She feels like everyone is dying

I picked her up at the bus yesterday. She had been to camp for 9 days with Laura Breshock. No Whitney this year. She was tired but clean. she had received a call and knew that her surrogate grandfather, Richard Davis had died after a very complicated and nasty battle with some new kind of infection.

He has been a wonderful presence in the life of Mary-Elizabeth. She felt like he was another grandpa to her. She used to go to Camp Grandma with Whitney on numerous occasions. That sort of stopped after she was diagnosed but she loved him and knew he and Louis cared endlessly about her. They brought her a huge stuffed flower when she could not have real flowers and of course the famous Road alligator. Ours appears to be stuffed, green and plush but then when you are driving along the roads of the world it would be logical that thy would be black to fit in to the environment.

He will be missed.

16, oh how sweet it is.

Lots of friends, lots of fun, lots of hot dogs, lots of relief.

Friday the 13th Trip to Idaho

We left Friday the 13th. What was I thinking. Road Trip...... We were traveling with Liz and Sopie and Elvis Fluffbucket. Their purpose was to pick up Delila Fluffbucket. We stopped at places like Mel's 24 hour dinner in Yakima. Free Pancake day. 14 hours later we arrived in Boise. (Oh, Liz would not stop at the Hungry Red Neck Cafe close to Lime Oregon. It might have been wonderful. But then we will never know. Drove through the College of Idaho and discovered the feed lot is gone and replaced with Trailer World for all your horse hauling needs.

We collapsed into bed. I was able to watch the last bit of Battle Star Galactica. My secret obsession. Then up early. Aunt Mary was first on the agenda we were able to see her. She was very weak, not really able to speak. I realized in an instant that the person I had spoken to a week before had left. We said our good byes, spent some time with Logan and the rest of the gang and headed on our way. Off to pick up the pups and then up the road to Riggins.

I guess we all return home, just like the salmon headed up to spawn. There is something deep in my soul that calls me back to those deep canyons, and angry rivers. I love the sounds and smells and the feel of pine shade, dusty yet inviting. I love to find places that know what "fry sauce" should taste like and how to put together a burger. We stopped for a bit along the Payette River. Hot, yet refreshing. Cold water that is trying to escape the canyons.

Through Cascade, McCall and then into Riggins. Population 404, two steakhouses, two bars, a grocery store, mini mart and a place where pesto was defined on the menu and a beautiful Best Western. The hotel sits on the point where the BIG SALMON meets the little salmon. Lots of fisherman, bikers, and fly catchers of the bird variety. We took a big heavy sigh and stayed for two nights.

Short visit with Cousin Mary and Barney, a trip of the Big Salmon. A roadside picnic and then a long haul home.

Those who traveled with me noted that I had a story for every bridge, had lived in every town, knew every rock and could comment on almost anything that passed before us. I completely resisted telling the story of Falling Rock.

So this is what I observed on my road trip back to Idaho this decade:

College of Idaho is smaller. The pick-up trucks are bigger. No one was wearing a Hillary for President Hoodie.

Dear Aunt Mary

Lung Cancer. Bad Bad. Treatment, not so great but maybe it bought you some time. Please know that there are lots of things I didn't know about you and while they always appear in the obituary I wonder if they give the true picture of what a person's life means. Since I don't know your middle name or your birthday or place. Since I don't know when you were married or even how long you and Logan lived in that house on Alamo. I guess what I have to say goes like this.

You were always there when we visited Boise. I do remember another house in Oregon but for the most part it was the red brick house on the corner with the ever growing tree in the back yard. You always had coffee at hand or a number of other options. Never did you refuse entry to a gang of family, a wayward brother and his wife about to add a recently born child into their family, a group of family after a funeral, a college student, a teacher from a Dietrich, a law student, a visitor from Seattle.

You were always busy. Family, travel with Logan, work on lots of Charity things. You did the Cross Word, balanced the books, kept track of the important things in the world. You were a very ardent republican but those of us from the other side loved you anyway. You remembered everyone, loved to throw a party, a shower for a niece from Seattle. You were simply warm and gracious.

There were very big disappointments in your life but you "soldiered" on. You saw the big picture but could focus on the little important things. You did much for everyone but when an act of kindness came your way, you never forgot it.

You will have taken a lot with you. Lots of family stories, history, good old gossip. You have taken a big part of Logan's heart and soul and much of his memory. He is not very happy that you have left but he knew you needed to go.

We made it just in the nick of time to see you. I hope you knew we were there. I realized at the visit you were beyond our reach so we will reach out to Logan now. I dispatched Dad and Mom to visit. I think that was good.

Mary-Elizabeth cried when we left. Her visit to you was hard and maybe I should not have taken her. I thing that we have to teach the lessons that death is not a bad thing. It is not a fun thing for those that are left but it is not a bad thing when it is time.

It was time. Thank-you for waiting for us to stop by and say hello before your journey ended.

Concrete Proof

In 2004, Mary-Elizabeth and Whitney were about to sign-up to begin rowing. Mary-Elizabeth never was able to start. Mary-Elizabeth has visited and watched and supported Whitney on occasion. She took a rowing camp, went to crew one day a week and then two or three and then 4 days a week. She has been very reluctant to row in a race.. She did not feel strong enough to do a 2K or even a 1.5 k race. She felt she would let down her team. She did not trust her body. She did not feel like she could face the disappointment. She would get all geared up and then..... a cold that lingered or a set of hip flexers that would disagree with the entire process. Little steps forward, big steps back.

A couple of months ago she started to question why she was rowing, was something she wanted to do or something that she was doing for me. If it was so important why was I not more involved... How would she be able to do all her homework and row next year. What if.....

Well I had a hissy fit earlier this spring and told her she had to row in at least one race. It was time to get off the fence and commit no matter what hurt or the blisters or her lungs or the fact she was not 100% recovered from __________ fill in the blank, PMS, finals, watching too many Lucy shows. Any way she was ready to do it.

She worked and was on the team and in a boat and doing well and then Belle and Karen left a little cold. Started out just feeling funky, then very tired and then a cough and then and then and then. So she was out of the boat. Her coach was less than pleased but then they see lots of potential in M-E they see how hard she works and how much she wants to succeed. She works well with other and does lots of things.

Well she didn't row at Brentwood in Canada. (I had a great time and tried local bread and cheese and bought wine from the Cowichen Tribe.) She was determined to row in Regionals in Vancouver Washington. So, lots of rest, vitamins, good meals and lots of prayer.

Off she went on the bus to Vancouver. I followed the next day. She did not row until day three but hung out, became more nervous. Fretted and worried and kvetched and did home work. It was "oh my god" hot. 105 in the shade. Then Sunday came.

I was up and out the door by 7:00 am and there was no coffee but room coffee. I arrived and helped with breakfast and other things and then we waited. Boat after boat launches. Noisy Holy Names cheering happening, boats coming down the course and the I hear the they "hot seated" No endless cheers for them. They entered the boat just as the previous group ended their race. They were off and we had nothing to do but wait.

It takes about 40 minutes from launch to start. Everyone was lined up, they headed down the course. They are more than 2000 meters away and it is hard to tell they have even started, let along what lane they are in, so where they are does not seem to even matter at that point. All you can see is a glitter and flash.

As we they were coming down the course, I was standing with a couple of more experienced mothers. I was telling them that this was M-E's first race and that she just didn't want to be last. I learned from a very small, cross wearing, medal (at least one of Our Lady of Guadalupe) that the correct term was DFL. Dead F((((( Last. .

As we watched and cheered and prayed it became very clear that they were not going to be last and then that they were going to place. I held my breath as she and her team came in third. I didn't know that a medal came with it. One of the mother's was very worried about whether or not there would be a medal. I told her I was just glad that they were not last. I later found out the her daughter was a child that really needed this sort of validation. She was very bright but did not do well socially but was determined to stick to crew. M-E had been in a boat of juniors that had never won a race. They had struggled but stuck to it.

As we drove home I asked her about the experience. She told me she had never felt anything like the adrenalin rush at the start of the race.

"Mom, I found a great use for anxiety and adrenalin."

I Am Done with being a Leukemia Mom but we are not quite finished.

Yeah, here we are in March 2008. Silly time for a post. Well sometimes post just have to happen. I guess we are both sick to death of living in this world. We found out last week that we still have lots of left over baggage.

Life has been good. Trips to Mexico with Dad, Mom's new hip is settling in..... She is still receiving straight A's at Holy Names. The flowers are up, some gardening is happening. The dogs are good. The Sibs and Parental Units are great. Mary-Elizabeth does not seem too interested in driving... What more could we ask for???

Well, lest we forget, we were drug back to scary world for a few hours. Wednesday afternoon about 2:15 p.m. I was in a mediation. I was interrupted by a call from M-E. She was crying and in pain. She told me her stomach hurt more than ever and she had hives everywhere. I said I was on my way.

I ditched the mean people that were never going to settle and headed to the car. I tried to call Sister Dorthy but she was on the phone. Little did I know she was on the phone with 911. By the time I arrived there were two ambulances and school was letting out. The ambulances were clogging traffic and I parked in a sacred "No Parking Zone." I was immediately accosted by a the parking police who backed down when I explained the ambulances were my daughters fault.

I snuck in the back, looked for a second for the elevator and then headed up three flights of stairs. I found Sister Dorothy and my scared and sick child. She was in the presence of four cute EMT's. Her tongue had swollen and she was crying and itchy and just miserable. I intervened, and let then know that IV Benedryle was probably not the best choice and convinced them I could transport her to the hospital as well as they could. No IV, No ride in the ambulance.

I had been in contact with the Hem/Onc clinic and they were not about to let us come in. I was not worried about the stomach ache and wanted a blood draw to see if I should become a real basket case. Evidently they don' see everything as being caused by chemo and cancer like I do.

We went to emergency. They got us right in and gave her some more drugs and some Hydorzine, another form of Benedryle. They also gave some of my least favorite steroid, Dexemethozone.
She dosed, I worried, they poked and we were finally able to go home. She cried and slept and I worried.

It was clearly an allergic reaction to something. What?
we don't know. Will it come back? Maybe. Was it a fluke? Could be.

One thing we know for sure, the histamine part of her immune system is back with vengeance.

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."

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.

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.

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).

End of Treatment Pictures

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.

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.

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.

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.

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.

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.

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.

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....

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.

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..........

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.......

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.

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.................................

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.........

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.

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.

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.

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

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..................

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.

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....................

Spring Pictures