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.

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.

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).

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."

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.

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.

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.

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.

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.

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.

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.

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

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.

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...........

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.

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.

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.

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.

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.

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.

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.

Four More Doses of Ara-C to go.

Sebla and M-E at the Westin over Spring Break (a happier time)

She is very tired and withdrawn right now. I feel like I have to be here for her but she does not want me to touch her or talk to her most of the time. She is withdrawn as she uses all her strength to get better.

She is watching Bewitched. The old television show. I am amazed at how it holds up. I never appreciated Aunt Claira's door nobs.

She has a few days off. She will rest and wait for her energy to return.

I have to go to Skagit County for an early hearing. Mom is here and so is Alison. Alex went home this morning. I have to be there early so I will get up, grab a coffee and scoot out of here.

M-E is at a place where she will let me leave in the mornings and she will still sleep. Her best time for sleep is from about 6:00 am to 10:00 am. She sleeps like a rock. I feel better if she is able to sleep.

Days, I am counting the days to the end of this phase.

MEB's Birthday Party

M-E is going to take the plunge and be 13. We sent an E-Vite but then I am not very good at all of that. We are having a party from noon to 4 ish on the 4th. Come eat and relax and chat and enjoy the beginning of a great year.

We are setting up the grill and food and drinks will be here with cake of course. If you are so inclined bring something to drink or some favorite summer dish. Nothing is expected just a gathering of good friends.

Nity Gritty on our favorite Drug.

WE HAVE FINISHED THE LAST DOSE OF THIS FORM OF POISEN. As I read this, I am beginning to wonder why we gave it to her.

Brand name:
Cytoxan
Pronounced: sigh-TOKS-an Generic name: Cyclophosphamide





Why is this drug prescribed?
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Cytoxan, an anticancer drug, works by interfering with the growth of malignant cells. It may be used alone but is often given with other anticancer medications.
Cytoxan is used in the treatment of the following types of cancer: Breast cancer Leukemias (cancers affecting the white blood cells) Malignant lymphomas (Hodgkin's disease or cancer of the lymph nodes) Multiple myeloma (a malignant condition or cancer of the plasma cells) Advanced mycosis fungoides (cancer of the skin and lymph nodes) Neuroblastoma (a malignant tumor of the adrenal gland or sympathetic nervous system) Ovarian cancer (adenocarcinoma) Retinoblastoma (a malignant tumor of the retina)
In addition, Cytoxan may sometimes be given to children who have "minimal change" nephrotic syndrome (kidney damage resulting in loss of protein in the urine) and who have not responded well to treatment with steroid medications.

Most important fact about this drug
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Cytoxan may cause bladder damage, probably from toxic byproducts of the drug that are excreted in the urine. Potential problems include bladder infection with bleeding and fibrosis of the bladder.
While you are being treated with Cytoxan, drink 3 or 4 liters of fluid a day to help prevent bladder problems. The extra fluid will dilute your urine and make you urinate frequently, thus minimizing the Cytoxan byproducts' contact with your bladder.

How should you take this medication?
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Take Cytoxan exactly as prescribed. You will undergo frequent blood tests, and the doctor will adjust your dosage depending on your white blood cell count; a dosage reduction is necessary if the count drops below a certain level. You will also have frequent urine tests to check for blood in the urine, a sign of bladder damage.
Take Cytoxan on an empty stomach. If you have severe stomach upset, then you may take it with food.
If you are unable to swallow the tablet form, you may be given an oral solution made from the injectable form of Cytoxan and Aromatic Elixir. This solution should be used within 14 days.
---If you miss a dose...
Do not take the dose you missed. Go back to your regular schedule and contact your doctor. Do not take 2 doses at once.
---Storage instructions...
Store tablets at room temperature. Store the oral solution in the refrigerator.

What side effects may occur?
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Side effects cannot be anticipated. If any develop or change in intensity, inform your doctor immediately. Only your doctor can determine if it is safe for you to continue using Cytoxan.
One possible Cytoxan side effect is the development of a secondary cancer, typically of the bladder, lymph nodes, or bone marrow. A secondary cancer may occur up to several years after the drug is given.
Cytoxan can lower the activity of your immune system, making you more vulnerable to infection.
Noncancerous bladder problems may occur during Cytoxan therapy (see "Most important fact about this drug" section, above).
More common side effects may include: Loss of appetite, nausea and vomiting, temporary hair loss
Less common or rare side effects may include: Abdominal pain, anemia, bleeding, darkening of the skin and changes in fingernails, decreased sperm count, diarrhea, fever, infections, infertility, lung infections, missed menstrual periods, mouth sores, new tumor growth, other cancers, rash, severe allergic reaction, slow wound healing, yellowing of eyes and skin

Why should this drug not be prescribed?
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Do not take this medication if you have ever had an allergic reaction to it.
Also, tell your doctor if you have ever had an allergic reaction to another anticancer drug such as Alkeran, CeeNU, Emcyt, Leukeran, Myleran, or Zanosar.
In adults, Cytoxan should not be given for "minimal change" nephrotic syndrome or any other kidney disease.
Also, Cytoxan should not be given to anyone who is unable to produce normal blood cells because the bone marrow---where blood cells are made---is not functioning well.

Special warnings about this medication
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You are at increased risk for toxic side effects from Cytoxan if you have any of the following conditions: Blood disorder (low white blood cell or platelet count) Bone marrow tumors Kidney disorder Liver disorder Past anticancer therapy Past X-ray therapy

Possible food and drug interactions when taking this medication
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If Cytoxan is taken with certain other drugs, the effects of either could be increased, decreased, or altered. It is especially important to check with your doctor before combining Cytoxan with the following: Anticancer drugs such as Adriamycin Allopurinol (the gout medicine Zyloprim) Phenobarbital
If you take adrenal steroid hormones because you have had your adrenal glands removed, you are at increased risk for toxic effects from Cytoxan; your dosage of both the steroids and Cytoxan may need to be modified.

Special information if you are pregnant or breastfeeding
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If you are pregnant or plan to become pregnant, inform your doctor immediately. When taken during pregnancy, Cytoxan can cause defects in the unborn baby. Women taking Cytoxan should use effective contraception. Cytoxan does appear in breast milk. A new mother will need to choose between taking this drug and nursing her baby.

Recommended dosage
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ADULTS AND CHILDREN
Malignant Diseases Your doctor will tailor your dosage according to your condition and other drugs taken with Cytoxan.
The recommended oral dosage range is 1 to 5 milligrams per 2.2 pounds of body weight per day.
CHILDREN
"Minimal Change" Nephrotic Syndrome The recommended oral dosage is 2.5 to 3 milligrams per 2.2 pounds of body weight per day for a period of 60 to 90 days.

Overdosage
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Although there is no specific information on Cytoxan overdose, any medication taken in excess can have serious consequences. If you suspect an overdose of Cytoxan, seek medical attention immediately.

We have begun the last Phase.

Great numbers 4400. We were a go for Cytoxon. Admitted at 5:00 p.m. Fluids until 8:00 p.m. Zofran, Ara-C
8:30 p.m. Cytoxon
9:30 p.m Lasix
12:30 a.m. Much needed sleep.

8:30 a.m Zofran
9:00 am. Ara-C
11:00 Spinal Tap Methrexate

2:30 p.m. Home in bed, sleeping.

What a relief. No matter how bad her number are, we keep going.

As the cytoxon dripped, her color and vitality waned. I know it will come back. We have been here before, we will not be here again. That is my prayer.

Two weeks of oral chemo, 6 more doses of Ara-C and then we wait for tranfusions to begin and that is okay. We are so far in this process.

I will try to work a bit. Celebrate a bit and pray more than ever. Our "R" word for the day is RECOVERY.

We hope WE start

We hope to start today.

That is all I have to say.

We go we wait and we pray.

Oh, maybe I will be a poet some day.

How does that sound, let's go out and play.

I logged in to add pictures because I can.

A week has passed

We are in the same spot today as a week-ago. Tomorrow we begin day 28, we hope. Once we start, we are on our way to the end. It is getting the"go" part of if that is hard. M-E is in a funky place. Jerry was not able to come yesterday and she was so looking forward to getting rid of her hair. It hurts right now as it falls out. It is everywhere, I found some in the dog and cat's water. Bits of M-E. This is the last time.

She will go to the hospital bald tomorrow. It is a sign that she is progressing in the treatment. The drugs are doing their job.

We are ready. Bags packed. Mom will be here today. Johnny is making salsa. The world is in a good place.

Going, Going, Gone............................................

The hair is leaving again. Really really leaving again. But I think hair serves a very different purpose than we all think.

It was here at the beginning when I wanted to think that my child would not look like those other children. How could all that hair, hair that has never been off her head, leave. I had never seen her bare scalp. It is one of the white lies that I let myself believe. I didn't want to be shallow and it took a couple of days to even ask the question: "Will her hair really fall out?" They keep talking about how chemo therapy kills rapidly dividing cells. When the question was finally asked, the answer was "Yes. Yes, hair is a rapidly dividing cells".

My desire to cling to the long beautiful healthy locks only lasted about 5 days. And then M-E had a new room mate and we all looked at her and then there was a consensus that all the hair was going to be shaved by weeks-end. At no time was my child going to look like something out of a movie where the head is 99.99995 bald with a few straggling strands left. Reminders of a different time. Jerry was going to shave it. The staff told us to wait,that the it would take a while. It took almost three months for the full and final departure.

Our basic instinct was correct. Hair, massive amounts of hair, are a sign of health in children. If my child had hair there was not a real problem. The hair loss was dramatic but not rapid. It went a bit at a time, each strand that was found puts us one step closer to the reality of the situation. Each hair cut, to minimize the effect, was a step closer to embracing the truth of the situation. It all had to go. When it was leaving it was a sign of progress in the treatment. It did stay around long enough to protect her skin from the radiation and then it gave up the ghost and went silently. A step towards welcomed re-birth.

It then begin to return. It was so so soft. It was like a babies hair but no shine and a dull dead color. It was so soft and everyone wanted to touch it and just pet the soft soft strands. It reminded me of the covering of antler's in the spring. It was like a magnet. I think it comes in so people would give her the healing touch she needed. I stroked her head for hours. It was calming and very soothing for us both. Being receptive to kind touching is some thing we have all seemed to have lost. Even strangers like Garrison Keillor could not help themselves. The cat was very jelouse.

When her hair began to grow back, she began to feel more normal. Normal is good and she was ready for some normal times. People would look at her and they let themselves believe it was a life choice, and not a sign of a life and death stuggle. A sheik bit of Paris, a progressive mother or one that could not control the hair cuts any longer. It did not matter. The new hair did not scream LUKEMIA to everyone.

The new hair became longer and there were even bad hair moments, more like nano seconds. She would wake up in the morning and little bits would be sticking straight up. It was back! She loved it and joked about it and felt relieved.

Rumor had it that the hair would go again in the first and second Delayed Intensification (DI). She did not loose much during the first DI, she lost her eye brows and lashes but the hair pretty much stayed put. She then began to complain about the grow back pain. But she knew it meant she was getting her hair back.

No one was prepared for the massive loss during this second round of DI. It started about a week ago and it is fleeing the jurisdiction. I think that in a strong wind it would be gone. It is being shaved this week-end. Shiny bald and beautiful. I can touch it again.

She is doing okay right but is having a hard time as we are so close to the end. No sense of humor about any more delays. Everyone is ready for this to be over. I think the hair is leaving so people with treat her with a little bit more care. Her fragility is just under the surface and I wonder if it helps people understand and be more accepting of her. They don't ask too many questions and are more gentle in their interactions. She smiles and is so brave walking around with her balding head. Her very spirit is an inspiration. She is living with this thing, this unwanted visitor I still can not spell.

It will come back. By the time we go to Venice she will be back to sheik. When it comes in this time, it will do so to stay. Each rapidly dividing cell that is added on will be a cell will be healthy and there to stay for the duration.

I just hope it is red and curly.

June 21, 2004 to June 21 2005

2004 we went to Dr. May, Neuro Opthomologist. Never knew they existed. He confirmed, for the third and last time the optic nerve issue and added some vision loss. He scheduled us for a MRI and then said it was okay to send her to camp. As I sat in the waiting room and listened to the receptionist explain that it would take a month to see the Doctor, I knew we were not on a normal path. We were waiting for an 11:00 appointment on a Monday after having it made on Friday. Oh, well, I knew that we were not in good territory. Belle wanted to have a spinal tap to see what the pressure was. He did make me feel better in not wanting to rush her through that procedure.

2005: We are waiting, waiting for the bone marrow to start producing White Blood Cells. It is mad at us. It has learned that we don't like white blood cells so we are going to pretend to ignore it for awhile and trick it into making more so we can kill them again. M-E said it was like that game with gophers that pop up and you hit them on the head with a hammer. We have the hammer and we are watching and waiting. I told her we could develop a game for that purpose. The gophers could be all the different bad cells and the hammers could have names like vincristine, methotrexate Ara-C and things like that. Just an idea. Thankfully the market would be very small.

Could It Just Be Easy Once in Awhile?

Yesterday was wonderful. We had a great day, I did laundry and caught up on some much needed sewing. We were ready to pack and face the music.

First we took a detour to Redmond and went to see Garrison Keller and the Rhubarb Tour. It was a great evening, parking was easy, seats were great, 4th row back, good show. It lasted from 7:00 until 10:15. Then we were able to go to another place and meet him. There were about 100 people to start with and by the time he was signing things, there were about 35. M-E was bound to get his autograph. She had a book by Charles Shultz, "The Secret of Life" She thought that was the right choice for a book signing by one of her favorite people.

She waited her turn. A very tall gentlemen took the camera and could not get it to work. Garrison let her come back and stood behind her and looked at her hair and began to pet it and kept saying . "It is so soft". As he signed the book he looked at it and said," I have the Secret to Life in my hands and I am giving it back."

We headed home and she became very quiet and said "Mom, this night will make tomorrow easier."

We were up later than usual and went to breakfast. We headed to the hospital and had the required blood draw. We were ready. We were packed, we had a great parking place and a wagon.

Then the counts came. Tracy Hense, came in and said: "Well we won't be poisoning you today!" Her counts had dropped from 2650 to 220 in a week. She has not been this low since Thanksgiving. The Cytoxon and the Ara-C would do too much harm to her body and we would be in the hospital for a long time.

My Plea, Prayer, Complaint. (Your Choice)

Oh God, I have this all set. Lori is coming this week, Mom is coming the next two weeks so we are covered on the tranfusion week. We are so close, so very very close to the end of this hard treatment. We have to start this phase so we can be done. I really thing I have learned the lessons of this last year. I know I have no control over anything. I know that good comes from every situation. I know that you provide what we need. I know that waiting does not kill me and that I should be happy to have those moments to think about other things instead of being upset. If not for me, let this process be done. I am so tired of watching M-E struggle with this whole thing. She wants answers and I don't have them for her. I know, I have no control, I need to be here and now and take it one hour at a time.

Oh well. Tomorrow will come and go and we will get through this, but I am not very happy about it.

The Many Layers of Life

We are all pretending that to day is just a great sunny week-end day. I have had too much coffee, M-E slept in and is still in her jammies. I have done a bit of gardening and some puttering. I will do some shopping and some cleaning as if tomorrow is a normal day.

I am also making mental notes.
Make sure your hospital bag is packed.
Make sure you buy hospital food.
Don't forget to pack your pills and ditty bag.
Do we need the computer? only dial-up???? for one night.
Don't forget to write Alison some pet instructions.
Pack two books.
Figure out movies for the long night.

All of this is going on while we are pretending it is not happening. There is so much dread. I just hate it. I will just ignore it right now. I am going to go to the basement and finish a quilt and do laundry. Now that sounds normal.

We will do it, I know we will.

A year ago today.

We had fasting blood draws and an appointment with our regular doctor. He ruled out lukemia (Jokes on all of us. Had the lab looked at a slide they would have seen bad lymphoblasts but then her counts were normal and now with the medical industry the way it is.......) He ruled out diabetes, kidney and heart failure and all the other medical possibilities. We then went to see Steven Kim, Dr. "Well, it might not be a brain tumor." He was a retinal specialist. He sent us on to Dr. May,
a Neuro Opthomoligist.

That night about 8:30 our doctor called to see what had transpired. Getting a call from your primary care physician that late at night does not make you feel better about what you are facing.

It was a week-end of worry. Little did we know.

A Party

This is such a great age. There is drama and angst and self doubt as they prepare to really become teenagers. But most of all there is laughter. Deep, into your soul laughter. The kind that lifts everyone's spirits. Everyone had such a great, great time. They ate, oh god did they eat, all while discussing their current diets. They swam and dove and slid, they just hovered in a group in the pool and talked and laughed and giggled.

They opened presents and ate some more. I have no idea how late they would have been up last night had parents not arrived to force their children into the cars. A deep conversation began with three of the girls and it was hard to break up. I am sure the phones will be burning up this week-end.

Then they left and it was quiet. M-E just broke into tears. Don't get me wrong, she had a great great time. She was happy with everything but she was feeling the lose of her 7th grade year and the dread of the upcoming weeks. She was just sad. It comes out every now and then. She feels like she has to ask permission, which she doesn't, but I always give it anyway, and then she cried. She was tired and needed to get it out. It reminded me of when she was a tiny baby. I would give her to Johnny and tell him to make her cry so she would go to sleep. It always worked and it worked last night.

Laughter and tears are very closely related and we had a good dose of both. I wonder is she knew why I had wanted to cry last night?


Oh, in case anyone is wondering, Children of this generation do not sing Broadway Musicals or chant rap music, they sing Disney "Classics"

June 17 2005

One year ago today we found out something was wrong with M-E. We are having a celebration but not what you might think. I have not mentioned why I remember this day. I am going to keep this day deep in the crevice of my heart. We are having a party.

M-E is 5 days away from her last dose of Dexemethezone and has not chemo this week. She is feeling great. She announced she was going to have a kid birthday party. She told me that we would have it and she would organize it, make the calls, arrange for transportation of the kids and Ana would do the shopping. I was to arrange to provide cash. Seemed reasonable. She has executed.

10 girls from her class will arrive this evening between the hours of 5:00 and 5:30 p.m. Pizza Hut will deliver at 5:45 p.m. We leave for the pool at 6:45 p.m. Return at 8;15 p.m. for cheese cake.

I will let you know how it goes. This is a great age. Great group of girls and a nice way to start this week-end. We are not talking about Monday until Monday.

So wish me luck.

Month 10 is complete.

We ignored yesterday but as I looked at the clock, I realized that 10 months ago we were sitting in an emergency room, praying for a miracle to happen. Waiting for the blood counts to come back and be a mistake. We were hoping against hope that we were asleep and the nightmare would be over soon.

Well in many ways we are doing the same things right now. Praying every day, hoping for a miracle. Hoping this does not come back. We know that this is our nightmare. We don't have any choice but to march on through to the end. Next week is the Cytoxon over night with the 8 doses of Ara-C during two weeks and a spinal tap with a Methotrexate chaser and some Thioguine for 28 doses. They give her the Dexemethesone to get her body ready for the upcoming onslaught. It will take her two or three weeks to recover and then should have smooth sailing with just weekly Chemo.

That is our summer, in a nutshell. Boy, just wait until next summer. You won't be able to find me. We will check into Seattle for a once a month visit and that will be it. Who knows what it will be. I better start clearing my calendar. Now that sounds like a plan.

I do have to acknowledge the miracles that have happened. We have been blessed.

One is time with Grandma Mary. We would never had had so much time and she is such a special person. She brings our neighborhood to life. Lesson learned, you can never give someone enough jam. Small smiles are worth all the big gestures rolled together.

Another is the support of the St. Joseph's community. They did not miss a step. "Ask and you shall receive." It is not just a silly old bible verse. It has great power.

The endless help from friends, the dinners, the kind thoughts, the supportive e-mails, the gardening, the laundy faries, the phone calls I never return. It has been so much help.

The chance to really, really evaluate priorities. We all give that idea lip service and I think we all look at priorities but there is this sort of idea that we have forever to work things out. We only have this moment to savor. I think that is why we are such nuts with the photos. We are trying to capture the experience. The mind's eye is our best camcorders. Our noses have lots of power also.

Well we keep moving. On the treadmill, no way to stop, even if we are very smart. Dad tells a story about some research being done with pigs and treadmills. The were not able to stop but soon learned they could put their feet on the sides and not have to use the tread mill surface. The researchers made the sides slick so they could not escape the inevitable. We are on that treadmill. No escape, but it does finally slow down and we are in better shape for having been here.

Last day of School

We went, we prayed, we sang, we chatted with people, we looked at her report card. We were choked up when the last prayer was for Mary-Elizabeth. Mom and I both shed some tears and fought back the rest that wanted to come.

I know that prayer is powerful but to hear the prayers in person in front of the church full of people that know you or of you is a very different thing. I felt like I had been hit by a tsunami wave. Thousands of prayers have been said but this felt so different, so intiment. .

We have been physically gone from St. Joseph's school and church this year but we have been so much a part of the community. I realized how much I missed this year when I saw the 7th graders at the head of the church. They have grown so much since I last really looked at them, which was a year ago. Being away for a year has given me the opportunity to really see the changes. High heals, more hair on the boys, deeper voices, needs for real bras, they have transformed in such a short time. While we have been in Chemo World, the world has continued to spin and to change. It is strange on one hand but very comforting on another plain. The world will be there when we are ready and able to return.

I told one mother yesterday that if there was a year to miss, 7th was the best one. We have not had any 7th grade girl drama. ( They make movies about it.) No build up the the "What High school will I apply to?" angst. It has been a very easy year that way.

We have lived this very minimal life, no extra's, no distractions from the outside world.

I asked some questions about Maintenance. I was under the impression that we went to the hospital once a month, but then we know that I am never good at predicting schedules. The first 12 weeks goes like this: Hospital Chemo, oral chemo: Methotrexate once week, Mercatupurin every day for the entire 18 months, Prednisone ( five days only a month). On alternate weeks we go for evaluation to determine what her numbers are and they ajust her meds. They want to keep her ANC between 1500 and 2500. Our is between 5000 and 10,000.

I had hoped that this time would not one of imuno compromisation. It will be a good time no matter what. I guess we really are waiting for sushi.

Cheese Cake

She went to bed last night totally exhausted. We did a bout with bad dex induced heart burn about 1:00 a.m. A roll of Rolaides later, a pyramid of pillows and an hour and a half later sleep came again. Much needed restorative sleep.

I was up at the crack of dawn and out the door for a busy day. She slept late and woke up wanting to have dinner at the Cheese Cake Factory. She was able to go to the office with mom on the bus and then we went for dinner. She is back in bed. 4 good hours. Not bad. It is the little steps and the short moments.

I had a hearing in Snohomish County and as I was reentering down town a sea gull lost it's feather. It's action as it fell to ground was not what I had expected. It remained vertical in the air, the quill side pointed down. It then twirled and instead of going down to the ground in the predictable tornado type action, began to sort of slide sideways, almost like taking steps to the side and then down a bit. The feather traversed the entire intersection before it finally landed. No one appeared to notice.

It was a good visual lesson about our journey. It is not a journey in a particular direction but rather a jerky and unpredictable path on twirl at a time. The one thing that is certain is the eventual landing. We will get there. Where or when we land is another matter.