandfather. I guess it is time to get the pictures organized and find the picture. Then I have to buy a scanner and the figure out how to use it.....

Mary-Elizabeth turn 15 in a week.........



Wednesday, June 20, 2007

I Have NO Buisness doing this but then.......

Click on the title and you will see where I have decided to go to celebrate the end of Treatment, with a Treat.

I have scheduled myself for so many spa treatments that I have to have a schedule.

Now if I can just not feel guilty about this and not be freaked about the money. I have decided to look at is a savings the Miraval spa would have been twice as expensive.......... and oh so hot in July and I would have had to stay in air conditioned rooms and that would be bad for the environment and the energy would have melted the polar ice caps and the sea would have risen and the polar bears would have had no home and the salmon would overtake the sea because no one would be around to eat them................. I think I need a break from reality.

Please send any good book suggestions. I am going to do lots of reading.

Tuesday, June 12, 2007

Last Day of Freshman Year


No fancy cloths, they were in their pajamas. The last day of school was all about being comfortable for finals. I did not find myself sad or teary this year. I am so so grateful that there is an end to the freshman year. I am no longer sad when time passes and she grow up and head out. I am grateful that there is a child that is growing and that time IS passing. Having the ability to share moments with her is so much a joy, when not a total aggravation.
Joey and Caroline have been a great addition to our lives. We are looking forward to next year.

Sunday, June 10, 2007

Basque Rice Pudding




Grandma Foster always wanted to make the perfect rice person. A basque neighbor of hers had always made this creamy rich pudding. NO matter what Grandma did she could never duplicate the recipe. I found one in Sunset magazine and am trying it this morning. I have the pot on the stove but do not have any cinnamon sticks. I will hope it is okay.

I have to go stir now.....

I think I should have a cook stove, a wooden one. I think that is the missing ingredient to this pudding. I am going to keep stirring.

So
Take 6 to 7 cups of milk. (Any kind but I bet skim is not very good... just guessing)
One cup of rice, not Uncle Bens but the sticky Japanese rice.

2 cinnamon sticks to put in and boil during the cooking process. ( I don't have any so I am just boiling milk and rice right now.

Have to go stir.

Well then after it has cooked for about 30 minutes. Opps it was supposed to be covered. See, Okay now the pan is covered and gently simmering. I found that 3.5 on the stove seems to keep it there. But now I have.....

Oh there is so much pressure.

I guess these sorts of things take time to learn how to do. I just don't see how the 6 -7 cups of milk and one cup of rice can make pudding. Oh, there seems to be more activity then"gentle simmering" have to go.

Oh, yeah, boiling over. Not good. I am sure that this would not happen on a wood stove. Well it is getting close. I think we are getting rid of some of the milk in the evaporation, boiling over process. We will see how this goes. Next step, find a container, add some sugar and cinnamon and chill. I will let you know.

I may even have a picture or two...2

pictures will come later to this entry. Cooling is happening and I have to do some other things today.

Saturday, June 09, 2007

I found this a while back and it seems like today is a good day.

It has been a rough week in the world of "Kids with Cancer". It seems like a lot of them don't have it anymore because they have died. I would rather say died then "lost the battle". I think you loose if you don't do give something you best. I think you loose if you don't do try when there is a chance and good options. Sometimes the universe does not align right and the kid cancer is really really bad and we just don't have the right stuff to make it better.

After reading some a book that my sister suggested I buy I realize that sometimes the treatment can cause more problems that have to be fixed. But then that is a train of thought for another day. Here is the poem I found somewhere, somehow. It is apropos.

Remember Me

When the snow melts and the sun warms the earth.
As spring brings forth a new hope for life and the first flowers show their colors.
When you look at the night sky with it's soft twinkling lights.
When your children hold you close and look into your eyes.
As you hold dear to your heart the love of your family, never let them stray from the truth.
When Eagles soar in circled flight and their wings touch.
And treasure the time spent with loved ones for they are the most precious of all.
As the rain falls on your face and the drops roll gently down your checks, smile God has given us this day to heal our wounds.
With lightness in your heart learn from all what life has to offer.
Remember me, I'll always remember you.
StrongBearRedHeart

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

Change


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"

Monday, April 30, 2007

Been A While


I don't quite know why. I think I wanted to stay in the special, on the beach for awhile place. One that can be so easily disturbed. I have tried really really hard to not be jerked back into the reality of my crazy life and the clients and the stuff that didn't get done and the trial coming up and the........................

So, I am back. I am working on the garage. I should not say, "I". We have had an army. Two loads to the dump is all it takes to find a parking space. Now, I am not really parking there yet, but I can visualize parking. It is almost the same thing. I can see it happening in the next couple of weeks. A rather large table needs to come out. Then I am ready to go. The basement is next. I am getting rid of fabric and stuff. I feel a need to find empty space. Maybe it is part of my post-vacation state.

M-E is caught up with school. She felt so far behind that there was a possibility that she would be returning to 8th grade in the fall to try again. She has recovered and seems headed to her freshman finals. She is going to be a sophmore. I have always been a sap at this time of year but each year that she goes to school and completes is such a huge gift for which I feel so blessed for obviouse reasons.

Dr. Tracy ( also known as Dr. Fishnets) is going to Arizona to Chinle to be a doctor. She loved every minute there except maybe for the rain and the red mud and the........... She is ready for the challenges and the adventure. I am making reservations for Christmas as soon as Southwest will let me. Belle is excited that she will be there. Belle is working to get her a big enough house that we can stay with Tracy and not with Belle and Karen. It is a complicated relationship.

Tuesday, April 17, 2007

WE are Back and WE are Relaxed
















What more do I need to show. Sun, people with smiles and beach. That pretty much says it all.





We Loved Mitch but He had to Leave

Broz, Mitchell August

Mitchell August BROZ Beloved husband, true friend and wise counselor, Mitch Broz passed away peacefully at Swedish Hospital in Seattle on April 4, 2007, following a long and courageous battle with melanoma. He was surrounded by several of the many family and friends to whom he devoted so much love during his brief but immensely full life. Born April 30, 1960 to Richard and Blanche Broz of Mercer Island, Mitch graduated with honor from Mercer Island High School, Georgetown University (summa cum laude) and the University of Washington School of Law (Order of the Coif). He was a partner in Mikkelborg Broz Wells & Fryer, the firm co-founded by his father in the 1960s. He became known within his firm, and throughout the Seattle legal community, as a man of strong intellect, impeccable ethics and an attorney to whom other attorneys naturally turned for advice. He was committed to this country, and was deeply concerned about its current approach to democracy, the environment, civil liberties and its involvement in war. From his study at Georgetown, he developed a lifelong interest in many Eastern philosophies, and in Zen Buddhism in particular. From Zen he received solace and a positive attitude toward life that supported him throughout his illness. Mitch will be remembered as someone who possessed remarkable sensitivity, as reflected by his gentle spirit. His love for the law was second only to that of his cherished wife, Sharon, his partner in life. They made a beautiful home together on Snoqualmie Ridge where they shared their enthusiasm for travel, gardening, Asian art, reading and history. Mitch was also a gifted and creative pianist with tremendous musicality, who was mostly self-taught. He played by ear and created his own compositions. He loved animals, was concerned for their welfare and was especially fond of cats. He also gave generously of his time to his community, through service as an officer in the Snoqualmie Valley Rotary Club and the Virginia V Board of Seattle. Mitch is survived by his wife, Sharon Christiansen Broz of Snoqualmie, his mother, Blanche Broz of Bellevue, his brother, Bill Broz of Newport Beach, California, and loving family, friends, colleagues and clients too numerous to count. A Memorial will be held at 2:30 p.m., Thursday, May 17, 2007, at Mercer Island Presbyterian Church, 3605 84th Avenue SE, Mercer Island, WA 98040. Contributions may be made in memoriam to the American Melanoma Foundation or to the Humane Society for Seattle/King County.
Published in print on 4/15/2007.

Tuesday, April 03, 2007

Two Paths


Dear Mitch;

I heard a rumor that we may not be traveling the same road much longer. No more comparisons about ports and meds and side affects. No conversations about cereal and white bread. No more mutual cursing about Dexemethezone. ( Inside cancer treatment stuff.)


We will be so so sad that you need to diverge in this Yellow Wood and take that other path. We all know that at some time that less traveled path is one we must travel but that does not make it any easier. M-E-B and I have always known that is was a possibility for her and for you. Each of us that have suffered from or cared for a cancer patient knows it is a possibility. We keep our eyes on the hopeful path as long as possible but also know sometimes it is time for what Dr. Tracy calls a "DO OVER". There comes a point that we have to "Return to Sender" and get re-issued, re-boot, re-format and try again.


There is this tendency to try to not to think about the leaving part and the stopping of treatment and the going. But as we all know packing for the trip is the hardest part. Getting through security is a pain in the behind. But when you finally arrive and let go and relax it is a great thing.


MEB is in Las Vegas with more or her kind (Teenage Cancer Patients). They are having a great time and I will not be talking with her about all of this until her return. But know that she would be the first to tell you not to worry. During her healing ceremony she saw and received a message from a child that had died 8 years before named Joseph Boyle. He told her that she would be all right and was asked to tell his dad that he was all right. I don't know if she has thought about what that means but it tells me we change form and this "mortal plain" is not all we have.


Take your healing bears and let the strength they give help you on the next part of your journey. We will take care of Sharon, I will keep paying for the candles I lite in your honor ( even though it irks me for some reason) and we will be in touch again.


The picture here is one I took in Venice of St.George the Dragon Slayer. It is hard to see but there is a candle on each side. I lit one for you and one for MEB. You both have slayed the dragon, only in different ways.

Thursday, March 29, 2007

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.

Wednesday, March 28, 2007

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........

Wednesday, March 14, 2007

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.