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....