The Last Dose of Doxirubinson and we are glad. I should not have read this today.

Doxorubicin
(dok-so-ROO-bih-sin)
Brand names: Adriamycin®, Rubex®
Chemocare.com uses generic names in all descriptions of drugs. Adriamycin is the trade name for doxorubicin. Rubex is another name for doxorubicin. In some cases, health care professionals may use the trade name adriamycin or other names rubex when referring to the generic drug name doxorubicin.
Drug type: Doxorubicin is an anti-cancer (“antineoplastic” or “cytotoxic”) chemotherapy drug. This medication is classified as an “anthracycline antiobiotic.” (For more detail, see “How this drug works” section below).
What this drug is used for:
Cancers treated with doxorubicin include: bladder, breast, head and neck, leukemia (some types), liver, lung, lymphomas, mesothelioma, multiple myeloma, neuroblastoma, ovary, pancreas, prostate, sarcomas, stomach, testis (germ cell), thyroid, uterus.
Note: If a drug has been approved for one use, physicians sometimes elect to use this same drug for other problems if they believe it might be helpful.
How this drug is given:
Doxorubicin is given through a vein by intravenous injection (IV). The syringe needle is placed directly into the vein or central line and the drug is given over several minutes. Doxorubicin can also be given by continuous infusion. Rarely, doxorubicin is given by injection into an artery. There is no pill form of doxorubicin.
Doxorubicin is a vesicant. A vesicant is a chemical that causes extensive tissue damage and blistering if it escapes from the vein. The nurse or doctor who gives this drug must be carefully trained. If you notice redness or swelling at the IV site while you are receiving doxorubicin, alert your health care professional immediately.
The amount of doxorubicin you will receive depends on many factors, including your height and weight, your general health or other health problems, and the type of cancer you have. Your doctor will determine your exact dosage and schedule.
Side effects: Important things to remember about the side effects of doxorubicin:
You will not get all of the side effects mentioned below.
Side effects are often predictable in terms of their onset, duration, and severity.
Side effects are almost always reversible and will go away after therapy is complete.
Side effects are quite manageable. There are many options to minimize or prevent them.
The following side effects are common (occurring in greater than 30%) for patients taking doxorubicin:Early: (within one week after treatment begins)
Pain along the site where the medication was given
Nausea or vomiting
Later: (within two weeks after treatment begins)
Low blood counts. Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding.
Nadir: Meaning low point, nadir is the point in time between chemotherapy cycles in which you experience low blood counts.
Onset: 7 daysNadir: 10-14 daysRecovery: 21-28 days
Mouth sores
Hair loss on the scalp or elsewhere on the body (called alopecia). Most patients do lose some or all of their hair during their treatment. But your hair will grow back after treatment is completed.
The following side effects are less common (occurring in 10-29%) for patients taking doxorubicin:
Early: (within one week after treatment begins)
Eyes watering
Urine may appear red, red-brown, orange or pink from the color of the medication for one to two days after you receive a dose.
Later: (within two weeks after treatment begins)
Darkening of the nail beds.
Darkening of the skin where previous radiation treatment has been given.
Problems with fertility – ability to bear children. (occurs in about 10% of both men and women – this should be discussed with your doctor prior to therapy).
A serious but uncommon side effect of doxorubicin can be interference with the pumping action of the heart. You can receive only up to a certain amount of doxorubicin during your lifetime. This “lifetime maximum dose” may be lower if you have heart disease risk factors such as radiation to the chest, advancing age, and use of other heart-toxic drugs. Your doctor will check your heart function before you may take any doxorubicin and will monitor your heart closely during your treatment. Dose-related heart problems can occur as late as 7 or 8 years after treatments have ended.
Delayed effects:There is a slight risk of developing a blood cancer such as leukemia years after taking doxorubicin. Talk to your doctor about this risk.
This list includes common and less common and important side effects for those taking doxorubicin. Side effects that are very rare – occurring in less than 10 percent of patients – are not listed here. But you should always inform your health care provider if you experience any unusual symptoms.
When to contact your doctor or health care provider:Contact your health care provider immediately, day or night, if you should experience any of the following symptoms:
Fever of 100.5º F (38º C), chills (possible signs of infection)
Blistering at the IV site
Shortness of breath, wheezing, difficulty breathing, closing up of the throat, swelling of facial features, hives (possible allergic reaction).
The following symptoms require medical attention, but are not emergency situations. Contact your health care provider within 24 hours of noticing any of the following:
Mouth sores (painful redness, swelling or ulcers)
Nausea (interferes with ability to eat and unrelieved with prescribed medication)
Vomiting (vomiting more than 4-5 times in a 24 hour period)
Diarrhea (4-6 episodes in a 24-hour period)
Fast or irregular heart beats
Unusual bleeding or bruising
Black or tarry stools, or blood in your stools or urine
Extreme fatigue (unable to carry on self-care activities)
Swelling of the feet or ankles
Precautions:
Before starting doxorubicin treatment, make sure you tell your doctor about any other medications you are taking (including over-the-counter, vitamins, or herbal remedies). Do not take aspirin or products containing aspirin unless your doctor permits this.
Do not receive any kind of vaccination without your doctor’s approval while taking doxorubicin.
For both men and women: Use contraceptives, and do not conceive a child (get pregnant) while taking doxorubicin. Barrier methods of contraception, such as condoms, are recommended. Discuss with your doctor when you may safely become pregnant after therapy.
Do not breast feed while taking this medication.
People with congestive heart failure, those who have already had high doses of this drug or a similar drug, and those with permanent problems with blood counts (bone marrow suppression) cannot receive this drug.
Self care tips:
Apply ice if you have any pain, redness or swelling at the IV site, and notify your doctor.
You may be at risk of infection so try to avoid crowds or people with colds, and report fever or any other signs of infection immediately to your health care provider.
Wash your hands often.
To reduce nausea, take anti-nausea medications as prescribed by your doctor, and eat small, frequent meals.
To help treat/prevent mouth sores, use a soft toothbrush, and rinse three times a day with 1 teaspoon of baking soda mixed with 8 ounces of water.
Use an electric razor and a soft toothbrush to minimize bleeding.
Avoid contact sports or activities that could cause injury.
Avoid sun exposure. Wear SPF 15 (or higher) sunblock and protective clothing.
Drink two to three quarts of fluid every 24 hours, unless you are instructed otherwise.
Get plenty of rest.
Maintain good nutrition.
In general, drinking alcoholic beverages should be minimized or avoided. You should discuss this with your doctor.
If you experience symptoms or side effects, be sure to discuss them with your health care team. They can prescribe medications and/or offer other suggestions that are effective in managing such problems.
Monitoring and Testing:A baseline heart evaluation is recommended before starting treatment. A full blood count will be done regularly, and a heart function test will be done as your doctor prescribes. Various tests to monitor the function of other organs (such as your kidneys and liver) will also be ordered by your physician.
How this drug works: Cancerous tumors are characterized by cell division, which is no longer controlled as it is in normal tissue. “Normal” cells stop dividing when they come into contact with like cells, a mechanism known as contact inhibition. Cancerous cells lose this ability. Cancer cells no longer have the normalchecks and balances in place that control and limit cell division. The process of cell division, whether normal or cancerous cells, is through the cell cycle. The cell cycle goes from the resting phase, through active growing phases, and then to mitosis (division).
The ability of chemotherapy to kill cancer cells depends on its ability to halt cell division. Usually, the drugs work by damaging the RNA or DNA that tells the cell how to copy itself in division. If the cells are unable to divide, they die. The faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink. They also induce cell suicide (self-death or apoptosis).
Chemotherapy drugs that affect cells only when they are dividing are called cell-cycle specific. Chemotherapy drugs that affect cells when they are at rest are called cell-cycle non-specific. The scheduling of chemotherapy is set based on the type of cells, rate at which they divide, and the time at which a given drug is likely to be effective. This is why chemotherapy is typically given in cycles.
Unfortunately, chemotherapy does not know the difference between the cancerous cells and the normal cells. Chemotherapy will kill all cells that are rapidly dividing. The “normal” cells will grow back and be healthy but in the meantime, side effects occur. The “normal” cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowel, and the hair follicles; resulting in low blood counts, mouth sores, nausea, diarrhea, and/or hair loss. Different drugs may affect different parts of the body.
Doxorubicin is classified as an antitumor antibiotic. Antitumor antibiotics are made from natural products produced by species of the soil fungus Streptomyces. These drugs act during multiple phases of the cell cycle and are considered cell-cycle specific. There are several types of antitumor antibiotics:
Anthracyclines: Doxorubicin, Daunomycin, Mitoxantrone, and Idarubicin
Chromomycins: Dactinomycin and Plicamycin
Miscellaneous: Mitomycin and Bleomycin
Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.

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Less common - Skin Reactions
Less common - Sexuality
Common - Nausea & Vomiting
Common - Mouth Sores
Common - Low Blood Counts
Common - Injection Site Reactions
Common - Hair Loss
Less common - Eye Problems


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Sisterhood of the Traveling Pants/Star Wars and the great dividers

Tastefully handled (even though the child that had the fling with her coach is okay afterward because he comes to say he is sorry,) this is not the time I should be watching 12 year olds die of lukemia because they have stopped treatment. Little remembered side plot from a book I read a couple of years ago. It was not the most important point in the story at that time. Boy........ what a difference a moment in time makes.

It was fun going to the movies. I truthfully did not see a single guy there. They were watching weird futuristic creatures get decapitate. Oh well.

Star Wars has become the new Viet Nam. The rule used to be that you could not date anyone that did remember watching the body counts on the T.V. news. Now we have to change the rule. Only people that saw Star Wars in the movie theater in 1974? are allowed to date each other. I guess we need to stick together. I guess that is what makes us a generation our memories: the Beattles coming to America, Death 0f Kennedy, the First Walk on the Moon, Vietnam, Watergate, Kent State, Nixon Resigning, Death of John Lennon, The Berlin Wall coming down, Tineman Square, all of those sorts of things. I guess we all have moments that define our point of view and our lives.

Some outside events, some inside moments. We all get out own selection and if you are not present when they happen, they never quite affect your life the same way. I remember the death of Elvis but then he was not a central figure in my life. He is more a moment to look back on. There has been a lot of James Dean discussion but then I missed his time also. Frank Sinatra has a different affect on my mom then he ever did on me. The original Star Wars still makes me giddy. M-E and her contemporaries just complain about the fact it is not very glitzzy.


We are living through an event with M-E that will affect us like 911. It will color our perception of the world in a way that it won't be like everyone else. I have been so into this deep cavern for so long that I have not noticed how this has affected others. Most people try to keep it away from me. The 7th grade is doing a healing ceremony for M-E next week. She was a bit unsure about it but has agreed. I was discussing this with my mom and she said, "Sally you have to let them do it. People feel like they want to do something and there is nothing they can do. Nothing any of us can do but wait." I could sense the fear in her voice but also the great strength that is there. I guess that is why we have to hold each other extra close, listen extra hard and know that while there are lots of big plots swirling around us there are some little ones that mean as much ot some people.

We all saw the Sisterhood of the Traveling Pants. It was a good movie, but just a very different movie for me.

Why I hate to Fold Laundry and do other mindless tasks

My sister pointed out that I am dead from my neck down. I could be impaled on a fence post and I would be oblivious to the event. This in some ways is good and in others it is bad. The good part is I can get up every day and keep going, the bad news it that I don't quite understand why I have a temperature of 101 for no apparent reason every evening now. It seems to last for 5- 6 hours. Oh, well it is gone today, it must not be something I need to worry about right now until tonight.

So back to the point. Cloth folding, dish washer emptying, back deck sweeping. These are mindless tasks, in other words, tasks that take no brain power to complete. While doing such tasks my mind wonders. Wondering brain waves are bad noogies right now. If I have a moment that my brain is not engaged things go something like this:

'WE are almost done but then are we really done? Will there be a time that we don't worry? Will I ever get to be a Grandmother, will she ever marry. Will he be a nice boy or will he have tattoo and be a slacker and someone that only wants to work at 7-11. How will they pay for her ongoing medical care? When did tattoos become so great, why did Cher get her's removed. And why did she do her nose and did it change her singing style. Do I care? When will the jury be back on Michael Jackson and why does Jerry T have a white Thriller jacket and not a red one? When should I get my hair done. I should not complain, I have hair. I need to take a shower and I need new shampoo and maybe I will cut my bangs but then Jerry will yell at time for doing so but then why does he have anything to say about it. I should call him and I should call some other people. I think Simon is having a graduation thing and I can not believe that he graduating but then that's what happens when kids grow up. I hope M-E gets to graduate. I wonder if she will and if she does I wonder if she will get to go to the college of her choice or if there will be money for that given all the medical bills we are racking up because the policies have changed and no one will talk to me about how to determine what I really owe and now that Bush has changed the bankruptcy laws and I have missed so much work , how will I be able to take care of it all and should be worrying at all given it is all speculation and I know I am supposed to keep a positive attitude but then that makes you so much more surprised when things don't work out but then I feel like if they don't work out as we hope then I will be the one that failed because I did not keep a positive attitude.

SEE I should not fold cloth.

The week is not going as planned

Don't you think I would have learned. I would be able to predict a bit. I had no worries about this Delayed Intensification Phase. We had done it before in fact my memory is that is was easy. The Chemo was not bad, the worst part was the Dexemethozone and then that was only 28 doses. 14 one week a week off and the 14 more. Cake. M-E was not very nausiated and she sort of sailed. Okay, well that was the plan. Now I am sitting here with a child that has not been to school for two weeks. She is exhausted, and miserable. Each part of her hurts and she is so emotionally upset about so many things. She cann't make it to school but then she cann't stand being at school. She is so very very worried about life and this summer and next year and......... pick a topic.

Her reserves are spent. We are just done. Sick and tired. That is the only thing I can say. Neither of us want to do this anymore. I want to know waht tomorrow will bring and have some predictablility in my life. I am ready to jump back into the real world. I want to talk with people and feel like there are more topics in the world or questions to answer besides "How are you?" I would like to answer, great, we are busy we have been to a play, we have done some traveling, we......................... are not just boring people that sit at home and try to hold it together. We do more than watch movies or sit on the couch in quiet moments and try to remember our old life. We have hands not ravaged by Purell and eat salad with no fear.

I don't mean to complain but this seems to have gone on forever. I guess I just need to get this out.

Please know I have appreciated every one and everything that everyone has done. We should be back to some sort of normal by the end of summer.

I am not sure what day it is.

We have been pretending that things are going great. In reality they are. With an underlying monster lurking.

She had her day one chemo and had a pretty rough time but we can do it. The part that makes this part of treatment difficult is the Dexemethezone. I hate that drug. If I have said it before, I apologize but I just hate it. I hate how she it, I hate what I see it do to her body. I hate the disruption in her sleep and her energy fluxuations. I hate the mood swings and the tears and the anger and the frustration. It is hard on all of us. The good news is that it makes her ANC sky rocket. She should be Sushi worthy by the end of the three week period.

I love that she feels she can express all of those things but I want this to be done. She has three more doses this week. One tonight, if I can get her to bed before I fall a sleep, two tomorrow and then we get 7 days off. 14 more doses and we are done with it for this phase. She has some prednisone in maintenance but it could not be worse than this stuff.

I feel like we have both had a bunch of thorns in our feet and we have to get them out. They have starting to work to the surface and fester and we have been able to ignore them but they are there. Slowly they work to the surface and then when it is the most inconvenient, they explode. A bunch of them are just about ready.

We have to get this poison out and out soon.

Sadie update. We did have the invisible fence installed. Sadie is not a great fan but she is also not a glutton for punishment. She has tested the boundary on several occations. She has found that it is consistent. She thinks every now and then that it is gone and will head toward it. Once she went through because I was moving something down the drive way and she received a good strong shock. I am not sure if she would go if there was a squirrel or a cat. She hears dogs walk by and comes into the house and barks at them at the window. She knows that is as close as she can be.

She has also learned that walking happens out the front door and not the back any more. When I say let's go for a walk she heads there. She has also figured out that the collar is the culprit. It is taken off every night and put back on in the morning. She fights me on putting it on but as always, she is a push over for cheese.

I promise to keep you updated better.

The Last Intense Phase: DAY 1

It was hard to get up this morning. We only accomplished part of the appointments. It is the nature of the beast.

The Plan: 8:15 blood draw,
9:00 a.m. appointment,
10:00 with Child Psyc,
11:00 spinal fluid out, Methotrexate in,
11:30 Vincristine and Doxorubinson IV push. Pick the the scary steroids and head home.

The Reality: 8:45 blood draw
10:00 a.m. put in a room to see Dr. No ANC back so no decision can be made about the Spinal Tap
10:00 miss the Child Psyc appointment
10:20 see Dr.
10: 50 Spinal tap
11:15 Vincristine and Doxorubinson
12:30 home.

Not bad. Bad to miss the Child Psyc appointment. But what do you do. I can beat myself up for trying to get everything done in efficient manner. Or I can just let it go.

I did realize that I have not learned much about the whole system. I should have known better. I should know that there is no way Hem\Onc appointments work right. As far as we have come, we still just don't get it.

We are on the path to maintence. The goal is in sight. I counted the chemo dose until the end of this phase and it goes sort of like this.

28 doses of Dexemethosone
14 doses of Thiuguine
5 doses Vincristine
3 doses Doxorubinson
3 Spinal Tap and Methotrexate
1 dose Cytoxon
8 doses ARC

We can do it. If I can live throught the two weeks of Dexemethosone, I can climb Mount Everest and clean out my basement. It is the worst of them all. It is like being on a roller coaster on speed.

I feel like we are both seniors and only two months left until the final summer before we go to college. Remember that feeling. The anticipation, the anxiety, the excitement and the sheer terror. It is ironic that we have hit this phase as school winds down. We will make it to graduation.

We will be the older, wiser individuals that will calm the nerves of the new parents. The ones that have not realized the hospital binder will not do and you must upgrade. They are the ones that look at our children with dread, and some shielded disgust. Our children have lost their hair and even if some of it has returned, it is not the same. They are secretly thinking they will avoid that fate. They don't know yet that it is the least of their worries and that when it happens it does with such stealth that you only notice when you see an old picture or you see a new parent with a newly diagnosed child.

We have earned our stripes and we will cross the line. We will be different people forever. We will be people that live in a very different way.

I have been too close to knowing the reality of loosing a child. I have had to fight with every fiber of my being from not going over the edge. I have had to look every day at Mrs. Shelley's rocker and know that it could be me. I could be the little old lady with the great smile and the sad heart having lost my only child in a sad way. ( I will tell her tale another time)

M-E is planning that moment of crossing. She wants endless Sushi, and raw bean sprouts, and pre-cut fruit, and store sliced ham. Or as she said the other day, "Mom, I want my freedom back." It is nice we will be able to do that for her.

GILDA'S HOUSE

I took M-E and Whitney to Gilda's House last night. They attended a focus group for teens to see if they could help set up a program for teens affected by cancer. Kids who have it, have friends with it, or parents and other loves ones.

They came with a ton of ideas. M-E was the only child with cancer. I suggested that she talk to some people at the hospital and get more kids involved. There is a distinct lack of group emotional support during this process. We have lots of support from the staff and some relationships develop from our contact with other parents but no one has the energy to organize anything at the hospital. Unfortunately this is a due to many unavoidable realities. Time and HIPA are the worst offenders.

There are lots of complications and road blocks to having time for something as simple as a group meeting. Having a child with cancer is a full time job. There are appointments, constant vigilance at home, there are extra trips to the hospital due to emergencies, there are meetings with doctors and extra reading, There is a need to spend endless hours reassuring your child it will be "okay" while knowing you might be lieing. The there is the need to attend to your job and simple things like laundry or taking out the garbage. There is the endless issues with payment of bills that never seem to go away and insurance companies and argument over need for certain costs to be covered. There are co-pays and extra co-pays for the one extra pill you gave her by accident or it fell on the floor. It is all very overwhelming. You get used to it after a while and weave it into your life but then so many other parts of your life simply disappear.

You feel desperately alone. Your friends and neighbors and loved ones try to understand but they don't know what to say or do and they begin to retreat when they no longer can count on you. You begin taking the phone off the hook or not returning phone calls. You cann't tell people what you need or even reach out and make a social call. You become more and more isolated because you can not do the things with them that you used to do. There is an outpouring of heartfelt support and then no recipocation or enough thank you notes or even return phone calls. As I sit here today I can think of so many ways I have not been a good friend to those that have helped us so much. We are all human and people need to know they are appreciated and need to have their souls nurtured. They become afraid to call, and they quit asking because there is so much disappointment in all the "No" we can't do that's or the" we have to wait and see". I have stopped planning anything in the future because I so hate to see M-E disappointed when she misses something. We would have loved to see the Lion King but then who could tell if her numbers would be up or is she would be feeling well enough to go ....... .


As humans we are planners, we need to have some certainty in our lives. M-E and I have no certainty and that is our certainty.

What is worse is running into people that have not seen or talked to you for awhile. They have that guilt stricken look on their faces. I see people at the school that intended to do something for us but for very valid and understandable reasons have not. There is not a requirement that to be a good friend they have to deliver a meal or send a card or haul stuff to good will or do some of the weird things my mother think up for people to do. What a waste of good intentions. I wish people would not feel bad. I am certaint that they have done lots of good deeds and we have been well cared for by everyone. It is sort of like the loaves and fishes story. The food was there when it was needed. The universe is in need of great kindness and it provides everything we need when we need it. We have been so blessed with help and our needs met every day that no one should ever feel they have not done something they thought they should have done. Nothing was ever "expected" and everthing was appreciated when it arrived.

Cancer parents simply don't have the time or ability to reach out of the small area that becomes our lives. Sometimes people take that as a rejection. What I have come to realize is that I have to live in this very precise moment. I can not commit to tomorrow or even next week in a meaningful way. Last night I could have called someone and had dinner with them while waiting for M-E. I did not know for sure that I could make it. I had every intention of going but what if M-E needed me to stay, or she was not able to go or the meeting was planned. I too hate to disappoint and impose. I have called several people at different times and they have not been able to do something at that particular time. They feel bad about it and get all worried and stressed. DON'T SWEAT THE SMALL STUFF .

This continues to be a long journey for all of us. Our old lives are quickly fading and have lost their rhythm. We are on a different path than before and excuse my trite statement, we will never be the same again. When we come out of this cave we will not be able to pick up where we were before because we will be in a different part of the universe. We will be able to incorporate many of the elements of our old lives into the new landscape but it will be different but it will be a great life.

The Crows don't seem to notice much except everything

They annoy some people but don't seem to care. They are a very important part of our world right now. They go about their lives with an air of annoyance. They are annoyed when a bagel is too hard, they are annoyed when a car drives by when eating a street located morsel, they are annoyed when the squirrels challenge them for the nuts or corn. They spend their life in a constant state of being annoyed.

They have a royal Caw fest when the seagulls show up. They squawk at the cats that are too close to food, water, a nesting tree or just because they can. They have a communication network bar none. But despite their attitude, they seem to go through their lives with ease and let very little bother them. They just have solutions for their challenges and problems.

They can be very amusing. Mom found plaster in the bird bath and was severely reprimanded for taking it out. During the construction period they thought it might be food so they were soaking it. I often watch as special morsels of food are stashed for later. There is a spot in my neighbor's gutter that I observed the crow land with a large piece of bread, very carefully pull up some moss and lay it on the roof, put the bread in the gutter and replace the moss. He does this almost daily. I guess it is the crow's version of a cupboard.

They just get on with meeting life head on with no apologies even though they are annoyed.

I guess we need to be more like them.

The Day Looks Gray but then we know the Sun will Eventually Shine

I knew everything that was in the article printed yesterday. Each and every drug has a list of problems that would make a chain of side affects that circled the world. Each and every drug that is given to treat the side affects has a similar list of side affects. It is an endless cycle. I just hate seeing my worst fears in such a concise litany.

The reality of the situation is that we have no choice. We started down this path, not by choice but we stay on it by choice. We cannot stop once started, we have to keep working toward the end goal. We are going to finish this course of treatment. We will do it with a good attitude and sprinkle it with hope.

It doesn't in any way alieve the deep sadness that I feel about M-E's chances for a long happy life. It makes me so sad because I know what a special person she is and how much she has to offer to everyone and to the world. It is what it is. I have no control over the outcome. I can only be here for her and know that I have done what I could for the best outcome. I know there are no guarantees about anything so that is not the focus. It has to be making the moment count.

Letting God and the universe do what it will. Understanding that we have no control give us more focus on what we can change and affect. We don't need to fight against the roaring sea but go along for a ride.

Now I have to go and take a shower and try and earn my keep because I can do something good in that arena.

THIS DID NOT MAKE MY DAY BUT WE HAVE TO TAKE THIS CHANCE.

Tuesday, May 17, 2005 - Page updated at 12:00 a.m.
Childhood-cancer survivors often seriously ill later
By The Washington Post and The Associated Press

Two-thirds of children who are cured of cancer in childhood end up with at least one long-term health problem arising from their treatment. One-third have severe complications such as mental retardation, lung damage or congestive heart failure. In all, they are four times as likely to have serious health problems as their siblings.
That is the sobering conclusion of the biggest and most detailed look yet at the long-term health of childhood-cancer survivors. It was presented yesterday at the American Society of Clinical Oncology meeting in Orlando, Fla.
Researchers hope the data, drawn from the experiences of about 10,000 cancer survivors, will offer useful information to doctors treating this ever-growing population. About 75 percent of children treated for cancer survive at least five years, and there are now about 270,000 survivors of childhood cancer in the United States.
"If someone is a survivor of childhood or adolescent cancer, you need to be followed by a doctor who is familiar with the risks, and the vast majority are not," said Kevin Oeffinger, a physician at the University of Texas Southwestern Medical Center in Dallas who led the study.
Cancer treatments have vastly improved in recent years, so today's patients shouldn't suffer as many future problems, specialists say.
Radiation is responsible for much of the damage, and doses were much higher decades ago than they are today, Oeffinger said.
Surgery can be disfiguring, and when done to remove a brain tumor it can cause brain damage. Chemotherapy with a class of drugs called anthracyclines can weaken the heart muscle and cause congestive heart failure. Drugs called alkylating agents can cause sterility.
The new study looked at the experiences of 10,397 survivors older than 18 who had been diagnosed with cancer between 1970 and 1986. They and about 3,000 of their siblings were sent questionnaires about their health. Details of their cancer treatment were collected from the 25 U.S. hospitals and one Canadian hospital.
At the time they were questioned, their average age was 27 and they were an average of 18 years removed from their cancer treatment. Leukemia was the most common cancer (29 percent), followed by Hodgkin's lymphoma (18 percent) and brain tumors (13 percent). Two-thirds had received chemotherapy and just under two-thirds had gotten radiation.
Oeffinger and his colleagues found that by 30 years after treatment, one-third had severe or life-threatening health problems or had died of a disease different from their original cancer. Severe problems included blindness or deafness, disabling breathing problems, congestive heart failure, sterility and amputation.

Life-threatening problems included second cancers, heart attacks, strokes, organ failure requiring transplant, and brain damage so severe that survivors could not function independently.
Some of the deaths were from cancers different from the original ones. Other studies have shown that 20 percent of women who get radiation to the chest in childhood for Hodgkin's lymphoma develop breast cancer by age 45.
The study couldn't prove that later health problems arose from the cancer treatment, but the comparison with siblings indirectly suggests it was a major factor. The survivors were 4.2 times as likely to die or have severe or life-threatening problems as their brothers and sisters.
The researchers believe that if more physicians knew the long-term health risks faced by childhood-cancer survivors, they could intervene in ways that might limit or delay the complications.
Copyright © 2005 The Seattle Times Company

A Quiet Week

A week off is a good thing in one way and a bad thing in another. I thought it would help her to feel good and do some normal things. It had not had that effect, instead she is just dreading going down the chemo road to hell, one more time. Two months, we can do it. Two more months of weekly visits, low counts, nausea, lack of appetite, stress and worry of the chemo kind.

We will make it. We will be able to do what we need to do. We are troopers but more like Patton's Army as it began to run out of supplies as it was heading further and further from home and support. This might be the roughest part of the journey because we know what to expect we have been through this next phase two times before.

We are grateful that we have the chance to get here. Some kids stumble on the way and have to take other paths. We would rather not do that thank-you very much.

Well I am going to try and get her out of bed. Always a big challenge. The house must be prepared for the housekeeper. The dog need a walk and I am out of cream.

All in All it is seeming like our former life and that feels good.

Sadie is good for lots of things.

She is not a loving dog in the lap dog kind of way. She will sleep by you but be prepared to be visited by her disgruntled vocalizations. She does not like to be disturbed once she is comfortable. She is always surprised when she lands on the floor after such vocalizations.

She is a bit disconcerted at this point in time due to the recent departure of her well trained elder pack members. They feed her and walk her and give her treats with great regularity. I forgot to feed her first thing in the morning yesterday. Dad is calling the SPCA. Oh, well. She survived and let me know that I was letting her down.

She is very attached to ME. She helps her when she is upset. Sadie is her friend and pal. They have shared a lot of their life together. Mary-Elizabeth needs her quiet support right now. She needs to have something or someone to take care of for a while. Sadie knows when you are upset and does what she can to help. M-E needs to look outside of herself for some distraction. Being asked to walk the dog and feed her gets us back to some semblance of normal.

I made Sadie go for a longer walk than usual. I need to get back in shape and by joe Sadie is going also. I had forgotten how nice it is to walk and greet new dogs and become re-aquainted with old ones. There is nothing quit like neighborhood banter. She sniffed and pulled back and tried to bark at the neighbors just to let them know we were around and she was back in charge. It was nice to take that bit of time to see what was new. New plants, yards that are being ignored and then to remember for a few moments what it was like a year ago in the TBD (Time before diagnosis).

Well we are back and Sadie is on the couch. She is pretending to sleep but will be letting us know when any offensive dog is in the yard. Or any cat, or any squirrel or....... She is quite the guard dog and she is doing her job with great alacrity. We are glad that Sadie is back.

June 17 and 18 2004 Flashback.

Rush to work, rush through the day.
Rush home, we have eye appointments.
Rush to downtown Ballard, say the parking prayer all the way there:

Hail Mary full of Grace Help us find a Parking Space

Rush into the doctor. Wait for an hour. No problems no worries. We are here for a routine, Sally you need more correction on your reading bifocas because you are older than dirt. Then..... off to Thai for dinner.

Those moments of simple innocence before we started down the rabbit hole that has been our life for almost a year.

When "They" say your life can change in a moment an instant, believe them

Dr. Balter did the routine, drops, wait, look. He checked me out, no problems. Mary-Elizabeth was the next one to be seen. He did a brief scan then looked into her eyes. He pulled back and looked again and then he said. "I see a problem." It was a quiet sobering comment. I took a deep breath and asked what? He explained that he could see a visible swelling of her optic nerves. In both eyes. He immediately took her blood pressure and ruled out a problem there. He said she need to be seen by her family doctor and another specialist. He talked with our doctors and send us to Retinal Eye Specialist. Both appointments were made in rapid succession.

Thursday night was very tense. I called my dad and my sister. I called Johnny. We all were a bit worried but knew that we had lots of information to gather. We were up early and then Friday the 18th. We went to blood draws and then to breakfast at the Atlas. Back to the doctor. He could find nothing that would be a problem. Blood sugar was normal, everything was normal. The blood work looked good and there were no symptoms of anything. No head aches, not nausea, nothing.

On to the Retinal Specialist. He took pictures of the back of her eyes. He took one look and then pulled back and said: "I don't think she has a brain tumor." It might Pseudo Tumor Ceribir. Most likely, her head just thinks she had a tumor. Oh great, those are the most comforting word a mother can hear.

He made an appointment with Dr. a NeuroOpthomologist. 11:00 am on Monday morning. Wonderful, I get to worry about this all week-end.

8:30 p.m. Friday night the phone rings. "Sally, this is Scot Makintire. How did your appointment go......" Somehow a phone call from your Primary Physician late Friday night. A progress report was given and then we fretted.

Oh dear, another Friday the 13th

Here we are 9 months. This is the first Friday the 13th that we have had since last August. I am trying to ignore it but there is this underlying rumble in my head. Friday the 13th....... Friday the 13th............................

9 Months. We simply continue in our new lives. Each moment that passes is a moment further into the world of remission. Remission, I have decided that I don't like that word. Remission means that the cancer is gone but......... there is no way to know if it is going to come back. Remission is a word that we all crave at the beginning but now I want to hear the word "Cure". It will not be in our vocabulary for a very very long time.

I was wasting my time on Second Life last night and M-E came out of the bedroom and was crying. She had had a nightmare about the cancer returning. I hugged her and did what I could to tell her it would be alright. Hugs are good things.

She is a fighter and no matter how far down she falls, she fights back to reestablish her life. She is like one of those bouncy clowns that you can hit and hit and they come back upright just like nothing is wrong. At least on the outside.

We have a week of no appointments coming up. It is going to be nice to not spend time at the hospital. I am looking forward to the time we are free from our town arrest for a whole month. I am just like a kid the week before Christmas. I can see the decorations going up but I still have more school to attend and other things to do before the real date. If everything goes as planned, We will be done the last of July. This will be the first summer I have wanted to go quickly.

M-E asked for an Invisible Fence for her birthday for Sadie. We are having it installed. They came out early this week to have a look at the yard and make the plan. Yesterday they came back to "train" Sadie. It won't take much training. First she snapped at the nice lady as she tried to put the collar of torture on her. Sadie was then given little bits of cheese until she was within range of the cattle prod( signal emmiter). She received the warning signal, ignored it and was "bitten" by the collar. She ran and climbed on the couch and would not go on to the rug for a very long time. She would not go back to the nice lady for any amount of cheese.

The Fence is to be installed on the 24th. Check in for updates on the progress. Does anyone know the name of a good Pet psychiatrist?

The houses across the street are both sold but to my mother's delight, the workman keep coming. the new neighbor's will keep her occupied for a long time. I don't know who enjoys the front window's more, Sadie or Mom.

Dear God, please make this Friday the 13th less eventful than the last.

Dreams of Sand

I was in a world of people and water. We were traveling together to a party. We were separated and I could not find my friends and family. I began to realize that all the water was turning to sand and the land was turning to sand and then big holes began to appear and every thing was getting swallowed up. No one seemed to notice but me.

Do you think I need therapy or a Dream Journal.

One more Mile Stone on our Journey

She is going to sleep. Much needed sleep. She had a very rough night last night. She was worried about the Methotrexate. I could not aleive her fears and her anticipation. I could not tell her she would be alright. I could not make the bad thoughts go away. I could not make it better. She had too much knowledge. She knew that any reassurance I gave her was really a lie.

630 ml of Methotrexate have been injected. Now we wait. Days of nausea f0llowed by days of bone deep weariness. Then we are done with the drug in IV form. I told her as the IV pump began today, that this was the last dose. She smiled and we both knew I might be lying.

It is the last dose IV if...... if she does not relapse.

Each day that we progress through this process we put one small step between ourselves and the cancer. We count a moment in time that we are deemed to be cancer free. Each blood test is a way to know that the cancer is still gone, we hope.
She does not know what if feels like to have cancer because she never was sick, not in the way most kids are sick. She never had the weeks of lethargy or the lingering cold, she did not have the strange spots or the weird blood tests. She went for a normal eye exam. She went to confirm for the third time that she received her dad's eyes and not her mom's. We will all be more wary than most. I will always hover more than I used to hover. I will worry more and watch more.

For now we know that the last dose has been given. M-E is sleeping. How can this not be a wonderful moment in time?

Mother's Day Morning

The Paper is here, No good sales. We need a new BBQ and they go on sale for Father's Day. Mom and I think that is just wrong. We will wait. No one has called yet for Mom. She knows they will.

Quiet is our plan. I figure it is Mother's Day and I get to do what I want. I will start planting and digging up the things I should never have planted I can then compost them they don't have to be saved or moved or recycled. I can have cold pizza for breakfast and take Sadie for a walk of my choosing and not hers. I can do laundry and not fold it. I can put any sheets I want on my bed or even better buy some crazy colors at Macys, colors that are bright and fun. I can drink coffee that is too strong. I can spend lots of time on Second Life or sew in only colors that I like. I can take a long shower and waste lots of water. I can take some time to read my new books. I can order some more if I have not finished the ones I have started. I can make the list longer for the handy man. I can plan the Invisible Fence for the yard. ( M-E wants one for Sadie. It is M-E's birthday present.) I can read only the sections of the paper that are mindless. I am going on the "no news is good news" theory. I can put out all the snail bait I want. I can look on E-Bay for Venice stuff as long until I have had my fill. I can watch movies of no import with Mary-E and try and help her ready for her last dose of Methotrexate. I can have no expectations of what the day will bring.

I will do what I want and know that I have everything I need, or desire because I am a Mom and this is my day to relish how wonderful Mom-ness is. For today, it means I can do Anything!!!!!!!!!!!! I Want.

Mother's Day

Here we are Mother's Day. Mom is here and we went to dinner last night. It was great. Father was not happy but paid the bill. Mom made her order wine and we had two PuPu platters. Oh well. It was for Mother's Day. We sent him home on the train this morning. I took a bit of time and when to Flower World and picked up a quilt and stopped at the fabric store. It was a successful adventure.

We are not doing brunch or anything tomorrow. Planting flowers and just relaxing.

I never realized how much I was a "Mother" and how important it was to me until this assault on my baby. I guess I took the roll for granted. I was surprised by motherhood but have always loved it more than any other role I have had to play. It fits me like a glove. I don't think I would ever survive loosing the part. I am looking forward to playing the part for many years to come.

ME is working on trying to get the Hobbit loaded on the IPOD. I am amazed at her abilities to work on computers. I am catching up. You will know I hav arrived when a picture appears on this page. It might be a long time.

Today We Remember the holocaust

I was listening to NPR and today is the day of remembrance. It made me think about how horrible the life was during the time that people lived in the camps. They were all affected by the events but were able to go on after the fact and were able to make good lives for themselves.

The human spirit is such a strong entity. I don't know what else to call it . I see it working in the children in M-E's class. I see it at the hospital. I see it in her. I see her sit and be. I see her struggle with small things and I see her doubt herself. She has been let down by her body at a very young age. But I see the spirit. The deep deep strength that shines through. I have to just know it will carry her through this time of holocaust and we will emerge on the other side. It will take time and there will be days of remembrance but her spirit will not be silenced.

She is going to CYO camp in celebration of the beginning of maintence. She is returning to Camp Hamilton and will be with Whitney. She is so excited to be able to return. They will not be doing horses but will be able to enjoy the other activities. It it scheduled for the 14th of August to the 20th. Those were the days we first began this process. I think it is important to replace bad memories with good ones.

We will remember this time with great wonder. We will remember the good and the bad. But the most of all we will remember. We must always remember so we don't forget to count our blessings and know that we can be survivors, true survivors.

Remember.......................

The Houses Across the Street are Done and For Sale

$429,995.00 What more can I say. One went on the market on Friday and has been sold subject to inspection. We shall see. The second one will be ready this week-end.

1250 square feet, 2500 square foot lot.

I guess the attraction is that they live across the street from me. I guess they don't know that Sadie barks very early in the morning. Boy will they be surprised.

The Dog is Back

Well Sadie is back. She has come back with Mom and Dad for a bit. Maybe more than a bit. She is a bit noisy. She is chasing the cat and barking at everything. She is a noisy little thing. Mom is here for a few days with dad. He is going home on the train. He is coming back next Friday.

Mary-Elizabeth is doing okay right now. She is going to school and doing fine. She is tired and very grumpy but it helps a lot to say that we only have one more dose of Methotrexate.

Three more months. That is the chant. Three more months.

One more................................. Thank God

One more, one more possible dose of Methotrexate IV. One more. I hate this stuff. In little doses it is okay. In pill form, I am hoping it is tolerable during maintenance. But this stuff is a killer. Within 15 seconds of the infusion beginning, she goes from a happy child with color to a silent white blob. There is no other way to to describe it. It happens so fast. Our fellow was even shocked when she sat with us for a chat last time.

One more dose........

M-E and I were driving home and she saw a red mini cooper. She said there is my car. I asked how old she was going to be when this was over and we realized that she would not be old enough to drive. I then said that when she was 5 years cancer free we would try and get her a used mini cooper. She broke into sobs. I couldn't believe it. She was in true agony. I inquired and she exclaimed "Mom I cannot do this for 5 years." She had thought I said treatment would take 5 years. I explained that people have cancer free anniversaries and that it was a good thing.

I took her a long time to get over what she called the "Scare" .

I realize that it is now time to address the healing of her soul. I am going to talk with my sister about the Navaho healing ceremony. I am going to talk with Mr. Boyle about doing one for her at the school before the end of the year. Sadie is coming home, we are going to do lots of Venice planning. We need lots and lots of prayers.

We have one more dose but it is not over yet.

Things are not as they seem

AS I gaze out the window, it looks perfect. Yesterday the houses across the street changed drastically. The port-a-potty left, the grass rug showed up. Two dozen gerber daisies were planted. The house numbers went up thus completing the perfect picture I am looking at today.

So many people just look at the surface. There is so much more to the story across the street. We have watched the process from the beginning. Carrol moving his stuff, oh my god he had stuff. The taking down of the old holly trees, the removal of the concrete and the house. The filling of the original foundation. The setting of the forms, the pouring of the cement footings, the slabs, the first sticks of wood. Step by step towards this perfect view.

But then things are not always as they seem................ One of the houses is built over the old filled in foundation. It has the best view but it is gong to settle. The dirt under the grass is marginal at best. The green is going to leave very soon. The flowers that were planted are pretty but they favorites to the snails and slugs and demand unending sun. They will just protest and die. The stone and the shakes are very interesting panels of material and not the real thing. It should be interesting to see how things hold up. In all fairness they are darling. They are an asset to the neibghborhood and I could not be more pleased with how they look. But....

It is like M-E right now. She appears fine but she is deeply damaged. I think it is time to take some time and address that. She has been in tears a lot. The smallest thing brings her to the brink. She frets about so much. Little things. I have to be so careful. She has -1764523 disappointment threshold. I do also.

I was going through my office files and I found a folder titled SUMMER 2004. I opened it up and there was the summer. All planned out. All set up. Including the June 17th eye exam, culminating in our trip to Spirit Lake at the end of the summer. It was a great summer plan.
I realized as the tears came that we would never have such a sense of freedom and abandon again. I also realized that we did not fully understand what we had at the time. It was truly a different world for us than this one we live in now.

My mother would be proud. I picked up the phone called CYO and asked if they would let her come to camp. I had not even considered the possibility but then decided they needed to tell me know. I could not let our former life be completely taken away. It was only going to be taken if I let it. Good news, she gets to go, Bad news the horse camp is full. We will do horses another way.

Things are not what they seem but they are better than can be expected because I won't let them be any other way.

M-E is folding a thousand cranes

M-E has decided she need to fold a Thousand Cranes. Origami Cranes. Over the years she has learned how to fold them, we all have. We had forgotten how to fold them and had been searching for someone to re introduce us to the method.

On the trip to Portland on of the boys knew how. I found paper in Portland and the process began. She wants to do it herself and has developed a very expensive habit. She likes only the "good" paper. Evidently slick paper does not "feel" right. So I will be trekking to China town to restock. She has done about 150 and they are beautiful. She was going to ask Mr. Boyle if he would let her hang them at the school.

If you fold a thousand cranes your wish comes true. She needs a bit of that right now. She is very much on the edge. Her nerves are frayed and she is very fragile. She looks great, she is going to school most days, she smiles and laughs but it is a very thin thin front. She can not stand change and is so worried all the time. She pulls back into herself and just sits there. I think we need to worry more about her mental state than we have.

She will get her wish. I wonder where I could hang my 1000 cranes.

Do You Think I Should Start Worrying?

I had a dream. Not unusual but a very weird dream. I was on vacation with M-E, Whitney, Parker, Ruth and my Grandmother. Now Grandmother died in 1996 but made it for this trip. We were traveling in Europe in a vehicle that had enough room for all of us to be comfortable and for the giraffe we had with us. We were gathering animals to take to some zoo in some country. We also had an antelope or two.

We were driving in the alps and came to this house and decided we would stay. We parked the vehicle in the field and everyone went into the house. We had dinner and did not seem worried that the owners were going to be upset that all these people were there. I slept in the back of the truck with the giraffe and went into the house when the SS showed up to check our passports. I had to dig a long time in my purse to find them. I kept pulling out lots and lots of stuff that was just junk. See I told you this was a weird dream (HaHa) Then we discovered that the SS were really UN workers in disguise and not a problem.

They left and we started cooking again. A gentleman pulled up and the kids and I tried to communicate with this guy who did not seem upset that there were 6 strangers in his house. I kept speaking a bit of German and Spanish to him and we were able to figure things out. We determined that he was not German but rather Austrian which seemed to be an important at the time.

He came home and started to make an apple tart with only a little bit of crust and dried apples. What was he thinking?. He seemed to have his own kitchen. We had to change rooms and started to explore this house and found lots of bedrooms and bathrooms. Whitney was upset that her bathroom only had a tub but loved her bed room. I was upset because I could not get anyone to help me get the giraffe out of the truck for some food and exercise. Then I woke up.

So do you think I should start therapy today or is it too late?

M-E's Letter to Make-A-Wish

Dear Make-A Wish Board

My name is Mary-Elizabeth and I am 12 years old. I
will be 13 on July 4th 2005. I have ALL a form of
Luikemia. I was diagnosed on Friday the 13th of
August 2004. I have not been able to go anywhere
since I was diagnosed and feel like I am kept in a
little box.
The treatment has been horrible because of all the
chemo therapy. I have missed a lot of school and my
friends. They come and see me but they are mostly at
school. I have missed going on trips or even to the
movies. The hardest part has been not having all the
energy I used to have. Sometimes I don't even want to
talk on the phone to my friends. I have had to spend
a lot of time in bed and it has been hard.
Many things have helped me. One is my best friends
Whitney Verhoff and Laura Breshock. They have taken
every step with me. They have been understanding
about what is going on and why I can not do things.
It has also helped alot to know that I can make a
wish. I have thought about my wish almost every day.
It has helped me to keep going because I know that if
I quit treatment, I won't be able to have my wish.
My first wish was to go to meet Oprah and go to her
show where she gives away her favorite things. I was
going to be able to see my friend Laura who has moved
to Chicago. I was going to take Whitney with me. We
were going to have a great time together. Rachel told
me that if my first wish was not granted, (Which is
wasn't) I had to have two other wishes. My second
wish was a trip to Venice with my mom and Whitney and
her mom. My third wish would be to go to Hawaii and
Swim with the dolphins. I would like to visit the
lava flows. I would want to stay at a place on the
beach with a pool. I love to swim. I would want to
relax and be on the beach a lot.
Rachel said we can go to Venice and I have lots of
reasons I want to go to Venice. Let me explain.
I went to Venice before with Whitney on a day trip
when we were in Germany. Both Whitney and I knew we
would want to return someday. It was really pretty
there and we wanted to explore it more. We loved the
ice cream and how friendly people were. The only
people on time limits were the Americans and we wanted
to go back when we could act like locals and just sit
and watch people go by. We also both love art and we
wanted to visit Murano and the art museums and
churches. We loved the boats and canals and the fact
that there are no cars. We did not have time to try
the real food. We just had pizza. I want to have a
chance explore everything.
There are some things I want to do. I want to go to
Murano and visit the glass blowers. I want to have a
chance to watch them work. I love glass blowing and
would love to see as much as I could. I would love to
meet mask makers and watch how they make the masks. I
home I can bring home a mask and some glass.
I would like to also go to Padua and find St. Anthony
and see his tongue. We are Catholic and St. Anthony
helps us find lost things. I have needed his help
alot since I had radiation. I don't want to go with
my mom to all the churches. She wants to light
candles in all of them. She is a bit crazy. I would
like to take a gondola ride and visit some places the
tourists don't ususally go so I can find a peaceful
place to sketch. I would also like to visit an art and
paper store. I know they have special paper in
Venice. I would like to visit an artist that paints
Venice. I would like to bring a special little piece
home. But most of all I would like to have lots of
time to just blend in to the town and wander around.
I want to take Whitney and her mom because she is my
best friend. We have been friends since first grade.
We have had class together and traveled together on
several trips. She and I were on vacation when I was
diagnosed. She and her family are my second family. I
can not imagine going on a special trip without her.
We have been doing lots of research on Venice. I have
done research on Venice and the things I want to do.
I have looked at lots of guide books and art books. I
am making my second room a Venice room. I am very
excited about being able to go.
I have three more months of very intense therapy. I
start my maintenance in August. I should have my
energy back in time to go in October. I would like to
go when there are not too many people visiting Venice.

Home is a Great Place

Leaving town was very exciting. It was exhausting to try and keep things on track but the trip went great. Lots of good times. M-E is exhausted by all of it but it was well worth it. We are still recovering from the after affects, my suitcase is not unpacked. The house could use a little work and Lucy is still not very happy with us.

I decided I just needed to rest and sew a bit today. I have not done that for awhile and it was good to see that I knew how to cut and paste a bit.

I was in the car by myself on the way home. It was the first time I had been so far from home. I was remembering the long drive from Chelan to Seattle. I just started to cry. The tears just came from nowhere. I realize I have been under enormous stress for a very very long time. I had not had time to just sit with it and make it my friend. I needed to do that. We are a family that moves onward and upward and forward and one of no regrets. It tends to keep you in motion which is good but sometimes you have to stop and check in. I did some checking in on that right home.

I stopped for a hamburger at BurgerVille. I grabbed some things from the back of the car and found a poem in the St. Joe's bulletin. Father Chris was discussing the death of John Paul II and shared this poem with us. Granted it is a poem about death but more than that is a lesson in how to live.

When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse
to buy me, and snaps the purse shut;
when death comes
like the measly-pox;
when death comes
like an iceberg between the shoulder blade,
I want to step through the door full of curiosity, wondering;
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possiblity,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth
tending as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it's over, I want to say: all of my life
I was a bride married to amazement.
I was a bridegroom, taking the world into my arms.
When it's over, I don't want to wonder
if I have made of my life something particular, and real.
I don't want to find myself sighing and frightened
or full of argument.
I don't want to end up simply having visited this world.

by Mary Oliver

I am glad we went on our little adventure. I am glad that I had a few moments to sit with myself. I am glad that I found the poem and that we are home. I feel pretty confident that we are living to the fullest and more than just visitors.

We Made It.......

7 children and three chaperones are sleeping. I am asleep at the computer. We made it to Portland.

Only a little drama. Just know that if you do not board the train at the Seattle station, you are able to catch the same train further down the road, if you have a car that can take you.

M-E is a bit tired. She was doing okay until about 3:00 p.m. She then simply collapsed into bed. I hooked her up to a liter, we had a bit of room service and she went to sleep. She is having a great time. She understands her limitations. It does not make the disappointments any less. She did not have the energy for the play. We stayed in and ordered room service and watch a movie. It was sort of nice.

I always think that she is okay because so much of the time she is but about 7:00 p.m. she dug in the drawer and pulled out a box and put on a special necklace and a one of favorite pairs of earrings and saddly said "Mom, was so ready for the play. I had the perfect outfit and the perfect jewelry." Sometime I think that the worst part of this disease is that our hearts break a little bit at a time. Maybe a better way to look at it is that our hearts were shattered into a million pieces at 8:35 a.m. August 14 2004. Despite our strength and faith and hope, bits and pieces of those shattered heart fall to the ground on occasion. Little reminders that no matter how much we try to return to normal, we are in the middle of the battle of our lifetime.

Okay, I recognize that last paragraph is a bit grim but who can blame me. I am drinking coffee designed by the Pod People. It is Starbucks but it is not going to be enough for the rest of this day. We are in a great Portland Hotel with big rooms and nice furniture and wireless internet. We have two televisions, three phones, a magnifying mirror so I can see all my wrinkles, and an endless supply of stocking stuffers for Christmas (Shampoo etc). It is those little coffee pots with the pod coffee that make you realize that true coffee drinkers are not as valued in this world as they should be. To make matters worse, there is always a decaff pod of coffee to be brewed, I am sure that if you carbon dated the decaff you would find that it is more than 10 years old. No one that stays in a hotel like this drinks Decaff. The are the drink wine in the lobby at 5:00 group.

Well I am going to forge for real coffee. Coffee People is on the corner and I may slip on my jeans and look like a native and go........

Dear Make-A-Wish

I wanted you to know how much I do appreciate your organization. I know that you have a great yet some times sad job. Make-A-Wish. I had heard about you before we were eligible for your services. I knew that you provided services to dying children. I knew that you were out there. I have been lucky enough to send you money on behalf a clients that have died. You are sort of like the American Red Cross. We want to know that you are out there doing good works but we don't want to ever ever need them.

Within hours of being told that Mary-E had lukemia, we were also given the news that she now qualified for a Wish. That news brought great joy but also a very sobering sad realization. You also thought M-E could die. More accurately, you have had enough experience to know she might.

It was fun exercise. M-E and her friends have spun great wishes. Great big ideas.

1. Lap Top computer. Practical, needed and cool. (Rejected....Mom will get me one)
2. Disney Land: No (I have been there more than once. Even if you get to stay in the real Disney Land Hotel and get front of the line passes.)
3. Aunt Belle's Version: John Travolta flys to Seattle with Tom Cruise as the Co-Pilot, picks us up in his 727 and flys us to Chinle Arizona to pick up Aunt B and then continues to Austin Texas where we meet the head of Dell Computer, who gives us lots of laptops while we meet Lance Armstrong. Then continue on to Disney World where Brad Pitt will take us to all the rides via Golf Cart. (When asked who John Travolta was she said: He is the one that has a plane.)
4. Whitney's Wish: Go to Oprah on the day that she gives away her favorite things. Spend the day at the American Girl Store shopping and see Laura(there other best friend that moved last year to Chicago). ( Oprah does not do Make-A-Wish.) This was her first choice but then Oprah said no and we went on the next wish.
5. Go to Venice with Ruth and Whitney and here we are.(This almost floored me.)

You have said we could go to Venice. She has been to Venice with Ruth and Whitney for a few hours when she was able to go on the Verhoff family vacation. They have included her in a number of adventures and she has always had a good time. When we knew Venice was on the list we looked up some things and did some prep work for it. She was ready to love Venice. She knew about the four horses and St. Marcos and lots of other things. She discovered that Venice was in her soul.

When we were talking Rachel and Tanya she began to speak about Venice in ways I had never heard her talk. She talked about the ice cream and the Masks and how she wanted to bring one home. She talked about the glass and her desire to see the glass blowers. She talked about how it felt to be there and how she wanted to have time to really be there. Just there for a long time. Time enough to understand it.

Since you have said yes, she has been so excited. We have looked at guide books. Friends have sent her guide books and maps. I am on a Venice Memorabilia hunt. Pictures, gondola rotating music boxes, old souvenirs. It has been fun. We have been looking at a great set of books that Alison gave us a few years back. We have been reading about Venice on the internet. It has been a good distraction.

I don't thing you will ever understand the joy that this process has brought her. She is of an age that this is really a great thing for her to look forward to at this time. She is a bit worried that I mean it when I say I am going to light a candle in every church in Venice. But I am serious. I want to leave as many prayers in a place we love as I can.

I know we are not out of the woods. We are planning to go in October of this year. Many people have asked why we don't wait. I am not going to wait. I know of a family that did wait. They will not be fullfilling Kelsy's wish of going to Disney Land. I have learned that it is important to enjoy each moment. I know we run the risk of not being able to go. I know she would be devastated. I have learned not to tell her about things too far in the future because things are so tenative but I have to also not stop planning a future. We need a future to work towards.

I have wondered where this wish originated. As I have heard her speak to her friends over the past few weeks she was truly affected by Venice. She remembers the strangest things. The bathrooms cost .20, the stolen horses on the front are not the original. The real ones upstairs.
The ice cream was the best in Venice. She remembers how long she was there and was wise enough to know she wanted to return.

I know we are going to have a good time. I know that you will take good care of us while we are there. I hope that we can some how repay you in the future.

Thanks again.


P.S. She also wants to take one side trip to Padua and see St. Anthony's tongue. Whitney agrees that would be cool.

No Matter How Normal..........

WE have been affected by this journey. We are very different people. Our perception of the world will never be the same. Things are not viewed the same way. We are forever changed by what has happened over the last 9 months. Something happened last night that made me realize some changes have occurred despite our need to keep things "normal".

We went the mall for dinner. M-E seems very bonded with Red Robin. Ironic it is my least favorite place. She has been able to eat the burgers pretty constantly and the milkshakes with extra whip cream have helped keep the weight on. (There is phrase I never exected to type.) We looked for shoes and then everyone wanted icecream. We went to Dairy Queen and M-E wanted a blizzard. Well I watched the employee make one for someone else and there was not way was she going to have one. The collars that the blizzards are made with are kept in this puddle of icky dirty water. I saw her wipe her hands on her jeans and that was it. I started to look at the entire place and realized that it was a candidate for one of those Oprah, do you know what is in your kitchen shows. I shuddered and she had a Sunday.

I have never been squeamish. Iron constitutions and not much sense. It has served us well. Now, I am becoming one of those people that worries about silly things like how long things have been sitting out or whether the lettuce has been properly washed.

The world in general is much less safe. Danger lurkes in places it never lurked before and I hate to see the world in the negative connotation. It is like a person that buys a car and then every car on the road is identical. Those cars were always there but were never notices. The world is full of danger but we had the luxury of ignoring most of them. I can see how people become obsessed with germs and cleanliness.

The only part that makes it all manageable it that I know it will pass. Or it will recede into the back of my mind,.

Well on the other hand, can you imagine me becoming a Germ-A-Phobe. Oh yeah, thats right. See things are better all ready.

The Porta-Potty is still across the street but the fence is up... Yuck.... and the houses look ready for the open house tomorrow. I will let you know the price.

Giggles and Girl Worries

There is no school today. Something about in-service was claimed. I know that all the teachers are doing their taxes and I support there need for a day to meet with their accountants.

M-E and Whitney were able to have a sleep over. It was such a normal one. We had dinner, then popcorn and pineapple,then a couple of hours of useless time in front of the television. Then the best hour. The hour of giggles and talking about boys in a very normal 12 year old way. I walked in and they were having such a good time. They were discussing the things they wanted to do on the trip to Portland and how that was going to work. They were planning the perfect field trip and choosing the chaperones. They were talking about where they would be going and what they would do.

It was so nice to here happy sounds from the bedroom. It has been so long. I can see that we are going to have more of those days. It was a great way to silently slip into the 9th month. Day by day we are regaining our footing and learning to trust the world a bit.

We are able to stay in this space until the 24th of May. She will then have one last stage of intense Chemo. The ugly stuff but then we start maintence.

We can do that. We have learned that we can do and handle a lot. More than we wanted. I know that things will never be the same but many good things have come from our journey. We have connected with our faith in a special way. We have learned to receive rather than give. We have found deep strength and a staying power from places we never knew. We have learned who our real friends are. We have found new friends. We have learned to wait and be patient. We have found a haven in a place of hope and sadness at Children's Hospital.

We now have to learn to trust again.

We are Sticking our Heads out a bit

Month 9. Oh, thank God we are moving through this process. I say that with more confidence all the time. My new chant, three more months, three more months, three more months. Oh, I hope that is all we have to do.

We have had a fair amount of drama over the issue of a Portland field trip. The art class is going on the train to visit several cool places in Portland. Galleries, museums, the Art Institute, the Grotto and a play. We were supposed to stay at the Marriott and have a pool. The person who was supposed to confirm was traveling and we lost the reservation. M-E, my normally calm and reasonable child, cried and sobbed at the news. The "no pool" sobs became a torrent that covered every thing from Sadie being gone to missing the class picture day. The single incident just was the last straw. This reaction just let me know how truly hard this process has been for her and emphasizes to me how very strong she has been. So seldom does she let it get to her.

We are going to go anyway, despite the pool issue. I am worried because she has a bigger dose of Methotrexate on Monday and I am supposed to put her on a train on Tuesday morning. She is going to be so disapointed if she does not get to go. I am going to drive so I can keep her close. It should be interesting. I am glad we had the practice trip to the Westin. I learned a few things about how to travel with her. It is different now but doable. There is a good hospital in Portland so we will be able to get help if we need it. I am planning on no need for medical intervention but know that at a moment's notice we can have one of those life changing complications.

M-E seems to be coming around though. She felt like talking to Laura B. last night. She sometimes does not have phone energy. She has been to school all week and doing fine. She is getting stronger every day. She is reaching out a bit more and I am trying to work more and inch away from her. She pulls me back on a regular basis but that is fine.

We are getting ready to rejoin the world again. Small steps, but then they are sure steps and we feel ready.

Interim

Interim..... a very funny word. It is a word that we use in Luikima world a lot. Now we are in Interim Maintenance. I think this is what Limbo is like. It is a time of waiting and contemplation before we start the next part of our journey.

I hate to wait but I have learned a few tricks on how to wait. M-E does it with so much more grace. She is such a trooper and has such inate wisdom. We all have more expectations of her because of her special and marked qualities. She seems to think that we under estimate her abilities. I don't think I could ever get it right at this point in her life but then that is a very important part of her adolescence.

She stuggles deep in her heart. She is so brave and so stoic about it. Sometimes cracks appear and tears flow. I take every chance I can to let the tears find there way to the surface. I know they are there and they need to escape. I feel like an old fashion doctor who has to use a hand held probe. I ask the hard questions, are you afraid you are going to die? Are you afraid that you are going to relapse? Her answers are always postivive. " No Mom. I have not had any of the problems of the people like the people that have died." I am not morbid about the questions but it seems that every book she has read recently has had some child in it that is sick. I am glad that she does not see herself in those other children. I hope that she never has to.

We all are in an "Interim" state during our lives. We are all waiting for the next stage. Maybe the lesson here is that we should spend less time waiting and more time understanding that this is where we are at this point and time and be content with this part of the journey. No time wasted doing the "What if we had....." Only spending time on the moment at hand and looking forward. Looking in the rear view mirror only makes you miss the next exit and we really want to get there.......

P.S. The houses across the street are almost done. I think the sign that they are ready for the market will be when the Porta Potty goes away.

The Slugs have to Go

Sad but true. Slug and Snail death will be coming soon to a garden near you. Or more accurately , me. I went outside today and the snails had eaten the winter pansies. Now they had not eaten the leaves, only the blooms. I started to look around and let me tell you. We could feed the entire city of Paris and still have some to share with Spain.

It felt so good to go out into the garden and do some yard work. I even went for a walk around the block. It was a good adventure and I only "pruned" one small clump of Lilacs that really really asked that I take them home for M-E. The world is coming back to life with a vengeance. I think is what gives the human spirit hope. The trees and grass and plants never give up. Why should we?

M-E is in bed for the third straight day. She has not been able to get out of bed at all. She is reading and did not even want to go and sit in the sun. It was very hard to watch her in this state. I am hoping she will rally for dinner. Mom is making Sour Dough Pancakes. We have been told that no matter what, we are to tell Father his are better. She had her second dose of methotrexate and they gave her more than the first dose because she her liver was not too mad. Now she is mad at her liver. Do you think that counts?

We are settling into nice weather. Fluffy clouds, leaves out on the Katsuras, lots of bird noise in the A.M. It is a time when that first cup of coffee can be had on the back deck or even better in the early sun on the 7th grade project which is cement bench with tiles. ( I may even get a picture of it soon and get it on the blog.) The bench is warm by the time the coffee is brewed and a few quiet moments are refreshing and much needed.

Things are okay. M-E simply cried last night because she feels so bad right now. She was just not ready to do this process again. It is especially hard because she is getting more treatment because of Frederica and her age and her failure to go into remission before day 7. She knew it was coming but right now it feels worse than it is. I was talking to Mom this morning and we realized that she has almost made it 8 months. 3.5 more to go before maintenance. We can do it. I think one thing that makes it hard is that she never felt the affects of the Likemia. She only felt sick from the cure. We can do it. I know we can. On to bigger and better places in our lives and Fred Meyer to get snail and slug bait.

Three to Go

Two down, Three to Go. I love that we are now experiencing "Lasts" Last interim Maintenance, Last dose of........ Last Echocardiogram for a year...... I am waiting for "Last day of Treatment" It is a very very long time before that day comes but we are able to salvage enough real life during this time of treatment that it seems manageable.

We finished a dose of Methotrexate. It is such a nasty color. She dreads it for days and then suffers from it's affects for the week. It makes her very tired and grumpy. She keeps telling me that she is broken but seems to reflect a better attitude to the rest of the world.

Grandma is here for a week. That gives me the chance to work and not worry so much. It will be a good week. One of many to come.

Something Sweet My Cousin Wrote or Sent Me, Something I thought was worth Sharing

"What's it like to be getting older?" I was asked. The other day a young person asked me how I felt about getting older. I was taken aback, for I do not think of myself as old. Upon seeing my reaction, she was immediately embarrassed - - but I explained that it was an interesting question, and I would ponder it, and let her know.
Old age, or getting older, I decided, is a gift. I am now, probably for the first time in my life, the person I have always wanted to be.
Oh, not my body! I sometime despair over my body- the cellulite, the wrinkles, the baggy eyes, the jiggly thighs, and the sagging butt. . And often I am taken aback by the older woman who lives in my mirror, but I don't agonize over those things for long.
I would never trade my amazing friends, my wonderful life, my loving family for more shine in my hair or a flatter belly.
As I've aged, I've become more kind to myself, and less critical of myself. I've become my own friend.
I don't chide myself for eating that extra cookie, or for not making my bed, or for buying that silly stone rock face that I didn't need, but looks so avante garde on my patio, in my flowers and in my home.
I am entitled to overeat, to be messy, to be extravagant. I have seen too many dear friends leave this world too soon; before they understood the great freedom that comes with aging.
Whose business is it if I choose to write, draw or paint until 4 am, and sleep until noon?
I will dance with myself to those wonderful tunes of the 70's & 80's in my living room or in my yard as I work, and if I at the same time wish to weep over a lost love, I will.
I will walk the beach in a swim suit that is stretched over a body that has seen better days, and will dive into the waves with abandon if I choose to, despite the pitying glances from the bikini set. They, too, will get older.
I know I am sometimes forgetful. But there again, some of life is just as well forgotten and I eventually remember the important things.


Sure, over the years my heart has been broken. How can your heart not break when you lose a loved one, or a lover disappoints you and leaves your life, or when a child suffers, or even when a beloved pet gets hit by a car? But broken hearts are what give us strength and understanding and compassion. A heart never broken is pristine and sterile and will never know the joy of being imperfect. Imperfection is truly something that needs to be loved, for we are all imperfect.
I have a motto for my home - it is getting painted on the back door this spring and it simply says " I am not an interior decorator, I am a child of the earth. If I can not walk in, kick off my shoes & feel instantly relaxed, Then this is not a home - it's just a house. If all of our friends can't do the same, raid the fridge, change the channel, - then it's not a home, just a house. So - the more imperfections it has the perfect it is. For this IS our HOME, it's not just a house!"
I am so blessed to have lived long enough to have my hair change from all its reds to more blondes, and to have my youthful laughs be forever etched into grooves on my face.
So many have never laughed, and so many have died before their hair could change colors or turn silver. I can say "no", and mean it. I can say "yes", and mean it.
As you get older, it is easier to be positive. You care less about what other people think. I don't question myself anymore. I've even earned the right to be wrong.
So, to answer your question, I like being older. It has set me free. I like the person I have become.
I am not going to live forever, but while I am still here, I will not waste time lamenting what could have been, or worrying about what will be.
For the first time in my life, I don't have to have a reason to do the things I want to do.
And I shall eat dessert every single day. In this life, with my family and friends and loves to come, I am truly blessed. I have figured out what it means to 'be set free'.
Love as there is no tomorrow - love of life, family, friends, lovers, children, hobbies, sunsets, sunrises, the brilliant moon, the meadows, the crazy traffic that makes you slow down and think, the people whose lives you touch even if its only for a moment because they affected you as you affected them. Love! Life is to be enjoyed. Be a child everyday, an adult when you have to. Just BE!


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Discussions of Death

We have been having some very interesting discussions. Lots of questions about what is the best way to die. What is extraordinary medical intervention. Why people of obvious faith are not willing to let love one's die. Whether there is a reason to be afraid. What to do after death. How can these conversations not happen after the news this week.

For years I have let M-E know what is to happen to me. She knows I am to be cremated and my ashes sprinkled in the Grand Canal at midnight from a Gondola. She told me that Whitney would have to go with her and make her do it because she would be afraid of getting caught.

She has been deeply disturbed by the measures that have been taken by the family of Terri Shauvio and the Pope with the feeding tubes. M-E has been horrified by all the children we see at Children's that have tubes. She does not want to have one. She hates IV's and anything where her body is assaulted.

We are going to have more discussions about this topic. We don't have to face imminent death but we all have death approaching at some time. I know that people are horrified to even have me mention that M-E could die but that is our reality. She is doing great and we are more and more hopeful each day as we travel this path. I actually have become more comfortable with the way treatment is going. I realize however, that the ongoing chemo keeps the cancer under control. My fear will come while we are in the less rigorous treatment times. Each time she has a bruise or feels tired, I will know is a return of the lukemia. No manner of hope or faith or positive thinking is going to make me less worried.

My heart just sinks and I go to a very very deep dark place when I think about us loosing this battle. I can go somewhere that is frightening and just so sad. Sad in a way that is hard to describe. I guess part of me wants to be prepared for the possibility. I have to think about how to deal with it and what I would do. By keeping that in mind, it keeps me cognizant of doing the best I can everyday as a parent and keeping connected to M-E. It keeps me doing the little extra special things that count. The movie when I am tired, the extra play date, the extra moments of snuggling and just spending time. It keep me headed to the right place and not get distracted.

I have made some changes. I don't answer the phone at night. I don't schedule anything on clinic days. I keep work at work. I check in with M-E a lot. She is sometimes hard to read. She often keeps a lot of disappointment close to her heart. She is such a trooper that we have to be careful that she is telling us what she really thinks and feels. She is having a good time here (Westin). She is very glad to be on vacation but she still feels that she is missing "Spring Break". Ordering breakfast in bed did help however. She and Sebla decided to ask me to try and open the ketchup instead of calling room service.

What Will The Man Bring for Breakfast Mommy

I am reminded of a time when M-E was 2 and 1/2. Her grandfather and died and a planned trip to Mexico did not happen. I had tickets for a concert in Portland and was going to drop Johnny and M-E at the airport and continue on. I ended up taking her to Portland with me. We checked into the Heathman. We arrived late and I did not want to take her out anywhere. She had slept all the way to Portland.

I perused the room service menu and we ordered a couple of things. We had our snack and went to bed. We woke up and were watching cartoon. M-E stretched and sleepily said " Mommy what is the man bringing for breakfast." It was one of the moments as a parent when I realized that I had created an expectation that could never be changed. It was not a bad expectation but just one of many she has learned in this life time.

I am glad that she has had more expreriance of like events. Trips, tea at the Queen Mary, the ablility to recognize Monet, laugh at The Lucy Show and see Harry Potter on the day it is released.

She had had share of disappointments in life during her short 12 years. Some big some small. She has learned that there is not a Santa, or a tooth fairy. 4th of July fireworks are not for her birthday and Friday the 13th is not her friend. Even with those diapointments, she has gathered enough knowledge to get through them and hopefully emerge on the other side with more positive things gained then lost.

Today's report goes like this. Breakfast served in bed by mom, cartoons until noon, roomservice for lunch swimming until three, napping until 6:00 dinner. I think she has learned to make the best of every situation and she is a fast learner.