We are Close to ending Consolidation

Did you know that Christmas music is playing on the radio? I am up trying to update the blog and try to figure out how to handle the next few weeks. I am hoping life will enter a period of non events. I don't need "Christmas Pressure" Last year we were headed to Mexico about this time. We surprised Lupe and had a great time on the beach. This year we will be here and we are going to get it all out. All of what my mother affectionately refers to as my "Christmas Crap". As much as we all love Mother, she is the least sentimental person I know about Christmas except my friend Charles that makes Scrooge look like a Santa.

Well we are going to do it right. If I can find the lights that is. My boxes were in pretty good order and they have been re-arranged in such a way that I think we might have an "Oh, God where are the Baby Jesus's and why are they separated from their family" kind of Christmas.

I just don't know what to do but put up decorations. I can handle that part of the world. I am going to find the lights and the call will go out to see if we can get them put up. M-E loves outdoor lights and indoor lights more than anything. I know that lights are things we can enjoy. We will do a tree. Where it is going to go is a mystery because we have moved a table to the spot I work in the house which is were the tree goes but we will figure out something. I suggested we put the tree in front of the fireplace and duly chastised. Where w0uld we have a fire? Oh well. One step at a time.

Mary-Elizabeth is starting to feel better. One more dose of Vincristine and then we have a week off. We went to the hospital yesterday for a rare Saturday visit to see if she needed more platelet's. We had breakfast first. We had been up early and because Mom's train left at 7:30 am from Seattle. We were up at 5:30 am so we could make lots of coffee for the train. We went to the station and called poor Ruth at 7:05 a.m. and said in our very awake voices LET'S MEET AT THE HI SPOT FOR BREAKFAST" She hauled Whitney out of bed and we met in Madrona and found out that people in that part of town don't eat breakfast on Saturday until 8:00. Ruth went off for coffee and Whitney slept in the car. Mary-Elizabeth rejected my suggestion that she was leave the warm car and press her belly against the brick work so she could give herself a shot. Kids are so difficult these days.

We had a great breakfast. Good Company, Good coffee, good granola and green eggs and ham,Good Juice, huge plate of Mexican Potatoes. Mary-Elizabeth and Whitney and I headed to the hospital to see if she needed anything. We did not make it half way there before M-E asked my to pull over. Poor Whitney, she looked so sad as M-E left her very expensive breakfast at the Japanese Garden parking lot. It is such a helpless feeling.

We found that if you need new pajama bottoms, the sweet, sweet nurses will get them for you. If you wipe your leather shoes with alcohol wipes they are as good as new.

They took her blood and we played scrabble. We need some dictionaries. We came up with some good words but those Qs,Zs and Xs are always a problem. Why do they not come out of the bag until there are no letters left. We received some good news and were sent home without any thing having to be supplemented.

We tried to go to University Village but none of the parking prayers worked. You do know the parking prayer: "Hail Mary Full of Grace, Help me find a Parking Place." We know that all prayers are answered, sometimes the answer is "Go home your daughter needs to rest you silly silly person."

Orion is in the Morning Sky

We always were and always be "Come Look!!!!!" people. A bird, a wired rock formation, a beautiful leaf, a weird activity by a neighbor. Anything thing that is different or strange or out of the ordinary is subject to Lanham scrutiny.

I remember when I was a child I woke both parents up to see the Man in the Moon. It was a clear night and the moon had been shining with greater intensity than usual. I woke up, looked out the window and saw this bright Man in the Moon. More accurately he looked like a giant ginger bread man. I checked more than once but was just sure that Mom and Dad would want to see this great thing.

I did not have to scream "COME LOOK!!!!!!!!!!!" too loud in our little house to have them come running. They were the parents of a 4 year old you know and deep sleep was not something they were able to enjoy very often. I remember my dad looking out of the window and trying to assure me that the moon was beautiful, and full and indeed worthy of a middle of the night viewing. He was not able to see the same man I still was so vividly describing to him. Mom assured me that I had seen the Man but then it was now time to return to bed.

I have found over the years people don't really care about many of things I see. Varied Thrushes that only appear at the head of a storm while migrating through are not as exciting to others. The one lone humming bird that flys by is not a concern.

Mom has confirmed that Orion is out in the Southwestern sky. Winter is coming. He is there very faithfully on his winter jaunt.

Mom goes home today. I have to get her out the door. Mary-Elizabeth and I are going to the hospital for a bag or two of plateletts this Morning. Getting her up may be a trial. I think I will try the "Come Look, Orion is in the SKY!!!!!.

What Do I Need?

This seems to be a very very difficult time. We all want this to be over and the reality of what the next weeks and months will encompass has set in with a vengeance. Just think, I didn't care about my birthday. It seems that birthdays take time that could be better spent. Oh, My God am I finally growing up. No, that is not the least bit possible so we shall abandon that thought right away.

I am asked all the time "What Do I Need"? It is so apparent to every one that I need something but I can not put my finger on what that is. I don't think I "need" any one thing. It is a plethora of items.

I need to not have to think about what I need. I am so so weary at this point in time trying to manage all of this. Liueqkemia is a full time job. Having a 12 year old is a full time job, my job should be a full time job. The simplest things are so difficult and I feel like a failure in not having an answer and not calling people more and not having a chance to send out a card or an e-mail.

HELP!!!!!!!!! THE TIME AND ENERGY MONSTER HAS TAKEN OVER MY FORMER LIFE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I need to be around people more but don't have the time to do so. I need to not be around people that take any energy from me. We don't connect much with each other anymore as a society. It is more like we "Intersect" with each other at certain points in the day or week. We have all become so busy with work and play dates and school activities and sports practices and homework and projects that big events are what bring us together. Mary-Elizabeth and I are out of the loop. I don't get to just chat with a fellow mom or have a cup of coffee with a friend while I wait for school to be out. I have to watch as Mary-Elizabeth is forced to live with impending disappointment every day. She gets to plan a certain activity but one bad number and she gets to sit home with her mom while her friends go to the dance and to school and to the mall and to the movies. It is just a fact of our lives at this point. But there are times that it is a rotten rotten reality.

We all have the best of intentions but simply don't have the time to follow through we all seem to drop the ball. Then we have that guilty, "Oh, God, I meant to do __________(fill in the blank) and now it is too late to___________(fill in the blank)." I feel like I am letting everyone down but know that I have not. It is made more difficult in that there are so many times that even a simple phone call is difficult. We all have to ajust our expectations of how the world works. Life is just different and we are still exploring what that really means.


Everyone is weary. It is human nature. Every one has a limit to how much they want to listen to what is going on. When someone askes "What can I do?" I often don't have any answer. I know that everyone wants to help with this process. Logically I should have be able to give suggestions and I have come to realize I don't know the answer to that question. I think everyone has to realize that there is no right or wrong answer. It is sort of like the Nike motto; JUST DO IT. If you can think of something that would make your life easier, execute. I promise that if I can think of something, I will let everyone know.

We are at the beginning of month three and I would like this entire event to be done. I wish I could wrap up this blog and make it into something we can journal and wrap up neatly. The reality is that every single day things go sideways, there are traps around every corner and it is easy to let our guard down. All it takes is one false step and this becomes a very different story. When I get complacent and I forget to do something like take the air out of the heprin flush or I don't wipe the PICC line long enough or I get a bubble in the Lovanox shot or I could start the series of events that send us to the hospital for a bad infection. Each trip out of the house is fraught with potential hazards. Each bite of food could cause a problem, each encounter with a person or an animal or a hand rail could be a potential killer. It is just mind numbing.

Mom thinks I need a tranquilizer. I think I need an attitude ajustment. She sent me out to just sit on the back porch to relax and watch the cats not catch the squirrels. All ll I could see were the full gutters and the trimming that need to be done and the lawn furniture that needed to put way and the hanging baskets that needed to emptied............ I need to give myself a break. I will work on that, now that I am a grown up.

Peg is no longer M-E's Friend

The deal was that I would be with Mary-Elizabeth for each and every shot. We started Day 42 this week. We were at the hospital at the crack of dawn for blood draw and for the most dreaded of all shots. Peg asparagus. We were ready. The bribe was agreed upon. Mom was ready to relieve me after the shot. We had been through this before and would just get the shot done. M-E would wait for the right amount of time and then they would go home.

Of course that didn't work. She needed a blood transfusion. I had figured we would be doing one of those this week because her skin had taken upon that particular shade of pale that was achieved in prior centuries through the use of regular small doses of arsenic. I left the hospital while she waited for the blood to arrive.

I surprised everyone by walking into the door. I did a bit of work, put out a fire or two. Sat down to do some more work and the call came. She had become violently ill and they needed me back at the hospital. She had reacted to the Peg and would never want to see another chicken strip again.

I headed back to find a very sick and groggy child. She was in a very strange state. It was apparent that she was not doing well. I just wanted to grab her and hold her and make it all better. I was not able to touch her because I have had a cold and did not want to complicate the situation. She had been given a bunch of benyadryl, some hydrocotozon and they were trying to get a pint of packed red blood cells into her before she totally crashed. Needless to say we were all in bed by 6:00 when we were able to go home. I was just glad they were not admitting her. I knew that if I could get her home she would be better off. I also knew that if I said " Do you think we should stay? " We would have still been there today.

Things have been much better today. She slept last night, I was up every two hours to check on her but she was able to eat this morning and go with mom to do some shopping. I had a very good cheese cake with Margarita Candles. They were unlike any I have every seen. We had a quiet evening at home and for my birthday I was given the news that she never has to have another "Peg" shot again.

Life is grand.

Day 42 and She continues like a trooper

This is what M-E forwarded to me. I guess it says it all.

I was with her this morning for her second Peg asparagus shot. The nurses change but the needles and syringes stay the same. She is in for three pints of someone's Red Blood Cells. She should be perky this evening.


In case anyone is interested, Saint Theresa is known as the Saint of the
>Little Ways. Meaning she believed in doing the little things in life well
>and with great love. She is also the patron Saint of flower growers and
>florists. She is represented by roses.
>
>May everyone be blessed who receives this message. Theresa's Prayer cannot
>be deleted.
>
>REMEMBER to make a wish before you read the poem. That's all you have to do.
>There is nothing attached. Just send this to seven people and let me know
>what happens on the fourth day. Do not break this, please.
>
>Prayer is one of the best free gifts we receive. There is no cost but a lot
>of reward.
>
>St. Theresa's Prayer:
>
>May today there be peace within. May you trust your highest power that you
>are exactly where you are meant to be. May you not forget the infinite
>possibilities that are born of faith. May you use those gifts that you have
>received, and pass on the love that has been given to you.. May you be
>content knowing you are a child of God.... Let this presence settle into our
>bones, and allow your soul the freedom to sing, dance, praise and love.
>It is there for each and every one of you.
>
}

She is Pale but eating on Day 41

The squirrel is half way through his morning corn cob. They get one, maybe two a day. If you put too much out they run themselves ragged. I think squirrels originated Obsessive Compulsive Disorder. "OCD" in more elevated circles

We all dressed up last night and went out to Palisades for dinner. M-E had a salad and one third of the famous PuPu platter. She was happy and I was ecstatic. I am still sure that there is some magic food we can feed M-E and she will get better faster. I am just sure that if we can convince her to eat or drink just the right thing she won't need a blood transfusion.

She is headed for one this week. She is getting more and more pale each day. She has had 48 doses of Chemo and 12 doses of radiation since we started Consolidation on September 25th. She only has 5 more before the 6th of December when we begin the first Interim Maintenance phase.

I look at the calendars and the schedules and try to contemplate what it all means and where it all leads. Each child is given a "Road Map" . It lays out the treatment and doses for the course of treatment. It is sort of like a Triptych from AAA. We have been able to turn over only one page of the map. Soon we move to the next page and continue this journey. I just hope there are somethings I recognize as we follow this path. The not knowing and not being able to plan makes me crazy.

I find that lots of things make me sad. It is the little things like not knowing if we can plan to go to someone's house on Thanksgiving. Wondering if we plan a big Christmas if we have to cancel. Wondering is I should plan for M-E to be in Crew in the Spring.

To complicate the sitution is this doubt and fear in the back of my mind all the time. Will I regret it if we don't do a full blow-out Christmas? What if we don't go to see the Nutcracker this year? Do we go so she can see it or do we stay home because there are germs? Will she ever be cancer free. I have yet to find any assurance that this will ever really go away. I keep running into articles on "secondary cancers", shorten life spans, learning disorders, liver damage, kidney damage, brain damage.......... emotional damage. The standard line is that I can not think about that but then how do I not think about it. How do I ever let it go? How do we plan for a future if we don't know what the possibilities are going to be.

I will try and focus on today, and this moment and watch the squirrels.

The Garage is Almost Empty and It has Been Three Months

The Garage is almost empty across the street. We have watched the moving process for more than 6 months. We have seen the boards, the fencing, the spare tires, the gold, white and turquoise refridgerators taken away. We have seen pipes and metal table frames, wooden shelves and bent metal shevles, cupboards and doors and boxes and piles of stuff leave the little house.

We have seen a 1940's army camper, a front loader under an Ernst Hardware tent, a sail boat, a zodiac with motor, a cabin cruiser and a mail carrier's jeep come out of the back yard. We have seen truck load after truck load of stuff be hauled away. We watched the opening of the garage wondered in the amount of wood, planks, metal fence posts and other long pieces of timber there were. We have watched as the garage sagged and counted the moments before the certain collapse would occur. We marveled at the discovery of the 1940's white Volvo with the old toilet perched on top. We could not believe that there was an extra engine that later emerged. The stuff keeps on leaving and no one is sure if the 1952 Airstream is still there.

Our neighbor is a hoarder. He is a very nice and gentle man that is kind to children and all of God's creatures and would never let an item go unclaimed. He is moving. Finally the city left enough notes on his doors and the insurance company complained and the fire my brother extinguished helped convince him it was time to go. He will never be forgotten but not missed.

The move has entertained my mother and M-E. It has been a source of amazement for me. I was horrified and ready to clean Ohio house out. I have now realized I could be a massive collector of every thing under the sun and never, ever, have as much stuff as he has moved.

I think the moral of the story is that even when you are all tapped out there seems to be more in your garage that will keep you going. I am feeling very tired right now. I finally have a cold. M-E's numbers are high enough that I don't have to leave the house. The last three months have caught up with me.

It has been three months. We are supposed to be done with this phase on Monday but we are three weeks behind. Her nasty shot is on Monday. She is dreading it but will make it through to the end of this phase. We have a bit of a break. Only a couple of appointments a week. If we can make it through without an infection..........

Just a little article I wrote in my Spare time.

How do chemotherapy drugs work?

The object of all chemotherapy drugs is to kill the cancerous cells and not harm the adjacent healthy cells. To that end, scientists tried to identify characteristics that are unique to cancer cells and are not found on normal tissue. A distinct cancer trait could serve as a potential target for a chemotherapy drugs and thereby fulfill the above goal. One feature that is truly unique for most cancer cells is that they grow at a rate faster than normal cells. Therefore targeting some aspect of the cell growth cycle seems reasonable. Fast growing cells would be affected the most and slow growing cells would be least disturbed. In fact, that is the basis for many chemotherapeutics. This seems obvious when considering the side effect profiles of most chemotherapy drugs. Hair follicles, skin, and the cells that line the gastrointestinal tract are some of the fastest growing cells in the human body, and therefore are most sensitive to the effects of chemotherapy. It is for this reason that patients may experience hair loss, diarrhea, and rashes.

The human body processes and excretes all drugs through either the liver or the kidneys. Therefore, when a patient has kidney or liver damage, giving chemotherapy becomes precarious. Administering the recommended amount of drug may prove to be too toxic in a patient unable to metabolize and excrete it. The pharmacokinetics for cancer patients are very complex and chemotherapy pharmacology is a subspecialty on its own. Unfortunately, kidney and liver damage often result due to cancer invasion, limiting the patient's chemotherapy options.
Pharmacokinetics is further complicated in the cancer patient, as they are often taking multiple medications, some of which have overlapping metabolic pathways and side effect profiles. An example of this difficult situation is in the brain cancer patient. Because brain tumors often present as seizures, many of these patients take anti-seizure medications. Anti-seizure medications are metabolized by the liver and affect the metabolism of many chemotherapy drugs. Dose adjustments are an absolute necessity to avoid toxicities or sub-therapeutic dosing.

The cell cycle

The cell cycle is broken up into four phases the G1, S, G2, and M phases. The G1 phase is the phase most active in protein synthesis. The cellular DNA at this phase is tightly coiled and is not actively being transcribed. Few chemotherapy agents are active at this phase of the cell cycle. By contrast, the S phase is the synthetic phase of the cell cycle. DNA replication is most active and many chemotherapeutic agents are most active in this phase. G2 represent a time when mostly RNA, but some protein, is actively produced. Mitosis, actual cell division, occurs during the M phase. There are two major classes of chemotherapy drugs that are most active during this phase of the cell cycle.

The remainder of this article includes a summary of the major classes of chemotherapy drugs.
Alkylating agents

Alkylating agents are the oldest class of anticancer drugs. Almost all of these drugs are active or latent nitrogen mustards. Nitrogen mustards are various poisonous compounds originally developed for military use. Alkylating agents all share a common mechanism of action but differ in their clinical activity. They attack the negatively charged sites on the DNA -- the oxygen, nitrogen, phosphorous and sulfur atoms. By binding to the DNA, replication, transcription and even base pairing are significantly altered. Alkylation of the DNA also leads to DNA strand breaks and DNA strand cross- linking. By altering DNA in this manner, cellular activity is effectively stopped and the cell will die. Chemotherapy drugs in this class are active in every stage of the cell cycle. As a consequence, this class of anticancer drugs is very powerful and is used in most every type of cancer both solid tumors and leukemia.

In general, prolonged use of these drugs will lead decreased sperm production, cessation of menstruation, and possibly cause permanent infertility. This class of chemotherapeutics should never be used in the first trimester of pregnancy as they are been shown to increase fetal malformations. Use in the second or third trimester does not seem to carry the same risk. All alkylating agents can cause secondary cancers although not all agents are equal in their carcinogenic potential. The most common secondary cancer is a leukemia (Acute Myeloid Leukemia) that can occur years after therapy.
Some of the more common alkylating agents include: Cyclophosphamide, Ifosphamide, Melphalan, Chlorambucil, BCNU, CCNU, Decarbazine, Procarbazine, Busulfan, and Thiotepa.

Antimetabolites

In 1948, Dr. Sidney Farber showed that a folic acid analog could induce remission in childhood leukemia. Approximately 10 out of the 16 patients treated demonstrated evidence of hematologic improvement. This experience provided the foundation for scientists to synthesize a number of other agents that either target naturally occurring compounds or inhibit key enzymatic reactions in their biochemical pathways. In general, all antimetabolites interfere with normal metabolic pathways, including those necessary for making new DNA. The most widely used antifolate in cancer therapy with activity against leukemia, lymphoma, breast cancer, head and neck cancer, sarcomas, colon cancer, bladder cancer and choriocarcinomas is Methotraxate. Methotraxate inhibits a crucial enzyme required for DNA synthesis and therefore exerts its effect on the S phase of the cell cycle.

Another widely used antimetabolite that thwarts DNA synthesis by interfering with the nucleotide (DNA components) production is 5-Fluorouracil. It too has a wide range of activity including colon cancer, breast cancer, head and neck cancer, pancreatic cancer, gastric cancer, anal cancer, esophageal cancer and hepatomas. A unique and interesting aspect of this drug is its toxicity profile. 5-Fluorouracil is metabolized by a naturally occurring enzyme called dihydropyrimidine dehydrogenase, DPD. There is a small population of people who may be deficient of this particular enzyme. Lacking DPD does not interfere with normal body biochemistry and thus the phenotype is silent. However, when these patients are challenged with this chemotherapy drug, they are unable to metabolize it and therefore get acute and sever toxicity. The most often seen toxicities include bone marrow suppression, severe GI toxicities, and neurotoxicities which may include seizures and even coma. It is important for the oncologist to recognize this early and provide the patient with Thymidine as an antidote. A drug called Capecitabine is an oral pro-5-Fluorouracil compound that has similar side effect potentials.
Other antimetabolites that inhibit DNA synthesis and DNA repair include: Cytarabine, Gemcitabine (Gemzar®), 6-mercaptopurine, 6-thioguanine, Fludarabine, and Cladribine.

Anthracyclines

Many of the currently effective anti-cancer drugs are from natural sources. The drug, daunorubicin was isolated from Streptomyces, a soil-dwelling fungus. Doxorubicin, another Anthracycline drug, was isolated from a mutated strain of the same fungus. Both of these drugs have a similar mechanism of action, but the latter is more effective in the treatment of carcinomas. This class of chemotherapeutics works by the formation of free oxygen radicals. These radicals result in DNA strand breaks and subsequent inhibition of DNA synthesis and function. Anthracyclines also inhibit the enzyme topoisomerase by forming a complex with the enzyme and DNA. Topoisomerases are a class of enzymes that serve to unwind the DNA double strand helix to allow for DNA repair, replication and transcription. This class of chemotherapeutics is also not cell cycle specific. The most important side effect of this group of drugs is cardiac toxicity. The same free radicals that serve to damage the DNA of the cancer cell may damage the cells of the heart muscle. Oncologists monitor heart function very carefully when patients are on these medications. Other commonly used anthracyclines include Idarubicin, Epirubicin and Mitoxantrone.

Antibiotic

Another small peptide isolated form the fungus Streptomyces verticullus is Bleomycin. Its mechanism of action is similar to that of the anthracyclines, in that free oxygen radicals are formed that result in DNA breaks leading to cancer cell death. This drug is rarely used by itself rather in conjunction to other chemotherapies. Bleomycin is an active agent in the regimen for testicular cancer as well as Hodgkin's lymphoma. The most concerning side effect of this drug is lung toxicities due to oxygen free radical formation.

Camptothecins

The drugs in this class of chemotherapeutics act by forming a complex with Topoisomerase and DNA resulting in the inhibition and function of this enzyme. The presence of Topoisomerase is required for on-going DNA synthesis. These drugs are used in many solid and liquid tumors and the side effect profile of this class of drugs is agent specific. Camptothecins include both irinotecan and topotecan. The parent compound, first identified in the late 1950's, is a naturally occurring alkaloid found in the bark and wood of the Chinese tree Camptotheca accuminata.
Etoposide, a chemotherapeutic that works by the same mechanism, is a natural product isolated from the mandrake plant and is not considered a camptothecin but rather an epipodophyllotoxin.

Vinca Alkaloids The leaves of a periwinkle plant, Vinca rosea, were used to make tea that reportedly improved diabetes. Early research showed that aqueous extract of this plant administered by injection into rats resulted in their death within a week. Further investigation showed that the rats die of sepsis due to bone marrow suppression caused by this extract. Isolation and chemical characterization lead to the currently used drugs: vincristine, vinblastine, and vinorelbine. These chemotherapeutics bind to the tubulin and lead to the disruption of the mitotic spindle apparatus. The disruption of mitosis implies that these drugs are active specifically during the M phase of the cell cycle. They have a wide application to many different malignancies and cause neurotoxicity as the most prominent and dose limiting side effect.

Taxanes
Another class of chemotherapeutics that are specific for the M phase of the cell cycle is the Taxanes. The taxanes include paclitaxel and docetaxel. They bind with high affinity to the microtubules and inhibit their normal function. This class of drugs has a broad range of clinical activity including breast cancer, lung cancer, head and neck cancer, ovarian cancer, bladder cancer, esophageal cancer, gastric cancer and prostate cancer. The most common side effect of these drugs is the lowering of the blood cells. These compounds were first isolated for the bark of the Pacific yew tree Taxus brevifolia in 1963. It was not until 1971 that paclitaxel was identified as the active component.

Platinums

Natural metal derivatives were also shown to have some activity in the fight against cancer. These agents work by cross-linking DNA subunits. (The cross linking can happen either between two strands or within one strand of DNA.) The resultant cross-link acts to inhibit DNA synthesis, transcription and function. The platinum compounds can act in any cell cycle. Cisplatin is used most often in lung cancer and testicular cancer. The most significant toxicity of cisplatin is kidney damage. Second-generation platinum, called carboplatin, has fewer kidney side effects, and at times may be an appropriate substitute for regiments containing cisplatinum. Oxaliplatin is a third-generation platinum that is active in colon cancer and has no renal toxicities, however, its major side effect is neuropathies.

Conclusion

There are other drugs now being used as effective therapies for malignancy. These include hormones for breast, prostate and endometrial cancers, monoclonal antibodies, immunotherapy with IL-2 and TNF alpha, and small molecule inhibitors. The process of drug discovery involves much time, effort and resources. New approaches are constantly being developed and modified. The process of testing a new agent in clinical trials begins with the discovery of new compounds, new ideas, new pathways, and new principles.



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We Are working on finishing this Phase.

We are close to the end of Consolidation.

Consolidation 63 days of very unpleasant and arduous treatment.

There will be no good memories from this phase. It is full of nasty chemo and radiation and side affects. We will remember it as the phase where Kerry lost or should I say conceded. I am sure we could have had a re-count and maybe the Supreme Court would have appointed him and maybe the war in Iraq would have come to an end and maybe I am still having a bad dream..............................

People talk about being in shock after they hear bad news. I think shock is just a denial device. It lets you deal with the news and reality of your true situation. I think we should have denial support groups. I need a bit more denial right now. The reality is just too much this morning. I think I am tired, I need to go to work, my weariness is catching up with me and I do not see that there is any time for me to deal with getting some real rest for the near future. I have come to the conclusion that a few hours does not do it. I think I need a week of no work, no nursing, no appointments and no worries. I can do all of them but the worries part. It just does not seem to go away.

On a good note, M-E has only one more dose of ARA-C. She is still at 1000 on her ANC. Here red blood count is dropping so we are headed to a transfusion but then we know what those are like. She will have a week of very low counts and then should bounce back. She has one dose of Vincristine and a three big nurses with big syringes on Monday the 15th and then we do the Bone Marrow Wait. We wait for her to start to produce enough good cells to being the next phase. Interim Maintenance. Treatment only every 10 days and Mondays for clinic.

It seems pretty simple at this point. Maybe I will sneak in some of that rest.

Sal

Wolf Died unexpectedly

On Saturday morning Mom called and said Wolf had not been up. She said he did not seem well. He had been fine the day before. His nose was cold but he was just not himself. She had called Alex and he was coming in to town to see what he could do and maybe take him to the Vet. Alex and Wolf had a special relationship. Alex did things like bite Wolf's ears but that would be another story. Before Alex was able to get to the house, Wolf got off the couch and collapsed. He died of an apparent heart attack. Mom was besides herself because she could not lift him and Dad was off selling at the flea market. I think the next dog has to be a manageable size.

Alex arrived and Wolf has been buried in a place of honor. The Scarlet Runner beans will be especially hearty next year.

I was finally able to speak with Dad this morning. He told me he missed his friend and I Quote: "For God's Sake don't let your sister send a Res Dog!!!!!!!" I guess Sadie will have to do for a while. She and Dad have a special bond. Sadie loves to sit next to Dad's polar tech and he hates her and she does not care. It works for them.

We are all very very sad. We children will have to think of something nice to do for Mom and Dad. I guess we can suspend our "Why do our parents treat the dog better than they ever treated us sessions" for a while.

ANC and what it really is and why I talk about it all the time.

I have mentioned the ANC and finally found something that helps explain it. We live and die by this number. We have not had a blood count since last Tuesday. It was 1880 and we were able to start treatment. It should be much lower today. Hopefully this info will be helpful. I wish for each of you that you never have to know what this is in your child.


What is Absolute Neutrophil Count (ANC)?
Absolute neutrophil count, or ANC, is the real or actual number of white blood cells (WBCs) your child has to fight an infection. White blood cells work against possible bacteria, fungus or viruses that may make your child sick.
Your child's ANC will slowly rise showing that his/her bone marrow (the part of his/her body that makes white blood cells) is recovering after chemotherapy or radiation.
After chemotherapy, radiation, or a blood or marrow transplant, your child's ANC will slowly increase, showing that the new blood cells are starting to grow and mature. It is not unusual for your child's ANC to go up and down each day during the early phase of bone marrow recovery.
A normal ANC is 1500 or higher; a "safe" ANC is 500-1500; a low ANC is less than 500. A safe ANC means that your child's activities do not need to be restricted. If your child has had a blood or marrow transplant, other parts of the immune system may take several months to recover. Ask your child's doctor about specific restrictions which may apply.
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How to calculate ANC
Calculate your child's ANC using the numbers from your child's complete blood count (CBC). The formula is:
ANC = Total WBCs x (segs + bands)
Multiply the total number of WBCs by the number of segs plus bands (the types of WBCs that fight bacterial infections).
For example, your child's WBC is 4,000, and he has 20% (.20) segs and 10% (.10) bands. Calculate the ANC as follows:
ANC = 4,000 x (.20 + .10)ANC = 4,000 x (.30)ANC = 1,200
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Safety tips
After chemotherapy or radiation, your child's ANC may drop as low as zero. If your child's ANC drops below 500, it is important to:
Avoid crowds and people who are sick with a cold, flu or runny nose. If your child needs to be admitted to the hospital with a fever and a low ANC, people with a cold or flu will not be able to visit your child. This is to protect your child from being exposed to possible infections.
Wash your and your child's hands carefully to reduce the risk of catching an infection from another person.
Avoid sharing utensils or cups with others when eating or drinking.
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Call your child's doctor
Call your child's doctor immediately if your child has a low ANC and any of the following signs:
A fever above 100.5°F (38°C) twice in a 1-hour period, or any single fever above 101.5°F (38.5°C). Let the physician know whether the temperature was taken under the arm or in the mouth.
Sores in the buttock area, mouth, or on his/her skin; you may notice redness, drainage, or pain and tenderness to touch
Cough
Any other signs of infection

It is Dark and Quiet and Calm. I Wish it would stay that Way

I have been up for about an hour. I tried to sleep in this morning but it seems that I am just like a school child. I can not get out of bed to work but to play, I can not stay in bed. M-E has had her IV unhooked, a Zofran and will sleep for a few more hours. Lori is asleep and will remain in that state for a couple of more hours. I have made a pot of coffee, lit a couple of candles and pulled the bottom kitchen drawer out and emptied it. It is out of control so my way of handling the situation was to dump the contents, pull out the lining paper, washing out the drawer and then drinkcoffee.

I don't think I can abandon the project once I have it started. I don't think a pile of unboxed zip lock bags on the table will be acceptable to even me. My rational for not completing it right now would be that it will make too much noise for a sleeping household, the drawer needs to dry and I need to do a post since I am behind. See, I am a good lawyer. I could present equally compelling arguments why I should go back in there and finish it now.

I needed to sit and collect my thoughts and plan the day. As I lit a couple of candles this morning I realized how many of my votives have given all then can give. Only the little metal "wick holder in place thingys" are still there. I think we feel like a little metal wick holder in place thingy right now. Some use left but just about useless. Everyone knows that this is along process but we didn't know how long the process would feel. It is just so, so hard.

I know I will feel better after some rest, a bit of time away and an evening at the St. Joe's Auction. My dear friend Ruth bought me a ticket for the auction and has been very firm about my presence. I know that a good time will be had by all and I need to go out more. My reserves are limited at this point. My goal this week-end is to take a long long nap on Sunday and not spend Mary-Elizabeth's IV fund.


Lori has helped a lot by being here. She is beginning to question my complaints that we spend hours and hours at the hospital. Lori has taken M-E to two of her appointments for her Ara-C and the car is not even cold when they return to come home. Lori refuses to give up her secrets on how she accomplishes this feat but then Lori is a very straightforward and determined woman. Give her a project and she will execute it.

Lori is trying to tackle the never-ending "Oh, my God where did all the laundry come from?" issue in this house. Everyone that comes here works on the laundry. Lupe does laundry for weeks and weeks. She bleaches and washes, and folds and re-washes and folds the entire time she is here. ( I complain endlessly about excessive water use and that makes Johnny mad but then I think that our role in each other's lives is to irritate each other a bit.)

Mom comes and washes for days and days and when she has the basket empty, she starts on stuff that she thinks needs to be re-washed. She digs into the basement and no quilt or flannel sheet goes untouched. She then organizes the neighbors to go to the laundry mat to use the giant machines. Alison trays also.

Lori thinks I just need to be re-trained. She explained to me that there is a "Laundry Process". A process? She even has defined steps. How can you not just love people that can break laundry down into a process. She has been trying to instruct me in this new laundry system. There is the real challenge.


LAUNDRY SYSTEM:

1. Put the cloths in the washer. ( I knew that step but it needs to be included)
2. Transfer the cloths to the dryer.( I have that one down most of the time. When I fail, I know to leave the cloths in the washer and just do them again.)
3. Take the cloths out of the dryer. (Now I do this..........................Eventually.)

Step four is where Lori and I diverge in our methodology. I am a pile and pile again, kind of person. Lori has pointed out that dry cloths do not make good dryer covers. She suggests the next steps.

4. Fold or hang the laundry

Final and evidently the most important step:

5 Put it away.

Now that seems simple but for some reason I am genetically and completely disabled in this department. My sister Belle tried to explain to Lori that we have some sort of DSM IV disorder. Karen has been doing Belle's laundry for years. I like Belle's system better.

Well, the quiet continues. The sky is beginning to transform from dark to light, the remaining candles are doing their last best efforts and I am going to try and put away some cloths and organize my bottom kitchen drawer.

It has been a long hard Week

We are home but it has been a long long week.
On Tuesday we took cookies to the nurses and doctors at the Hem/Onc clinic. We let them smell the cookies and let them know that if she had an ANC that allowed us to continue with treatment we would let them eat the cookies.

It worked. She had gone from 380 on Thursday to 1880 on Tuesday. I guess we would have to classify her Bone Marrow as a "Slow Starter". Once it starts and is reveved up it is great.

We were admitted to begin day "28" it was really day 36 but then with new math you can never know what adds up to what. So, up to a room. A nice room. Windows and lots of televisions so we could have network central for the election coverage. We settled in. We knew what to expect: Fluid, Zofan, Cytoxon, Arac more fluid and the Lasix and then two hours of standing by the bathroom door and then lots of sleep. We knew what to expect and were were ready.

Remember when I have said that this whole process makes me crazy because things keep changing? We plan, we anticipate,we try to trouble shoot and when you think the world will be fine it all falls apart. She was not herself in the morning. She had Zofran, Arac and then started to get sick. They gave her some medications and she slept a bit. Then she said" I am ready to go" She stood up and almost passed out and was sick again. In came the nurses, in came the doctors, in came the fellows and residents and the medical students and finally the Lady with the Alligator Purse.

More drugs and then she just moaned. That deep and intense moan that comes from a very primitive place. A place where no on can reach or help or touch. She had slipped away from everyone and everything. I hated we were at the hospital because I just want to get as close to her as I could and try and take away some of the pain and agony and absorb it. It is so hard to know that you are totally without tools, or resources or any recourse. Time, we just had to wait for everything to work. As a Mom it is so hard. I made this child, I carried her deep in a safe place and now I there was nothing I could do.

I pulled the chair/bed out and was a close to her as I could. I slept, she slept and we waited. About 4 hours later she woke up and said let's go. I had been packed and we made a hasty retreat. I guess we now have more that we can expect. Two more of these treatment.

It was good to be home. She crawled into bed, I gave her the medications she needed, skipped her shot and then waited for Lori to come. She is a former law school class mate. She flew in from Boise to help. It was great to know we would have time to catch up on things from another time and another world.

Tuesday We started and it was not fun

We are home. We had a bad night and Kerry loosing the election made her sick. The doctor's are sure that all her nausia was due chemo but then I have other views. I am putting her to bed and the I am going to try and sleep.

I Found Color and this might be day 28

Okay, I found the color. How much fun it that. It is gray outside and even the gross beaks are grey but I found something to spice life up with. I need a life. I am sitting at my front window, watching the birds complain that the white millet feeder is not full, watching the leaves float down the street. Big rain today. It is a sad small life but I will take what I can get. I am so glad that we painted the house full of big color because it does make us smile and matches the current season. Oh, I never thought about how the house will look when Christmas arrives. Oh, well.....

I am going to try and get us admitted to the hospital today. This is always a challenge. We are going for an ANC of 750. We shall see. Pray, Please, Lots. I am finding day 27 is not so much fun right now. It is like being stuck in a snow bank, lots of spinning wheels. Not sure when we are going to be released. Limbo you might say, Purgatory. I may have to examine how to get out of Purgatory more carefully. I did join the church that created Purgatory.

I actually love the gray this time of year. The gray of the sky when the cloud are full of rain is so refreshing. It is nice to know that everything is getting the water it needs. We need it SO much. I planted some bulbs and things are dry deep deep down. The grass looks good but the trees are in trouble.

It is sort of like M-E, she looks great right now. She has this beautiful pale freckled skin. She has a bounce to her step, she has this great "portable hair" . She has a smile that could knock anyone dead. She has a great sense of humor and a wit that just blows me away. Yet, under the surface we may still have problems lurking. Deep down we have the potential for disaster. We will never know because we are never going to let any of the bad things come back. Her lookemia could be gone or not. They are going to keep treating her until they believe it will never ever return.

May this be day 28.

It's a Dark and Misty Night

The rain has been falling all day. I have spent hours at this computer and don't feel like I have accomplished much. M-E is just pooped. No other words for it. She is tired. She did a lot this week-end and her body is not as willing as her spirit to be involved with the living.

She came home from an overnight with the Vehoffs and laid down on the couch and that was that. I managed to get a bit of cereal into her and she chatted with a few of the kids at the door. She wanted to "hear other people doing normal things." I could not have said it better.

She wants normal and life to be normal. I suggested that we not carve the pumpkins this year but she did not think that was a good idea at all. She was very certain that life would not be complete if I did not get up to my armpit in pumpkin guck. Three lanterns are on the front porch. Not our usual 15, nor are they very creative but they are carved and they are lit, and they were there with all the normal pumpkins on this dark and misty night.

I know what she is feeling because I feel we have somehow stepped out of life. We are in this little space that is focused on very specific tasks. There is little or no connection to the outside world. I feel like I have crawled into a space under a root and pulled the forest bits in after me. No knowing what will come along, I feel I have to have my back against the wall and watch out all the time. I don't dare fall a sleep or let my guard down. There are so many things out in the dark and misty night just ready to pounce.

Maggie called this week-end and offered to spend a few hours at the house on Sunday and let me go do some things. My first thought was that I am not sure what I would do. Movie, maybe. Go shopping, no. I have been watching my neighbor move and I am now ready to pitch everything. Go visit someone, maybe. Try and forget for a few hours. I don't know if I can. I wish I knew a way to forget. See, Dark and Misty nights..... bring out the dark and misty feelings.

I did not let the time slip by. A nap, a bit of quilt finishing and then we went out to a real dinner ,with salad,a drink and everything. It was nice.

I decided that I have to have some plans and ask people for some of their time and figure out what I want to do if time avails itself.

Plan: something that you decide to do in the future. Something people with type A personalities do to excess. It makes them very grumpy if the plan falls through. I will try to re-enter the world of the normal.

I long for a plan on this Dark and Misty Night.

So does this make any sense to you?

What I learned about Methotrexate while wating for Trick or Treaters and wondering why the college girls across the street only drive BMW's.


The CA name for methotrexate is: N[4-[[(2,4-diamino-6-pteridinyl)methyl]methylamino]benzoyl]-L-glutamic acid. The CA registry number is 59-05-2. Common synonyms: Mexate, Methylaminopterin, Emtexate, Metatrexan, Methopterin, MTX dihydrate, Folex, Folex PFS, Amethopetrin.
Methotrexate is an antineoplastic, an antirheumatic, a nucleic acid anti-metabolite (like 6-MP,above), and a "folic acid antagonist".
Hmm, folic acid, a necessary nutrient. Let's see, here's folic acid, let's compare:
folic acid
You can see that the nitrogen group has a CH3 on it and there is an OH group in the double ring instead of an NH2 group. Enough to make a difference in a biosynthesis scheme!
At two stages in the biosynthesis of purines (adenine and guanine) and at one stage in the synthesis of pyrimidines (thymine, cytosine, and uracil), one-carbon transfer reactions occur which require specific coenzymes.These coenzymes are synthesized in the cell from tetrahydrofolic acid. Tetrahydrofolic acid itself is synthesized in the cell from folic acid with the help of an enzyme, folic acid reductase. Methotrexate looks a lot like folic acid to the enzyme, so it binds to it thinking that it is folic acid. In fact, methotrexate looks so good to the enzyme that it binds to it quite strongly. All the folic acid reductase enzymes in the cell bind merrily to the methotrexate and ignore any folic acid they might see. Thus, DNA synthesis cannot proceed because the coenzymes needed for one-carbon transfer reactions are not produced from tetrahydrofolic acid because there is no tetrahydrofolic acid. Again, without DNA, no cell division.
Most of the parents of cancer kids have been told not to give folic acid supplements during chemo since it interferes with the action of the methotrexate.
Methotrexate has a general toxicity because it affects all rapidly dividing cells, such as those in the intestonal mucosa and prevents the production of tetrahydrofolate from folic acid in all tissues. Tetrahydrofolate is a necessary compound in many biosynthetic pathways, not just the synthesis of DNA. One of these is the synthesis of L-glutamate. One parent told us that her oncodoc recommended glutamic acid supplements, and that they helped her child immensely. Makes sense.
Also listed by the hospital: the possible adverse effects of this drug are mouth lesions in the form of painful patches on the lips, gums and mucosa of the mouth. These clear rapidly with stopping the drug. Along with mouth ulcers, there can also occur ulceration of other parts of the digestive tract with abdominal pain, vomiting and diarrhea. This drug can depress the bone marrow, which leads to a depression of white blood cells, platelets, and red blood cells.
Which means that they will be monitoring your child's CBC. With high doses of methotrexate, they will monitor fluid intake and urine output closely. Leucovorin is a medicine that may be prescribed. Leucovorin is an antianemic and an antidote for folic acid antagonists. Leucovorin is the active form of the B complex vitamin, folate. Another name for Leucovorin is folinic acid: the very name I found in a biochem text - it said that it could help alleviate the effects of methotrexate! "Leucovorin is used as an antidote to drugs that decrease levels of folic acid. Folic acid helps red and white blood cell formulation and the synthesis of hemoglobin. Some treatments require what is called leucovorin rescue, because the drug used to treat the cancer or other infection has had an adverse effect on folic acid levels. Leucovorin is used to reduce anemia in people taking dapsone, a preventive treatment for PCP. Leucovorin is also used in combination with chemotherapy such as methotrexate." (The words in "" are from the link on Leucovorin given above.)
References: Biochemistry texts, Web sites (various).
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We are stuck in Day 27

Mary-Elizabeth is stuck on day 27. Karyn, our Nurse Practitioner, made us these really great treatment calendars. I have them out to October of 2005 when her intense part of treatment ends. They out set in great detail, the treatments M-E will receive from now until the her last dose of Prednisone on October 8 2005. I have color coded the calendars and have relied on them to organize my life. Unfortunately, there is fine print. Each stage of chemo creates a problem for M-E's bone marrow. Her marrow has to recover to a certain extent in order to continue. There seems to be no magic alixer. No magic pill. Time, time and more time.

We have found that being stuck has some benefits associated with the wait. M-E was able to go to school for a few days last week. She and Whitney were able spend the day at our house and then come to the office for a pizza party. She loved seeing everyone! Rhonda made her day with a ghost and she received lots of hugs and good wishes from evetyone. It was great.

She was able to spend the night with Verhoffs and I was able to go to a nice adult dinner. I even was able to go to church.

The best part is what she said: Mom, I feel great. I know that after all the treatments, I will feel like myself again. I will have energy and will feel like laughing. People won't know I have luqemia. Lots of people think this is my hair!

Keep us in you prayers. We won't be here for too much longer. We might reach day 28 Tuesday. 8 Ara-C, 2 Vincristine, 3 Asparagus shots and a dose of Cytoxan, 14 doses of Mercaptopurine and lots of time..............

Things I Hate

1.I hate that I don't know what the day will bring. Each day I have a plan. It involves work and taking care of the house and the laundry and yard and some fun stuff. Right now I am going to go take a shower and get ready for work. I am going to get M-E up and take her for quick blood draw and then to school. I am going to my office and then to a meeting. Then I am going to go home and fix something for dinner and go to a meeting at the hospital and then come home and hook M-E up to an IV pump for the night. Seems simple and straight forward but then there are bumps in everyday. She might not be able to get up. She might have a fever. We might not get out of the hospital and be trapped for days at the hospital.

2. I hate HIIPA. Johnny has a new job and we have a new health insurance policy. M-E just was added. Guess what????? they think they cannot talk with me. Evidently if I learn if Children's Hospital is in the network the world will come to an end. If I can get them to assign a case manager to our case, I won't be able to talk with that person. Evidently if my daughter needs Zofran my discussion about her need violates some driving and necessary life force that will harm the universe.

3. I hate Leiquemi and how it has hidden "Normal" and won't let us know where to find it. Maybe Normal was sort of like the Weapon's of Mass Distruction. Maybe Normal was a myth. Maybe it never existed. Maybe we just thought we were being "NORMAL" Maybe Normal becomes something different for everyone. Maybe Normal is new all the time. I thought it was Normal to scream at your child: Get your hair out of your eyes!!!!! Now I scream: Get your hair out of the cereal!!!!! I thought Normal was trying to keep your middleschooler off the phone instead of trying to encourage her to talk with a friend for even a few minutes. I thought Normal was trying to stay away from McDonald's instead of begging her to eat a french fry. I thought Normal was to discourage your child from drinking soda not pleading with her to do so.

4. Most of all I hate that I have developed a whole new understanding of Medical Language. Shots are now injections. Infusion therapy = IV's. Protocols and Road Maps = what we are going to do next. Salad Bars = Death Traps. Methotrexate, Cytoxon, Ara C, Vincristine, Daunarubison, Doxarubison, Prednisone, Zofran, and a lot of other poisons are your friends. I hate that I know how to handle short term side affects. I hate that I can start an IV. I hate that I can flush a PIIC line. I hate that I know what a PIIC line is and how it works. I hate that I have this BLOG about my daughter. I hate that Mary-Elizabeth gets to Make a Wish.

5. I hate leukemia. If you are going to discover that you have something rare, why couldn't it be the Hope Diamond in a box in the basement?

She is up and we are heading out the door today. So on a good note. I love that the day is going to start as NORMAL.

Waiting

There are lots of thing we wait for in this world. We wait for holidays. Christmas being the most exciting. Of course the world knows I am a bit of a nut. I have "too much Christmas Crap!" Sayeth Mary Lanham. She is probably right because Moms are always right but I love Christmas. Ironically it was having Mary-Elizabeth who made me scale back for a number of years. Too much too soon just made the season crazy. Kids need little bits and not a full blown crazy time. They need to have things calm or they just go crazy and get out of hand. There can be too many presents and too many events and too much candy and too much excitement. We are going to do a great job decorating. I am going to gather the troops and I think we have to put lights outside in every possible place. M-E loves the outside lights. We are also going to dig deep in the "Christmas Crap" and bring out lots of things that have not seen the light of day for a long time. If there ever was a year. We are unearthing the decorations. I think the village is making an appearance also. Of course I wonder if I can have a live tree in the house? I do remember a world where fungus, mold and germs were just something to clean up and not to be feared.

During M-E's treatment I hope we are waiting for Christmas and not Godot. We spend so many hours at the hospital and for blood counts and for clotting studies and for IV's to drip. So much of what we here is, "Well we can not know for sure what the results with be" "Everyone is different" "We need more time" "We don't know how long things will be like this" "We have not determined what makes the ANC go up" So, we continue to go and continue to wait because Godot will appear in our play.

She made it to school for a half day but stayed the whole day. I am going to try and get her up soon. She needs 12 hours at least. If Kerry wins do you think we can add a few hours in the day?

The Birds and Side Affects

I have filled the bird feeders. The birds are having a good time. We have had visits from Chickadees, House finches, Goldfinches ( they are brown this time of year) Oregon Junko's, Robins, Red Breasted Flickers, a Pine Gross Beak, Stellers Jay, English and Brown Sparrows, Starlings, a Varied Thrush on it's way south and the squirrels.

My mom has always fed the birds. I remember a time in Michigan when we had so many birds that we a attracted a Shrike. A Shrike is predatory bird that likes small song birds. They catch them and impale them on a thorn or a shortened branch and eat them alive. We knew when he was around because all the birds would become very very quiet. He was an unfortunate SIDE AFFECT of feeding the birds.

Michigan is full of beautiful winter birds. Gold finches, Red Cardnals, Bright Blue Jays. Pinkish Gross Beaks and the brilliant yellow Pine Gross Beak. They have beaks like a parrots and can empty a sunflower seed feeder in less than an hour. They can just sit and eat. The Black Capped Chickadee takes a seed and goes somewhere and pounds the seed open and then comes back for another. Mom always wanted every one to have what they needed but she did grumble a bit about the Gross Beaks. Now with my mother it was never an issue of wanting to hoard the seeds or not allow them to eat until they were full, it was a matter of having to fill up the feeder in the dead of winter with lots of snow on the ground. Once a day is okay, twice or three times is a problem. She often can not find her shoes and was forced to go out barefoot.

The winter morning would be full of colors and quick flights and activity. Then the Shrike would come. It would dive in and try to get it's breakfast. We would all be horrified as we saw a small ball of fluff trying to get away. Everything would go silent and we would wait. The birds knew something was on the hunt. We hated the Shrike but then we had provided a place for the Shrike to hunt. We had concentrated the small bird population by being a feeding station. The Shrike was a nasty SIDE AFFECT.

We did a little research and realized that we had to find a small projectile and start to harass the Shrike each time he came to feed. We put a bucket of fallen apples on the deck and began the harassment. It took a couple of weeks but it finally worked.

Well we are in the middle of winter of Mary-Elizabeth's treatment. We have administered lots drugs to M-E. Each has the ability to attract a Shrike. I have been doing much more research on the long term results of things like Spinal/Cranial Radiation and Methotrexate. I read about things like bone loss, secondary cancers, memory loss, inability to do high functioning math concepts, loss of ability to concentrate, problems with peers do to loss of social skills, the list goes on and on. Each drug that we have introduced has long and nasty potential for a flock of Shrikes.

But then what do you do? I don't see any options other than to continue to sign the consents and pray. Maybe we will be able to find a way to toss a few apples at all the Shrikes. We do have apples and we would never decide to not feed the birds. How could we not keep the feeders full. The joy, beauty and amusement they bring to our lives is priceless.

She is Up Three Quarts

I took her in and they gave her two liters of fluid. Amazingly she was able to eat a PB&J. It evidently goes likes this: If you are dehydrated, you get nauseated and then you cannot eat or drink and you get more nauseated and then you cannot eat or drink and then when you do finally try, you throw up and then you cannot eat or drink.

I didn't wait for a serious crash. I took her in for a "bolus of saline". The plan was to be there by 10:00, out by noon and then to school. Oh, yes there is that time vortext hospital thing that confounds me every time. I am evidently a very slow learner.

We arrived. Vitals. She is almost down 30 pounds. Her heart rate was 123. They drew her blood and she got hooked up to the fueling station. Drip, Drip, Drip...............750 drips a minutes for 9 million minutes. Within 30 minutes, she was starting to look more herself. Hydration is such an under rated concept. I figured we were almost out of there and then the test results came back.

ANC 160 down from 588. Conclusion:the chemo is working. Result: No school. She had been there for only a few hours on Wednesday and was more than ready to go back. Friday is a dance and she was sent the perfect Faux Rabbit Vest and has new portable hair and ........Can you just hear the heart breaking?????????????????????????

My stoic little girl just said, "But Mom that is just not fair!!!!! " No arguments, no complaints just a short poinent sad statement.

They then set me up to "administer infusion therapy" at home. We came home with half of the Pacific Ocean (Saline) for the refridgerator and a friend for my now much beloved BlueBerry (I have chosen to call mine a BlueBerry. It is Blue and everyone needs to know that it is stupid to call it a BlackBerry by the way.) The new friend is $4000.00 handheld IV pump. It is very cute. Lots of buttons and the ability to beep at a whim for many strange and yet to be understood reasons. It came with tubes and white syringes and lots and lots of instructions.

You can not believe how happy it made Mary-Elizabeth to go to bed with a small beeping thing and a liter of saline. I tried to disconnect her a few minutes before it was done at six this morning and she would not let me. Every bit of fluid went into her PIIC line. I seem to learn a new thing or two each day.

Well I have to do some constructive work and pick up the house. The house fairies are not being cooperative. Stuff seems to remain in the same spot where I left it. Imagine that being the case.

Oh, here is something to ponder. We have two Katsura trees in the front of the house. One turned and lost its leaves about three weeks ago. The other waited almost two weeks to turn and has finally decided to drop its leaves. The thing that is curious is that the Slow Dropper is also budding out as if it is Spring. I guess over achieving is every where.

I Think She is Becoming An IV Addict

She won't drink or eat. This is a new twist in this ever changing tale. I think she wants to go to the hospital and have some IV fluids. That may sound like a weird thing to want but then what has been normal during the past two months. She loves how she feels when her body is fully hydrated and they love to hydrate at the hospital. They love to measure what goes in and what goes out.

Everything tastes bad to her. We have tried almost every kind of bottled water, tap water with ice, and without. I put some fresh squeezed lemon in cold water, no go. Tea, fruit, peppermint, regular. Juices, apple, orange, mixed. Milk, regular and chocolate. For the first time in her life she has been told she can unlimited non-caffeinated pop and she does not even want that. She has been drinking a bit of orange juice but then not enough to keep a gnat hydrated. She has that stubborn steak that she gets from her father and she wants 1500 units of D5 saline and she is bound and determined to get it.

She feels so much better when the fluids are moving. No need to taste, no need to worry about spilling, no worry about drinking at the right time or any given amount. The IV is akin to breathing. They change the bags when they are empty. It is just a cake walk. I wonder if there is a support group for those addicted to IV FLUIDS. I guess I am going to have to address the issue today.

She has Become Sleeping Beauty

It is so odd. She is sleeping almost 20 hours a day. My bright, active and very interactive child has gone somewhere. No matter what I do I can not find her. She has withdrawn into her cave, bright pink of course, and I don't know when she might re-emerge. I don't know if I am not being hard enough on her or if I am being unrealistic about what she should be able to do.

See! we always return to the guessing game: Everyone is different, No one really knows, You just have to wait and see, Nothing is certain, Time will Tell. I hate all of those phrases. What do they call those? Platitudes.

Well I have work to do at home and the set up is almost 100%. I may try and hook up a printer today but then, Every one is different.

Her Bone Marrow is Bouncing Back

After reaching all time lows on Friday of last week, her bone marrow is back working. It sort of goes like this:

1. M-E's over achieving bone marrow produced too many white blood cells in an attempt to keep up and surpass all the other bone marrow in the class. (This is akin to padding of high school applications. Lots of that is about to begin in ernest among the 7th grade class.)

2. To curtail over achieving, strong toxic chemicals are dumped into the body to teach the bone marrow more reality based cell production. The treatment does its job because the dumpers have lots of experience. They understand what is going on and can bring a halt to the marrows bad behavior. ( People that review high school applications know that a potential 9th grader does not: play 9 instruments at concert performance level, speak and write 22 languages including Matueati, volunteer at 12 soup kitchens and knit bandages for the war in Iraq.)

3. Once the dumping is finished, the bone marrow is given a rest to see if it has learned to behave. Like all overachievers, the bone marrow believes that no one is watching and begins to work again. It starts slowly at first but then gets reved up. If left alone, it will return to it's bad over achieving behavior. (When the 7th graders begin to have nightmares and ulcers, they enter much needed stress therapy but only after dropping one of three "traveling team sports" to clean a few moments a weeks for therapy and the required 2.3 hours of sleep recommended by the Educational Consultant. )

4. Once good production begins and heads back to normal, the process is repeated several more times. More Chemicals, more non-production of cells to be followed by normal production. ( Speech, tennis and how to sleep while walking between class lessons are added for more rounded presentation.)

Bottom line: Hopefully somewhere along the way we get it right. The Bone marrow decides to just be normal. Because we all know normal might be good after all.

It is Fall and the Hair is Falling

I never realized how attached I was to her hair. She has never been bald before. She came screaming into this world with a full head and it is has been only growing and more beautiful every year. Johnny took over hair duty several years ago. Jerry Tapia, our long time hair dresser, knows better than to cut it any way that can be detected less he incur the wrath of Yaya.

When the all diagnose was given, we didn't ask about the hair for a few days. Everyone assured us it was doomed. The Chemo kills " rapidly dividing cells" hair, white blood cells, red blood cells, cells that line your intestinal tract and sperm cells if your male.

We have been indecisive on how to react. About two days after she was in the hospital, she had a roommate that has only a dozen or so strands of hair left. We all looked at Tamra and even M-E thought it was time to shave her head. We talked with Karyn, our beloved nurse practitioner, and she told us to wait. That was great advice. We did shorten the hair to her chin. It was cute and more manageable for a while.

It did start to go, first a few strand on the pillow, then a brush full and then the dust bunnies became much more like dust elephants. Hair was getting everywhere. She did manage to keep enough during radiation to protect her skin. A few days after the end of radiation, Jerry came and gave her a Mia Farrow cut. It was time. I snagged a piece. I have a piece from when she was a baby. It is dark and very brittle. It has been through a lot but then so has Mary-Elizabeth.

We went with Alison to the wig store and we bought a cute wig. She did not want her head shaved and is a bit reluctant about her hair. She is in such a deep quiet place right now that it is hard to tell what she is thinking but I am sure she is worried everyone will stare or make fun of her. That is a middle schooler in her. I think ridicule is their greatest fear and no amount of reassurance will relieve that apprehension.

She has always been a child that likes things to be the same. There is nothing that is the same. We are making progress but a weariness has set in on everyone. This should be the worst of it. On the 25th of October she has to be evaluated to see if she can start the next round of Chemo. I am much less anxious about starting this time. She has responded so well to the last round. There has been lots of destruction of cells, she may need some time to let her body repair itself.

I just have to say that the hair going has made me sad, so very very sad. Each small pile I find jolts me a bit. It is hard to deny what is happening when you see it go. This is real, this is not a bad dream. This is our reality. I guess we are a bit like the barometer in the hall, it has dropped lower than I have ever seen it but one thing we know is it does go backup after the storm passes. The storm and the rain and the tears will pass soon.

I am Thankful to Be a Family Law Attorney in Seattle.

I have been a family lawyer for almost 18 years. I always figured that I was serving my term in purgatory while on earth. When I left law school and headed to the big city, I proclaimed in a loud and haughty voice: "I don’t know what I am going to do but it won’t be family law." God has a strange sense of humor.
Over the years, I have struggled with my profession as a lawyer. I have whined and complained. I have bemoaned the fact I can not seem to find another profession or as Oprah preaches " To find my true calling". I have even stopped practicing for a year only to find my way back into the "life".
Until recently, I really was disgruntled on many days I was in the office. I like to work so it was hard for me not love every moment I was working. It took me a while to identify was so distasteful about being a family lawyer. I finally figured out that I did not like using my skills and expertise to be mean to other people. I also hate to disappoint those around me. My clients always had the aura of despair around them and I always felt I never really did get then enough. Clients seem to imbue their attorneys with the ability to change the past and make things right. No matter how hard I have tried, I can not ever really make the pain of a lost marriage and broken family go away. I simply don’t have super human powers.
God has a sense of humor and events of the recent weeks have made me finally love and be thankful for my profession. On August 14, 2004 I had a life changing moment. (Oprah would have been proud.) I received the news that my lovely, sweet, intelligent, loving daughter had High Risk Acute Lymposytic Leukemia with Central Nervous System involvement. She is facing a 2.5 year treatment protocol. The first year is very intense. I have spent literally weeks at the hospital for her many chemo and radiation treatments. (I am glad to report she is in remission and her chances for full recovery are very high.)
This unwelcomed news gave me an entire new perspective on my profession. I soon discovered that lawyers, judges and clients are the best! The first day I was able to back in the office I realized how good it was to be able to do what I do. I can actually effectuate change in people’s lives. If feels good to work with other people’s problems.
I am so thankful to have clients that asked me how M-E is doing before they explained their current dilemma. What a relief to have Judges that granted changes of case assignment areas and continuances with understanding. I can not begin to thank and be thankful enough for my opposing counsel in my cases and my former opponents for their curtsey, understanding, flexibility and cooperation. Their offers of help often brings me to tears.
I am so thankful to have a profession that lets me work from home. I am thankful to be part of a firm that fully supports my need to bill less and be with my daughter more. I am thankful to have such great colleagues and professionals to work with every day.
I am very thankful to be a Family Lawyer in Seattle.

Sally A. Lanham, Mikkelborg, Broz, Wells and Fryer

We have known for two months.

I was very testy yesterday. Mary-Elizabeth has shown signs of regression over the past few weeks. She needs much more of what she used to call "Mommy Time". She needs more of my attention than I realize. It is more of an attention thing. She is very inwardly focused and very quiet much of the time. She is concentrating on healing and managing the daily assault of treatments. She needs me to be with her and just hold her. I realize that this quiet time is a gift. Most 12 year olds are pulling away from all parental contact.

I am acting like a petulant 3 year old if everything does not go my way. Flu shot refusals sent me into hysterics. I love the Swedish Medical Clinic in our office. "We don't care if you need the shot. You are not our patient. You should get it from your doctor." I now understand the panic felt by an addict. "But I need it!!!!!!!!!!!!!!!!" I made a typo in a letter I was trying to get out after hours last night and I was in tears about being a bad typist. At that point I was more of tired 3 year old. Maybe this will keep me young. Do you think it is bad that I want CoCo Puffs for breakfast.

Two months. It so feels like a lifetime. The memories of normal are fading rapidly. Yesterday we had the "X-Ray to look for the possible blood clot in the lung" fun. (She is okay). I see normal and know it is out there. I see people on the way to work, upset that they have to go. I want to shake them and tell them to enjoy each and every moment they can go to work without having to manage a health crisis at the same time. I see a mother storm out of a restaurant angry that her beautiful 10 year old daughter does not use chop sticks correctly. I see father's that don't spend every possible minute with their children that they can not knowing what it is like when a simple cold can keep them away.

We are at a very dicy time right now. After the last round of treatment her system is still crashing. ANC : Monday 288, Wednesday 150, normal 4000. Her White Blood Cells are less than 500: Normal 10,000. Her bone marrow will start to recover soon. The doctors are happy but also worried. Low counts mean the treatment is working. Low counts mean she is in the danger zone for nasty infections. No wonder I am going crazy. Nothing is what it should be.

Well I am going to work and trying to do some good in the world. I will get through the piles and will make sense of some things. I will not loose it today. I will find something to smile about. I will continue to try and remember this is only a phase and it too will pass. We are at day 25 of 63 of Consolidation.

Pray for me and everyone I deal with today. Two months, 28 more to go.

They Came at Her Like a Swarm of Bees

We went the Children's for what I thought was a simple shot and some IV Chemo. I had become complacent. Everything has been going so well. We have not had any surprises. I figured we had this phase handled. After 14 doses of oral chemo, 12 doses of radiation and 9 doses of IV chemo, how bad could it be. She is feeling much much better. She even has color now that she had her three pints.

Well, just when you think you have it figured out you go to Clinic. Today was not a great day for anyone. Things were not going well at the front desk. The computer was not happy. First thing we learned was that 15 families have been moved out of the Ronald McDonald House. All the rooms were marked with orange isolation signs. There is an outbreak of Chicken Pox. Chicken pox is very very bad for people with compromised immune systems. I think they feel like it is the 11th century and the cats have been killed and the rats with the fleas are out of control.

We saw Karyn our Nurse Practioner ( never let anyone but one of these people do your spinal tap chemos). She gave us bad numbers but after examining M-E said school for a couple of days would be okay since she looked great.

I really needed M-E's shot needed to be done by Noon. They forgot to tell us that it was really three shots. Mom can do lots and lots of stuff but M-E needs her mom for shots.

Shots are dreaded more than many many things. These kids have so many procedures and so much that makes them miseralbe The last straw seems to be shots. The kids are getting flu shots and the screams are amazing. They had to hold down a 9 year old. The look on those nurses faces when they headed behind that curtain was very frightening. Then the screaming was began.

We knew Mary-Elizabeth had to have a shot today. We did not know that she had to have three big shots at the same time. Three big needles attached to huge syringes. It looked more like they were basting her than treating her. The nurses all came into the room armed. I looked away and they counted. One, two three....... And then she squoozed my hand very very hard and said Ouch. That was it. No screams and I did not faint.

All in all it was a good day except for the attach of the killer bees. M-E felt she deserved something for having three shots in one day. I suggested a pearl. I suggested we start to buy single pearls for each shot and by then end of this she would have a a strand. Oh, no, she does not want round pearls they are just too boring. She would like one of those really cool baroque pills.

I guess she will never be boring. She is truly a unique spirited.

WE HAVE SETTLED INTO THE SIEGE

Remember those old tales of sieges. A castle was attached for weeks and months and years. I often wondered if time was reported in the bible like 40 days and 40 nights. God could not just say that it took a very very long time.

I realized yesterday that we are in the middle of a long seige. We have hunkered down for the winter and will enjoy moments. We are having some good moments. Whitney is here for the weekend. She was able to go to a party last night. A few of her friends got together for some movies for a birthday party. She was tired but happy. We have to have a few moments of fun.

M-E seemed to have weathered this first part of the Consolidation. She has done great. She has been nauseated most of the time and has lost about 5 pounds but will be hungry this morning. She did not have any of the liver problems associated with the Mercrapterprim. She never had a fever with Ara-C. She had a couple of head aches and was very tired but she did not suffer from any the obvious affects of the the radiation. My sister told me not to hit M-E on the head because I might be upset when I hear the sloshing in her skull. She has had some short term memory issues. I now have Dorey. (The Ellen Degeneris character in Finding Nemo)

Of course she and Mom are using "We cannot Remember" for lots of things. It goes like this: Did you brush your teeth? Oh, how can we remember to do that! They are very very bad.

She has only one scheduled appointment this week for the Clinic and we are going to see how much school she can handle.

We are in a waiting mode. Waiting for the troops outside to go home but we know that they are just waiting. Waiting for the opportunity to strike. We are prepared for the next strike.

The Last Day of Radiation

Well, we are at the end of the first two weeks of Consolidation. At no time will regularly scheduled treatment be so grueling. 12 radiation treatments, 9 doses of Chemo IV, one dose of IT treatment ( Spinal Chemo) 14 doses of oral chemo. Now we wait and see. What we have seen so far has been remarkable. She seems to be tolerating the treatment. She has had some complaints, Mump like symptoms, head aches, nausea and the hair is going, and going and well more on that later. She has needed 3 pints but it perked her right up. Unless her number crash she will be back in school on Tuesday.

She never complains except about brushing her teeth. We have been arm wrestling about that. She let me know today that the toothpaste tastes icky. Smells are becoming more of a problem. This too will pass.

My new assitant Dawn made a great suggestion. Give blood. M-E really really benefited from it. Also everyone needs to get on to the Bone marrow registery.

Mrs. Jones Loved the Jelly

I love my mom. She is the greatest. She is thoughtful to the Nth degree. She is a bit weird and we worry about her. She does stuff like cut my trees to watch the girls across the street when they move in. She can tell you a lot about their behaviour. She makes sure I go to bed when she is tired and if you call and ask what you can do she will tell you to call back in six months. She is just like that. She doesn't make M-E do her Lovenox shots all the time but will force feed you vitamin C on a whim. She let's Mary-Elizabeth be on computer way to much, complaines about how bad it is for her and then tells me I can not complain about how bad the computer is for kids.


She has taken M-E to her appointments most of these last couple of weeks. Radiation evidently is given to many people over a period of time. They keep running into the same people all the time. Mrs. Jones is an older black women that comes every day for some type of radiation. We won't ever know for what or the outcome but radiation can never be good. She has had some problems with burns and been uncomfortable but has always had a good attitude, a smile for everyone and some words of encouragement. Mom took her some jelly today. Sour things taste good and Mom made her day. I love our Mom.

She is off to the Re-Fueling Station

Well, the Doctor's were tickled. Things like low blood counts make them giddy. It let's them know that the treatment is working. M-E and my mom are off the Hem/Onc clinic for her first blood transfusion. Everyone says she will feel like taking on the world after she gets someone else's healthy red blood cells.

She is such a trooper. She does not complain. Her biggest complaint is that I keep trying to get some food into her.

As a species we must have such a deeply rooted survival instinct. Never does she complain about treatment or any of the side affects. She just does this day after day and has a positive attitude. We see lots of kids every time we go. The only ones that seem to be a problem are the 5-6 year old boys. They can pitch a fit that makes Mt. St. Helen look calm. The boys seem to have been abandoned by their mothers and lots of father's bring them to clinic.

Mom is trying to put up inside Christmas lights. M-E is resisting at this point. I know my mother. The Marys in this family set their jaws and do what they want to do and don't let much get in their way. I will let you know when the lights go up.

Now I know where M-E gets her strength. She comes from a long line of surviving Marys.

The Magma may be Coming

They are waiting to see what will appear today at Mt. Saint Helens. I am curious and very interested in all of that. Of course I am one of those that wonders why they don't know more. Why they have not figured out a better way to determine if the lava is going to flow? Why are there so many questions left unanswered?

The fact is there is very little we really know. We know there are hurricane's. We don't know where they are going to go or how much damage they are going to do. We know there are erupting volcanoes but we don't really know when or how much they are going to erupt. We know M-E has luchmia but we don't know if it is really gone or when or if it will come back. I hate uncertainty but then that might be the only certainty we have.

I am bothered by all the reminders that relapse can happen with the disease. We are in this early part of the treatment and are just trying to get through the early phases. One day, one appointment, one shot at a time. I very seldom let myself look more than a couple of weeks ahead.

The first week out of the hospital, I ran into someone I knew. Her daughter is 8. She relapsed just after going into the maintence phase of treatment. ( We don't reach that for another 10 month.) Our most recent 5 year old roommate relapsed just after finishing her two years treatment. I wonder if these people are in my path to let me get ready for the fact this part of our lives will never end or if it is to remind me that we are very lucky and I should just count my blessings. My attitude and choice of messages is very much dependent on my stress level. It is Sunday and I am at work and I am beyond stressed about work and getting everything done. I know that getting everything done is not possible. I think I need to give myself a break but then I am not very good at being easy on myself.

The getting everything done comes from my father. He is the voice that let's me know I need to work harder and bill more hours. He is the one that believes long hard hours of nose to the grindstone is the answer. If we follow the protocol things will work out. Mother gave me the gift of the "worry zone" . Things are either in the zone or not. If they are not in the zone you don't worry. If they are in the zone, you take positive steps and fix it. Never do you dwell and worry needlessly. She told me this morning that I should not worry about the dream where the lava was all over and I had to break my windows and crawl out of the bedroom to get away from it.

Translation: I should not worry about Mt. Saint Helens or a relapse. I should get to work and bill more hours.

We are done with week one.

WE are done with week one of Consolidation. 7 doses of radiation. 4 doses of ARA-C. One dose of Cytoxon, 7 doses of Mercraptaprin (my spelling) and a lot of other stuff. She is up and doing homework. She is remarkably resilient. She has a good attitude and a great spirit.

She is getting more and more tired. Her color is fading and the hair is going. Each and every treatment is like a knife into my heart. The pain I feel is so real. Every time she gives herself a shot, I simply turn away becasuse I can not stand to watch it.

As Mom's we are simply hard wired to protect our children. In the very beginning God knew we, the mother's, had the ability to keep the children safe and make sure the species survived. I know that each and every treatment is necessary. I know that we have to go through the whole process. I know that we are going to beat this thing but the process is so arduous...... I just try to have a good attitude and thank God that we don't live in another time. I remember the part of the "Year of Wonder" where the step-mother tried to comfort the mother whose two young children had died of plague. The stepmother says " I told you not to get attached to them until they are three years old." We are very lucky that my biggest complaint is that the treatment is difficult. We do have treatment, lots of great friends and Sunshine!

Mom is here for a couple of weeks. It is such a great help. Dad took the train from hell to Eugene. He did not get home until 9:00 pm. He reports that you meet interesting people on the train.