Sunday, July 31, 2005

A welcomed time away.




Well, we are back. We are exhausted. We are refreshed. It was not the same but it was a step back, a small step. We ate food that was good and therefore bad for us. We slept, we thought about quilting, we looked at shops, went to church, and farmer's markets and quilt stores and thrift shops and had great times . Pictures say it all.

Friday, July 29, 2005

Day Two

Lots to do before we leave for Whidby. I am sure that if we don't take the kitchen sink it will be a bust. I do have to pack another sewing machine. Oh have to go. Nice to be out of Seattle jail. Wish us luck.

Thursday, July 28, 2005

Day One, not Day Zero



Looks like we made

it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Can you believe it. These pictures were taken less than 5 hours after a dose of Vincristine and Methotrexate into her spine. I guess it part of that wonderful 13, I can handle anything attitude.

1:30 p.m. today were were officially in the Maintenance program. More about that later.

It is a huge step and an important mile stone. We are a third of the way done.

I now know what we "should" be doing for the next 12 weeks. It is a great feeling. It has been a very long year. Lots of prayers of Thanksgiving were said today.

Speaking of Thanksgiving, I may have to cook a turkey and have that sandwich I missed in November. ( See I am scattered as ever. How refreshing.)

Wednesday, July 27, 2005

The Bad Guy is really REally REALLY dead



Well, she had her numbers drawn. She is up to 1300 and tomorrow she starts her first of many Mainenance phases. I guess it was the shrimp pasta I made last night. I am not sure what it is that made her ANC double in three days but I am glad we are able to begin. I know what the program will be for the next 12 weeks.

I found a picture of M-E in Venice the last time. We will have many more soon. I also want everyone to know that I managed to send some photos to Walmart and have mom pick them up. See I am not a complete dork. I will have to post the Venice picture later because I cannot figure out where it is right now. ( See I did it.) Oh, mom did pick up her pictures and she was impressed.

Shifting Sands


She has been very quiet and tired the last couple of days. It finally came out last night. She is worried. She does not know how the oral meds are going to affect her. She is anxious and concerned and has been in that very quiet contemplative place.

It made me feel much better, yes her quiet suffering made me feel better. I have faith I can take some actions and do something to help her feel better emotionally. I was worried she had something physically wrong with her. I have little faith I can help that sort of ailment. Her physical complications are so very beyond tylenol and chicken soup. I look forward to the day when we are again cavalier about illness. When it does not mean "life and death"

We are being bad and going to Whidbey Island this week-end. Some quilting, some shopping and some much needed time away. I would not call it a breaking of the rules, more a bending of the protocol. We are so close to maintenance and we might be there. We will know latter today. I want to have more from this summer than pictures of my garden.

This journey is almost over, I feel like we are in a bad movie where they keep playing with the ending and keep showing it to you and everytime you think it is over, something unexpected happens. I have come to expect lots of things from this process. I just hope it is not Glenn Close sitting up from the bath tub.

I have finished Harry Potter and we are taking votes on who believes the person that died is going to stay dead. I think not.

Tuesday, July 26, 2005

Limbo


It is such a bad place to be. I think it is mean of the Catholic Church to send babies there. It is one of the things I don't choose to believe. I have a list of things I just don't believe but I think that since I have been give free will that God will forgive me. I am crazy about Mary and good works and forgiving those that "trespass against us" even though I don't want to be and I am mostly a nice person. I should re-think that nice person thing given we are in LIMBO.

So tomorrow she has a blood draw in search of those missing ANCs and an ultra sound to check out her port and her veins to make sure there are not arrant clots sticking around. I don't believe she ever had a clot but then I am just the Mom.

The one sitting and worrying. It sort of goes like this.

"Sure, no problem. She has great counts. We are on track, we have made 11.5 months and are only two weeks behind. We can hurry and catch up.
Oh, she has how many platelets? but no ANC, how can that be? What does that mean, what do you mean she has 1100 White blood cells but only 610 are neutrophils, does that mean she has more bad one's than "we feel comfortable with" should I worry, do we have need for more tests...... worry worry, more chocolate needed soon......."

So we wait in limbo for some movement. I feel like I am approaching the very tippy top of the roller coaster and we just don't seem to make it to the top but once we do it will be a great ride.

Monday, July 25, 2005

I found a picture of LOkemia cells.



I have seen the enemy and they are purple blobs. I guess as I look at the picture, they are pretty big and purple. I will have to obtain more in formation. I think I can identify the red blood cells they have the little donut holes. the rest are a mystery.

The black and white photo is what normal blood looks like. One big guyk floating around. M-E's would have looked like the one above. Lots of big guys.



Should I be worried about a spell checker that does not recognize Donut or the work Blog?

Nope

No, try again. 610 on ANC means, you are not in maintenance. Go home, do not pass go, sorry you are wrong, bye, we will see you later this week, if the numbers improve.

The Sun is up. I have had one cup of Coffee.

Perfect summer morning. Quiet, cool. Big knot in my stomach. I am sure the coffee will sooth it. Great coffee from Cousin Jack. Someday I will learn to put the lid on the coffee pot correctly.

Yellow, for Lance. I do not normally read books ghost written by other's. Oh, let's be honest, I don't read sports books. Okay, I said it. I did read EVERY SECOND COUNTS. It was excellent. I learned a lot about the Tour de France and about him. I read it before we were dealing with cancer. After watching M-E go through a year of cancer treatment, I am more than impressed.

WE ARE PLANNING TO COME FROM THE HOSPITAL IN A NEW PHASE, MAINTENANCE.

Sunday, July 24, 2005

Tomorrow is a big Day

Ware waiting for the answer tomorrowl..
I guess Webdings are not a great font. I guess it could be sort of fun. I could do a whole blog in code.

It is a perfect day. Not too hot, not to cold. We found parking at U Village and at Owegimia( sp). We were able to find everything we wanted and no one was on the freeway. I am thinking that the Virgin Mary might be in my living room tomorrow. She has been here all along but I could use a more coporeal version for a while. I have a few questions. I am willing to listen but I might be a pretty difficult person to deal with at this point in time.

Tomorrow we have some tests. Pretty pedestrian but very, very important. We will be seeing if we can start maintenance. It means a lot. We are let loose from the One Hour limit. Our trips to the hospital are fewer ( we hope). M-E has to take on the challenge of daily oral chemo. Lots of doses. We hope they do nothing more than make her a bit tired. Her hair will come back and she will begin taking steps toward health. She will be able to do some normal kinds of things like going to camp.

I am ready for normal. I wish I could report that I did not have the little worry demon sitting on my shoulder. I am worried.

When we started this process we were told that she had a 75% chance of a cure. The flip side is that she has 25% chance of a relapse. The relapse,if it happens, is more apt to happen in the first 6 months. I am not a worrier by nature but I am going to be a bit tense. Many say "don't worry", "Don't think about it". "It won't happen to her" Being the practical person that I am, I thing about all the possibilites. I do think positive but I have to be ready if it does happen I am ready. I am equally ready to accept her return to health. I want to have life that does not revolve around illness and danger and uncertainty.

We are ready for the beginning of the next phase of this journey. One way or the other we will be ready no matter what appears in our pathh

We Stepped Back in Time and It was Refreshing






I love weddings. I have not gone to many in the past few years but they can be wonderful. M-E has not been to many. She has been in one as a flower girl. It is true she did put the trunk of a small stuffed elephant in her nose just as the most formal picture was taken. ( I have the picture.)

We attended the wedding of Whitney's last single uncle. Michael and Chantal were married in Federal Way. It was like stepping back in time. First I had to do a seach for Federal Way, I needed to be pre-medicated in order to travel there. Malls, big trucks, unreal amounts of traffic, We made it with only one or ten panic attacks. I have fears of being lost in the burbs and not being able to get back to my current reality. Okay, enough of that reliving of real and/or imagined fears.

We went to the wedding, big church, beautiful bright flowers, not a million, but the kind of flowers that make you look at them. Simple, 4 bride's maids and the ever bored grooms man ( What do they do?) Traditional ceremony (no obeying with be going on). Sweet, the bride and Whitney were not happy with their shoes, they hurt their feet. (Nice white orthopedic shoes are never inapproiate under long white dresses.)

Social Hall reception. Flowers from the church were carried over and the Church ladies did the food and drinks. We love catholic wedding receptions. God meant for wine to be consumed in his facilities. Chicken, salad, cake, good Champagne. Kareoke, lots of time for the bride to talk with everyone. Kids on the dance floor, no pressure. It was wonderful. I imagine that it was my parents Hailey Idaho wedding with tea bag and bubble favors. A good time was had by all.

I am glad that M-E saw this wedding. It will always be the standard for her. No million dollar buffet, no extravagant table settings. It was what a wedding is supposed to be. People gathering to share a special moment. Not the event of the century ( Wedding Planner).

Saturday, July 23, 2005

Problems with the Educational System

I know that no one has ever heard me complain about anything but sometimes I do let out a squeak or two.

THE EDUCATION SYSTEM HAS FAILED MY DAUGHTER.

As you know, M-E has been spending a fair amount of time watching a variety of old television shows and movies from her part of the NetFlix account. She recently began watching Smalleville. It is the lost, growing up years of Clark Kent. Well I was watching with her one day and there were shiny green particles and I said " I don't remember the Kryptonite was so bright!". She inquired what it was and I began to tell her what it was and how it make Superman sick. She accused me of ruining the show for her. I again commented on X-Ray vision and she had the same response. I kept saying things like Oh, there is Lex Luther.

I realized my child does not know about Superman!! Where have I gone wrong? I think that might be akin to someone from England not knowing about Shakespeare! but only Harry Potter.

Does she need to know about Superman to be a healthy well ajusted citizen of this world? Who knows. If anyone any ideas how to catch her up on this stuff, let me know. I am at a loss. I am sure my first idea of collecting all the comics for her reading pleasure is not the best idea. We might start with the movies since the old TV show is not available at this time.

Perhaps I am beginning to realize I am from the "Good Old Days."




Friday, July 22, 2005

SAND BOXES


We have a new park. It was built by community effort and is a wonderful gathering place. Granted the chess pieces are not next to the chess board but then we don't have a crack house with a nice pit bull that haunts the house.

As part of the design there is a wonderful sandbox that has children's tiles and whimsical things all around and in it. But it is a sand box. Many of the neighbors pointed out that we had lots of cats in that found it a very nice place to "go".

It started me thinking about all the sandboxes we had as children. I am sure we had cats that liked to "go". I don't remember ever finding surprises or tasting anything that was not pleasant when I ate sand. Yes, I was a blatant sand-eater. I don't think I suffered from that experience or the gritty consumption. My dad has always said that the problem with children these days is that don't eat enough dirt.

The rain comes and never puddles washes and renews the sand, much like it does the world. Little paths and castles are reduced to gentle mounds and the harder rain leaves little impressions. Impressions not unlike the great impressions left by the large craters in the Arizona desert. Sand is so unstable and so malleable. Each time we visit the sandbox we never know what new world will be created and then destroyed by the next child or the next rain storm.

As much as I would like to think our world were different than the sand box, I don't think it is. There some unpleasant comings and goings. Things are not very stable nor lasting. There are storms and unpleasant destructions that are always changing the landscape. It looks different from one day to the next. The best we can hope for is some restorative rain and a great place to gather.

Thursday, July 21, 2005

Lots of people have been asking about M-E disease. Here is a Primer.

Acute Lymphocytic Leukemia

Causes and Risk Factors Subtypes of Acute Lymphocytic Leukemia Symptoms and Signs Approach to Diagnosis

About 3,830 new cases of acute lymphocytic leukemia (ALL) are diagnosed each year in the United States. It is the most common type of leukemia under the age of 19. Children are most likely to develop the disease, but it can occur at any age. Acute lymphocytic leukemia may be called by several names, including acute lymphoid leukemia and acute lymphoblastic leukemia. ALL results from an acquired (not inherited) genetic injury to the DNA of a single cell in the bone marrow. The disease is often referred to as acute lymphoblastic leukemia because the leukemic cell that replaces the normal marrow is the (leukemic) lymphoblast. The effects are: 1) the uncontrolled and exaggerated growth and accumulation of cells called "lymphoblasts" or "leukemic blasts," which fail to function as normal blood cells and 2) the blockade of the production of normal marrow cells, leading to a deficiency of red cells (anemia), platelets (thrombocytopenia), and normal white cells (especially neutrophils, i.e., neutropenia) in the blood.
Causes and Risk Factors In most cases, the cause of acute lymphocytic leukemia is not evident. Few factors have been associated with an increased risk of developing the disease. Exposure to high doses of irradiation, as carefully studied in the Japanese survivors of atomic bomb detonations, is one such factor. Unlike other forms of leukemia, acute lymphocytic leukemia occurs at different rates in different locations. There are higher leukemia rates in more developed countries and in higher socioeconomic groups.

The current causes of acute lymphoblastic leukemia in children or adults are not known. Scientists continue to explore possible relationships with life-style or environmental factors but no firm conclusions have yet been reached. Given the amount of study, this suggests that multifaceted complex factors may be involved. It is extremely disconcerting to patients and their families to wonder what they may have done differently to avoid the disease. Unfortunately, at the present time there is no known way to prevent the disease. Acute lymphocytic leukemia occurs most often in the first decade of life but increases in frequency again in older individuals.

Subtypes of Acute Lymphocytic Leukemia Acute lymphocytic leukemia can develop from primitive lymphocytes that are in various stages of development. The principal subtypes are uncovered by special tests on the leukemic lymphoblasts called "immunophenotyping." Phenotype is the physical characteristics of the cells and these are measured using immune tools. The subclassification of cell types is important since it helps to determine the best treatment to apply in each type of leukemia. The principle subtypes are T lymphocyte and B lymphocyte types, so named because the cell has features that are similar to normal T or B lymphocytes. In addition, the B cell type can be divided into a precursor B cell type, as well. Once these features are determined the term used may be acute T lymphoblastic leukemia or acute precursor (or pre) B cell lymphoblastic leukemia. Other markers on the lymphoblasts that can be detected with immunophenotyping and may be useful to the physician include the common acute lymphoblastic leukemia antigen, cALLa, now called CD 10.

Immunophenotypes B lymphocytic lineage subtypes. These cases are identified by finding cell surface markers on the leukemic blast cells that are identical to those that develop on normal B lymphocytes. About 85 percent of cases are of the precursor B or B cell subtype. T lymphocytic lineage subtypes. These cases are identified by finding cell surface markers on the leukemic blast cells that are identical to those that develop in normal T lymphocytes. About 15 percent of cases are of the T cell subtype. Chromosome Abnormalities Injury to chromosomes can be assessed by cytogenetic methods, and the specific alteration in chromosomes also aids in subclassifying acute lymphocytic leukemia. For example, a change in chromosome number 22, referred to as the Philadelphia or Ph chromosome, which occurs in a small percentage of children and a larger percentage of adults with acute lymphocytic leukemia, places the patient in a highter risk category. Thus, the approach to therapy would be intensified in those subsets of patients.Table 1. Subtypes of Acute Lymphocytic Leukemia.

Symptoms and Signs Most patients feel a loss of well-being. They tire more easily and may feel short of breath when physically active. They may have a pale complexion from anemia. Signs of bleeding because of a very low platelet count may be noticed. These include black-and-blue marks occurring for no reason or because of a minor injury, the appearance of pinhead-sized, red spots under the skin, called petechiae, or prolonged bleeding from minor cuts. Discomfort in the bones and joints may occur. Fever in the absence of an obvious cause is common. Leukemic lymphoblasts may accumulate in the lymphatic system, and the lymph nodes can become enlarged. The leukemia cells can also collect on the lining of the brain and spinal cord and lead to headache or vomiting.

To diagnose the disease, the blood and marrow cells must be examined. In addition to low red cell and platelet counts, examination of the stained (dyed) blood cells with a light microscope will usually show the presence of leukemic blast cells. This is confirmed by examination of the marrow which almost always shows leukemia cells. The blood and/or marrow cells are also used for studies of the number and shape of chromosomes (cytogenetic examination), immunophenotyping, and other special studies, if required.
Blood and bone marrow samples are used to diagnose and classify the disease. The following tests are used in the further classification of the disease. Examination of leukemic cells by cytogenetic techniques permits identification of chromosomes or gene abnormalities in the cells. The immunophenotype and chromosome abnormalities in the leukemic cells are very important guides in determining the approach to treatment and the intensity of the drug combinations to be used.



Immunophenotyping This is a laboratory test that enable the physician to determine the type of disease that is present in the patient. It uses the antigens (proteins) on the cell surface and the antibodies produced by the body that match the antigen.
A method that uses the reaction of antibodies with cell antigens to determine a specific type of cell in a sample of blood cells, marrow cells, or lymph node cells. The antibodies react with specific antigens on the cell. A tag is attached to an antibody so that it can be detected. The tag can be identified by the laboratory equipment used for the test. As cells carrying their array of antigens are tagged with specific antibodies they can be identified; for example, myelogenous leukemic cells can be distinguished from lymphocytic leukemic cells. Normal lymphocytes may be distinguished from leukemic lymphocytes. This method also helps to subclassify cell types, which may, in turn, help to decide on the best treatment to apply in that type of leukemia or lymphoma. The antigen on a cell is referred to as cluster of differentiation or "CD" with an associated number. For example, CD7 and 19 may be present on leukemic lymphoblasts and CD13 and 33 on leukemic myeloblasts.



Cytogenetic Examination Cytogenetic examination of tissue is the process of analyzing the number and shape of the chromosomes of cells. The individual, who prepares, examines and interprets the number and shape of chromosomes in cells is called a cytogeneticist. In addition to identifying chromosome alterations, the specific genes affected can be identified in some cases. These findings are very helpful in diagnosing specific types of leukemia and lymphoma, in determining treatment approaches, and in following the response to treatment.

Wednesday, July 20, 2005

Long Journeys




M-E listening and reading book five of the Harry Potter books. Book 6 is hiding and ready to be read. If you have read and finished book 6 please let me know. My sister wants to discuss it with someone and is not happy with our progress.
Tracy Henz, our Hem/Onc fellow. She is now a second year and not tied to much to the hospital. She went with us to the movie ( Her first one she has had time to see in Seattle) and to capital hill and to Red Robin. I wonder if she has been up the Space Needle.







We went to see the March of the penguins last night. It is playing in a theater here. What an amazing movie. What an amazining creature. We learned a lot about penguins but now have more questions. I guess that is life. The gist of it is they live in the water for 4 years before going to the breeding grounds as full adults. They make a trip from the ocean to the grounds which is 70 miles from the ocean.

They pair off, mate, the female produces the egg, passes it to the dad. She returns to the ocean to feed and bring food back for the hatched baby. She arrives (hopefully before the baby dies of starvation) and then he leaves to feed and bring food back. They make the journey several times to the ocean. Then one day, before the babys swim, both parents return to the sea and leave the baby's to fend for themselves. It was amazing to watch and worth the trip to capital hill.

Our journey has been as long but not nearly as cute and fluffy. In many ways it has been as rewarding. At times it has seemed as endless as those starving mothers walking 70 miles or more after two months inland. It has also been in company of good supportive friends, family and kind strangers.

M-E will ultimately be the abandoned chick. We will make sure she can swim first. She will be surrounded with her friends and her sister but at some point we adults have to leave on our own journey but we have lots of long summers and cold winters before that happens.


I want a baby penguin for Christmas.

Monday, July 18, 2005

WE are so close to the end of this last intense phase!!!!!!!!!!!!!!!!!!!!!!!


WE are so close. I can taste it. She recieved her last dose of Chemo for this stage today. Yes, a reason to celebrate.

Lots of drama though regarding the blood transfusion of the 17th. As you know, Lori came to help with that process. M-E's numbers were dropping but in a very slow fashion. I was supposed to take her back for a re-check on Saturday. Being the medical expert that I have become, I decided to not do that. Remember, I was in medical school at age 5.

I let M-E go to Whitney's birthday. Around 9:30 a.m. I called the fellow on call at children's and tried to convince him we should just have a nice week-end. Well, being early July, I was connected to Scott. (Three new fellows started on July 1st, both men are named "Scott") He introduced himself to me. I guess I said out loud "oh your one of the new fellows, you are going to make me follow the rules." Well don't forget, I never did receive the "Doctor as God" gene.

He is good. He used the "it might not be safe to wait" line. It will take some time to get these new guys under control. Anyway, I finally took her. Her number came back and she had a Hematocrit of 20.2. They ordered the blood for Sunday. No need for platelets, they were on the way back up.

So Sunday, I rouse a very sleepy and angry child from her slumber, and we headed to the hospital. All was routine, she was pre-medicated with benedrly and tylenol, she had her own covers and her pillow. The floor was slow so we were in a room by ourselves. and then the dripping begins. 3 units, 4-5 hours. She slept through bags 1 and 2 and most of 3.

Alison brought us some lunch around 2 p.m. She did not have an easy time, there was a fire alarm, we were not really checked in, the doors were closed , the elevators were not working, the usual...... Alison walked in and noticed that M-E was wheezing a bit. M-E complained that she was a bit itchy, I told her to get over it. We began to eat. Then it all went to hell. Big hives, large red, much sought after lips, major wheezing and lots of doctors and nurses. Lots of large doses of medication, IV, and lots of nervous people.

M-E had a hystimine huge reaction to the blood. Needless to say, with all the benydryl they gave her, she slept most of the rest of the day. Theory is that her body did not like the left over white blood cells in the last bag. Most people that are tranfused have an instant problem. She decided to wait until we were not watching. Or more importantly, I was not paying attention. She is carefully watched by those that know better during the entire process. They are much smarter than I. The doctor was waiting for her tranfusion to finish before she went home. ( I guess I missed that class when I was 5.)

After all that we have been through, would you have called the nurse about a small itchy spot or a cough? Well I will next time.

It was scary for M-E. She did not like her throat closing and her air ways getting restricted. She did not like the medications in large, but helpful doses. She knows that when there are 4 nurses and doctors all fussing around, there is a seriouis problem.

I must say that it was a good reminder, This is not over yet.

Sunday, July 17, 2005

Good Friends and Good times



I wanted to direct you to the picture of Lori and me at the ball game. She came from Boise to help with Mary-E. She had a ticket and then Mary-Elizabeth did not start as planned. She came to take care of her and be on hand for the expected blood transfusion. She took M-E to the hospital but her counts were not low, as expected so she ended up going to see Charlie and the Chocolate Factory. Mary-Elizabeth refused to submit to leeches to drop her counts so it was scary Johnny Depp as Carol Burnett\Michael Jackson for her.

All went well. They both ended up liking the movie. I have heard, I am expected to take M-E again.

M-E had a sleep over so Lori and I were free to raise Cain. We choose a Mariner's game. We did not go to see the Mariners but rather Baltimore. It was sort of sad. I can bet better than most of the home team. We were able to witness Palmaro make his 3000th hit. It was lots of fun to see the crowd and his team. We gave him the honor that was due. I felt a bit sorry for him in that he was not in his home stadium. It was still an honor to watch that bit of history.

We were home by 10:30 and no one thought it was necessary to go to buy a midnight copy of Harry Potter. Mom and Austin went to Walmart at midnight. Austin was pretty excited. M-E never finished the 5th book so she won't let me read 6 until we read 5. I know where she hid the copies. Would it be bad if I took the book out, put a different cover on it and then replaced it later. BAD MOMMY, BAD MOMMY.

Saturday, July 16, 2005

I think I may have to read a book by EL Doctorow

An essay by E.L Doctorow

I fault this president (George W. Bush) for not knowing what death is. He does not suffer the death of our twenty-one year olds who wanted to be what they could be. On the eve of D-day in 1944 General Eisenhower prayed to God for the lives of the young soldiers he knew were going to die. He knew what death was. Even in a justifiable war, a war not of choice but of necessity, a war ofsurvival, the cost was almost more than Eisenhower could bear.

But this president does not know what death is. He hasn't the mind for it. You see him joking with the press, peering under the table for the WMDs he can't seem to find, you see him at rallies strutting up to the stage in shirt sleeves to the roar of the carefully screened crowd, smiling and waving, triumphal, a he-man. He does not mourn. He doesn't understand why he should mourn. He is satisfied during the course of a speech written for him to look solemn for a moment and speak of the brave young Americans who made the ultimate sacrifice for their country. But you study him, you look into his eyes and know he dissembles an emotion which he does not feel in the depths of his being because he has no capacity for it. He does not feel a personal responsibility for the thousand dead young men and women who wanted be what they could be. They come to his desk not as youngsters with mothers and fathers or wives and children who will suffer to the end of their days a terribly torn fabric of familial relationships and the inconsolable remembrance of aborted life.... They come to his desk as a political liability which is why the press is not permitted to photograph the arrival of their coffins from Iraq. How then can he mourn? To mourn is to express regret and he regrets nothing. He does not regret that his reason for going to war was, as he knew, unsubstantiated by the facts. He does not regret that his bungled plan for the war's aftermath has made of his mission-accomplished a disaster. He does not regret that rather than controlling terrorism his war in Iraq has licensed it. So he never mourns for the dead and crippled youngsters who have fought this war of his choice. He wanted to go to war and he did. He had not the mind to perceive the costs of war, or to listen to those who knew those costs. He did not understand that you do not go to war when it is one of the options, but when it is the only option; you go not because you want to but because you have to. This president knew it would be difficult for Americans not to cheer the overthrow of a foreign dictator. He knew that much. This president and his supporters would seem to have a mind for only one thing --- to take power,to remain in power, and to use that power for the sake of themselves and their friends. A war will do that as well as anything. You become a war time leader. The country gets behind you. Dissent becomes inappropriate. And so he does not drop to his knees, he is not contrite, he does not sit in the church with the grieving parents and wives and children.He is the President who does not feel. He does not feel for the families of the dead; he does not feel for the thirty five million of us who live in poverty; he does not feel for the forty percent who cannot afford health insurance; he does not feel for the miners whose lungs are turning black or for the working people he has deprived of the chance to work overtime at time-and-a-half to pay their bills --- it is amazing for how many people in this country this President does not feel. But he will dissemble feeling. He will say in all sincerity he is relieving the wealthiest one percent of the population of their tax burden for the sake of the rest of us, and that he is polluting the air we breathe for the sake of our economy, and that he is decreasing the safety regulations for coal mines to save the coal miners' jobs, and that he is depriving workers of their time-and-a- half benefits for overtime because this is actually away to honor them by raising them into the professional class. And this litany of lies he will versify with reverences for God and the flag and democracy, when just what he and his party are doing to our democracy is choking the life out of it. But there is one more terribly sad thing about all of this. I remember the millions of people here and around the world who marched against the war. It was extraordinary, that spontaneously aroused oversoul of alarm and protest that transcended national borders. Why did it happen? After all, this was not the only war anyone had ever seen coming. There are little wars all over the world most of the time. But the cry of protest was the appalled understanding of millions of peoplethat America was ceding its role as the last best hope of mankind. It was their perception that the classic archetype of democracy was morphing into a rogue nation. The greatest democratic republic in history was turning its back on the future, using its extraordinary power and standing not to advance the ideal of a concordance of civilizations but to endorse the kind of tribal combat that originated with the Neanderthals, a people, now extinct, who could imagine ensuring their survival by no other means than pre-emptive war. The president we get is the country we get. With each president the nation is conformed spiritually. He is the artificer of our malleable national soul. He proposes not only the laws but the kinds of lawlessness that govern our lives and invoke our responses. The people he appoints are cast in his image. The trouble they get into and get us into, is his characteristic trouble.Finally the media amplify his character into our moral weather report. He becomes the face of our sky, the conditions that prevail: How can we sustain ourselves as the United States of America given the stupid and ineffective war making, the constitutionally insensitive law giving, and the monarchal economics of this president? He cannot mourn but is a figure of such moral vacancy as to make us mourn for ourselves. E.L. Doctorow

Honoring important people.


We give a lot of lip service to "doing small acts of kindness" . I think the term has become a cliche in our society. In reality we are overwhelmed most of the time and feel helpless. With global warming, wars, disease, hunger and all the rest, it is hard to see that we can have any affect on the world around us. Today I have put the picture of Karyn Brundige with Mary-Elizabeth here for your viewing pleasure.

Karyn is our one constant in our treatment and has been with us 100%. She bends over backwards to make sure that our needs and some of our wants are met. She has given us so much of herself to us. I know that it is her job but she has done so much more for us than she will ever know.

Thanks Karyn.

Friday, July 15, 2005

What to Think, What to Think







M-E and Isabel during the June swim party.


Friday afternoon. I should be working but I have seemed to come to a grinding halt. As the intensive stages of treatment begin to fade into the background, I have the ability to reflect on our last year.

As of today, this blog is a year old. I have chattered away for 365 days. I have posted a huge amount of dribble but I have kept my sanity in the mean time. I think I have to take a bit of time off this week-end and see how it goes. This site is where I have put my thoughts and displayed my anger. I have whinnied and cried and laughed a bit along the way. I have worried and fretted and will continue to do so. I have spent time just babbling about nothing, much like today.

I know that there have been days of self pity and days of emoting. I know that some of it does not make sense. I also know that I could not have done this without the blog. I have externalized the grief and sadness and feelings of helplessness in a way that was safe and helpful to me. I continue to be surprised how little I change on the old entries. It is a good source by which to remember. I do have some gaps that need to be filled in about those early days in the hospital. But then maybe tell the story those days are not as necessary as I think.

I reflect back to a year ago. As I reread the blog and do some editing, I realized how much this was like a good mystery. Nothing turns out the way you expect. But clearly I am amazed we have made it to this juncture. 11 months of treatment......... 10 days from the start of maintenance, counts willing. One more dose of Vincristine on Monday and then we wait for 750 ANC and 75 platelet's. We expect to begin.

Wednesday, July 13, 2005

News and ambiguity.


OH, a year ago we were in a sea of ambiguity. We were at the doctor and hospital and various scanning places. We took reports from one place to another all the time. Our lives were in chaos. We were not sure what was going on or how to prepare and act. I felt like we were playing one of those games where you pound down the praire dog. Each time a new bit of information appeared, you had to react and then wait for the next bit. It was hell.

Immediately friends and family were offering assistance and advice. It is all so overwhelming that it is hard to grasp. Those offers were very supportive and helped in ways that were not intended. I did not hear the words and was not able to organize my thoughts enough to know what I needed. What did come through all the fog was the knowledge that I was loved and supported and not alone. That was what was important and so greatly valued.

We just received the news that one of M-E's friends is going through the "finding out what is wrong" phase. She has some symptoms that don't make lots of sense and they need to "take more tests." Lots of prayers for the parents that have to live waiting for news while living with painful ambiguity.

Notice I am ignoring the day. 11 months ago..............

Monday, July 11, 2005

Important Visits from Family




Tons of stuff to do yesterday but then that is every day. I always have great plans. I guess that is what makes it so much fun. Each time I make a long list of things to accomplish and I loose the list, I realize that being OCD is not my mental health issue.

Well the day was hijacked by Aunt Julia. She is 92 and she is a pistol. She spent the day and we had a great time. We chatted about family and the old days. She is an inspiration.

David flew in and was here for a few hours. We had a great dinner.

I shaved M-E's head and she looks great.

Here are some pictures.

WE did a the doctor today. Blood tests, one that required a real poke. She cried but then smiled as we left. Number are dropping. Just how far will be told by the tests on Thursday. Neuro Opthomologist tomorrow. Dr. May will look and see if the swollen optic nerves have resolved themselves.

One more day closer to Maintenance.

Sunday, July 10, 2005

Patience



Well we all know that is not my virture. I keep being reminded that I need to have more patience. M-E had her last dose of Ara-c on Friday. I would like us to just return to normal. She has two doses of Vincristine and then we are home free. On to maintence. I am going with the "It is a Cake Walk" scenario. See, I don't learn. It will not be easy.

We only have to go to the hospital two times a month. Once for treatment and then for a blood draw. They have to keep her ANC between 1500 and 2500 for the next 20 months. Evidently that is easier said than done. So there is a fair amount of oral chemo ajustment. She will be taking a big dose of Methotrexate each week and daily Mercraptipurin ( My personal spelling.) We will be at the hospital if she gets a fever. I guess this is more like Roller Ball.

I was up early yesterday morning and had this flash of normal life. I started to make the "M-E has to do" list. She was up and I was past three cups of coffee. I handed her the list and she melted. "Mom, I am too tired. I don't have the energy and if I see too many things I get too upset." followed by tears.

I guess we are not at normal yet. I was so ready to be done. We both are so ready to be done. It is time for me to take a deep breath and know we are not done. Her body is trying to recover from the chemo but she is loosing her red blood cells, which takes her energy with it. She lost another point on her Hematocrit and by Monday they will be planning her blood transfusion.

Breath, relax, be more patient, concentrate on low energy projects, expect little or nothing of M-E until her energy returns. Breath, we are not done yet. Hold her more, listen when she will talk. Make sure she is able to see her friends, order good movies for her to escape with. Go pick up Harry Potter at midnight on the 15th...........

Friday, July 08, 2005

Last Day for Ara-C


WE ARE SO GLAD........................

M-E is one happy happy girl. She does not know that next week she has to have a real blood draw. They have to re-evaluate whether or not she needs to continue her Lovenox shot. I am not going to mention it today.

It is time for all of this to end.

Thursday, July 07, 2005

Lots of 9-11's


We all have 9-11's. M-E's was Lukemia, Lisa Libassi lost her brother, London was blown to pieces this morning, thousands of soldiers are loosing their lives and limbs and their way of life.

There is a need for lots of prayer and reflection today. It is a good reminder that we should be happy for every day and moment we have with our loved ones.

The sun is shining, the coffee is good and Mary-E has only two more Ara-C treatments. See it is a great day.

Wednesday, July 06, 2005

Great Friends



Gifts come in lots of different sizes and shapes and packages. Some are small and appear to be insignificant at first. M-E was very so happy to be surrounded by people that have loved her and helped her through this process. She was ecstatic to be surrounded by her best friends. Laughter is so healing. Thanks again for all your love and support.

She was complaining a bit about feeling lousy and I reminded her of something I said 11 months ago.

We were sitting in the hospital, 48 hours after learning about her diagnosis, waiting for the first chemo treatment. I was holding her hand and said: " Remember how you feel right now. You feel healthy and strong and ready for this battle. You are onto to win this battle and you will feel this way again." She squeezed my hand and it began.

I reminded her we are so close to that place again.

Monday, July 04, 2005

It Was A Great Party


It was such a great Party.
She had such a great time.
Many Many Thanks to all that Helped and came and ate and made M-E feel loved and honored and very very normal.

Sunday, July 03, 2005

The 13th Birthday is almost Here

Well I used to replay the day of her birth through my head as the day progressed.

I will start by calling Lisa Alhadeff first thing in the morning. It will end with fireworks about 10:00 p.m. It used to be a day full of private reflection. I spend the day telling Mary-Elizabeth it is not her birthday YET. She gets mad because she is soon in bed after that moment.

Now my mind is replaying the last years events. The medical reports, the good news, the bad news, as we approach the day she was diagnosed, I keep second guessing myself on how we missed the clues, how we did not see the obvious. I have a picture of her from horse camp. She looked sick. Now I can see it. I did not want to see it then.

I received a bunch of bad news last year on her birthday from Thomas Kim. He is our friend that was at the U, a neuro radiologist. He tried to be positive, but he was very very upset and avoided me during the entire party. I knew that was bad.

Oh well. That was last year. We have come a long way.
Now we know what we are dealing with. I am hoping I can get back to that happy place.

Saturday, July 02, 2005

Pictures



M-E is feeling much better.

A day without Chemo is a great day.

Kelsy one of our favorite nurses. We love her but we don't ever want to see her again.

Friday, July 01, 2005

The Count down to Maintenance is almost complete.


I let myself think about it today as I drove back from Skagit County after a hearing.

Four More Ara-C
Two More Vincristine
9 More doses of Thiuguine

If all goes as planned, She should be done by the week of July 25th.

Someone said we were at the end of a Marathon. I think that is the wrong analogy.

I think we have to think of this as a Space Flight. Launch ( Intensive Treatment) takes a huge amount of energy to get into orbit. Once in orbit, you get to coast for a long lazy period while you do some experiments and observation. ( maintenance) You wait for re-entry, no effort required. ( Post- Treatment)

We are almost into Orbit. We are going to enjoy our time in Orbit.