We keep learning things about how this is affecting people

Mary-Elizabeth received a letter in the mail. One of her friends wrote this essay for Magazine. Her essay was not chosen but the Magazine sent it to us with a nice letter.


BEAUTIFUL GIRLS

When first asked, people figure that being beautiful means looking like a movie star. Although when you take the time to think, beauty is much deeper than that. I'd like to tell you about one of my close friends, Mary-Elizabeth. Mary-Elizabeth (called MEB), was diagnosed with leukemia this past summer. When I heard the news, I was struck with shock. A few days later, when MEB didn't have any treatments going on, I went to visit her and the surrounding were hard for me to take in. There were so many sick children. I thought God, how can anybody deserve this or how can this be your plan for anyone. When I got to MEB'S room, she had such an upbeat attitude and was so confident in herself that she could get through all the treatments and come out on top. To me, when a girl has confidence in herself, especially in a tough situation like MEB's, she is no doubt about it, beautiful. People like Mary-Elizabeth, make me view the world in a different light. I become more aware of the tragedies going on in the world around us and I'm much more grateful for the things that I have. When someone can make you change your way of thinking that, itself, is a beautiful quality. Mary-Elizabeth has chosen to shave her hair, rather than let it fall out. I admire her because of her bravery, which again is beautiful. MEB is looking ahead to the future with a positive attitude. I admire MEB so much because she fits perfectly with my definition of beautiful. Everyone needs a role model and MEB has become mine. I hope that my piece on Mary-Elizabeth has inspired you and helped you think of the definition of beautiful differently.

By Lauren Byrne age 13.

We have been so busy dealing with all the Chemo and treatments that we loose sight of what this is doing to all those around us. It seem so much like this is happening to just our family. I feel like we just are inside of this swirl of activity and most times there is no extra energy to reach out to those who care and who have continued to care for and about us.

After reading the essay, I took a moment and called Lauren and thanked her for her thoughtfulness. I know it is not much but it was something I could do. I realized that every simple thing we do for someone else does have a big impact.

Thanks Lauren and everyone else that has shown us a some kindness.

Expected Waves

It feels like the tide is receding. We are relaxing a bit and working on enjoying the view. I slept all night. No worries about whether or not the pump will run out of battery strength or the line will kink or the PICC will break in the night. Her ANC is high enough to keep her in good health. She is hungry and starting to be able to eat. Her mouth is healing and she is figuring out how to deal with all of that issue. Guava Juice does not sting.

I am working and getting ready for a big trial. I have lots to do and that feels good. I have to deal with some things today but life is manageable.

M-E is being retrieved from school on an almost daily basis by Ana and Isabel. M-E is doing lots of make-up time with her dad and loving every moment. She is learning turn her irritation of not knowing into good humored teasing with her father about his poor memory. Mary-Elizabeth is settling into her new discovery. All-in-All it is a good thing.

We know there will be more waves, big crashing painful waves but we live on the Pacific Rim and we have a warning system. We get side swiped every now and then because this Likumia thing is a very strange and insidious disease. I worry that I will never stop worrying about a relapse. I don't know if I will ever believe she is healthy. I find that I worry the most when she burrows into her bed and only wants to listen to my TV from her room. When she can get out of bed and is grumpy and surely I feel so much better. I love now when she mouths off to me a bit and gets sassy. Maybe the chemo and radiation and weeks of no food are going to not take my child away from me.

I realize how much I want to believe she will be better. I am so willing to flip back to the "Everything is okay" mode. I like that part of the universe so much better. As parents we all worry about our children. No one is ever prepared for how much we love them the moment we find out they exist. No matter how hard I try, I don't think I could ever be okay again if she did not beat this disease. All the good thoughts in the world, all the candles, all the loving prayers and support from the entire world would never fill the hole in my heart.

I know there can be a sneaker waves out but we will deal with those when they come. Right now we will be thankful for a good time and pray for all of those that did not expect a wave on Christmas Morning.

She made it back to school

I am loving this time of her treatment. Day one of school. She made it all day and was up until 9:00 p.m. last night. Now I can not get her out of bed this morning but I am going to start making lots of noise. This will be a good week for her until Thursday when we have to do some more Chemo, then we will have a week-end to deal with the aftermath. But it is manageable.

Work was not too bad. I feel like I have lots to do but then that is good. I am trying to keep a good attitude and not be too stressed. Breathing is my newest option. I am trying to do a bit of that on a regular basis. One file at a time. One breath at a time. One project at a time.

I have started to just throw the paper away again. I had better stop it. Just know that if it does not show up in People Magazine, I will not know about it. The earthquake and Tsunami is just so sad. I can not wrap my mind around the events.

How many times have you heard "life will go on". It is so so true. No matter what happens, people seem to have the ability to move forward and continue. Survival is such a basic part of our being. I see M-E continue with things that are very difficult and she does it with such courage and with a sense of humor. She walked into school yesterday with a smile and no hair. She talks about her cancer like it is just another little bump in the road. She is very matter of fact about many things. I am so proud of her.

Dad has said that she will teach us all many many lessons. I truly believe she is a very old wise spirit.

Tomorrow we are going to try and go back to Pre-ALL Life

Mom cannot come back tomorrow as planned. I had already told her she could stay home for a bit. She gets very tired here and doesn't rest as she should and quite frankly this is hard to do full time. M-E is in a pretty good space. She has some energy and has a good ANC. She is experiencing her first set of mouth sores and that seems ironic, given she has not been hungry but now is. I will be making some tapioca pudding today because that sounds good to her.

Mom has been the laundry fairy and so I am trying to do some loads. I have issues. Let's face it. It don't love doing it, I don't feel a sense of accomplishment when it is done I know it just grows. I will try to have a better attitude.

I had a dream last night about being back in the hospital and seeing a stellers jay land by the window. I strained to look out the window and saw a baskted attached to the wall full of blue flowers. I saw tucked into the basket a small blue bird the color of the flowers. I hope it is a good sign not just a Rose Bowl Parade flashback. I am hoping we have somethings that are beautiful to look forward to this next year.

We need a break, a chance to process, some time to not worry about everything. I need to take time and change the filter on the furnace.

2005

THIS YEAR BETTER BE AN IMPROVEMENT OVER LAST............

I AM DONE WITH BEING NICE, I THINK FORCEFUL REQUESTS ARE IN ORDER.

Isabel and Mary-E

I am so sorry I am not smart enough to post a picture of the sisters. I have a couple. If you e-mail me I will send it to you. I have figured that part out. The best place is Quilting_goddess@msn.com.

Ana, Johnny and Isabel came for dinner last night. Isabel walks in the door and asks for M-E. She is so bonded to her. I on the other hand am the scary stranger. I love children with a sixth sense. Isabel has those deep knowing eyes. The ones that penetrate your soul and let you know that there is more to this life than we sometimes acknowledge.

The sisters are doing well and so are the parents. Normalization of the relationships is going better than anyone could believe but we all are learning to accept that will never know the answer to "Why did Johnny forget to tell everyone.?" I will be letting everyone know when Lupe arrives. I am sure I can sell tickets to the "Lupe hitting Johnny upside the head" show.

M-E ate her Ana's tostadas. They were good and they were gone in a flash. M-E loves when someone cooks Mexican food for her. I am hoping that Ana will be teaching both the girls. I have tried but I don't have the right touch.

We are all still looking for a source for tamales. There has to be someone in this part of the world that makes some that are acceptable. David's wife sent some from Visalia California that were good. When we were in Mexico last Christmas I asked Lupe about getting some and she assured me that we had to travel 60 miles into the mountains for any decent ones. I am beginning to believe they are like the holy grail of Mexican Cuisine.

M-E is asleep. She had her last bag of fluids last night. They are cutting her off cold turkey. She has to drink. I hope I can keep my mouth shut today but then I have never been very good at that part.

It is cold this morning. I am going to take advantage of the sun and do a bit of gardening. It is time to reflect on 2004. I will say for the record that it has not been my favorite year.

I was thinking this morning before I drug myself out of bed, that it is so quiet in the winter. No birds or extra sounds. I guess winter is a time of waiting and silence and rebuilding. We have to have the down times to face the rest of the activity of life. I am trying to find that quiet place right now and trying to recharge my batteries.

I had great hopes for movies and shopping and some normal activity but time watching the world during it's down time has some merit also.

Garbage Wars

I am not sure who the enemy is in this battle. It is most likely me but then I have to shift some of the blame to society and the Public Utilities. (Shifting blame is what I do best.)

Here is the problem. In Seattle, we have lots and lots of different kinds of garbage. We have regular trash, yard waste and recycling. We have hazardous waste and then I think we know have ways to dispose of old TV's and computers.

Trash: collected once a week. If the lid is off your container you are charged an extra $5.00. If you put out an extra bag you are charged an extra $5.00 per bag. If you don't put your can out in time they do not credit you but make you wait. If you call and tell them they did not pick it up you are severely chastised and sometimes they come and sometimes they don't. Let us all remember who controls the garbage business. No, not the Mafia! Nasty 12 year olds that answer the phone and like to yell at people.

Trash is also collected in different sized container. Giant, medium, small and oh my god do those people live on planet earth at all, size. We started out with the Giant one. It was here when we moved in to the house. I concluded that even with a minimum of effort we could go to the medium size. It is the regular 32 gallon or so size. I liked it because it came on wheels. I soon found that even that was too much because I like to recycle. We went to the small size. I have never had the nerve to try and go to the MINI can. That is simply not a reality. I think people with those cans use other people's cans or only throw away a light bulb. They buy all their food in bulk, never buy a container that can not be recycled and use their neighbor's for over flow.

Every now and then my can becomes smelly. I have found that you can call the garbage people and change size and they bring you a new one. I have never been given an old one so I don't think they recycle. That would be ironic if they did not.

So, this A.M., very early, I headed to the back where I had been putting all the Christmas Garbage. We had two parties and I did not have the proper William Sonoma tastefully labeled recycling containers nor did I hand out the thrilling article "What and How to Recycle for a Better Planet" nor did I show the informational video as people entered the door. I further failed in do post party garbage separation and I was just ready to pay the piper and put out an extra can. I would pony up the $5.00 and call it good. Well, I could not help but look in my neighbor's garbage. I scored. Lots of room. Lots of places for the unsorted bags and huge pieces of Styrofoam from a Santa present. I have one full can with lid on, waiting for pick up. It is a sign that life will be good today.

No yard waste because I have been otherwise involved and recyle goes next week. I have ton's of recycle because I failed to get it to the curb in time last week. Of course that was when the Recycle people came before the crack of dawn. They will take all I have to give them next week. I even put my can across the street but they had already been there.

Across the street report: They poured the slabs for the houses. A new Honey Bucket was delivered. No one ever saw the non-working guy come out of it so he might be in another part of town by now.

Last night we ventured out. We had dinner with Audrey, Wilbur, Jerry, Ruth, Whitney and Parker. We all went to Bepo di Bucca. It is a big Italian place that is great for lots of people. The meat balls are the size of a soft ball. It was fun. M-E lost steam about 6:45 p.m. She was just out of it. I am pleased to announce that once she burped a couple of times she felt better. She is getting stronger every day but still needs lots of rest. I think I am going to try and see if she cannot sleep for a long time this morning.

I just want her to be well, Now!!!!!. And we are so far from that point in time. Patience. A virtue. One I need to work on again and again and again. I have to be patient. Now how ironic is that?

Father Says I need to go back to work.

I resisted the urge to stay in bed this a.m. We are having one of those cold, crisp mornings where you hear the scrapping of windows when you open the door to check on the moon. It is full and the stars were beautiful.

While I was enjoying my first cup of coffee of the A.M., I was watching the lack of activity in the neighborhood. Yesterday a couple of guys showed up across the street and did some digging, put down some pressure treated timber and then they put some pink Styrofoam at the edges of some of the walls. This morning someone walked by and entered the Honey Bucket. I never saw him leave because at about the same time some other guys showed up and then the cement truck appeared. I was sure the Cement truck was going to overturn the Honey Bucket. He might still be in side.

Well they are pouring concrete slabs. Now what happens if they ever have to get to the pipes they buried in the ground about two feet down? It has been quite the experience watching how they do this. I keep saying that I would never buy a new house but then heaven knows what went on when they built this house.

Mother did not want me to mention anything more about the Honey Bucket on the blog. Sorry Mom. Sometimes there isn't much that is more important to report.

I am waiting for M-E to wake up so I can be noisy. Maybe we can find a calendar today. Ours is running out and I am pretending the next motnth will be normal. So I will be filling the blank spaces with school information and the such.

The red shafted flickers are here. They love the suet and seem to have the ability to chase away the rest of the birds when they want to eat. One will pick at the mass and then pieces drop to the ground , the other then cleans those up. Seems to work out for everyone. That is the best we can hope for on a daily basis.

The cement guys are standing around. I wonder if I could put them to work? Neither of them have been to the Honey Bucket.

Mom has to go to the doctor today. She was supposed to have a fasting blood draw but forgot and ate some chocolates and had her blood drawn anyway. She figured it would give the doctors something to talk about. Dad has to see the doctor also. He has been having some tests run and has not been feeling the best. Say an extra prayer for good news. I think we have had our fair share of bad news this year.

This is What I will be planting next year.

Description and Natural History of the Periwinkle Catharanthus roseus is known as the common or Madagascar periwinkle, though its name and classification may be contradictory in some literature because this plant was formerly classified as the species Vinca rosea, Lochnera rosea and Ammocallis rosea. Furthermore, lesser periwinkle (Vinca minor) may also be called common periwinkle. Both species are also known as myrtle.
In any case, this periwinkle is a perennial, evergreen herb in the dogbane family (Apocynaceae) that was originally native to the island of Madagascar. It has been widely cultivated for hundreds of years and can now be found growing wild in most warm regions of the world, including the Southern U.S. The plants grow one or two feet high, have glossy, dark green leaves (1-2 inches long) and flowers all summer long. The blooms of the natural wild plants are a pale pink with a purple "eye" in their centers, but horticulturists have developed varieties with colors ranging from white to hot pink to purple.
The plant has historically been used to treat a wide assortment of diseases. It was used as a folk remedy for diabetes in Europe for centuries. In India, juice from the leaves was used to treat wasp stings. In Hawaii, the plant was boiled to make a poultice to stop bleeding. In China, it was used as an astringent, diuretic and cough remedy. In Central and South America, it was used as a homemade cold remedy to ease lung congestion and inflammation and sore throats. Throughout the Caribbean, an extract from the flowers was used to make a solution to treat eye irritation and infections.
It also had a reputation as a magic plant; Europeans thought it could ward off evil spirits, and the French referred to it as "violet of the sorcerers."
Western researchers finally noticed the plant in the 1950's when they learned of a tea Jamaicans were drinking to treat diabetes. They discovered the plant contains a motherlode of useful alkaloids (70 in all at last count). Some, such as catharanthine, leurosine sulphate, lochnerine, tetrahydroalstonine, vindoline and vindolinine lower blood sugar levels (thus easing the symptoms of diabetes). Others lower blood pressure, others act as hemostatics (arrest bleeding) and two others, vincristine and vinblastine, have anticancer properties. Periwinkles also contain the alkaloids reserpine and serpentine, which are powerful tranquilizers.
Because the alkaloids in this plant can have serious side effects such as nausea and hair loss, it is not recommended that people attempt to medicate themselves with periwinkles.

Every Thing You wanted to Know about Vincristine and were afraid to ask. '

What is the most important information I should know about vincristine?

(So, like it really matters what you know an don't know because we are being pulled through this black hole and this is part of what we receive.)

Vincristine should only be administered under the supervision of a qualified healthcare provider experienced in the use of cancer chemotherapeutic agents. (So do you think that this is something anyone can get off the street?)

Serious side effects have been reported with the use of vincristine including: allergic reactions (difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives); nerve damage (burning, pricking, or tingling; loss of reflexes and difficulty in walking); severe nausea, vomiting, constipation, and loss of appetite; and others. Talk to your doctor about the possible side effects from treatment with vincristine. ( I must say they have a long list ways to treat these side effects.)

What is vincristine?

Vincristine is a cancer (antineoplastic) medication. Vincristine interferes with the growth of cancer cells and slows their growth and spread in the body.
Vincristine is used in the treatment of leukemia. Vincristine has also been used in the treatment of Hodgkin's lymphoma, non-Hodgkin's lymphoma, rhabdomyosarcoma, neuroblastoma, Wilms' tumor, and other types of cancer.

Vincristine may also be used for purposes other than those listed in this medication guide.

Who should not use vincristine?

Do not use vincristine without first talking to your doctor if you have
liver disease;
kidney disease;
a breathing or lung disease; or
Charcot-Marie-Tooth syndrome or another type of nerve or neuromuscular disease.
The use of vincristine may be dangerous if you have any of the conditions listed above.
Vincristine is in the FDA pregnancy category D. This means that vincristine is known to be harmful to an unborn baby. Do not use vincristine without first talking to your doctor if you are pregnant or could become pregnant during treatment. Contraceptive measures are recommended during treatment with vincristine.
It is not know whether vincristine passes into breast milk. Breast-feeding should be avoided during treatment with vincristine.

How should I use vincristine?

Vincristine should only be administered under the supervision of a qualified healthcare provider experienced in the use of cancer chemotherapeutic agents.
Your doctor will determine the correct amount and frequency of treatment with vincristine depending upon the type of cancer being treated and other factors. Talk to your doctor if you have any questions or concerns regarding the treatment schedule.
Tell your doctor or nurse right away if you notice redness, pain or swelling at the place of injection or anywhere else on your skin.
Your doctor will probably want you to have regularly scheduled blood tests and other medical evaluations during treatment with vincristine to monitor progress and side effects.
Your healthcare provider will store vincristine as directed by the manufacturer. If you are storing vincristine at home, follow the directions provided by your healthcare provider.

What happens if I miss a dose?

Contact your doctor if you miss a dose of vincristine.

What happens if I overdose?

If for any reason an overdose of vincristine is suspected, seek emergency medical attention or contact your healthcare provider immediately.
Symptoms of a vincristine overdose tend to be similar to side effects caused by the medication, although often more severe.

What should I avoid while using vincristine?

There are no restrictions on food, beverages or activity during treatment with vincristine unless otherwise directed by your doctor.

What are the possible side effects of vincristine?

If you experience any of the following side effects from vincristine, contact your doctor:
an allergic reaction (including difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives);
nerve problems (such as burning, pricking, or tingling; loss of reflexes, or difficulty walking);
little or no urine production, painful or difficult urination, or excessive urination;
constipation or abdominal cramps;
nausea, vomiting, or loss of appetite;
weight and muscle loss or wasting;
inflamation and sores on the lips or inside the mouth;
hearing problems;
vision problems;
jaw, throat, bone, back, or limb pain;
headache;
temporary hair loss; or
redness, burning, or irritation at the injection site.
Menstruation in women and sperm production in men may stop.
Other side effects have also been reported. Discuss with your doctor any side effect that occurs during treatment with vincristine.

What other drugs will affect vincristine?

Many drugs may interact with vincristine. Talk to your doctor and pharmacist before taking any other prescription or over-the-counter medicines, including herbal products, during treatment with vincristine.


Where can I get more information?

Your healthcare provider may have additional information about vincristine that you may read.

What does my medication look like?

Vincristine is available with a prescription under the brand names Oncovin and Vincasar PFS. Other brand or generic formulations may also be available. Ask your healthcare provider or pharmacist any questions you have about this medication, especially if it is new to you.Brand Names:
Oncovin
Vincasar PFS

So what a great drug. Actually I will be planting the front yard full of the plant this comes from next summer. Should be a hoot.

Where do you buy Vincristine?

Chemo, Chemo, Chemo

It had been ten days since the last dose. We have had a great time. I am doing this entry in yellow in honor of Methotrexate. A lovely drug that comes in this color of yellow. Each time she received a dose, she is run through a battery of tests. They monitor her counts, her side affects and her liver. They want to know just how mad they can make it before they have to stop. Each dose is larger than the last.

Today was about 200 units. It takes about 20 seconds for her body to react. She begins to be flush and then she says it feels like her stomach just turns over. She grabs for the bucket and waits. Today we did all the pre-dosing with anti nausea stuff, zofran oral and IV but it was not enough. They gave her a half a dose of Atavan. That knocked her out. Even with a half dose she had to use a wheel chair to leave the hospital.

She was a bit goofy and now is sound a sleep. Not a restful sleep, but a fitful drug induced sleep. Two more doses of Methotrexate during this round IV and then on to the next phase. Oh, joy. She receivies it in her spine about two dozen time and then she had to take about 100 doses orally. I am so glad to know that she never has to have the mega doses we have seen in the hospital. Some kids get a couple of liters overnight and then they have to wait until it clears from their system. Scary Scary stuff.

We are liking this point in time. She has an ANC that would let her lick door knobs. She is starting to do a bit of homework. She is eating a bit and drinking more. She even wanted to know what was for dinner. I have not heard those words for a long time. I will see what the night will bring.

I am hoping we can wake up tomorrow in the same place we were today before the chemo, but then I always hope I will wake from this dream. This horrible place I can not escape. I have done no after Christmas Shopping, I have no Christmas Cards for next year, I know there are bargins out there but like many things, I can wait until next year.

Oh, yes, the overnight with Ana and Isabel and Yaya was a hit. There will be more of those soon.

It feels more normal today than it has in a long time.

I watched " Angels in America" and quilted. I had a couple of cups of coffee and ate some bad holiday type food. Nothing very special but in many ways it was a stress free day. I still have the very last of the Christmas dishes to deal with. I always fail in that "putting the dishes away part of the process. I also lack that with laundry. I wonder what is in the washer? I better check.

M-E went with her father to spend the night with the other side of the family. She was in seventh heaven when I talked with her today. Kids want family time in all of it's forms. Fun stuff, down time, naps, shopping and just having breakfast. It has been a long time since she and her dad have had that time unless it was at the hospital. I found that the chance to spend the night with the Sierra clan gets her to drink more and that is good. I am expecting a call and to be asked if she can stay tonight. I better get off the computer and figure out when her chemo is tomorrow. She will not be in a great mood afterwards so she might as well enjoy some time now. We are very much on an hour by hour process.

"Angels in America". I really expected more. It was fine. I am glad that I saw it but I think the book "As the Band Played On" was a better story. I loved the Mormon, getting married to make everyone thing they are straight thing. I have seen that more than I think people believe. Lots of good characters. The part I liked the most was about the desire to return back to earth. As messy as life is, life is pretty wonderful and worth fighting for all the way. It is a message I relay every day.

I am looking forward to next week. I am going to just have some fun with my daughter. We are going to watch part of the second season of Gilmore Girls and finish Northern Exposure. We are going to go for a couple of walks. We are going to tackle a couple of projects but not big ones. We need some down time. Some time to get bored with each other. I have a list of movies I want to see. I hope they are still around. We could do a couple a day if we can get up and out the door. I am the only person on the earth to have not seen The Incredibles or Polar Express. We shall see.

What ever we do will be fine. I am sure M-E is going to want more time with her Dad and she should have it. I might even make laundry progress. Now there is a pipe dream.

We will Never Forget this Year

It is dark, the day is gone. The memories will never be gone. The candles are lit and I still have one more load of dishes to do before I am through.

M-E is off with her father and that part of the clan. I packed her up with medical supplies and headed to bed for a nap. I will be headed to bed for more sleep soon. It has been a long year and this feels like a mini vacation.

M-E did not get up until 9:00 a.m. and was not moving very fast. I hooked her up to a fast liter and we settled in for some present opening. Lots of presents. Lots of very thoughtful gifts. Little things like a good book or a bottle of Holy Water. A novena booklet and a beautiful lilac Kitchen Aide my mom said I did not need. Sometimes you need the things you don't need more than the things you need.

Our neighbor Michael came over to show us the pink suede, fleece lined coat some one had given his dog. I want one for me. Let's visualize "Large middle aged women in pink suede..........................." Okay, this is bad. Anyway we opened presents and called Johnny. The clan arrived.

Isabel was eyeing the tree. We had some breakfast and she was very good. She knew what those things were. She did not know what the stocking were for however. She is fast learner. After she found candy in her stocking, she told mom to look because they were full of chocolate.

I am please to report that Santa scored. The Stick's table was a bit hit. The IPOD accessories were also good. It was weird to shop for accessories for a small electronic device. But then remember my good friend Miller always did say that you are your accessories.

All in all it was good and now I need some good rest. Merry Christmas everyone. The real question, should I get up and go to the mall to buy next year's Christmas cards or sort through the bags I filled to clean the house. I will see what the morning brings.

What a Christmas!!!!!!!!!!!!!!!!!!!!!!!!! Eve

We had friends over for dinner tonight and low and behold the Kitchen fairies are not on duty today. I am always amazed that we can create so many dishes with a few meals. I guess I am out of practice. I will face it in the morning.

So Christmas Eve...

Christmas Eve day was crazy. I did a bit of shopping before 11:00 and then had to shift into Martha Stewart mode. That means I had to find the lace table cloths. Our Grandmother's really knew what great things they were. If you put on a lace tablecloth, the table looks great. They also have little holes in them and lots of stuff falls through and the table continue to look great. If they have old stains or weird places on them that's where you put the candle with the wreath there until it gets dark and no one notices. It certainly works. We pulled it off.

We were able to go out the door by 3:15 for church. We found a couple of seats, a true Christmas miracle. I love Christmas Eve Mass. The kids are excited, there are lots of people there and we get to sing my favorite hymns. I have a new appreciation for Mary. I guess all moms know they have to watch their children suffer but during this season the thoughts are on the good times. The times full of warm places and special gifts. Usually it is the little things that bring a smile and a warm thank-you. The church is lit, the parents know they have made it to the last stretch. The priest is very too the point and poignat all at the same time.

We returned home and found the smell of crown roast greeting us. It was all good. A few friends joined us. Lots of discussion of Santa and what was going to be arriving.

Around 8:00 p.m. Johnny called M-E to tell her that he would not be able to make it. She took it like a trooper with that now well set stoic upper lip and said, "I love you, see you tomorrow." She meant it and I had not told her he said he was coming to dinner.

There are many things that Johnny is, but sometimes he does not exhibit that moral fortitude that it takes to walk into a house of people with his new family. He just hates conflict or having to fess up to things. Water, easiest path etc. Well, ten minutes later, in walked the rest of the Sierra Family. We could have ended Christmas at that moment. M-E was so pleased. She had all she wanted. Her family together for Christmas Eve.

Enter Isabel, Ana, and Yaya. Isabel quickly assessed the situation, Regalos (presents), Elizabet ( M-E) and "Mommy who is that (Sophie) and what toy does she have?" She was set. She is not too sure about me or the rest of the adults. We settled in for the rest of dinner, dessert and some Pre-Christmas chatter.

Thank God for years of training in my family about life and people and learning to let the waves wash over you. I think back on the things that happened in our family over the years and this will become a bit of the family history. "Remember when your father forgot to mention to you or me or his mother that he had been married for two years and you had a two and a half sister?" Remember when I cut off your Aunt B's finger? Remember when Uncle David forgot to tell anyone that he dropped out of school and was dating Madonna's Sister Paula and modeling in New York? Remember when Great Aunt Julia showed up for Uncle Alex's graduation a year early?. Remember when................................... It is just tapestry with a lot of interesting things to examine.

Cookie Party was a success

About ten years ago I started hosting a cookie part for my Cousin's and their kids. I would make the cookies and the frosting. The Cousin's brought food and the kids decorated. It has taken on several variations over the years. Lots of sugar, and deeply colored frosting. More than lots of little sprinkles. One year we did 17 or 18 Gingerbread houses.

I used to search high and low for decorating stuff. I have a life time of silver balls for the cookies. That year they were featured in Martha Stewart Living was simply hell but I will never run short. I am please do announce that the shelf life of sugar is a billion and one years.

Mary-E really wanted a return of the Cookie party. I decided that this was not the year to say No. So I gathered the troops. Called the cousins announced they would make an appearance. Not an invitation but a command. Then M-E asked Colleen Battaglia* to make the dough. We were able to bake the cookies. Cousin Carolyn was given the job of making frosting. We were set.

My sister had contacted Claire Cordon and told her about M-E's wish and she offered to do everything from bake to frost. She and hubby Michael were given the task of coming up with adult foods and snacks. It was a go.

It was great. A good time was had by all. The kids that now range from 17 to 7 (8 total) had a wonderful time. They laughed, they let sparkles and colors fly. It was quite a sight. They then were kind enough to entertain themselves with games and laughter and good teasing. Kavik (16.5) and the only boy, was able to even have a good time. How can he complain with all those bossy women around. He is getting a good life lesson. Bossy women are the best and this family is full of them.

Mom called and wondered why they were still there. I pointed out it was only 7:30 to which she replied it was dark.

Everyone went home and M-E said, "Thanks so much Mom. It was better than I remembered." And that says it all. Even right now when things feel like they have spiraled out of control and things are upside down, it is still about making new memories and reinforcing the old ones.

Thanks to everyone that helped with this year's party.



*Yes, even sweatshirt thieves have redeeming value.

We are enjoying some good times.

Evidently my notice of absence did not reflect the correct date. I did the unthinkable and did not go to work yesterday and don't plan to do so today. I looked at my Blackberry a bit and I turned it off. I still have not turned off my office computer but will do so if I can even stand to log on to it. I did sleep in until 6:30 this morning.

The cousin's are gathering this evening and we have a bit of straightening up to do. The cookies are baked and plentiful, frosting is not my problem. I have the sparkly stuff. I have the monumental task of clearing off the tables.

Tables are meant to be used aren't they? What a pain. I just have lots going on and have no hyper child so I can not take any of their ADD drugs. Oh, well. I brewed an entire pot of coffee just for me.

Am I the only one with bags and boxes of stuff that was cleared off the tables or other like surfaces and never looked at again? Just think of what treasures will be found someday. I did look in one of those bags yesterday and found the gift bags one of my cousin's ordered two or three years ago. I even think it is tacky to wrap it up and give it to her as a present.

Here is my goal for the day. I am going to clear off the tables and not stuff the stuff into a bag and stuff it into a closet or take it to the basement where the stuff mountain grows like Mount St. Helen. I am going to take M-E to the hospital to have her PICC line looked today and not tomorrow. I am going to not buy more jinggle bell necelaces that are really irritating. I am going to enjoy some quiet moments with my child. I am going to get another cup of coffee and light a few more candles and enjoy the last quiet moments.

Meat is Ordered

I have not turned off the office computer but have ordered:

1. Crown Roast (Pork)
2. 2 Lbs of thinnly cut Tenderloin for Christmas Brunch
3. 5 lbs of vacuume packed bacon
4. 1 Boneless Leg of Lamb for New Years

See, I can relax.........

Do you think I need to have another cup of coffee.

I love this time of the Morning

Rumor has it we will have more Sun today. Well maybe a few more seconds but every bit will help. This has been the year of the unusual. I have had to adjust to so much. They talk about life changing moments but I wonder how many times my life has to change. I think about some of those "moments" and believe me there have been many. Maybe I am like one of those stupid men in the Bible that has to be thwapped upside the head a dozen times before they understand what they are supposed to do. I am just waiting to walk too close to the shore and get swallowed by something and puked up somewhere. Oh, no that's right I can not take any trips for awhile.

It is quiet, and dark and the Christmas Candles are burning. The tree is lit and the village is on (fondly called that "idiotic thing on the piano that is a waste of space, time and money and electricity" by my mother.) the coffee is good and strong. Thanks Jack and M-E is asleep. Not a fitful sleep but a restorative sleep.

I just walked out of my office yesterday and left piles of things undone. It has been a long and difficult 4 months and I have just stopped working until 2005. I may be so bold as to go on to my office computer and turn it off. I won't receive any "re-directed" e-mails or anything. I have not been brave enough to do that yet but I might still. In the past I have disconnected by leaving town. This year the challenge is to disconnect while in town. I have always needed to put a physical distance between myself and work before I could let it go.

I have such a sense of being responsible for everything. When you are raised to be responsible it is sometimes hard to let go of somethings. If you teach your children they can bring about change and to work hard, it has mixed results. I know that I can make things better and sometimes that knowledge makes it difficult to step back and let others have some success.

By our very nature lawyers feel lots of pressure and have this, WE CAN DO IT attitude. We go to work when we are sick , we push ourselves too hard. We ignore our lives and that makes us grouchy and nasty and even mean. But then we get rewarded and paid more than $200.00 an hour for those qualities.

But it is time for me to try and recharge my batteries. I am going to turn off my office computer, because I can and I want to. I am going to have another cup of coffee because I always do. I am going to take the advise of my much older and wiser cousin Susan (She reads the blog and will post a comment I am sure about the Older thing) and do what they say: "Place the Mask over your face first before helping your child."

Did we ever think there was a lesson to be learned from the flight attendant?

Enjoy our first day back to the light.

Santa Delivered

I don't have much time today but here is the scoop. M-E went to Santa yesterday and was granted an extra wish. M-E had this wonderful teacher named Mrs. Dumas in the 5th grade. That was the year that she learned what it was like to be the "Pet". Mrs. Dumas just loved M-E and even more so when at the end of the year M-E took her good kid points and in the auction bought Mrs. Dumas' daughter's AmeriCorp hooded Sweatshirt.

Well the shirt disappeared. I was accused of loosing it or donating it. I suggested M-E might have left it somewhere. Right now, she loves her hooded sweatshirts more than anything because there are days that even portable hair is a problem. We arrived at the Battaglia's yesterday and Colleen confessed that M-E had left the sweat shirt in the van a couple of years ago and they had been wearing it. She and Paul had to enter counseling surrounding sharing issues. They both loved it more than any other comfy shirt. Needless to say the shirt has returned to it's rightful owner.

As I write this brief note I realize that I should suggest a movie or reality show about lost clothing and how it finds it's way home. Just think, the shot could include the shirt or much loved sock getting separated and then thrown by the evil Grandmother into a basket for a while with the rest of the mismatched and then eventually off to the "Poor People" and then the former owner digging through the bin at the thrift store..................................

Additional great news.

DR. BELLELIZABETH FOSTER of Chinle Arizona
is pleased to announce that after months of whinnying she has passed her boards. She was wise enough to take her sister's advise and not begin to study again for the boards just because her friend had failed. She was ranked 11th in the test.

She was going to get a television after she passed but she bet our Father double or nothing on a $250.00 debt, she would fail and he intends to collect with a vengence. There will be no Television this year.

Mary-Elizabeth is Pleased to Announce

Mary-Elizabeth is pleased to announce the inadvertent discovery of Ana Isabel Sierra age 2.5. Sisters are doing well with the discovery of each other. Mary-Elizabeth is also pleased to announce the discovery of her new step mother Ana.*

The entire Sierra family enjoyed an outing to the Pacific Science Center where the sisters learned they shared a common sense of humor, a love of water play, and whales. They also learned that bothering their father was great fun.

Both girls have expressed the desire to spend more time together and joint holiday activities are planned. Mary-Elizabeth is a bit concerned that Isabel already has her ears pierced and fears that their father will not make Isabel wait until she is 16 to paint her nails.

Mary-Elizabeth examined the lock put on her door to keep Alisha out and found it to be satisfactory.

* I guess I don't get to make any ESM **jokes.
**Evil Step Mother

Progress is finally apparent

Mom has been watching the process across the street. She is very impressed with the ability of the heavy equipment operators. There is often lots of activity and not much evidence of progress. Sometimes things go by leaps and bounds and sometimes there is just lots of noise and at the end of the day you wonder what everyone has been doing all day.

This last month has felt that way. I can report that there has finally been some progress with M-E. She is finally feeling better. Father of course will claim it was his sourdough pancakes and the fact he told her to drink. (Oh, he is the first to tell her that.) Mom will be sure that it was because she told me to leave her alone and not require her to wash her neck. Her father will assure me that it was his visits this week. The doctors will just nod smugly and say "We told you she would get better". I will know in my heart that 22 days of fever, many nights in the hospital and liters and liters of fluid and hours of just sitting is the key and pray that I can learn to be more at peace with that reality.

Time, waiting, letting the body heal. No magic pills, no simple cure. Time, when we allow it to do it's magic it does work. Her bone marrow wants to do it's job. Her body has been under a sever attack for 4 months. It was tired and she needed time to heal.

I was reminded by our doctor that my daughter did have cancer and that she had had more than 200 doses of chemo and radiation. She had been in the hospital twice a month for 4 months and to the clinic so many times that we cannot keep count.

Oh, well, maybe I will learn that I too need some time. Some time to not feel rushed or guilty or pressured. We will both try and make some progress.

Just know that today all is quiet across the street and we have time today to enjoy.

M-E's Christmas List

IPod Gift Certificates or Amazon Gift certificates, Art stuff, letters, notes, amulets and good luck charms. Scrabble dictionary, E-Mails from friends. Her E-Mail address is MEB12@msn.com

I have no other good ideas at this point in time I guess I need more coffee.

sal

One more Thing

What a day! Surgery and Chemo all in one day. When am I going to learn that I need to not do evething at once. I guess it is the feeling that I have that there is just no more time for any more trips to the hosptital. I keep trying to make this process easier and fail.

We were in the hospital at 7:30 a.m. We checked in for surgery. I was forced to leave the area because I had a cup of coffee. Evidently there are children that eat and drink and are upset about seeing people eat and drink. What a surprise?

We were checked in and seeing the doctor and were told that Mary-E had been bumped. Evidently there was an emergency and they took that child first. Can you imagine that they would do an emergency procedure first? The nerve. We switched gears and headed to the Hem/Onc clinic for chemo. M-E had to have the IV in her hand while she was awake.

That was the start of the slide downhill. Her chemo made her sick, they forgot that we at the clinic, the surgery went well but then the PICC was placed in a weird place and she had to have the dressing changed and then it hurt and she is upset and she is worried and she is just sad.

She had a good night's sleep and I hope things will look better this morning. We are supposed to go to a Christmas Party tonight. Everyone is hoping she can go. Not more than I.

I am hoping to get some time at Christmas. I have to have some time with her. I have to try and find my daughter and return her to reality.

The PIIC Line gave out yesterday

I was having a great time. I was doing a deposition where the deponant didn't know his name. We were making great progress. He was beginning to have a return of memory and we were at the point where his attorney was tapping him on the sleeve. That is always a good sign. The receptionist came in with that look on her face. My office had called and Mary-Elizabeth had been taken to the hospital because her line was leaking.

I knew that could not be a good thing. I have had four months of "My Kid Has Cancer" training I went back into the room. Asked a really great question and then rushed to the hospital. There she sat, watching Ellen Degeneris and smiling. Her line was out and she could go swimming. This was a good and cherished moment. No blood squirting out of the line, not swollen arm where the fluid was going to the wrong place, no apparent trauma.

No worries about Chemo scheduled on Friday or the need to have 3 liters of fluid a day. No, just thinking about swimming. The worry was not sticking to her. No, that is still my job. I am the designated worrier.

When do we have to have a new one.? How will I keep her hydrated? What is involved in moving the line from the right arm to the left? Is the line longer because of it's placement? Will this one work like the old one? Will we get through this phase without having it replaced? What does this do to my work schedule? Can I ever leave her alone again even for a minute? Where is Orion this morning? Who thought about putting stickers on fruit and why aren't they cute? Does Linsey Lohan really only drink a little bit? When will the Cubs win the world's series? If four months seems like a life time, how can 4 more years not be eternity? Oh, God how long have I had Adult ADD and what is the name of the medication that will cure me? When did television become the main source of medical information via Pharmacy commercials? Will I ever feel like life is just not crazy again?

See, I do a great job at worrying. I need a life. A real life. I will worry about that later.

Here is the plan. At 7:00 a.m. we leave for the hospital. We have to be at surgery at 7:45 a.m. They plan to insert a new PIIC line around 9:00 a.m. She then needs to spend some time in clinic while they draw blood, do an exam and then give her some chemo. I then bring her home , hook her up to Baxter, our new infusion pump and go from there. Sounds simple, I am pretending it is routine. I am praying she does not have a fever. I am praying that the anethisiaolgist that I relentlessly harrassed and deposed and tortured is not in the operating room. I hope she does not get sick from the Chemo, I hope she does not react badly to the procedure, I hope that we get through the next few days.

One Step Forward, Three Steps back

I need to go take a shower and go do four hours of a deposition. I could be more ready but then I have to rely on the fact that I have done this many times and it will take on a life of it's own. Sort of like this thing named Likemia that has lived with us for four months.

M-E is in what is called Interim Maintenance. This is supposed to be a good time. Time where her body rebuilds itself. Every 10 days she has to have some chemo but in our world that is a cake walk. I looked at the schedule and thought she would be in school, I could work, we could do some Christmas stuff, we could have a non-stressful time. This would be a time to get a sense of equilibrium back.

99.9, 101.2, 100.6.................................................... The Yucks. No explanation, no apparent cause, no relief. 3 liters of IV fluids a day and I am back to begging and pleading for her to eat or drink anything. She has to get over this. She has to have a day or two where she feels better. She has to want to join the world again. We have hit 24th day of the fever. Okay, that is a problem.

I keep learning more and more about medicine. Did you know that around 4:00 am your body temperature simply drops? That's why you wake up sometime in the middle of the night, ususally at the same time. It is not anxiety or too much water before bed or because the dog needs to go out, you just have to move around a bit to get your temp back up. Those of you that sleep all night would not do well in cave times. In the afternoon when we all want that sleepy time our temperatures are up. We need to sit down, have a spot of tea and relax while the body clock resets itself. Afternoon cocktails are to be encouraged.

We will fight this and get through it. We will have a Christmas with an under decorated tree, very little hoopla. No Lion King, Nutcracker, A Christmas Carrol, ride on the carousel or even dinner at Ruth and Jerry's with friends. We might even miss Christmas Eve Mass.

But we will have a great tree with a crooked top and lots of lights. We will have good smelling candles and I might even organize my Christmas stuff. It will be fine.

I will take some time next week and just do the only thing that seems to make M-E feel better right now and that is hold my daughter ever so gentlyand just be there. Not on the phone or on the computer. We will watch some bad television. I will just crawl on to the bed and try not to hurt her. I have this need to sort of pet her head and surprise, surprise, hair hurts when it grows back. Who knew and why did they not tell me?

Oh well I suppose I should not be surprised at what people don't tell me I am a lawyer on the way to do a deposition.

Fourth Month

Four months down. She is still fighting a nasty low grade temp. I have bugged the doctors enough that they will let me give her some Tylenol. She feels better, she then eats and feels better and then she drinks and feels better and then her temperature drops and she feels better. What a cycle! Then I have to argue with the doctors to give her more Tylenol. Buy stock in what ever company makes it. The good news She does not have any ugly bacterial infection nor Viral Spinal Menengitis.

I am going to hook her up to more fluid. The 7 hours in the Emergency Room on a Sunday story will have to wait. Just thank your lucky stars your 6'2" son is not doing Meth. Just know that Children's Hospital is not just full of meek, pleasant sweet 12 year old nurses.

For those of you keeping track of the construction site across the street, 5 cement trucks poured one of two foundations yesterday. Mother reports the Porta Potty has been turned so she does not have watch the men zip up. Mary-Elizabeth would not let her offer to washer their cloths.

Moms

Moms. They come in lots of different varieties and we have all had one or more in our lives. Women that share a special love for us. Women that tell us the secrets of life. Women that let us know when we have crossed a line or push us across. Moms come in lots of shapes and forms and sizes and ages. (More than once I have held a very honest 3 year old that has gently probed my soft stomach and said " Your soft and Squishy") I always hope they remember that warm lap.

The Moms I have been meeting are a very special kind. They are on a mission like no others I have ever met. They have had their worlds attached by words like Liiukkemia, Neuro Blastoma, Ewings Sarcoma, Aplastic Anemia and more. They each have a tale. A moment when it all changed. A moment when all they could see ahead of them was slumping presidents, exploding space shuttles, burning towers. A moment that changes the world in a way that only a mother could imagine. The moment when they realize their child could be the subject of the "We need to think about focusing on making your child comfortable" discussion.

The Moms don't think about that conversation. They think about the Road Map, the protocol, The New experimental drug. They find cavernous pools of positive energy and mine it like moles in the center of the earth. They keep bringing it to the surface and focusing it on accomplishing the next task. Can they find the right drink that will help with hydration? Can they find the perfect food to counteract the calcium loss? Do Dip & Dots really raise ANC? Can their child tolerate one more vital sign check before they simply loose it? Is a bath a possibility?

The focus is intense.

So is the resentment.

Why is Fortune Magazine doing a cover story on how Prostate Cancer is being cured? Would childhood cancer be cured if Lance Armstrong's child was stricken?

What about the little girl whose mother holds and rocks her while she vomits endlessly post chemo. The mother who had to hear that the reason her darling 2.5 year old girl started to stumble was that she had a brain tumor the size of grapefruit that needed to come out. The little girl with the port at the top of her bald skull. The port that takes the chemo directly into her brain. What about the quiet yet frantic walk of the young freckled woman endlessly pushing her 18 month old on the lilypad while she waits in the hospital, on the floor 10, 20 sometimes 30 days for the ANC to come back from 0?

What about the never ending frantic guilt and resentment that comes from knowing the kids want their moms to be there all the time and knowing that at some point in time, Mom's need to leave, if only for a shower and a cup of coffee.

What about the resentment that comes from being out of the hospital and realizing the world has gone on without you? No even notices how haggard and tired you look , or how very very sad you are.

The only ones that truly know are the other Moms that rock the children, get the ice, search the snackcart for an acceptable treat, call the nurses, make up the sleeping chairs and fitfully wonder if they will ever have to have "The Conversation".

While the Cancer Mom's are dealing with their world crumbling, there are the MOM's that are getting us through. They call and do laundry. They bring us coffee and listen to our endless ramblings. They tell us stories that make us laugh. They remind us that even if the world has gone on without us it is waiting for your eventual return.

I certainly could not do this without all the help from everyone. Thank you one and all.

WE Escaped Certain Hospitalization

2:00 p.m: Call from Mom: She does not feel well, her temp is 101.8
Response: I will meet you at the hospital

2:02 p.m. Call to Hem/Onc: We are coming in, 101.8 and punkie kid.

2:22 p.m. Arrive at hospital, no Mom or M-E. Mom has this thing about finding the perfect parking spot. Must be close, must be able to drive right in to said spot, must be able to back out without having some big honking SUV or giant pick-up able to park behind you.

2:30 p.m. M-E arrives by herself. Mom still looking for perfect spot. Back to a room, warmed blankets found. Temp 102.8

2:40 p.m. Mom finally arrives. She had to wait but found the "Perfect Spot"

2:45 p.m. Heidi arrives to draw blood. Culture bottles, all sent stat. More warm blankets. Mom announces she is going home. It will be dark soon and she made good soup. If I have to stay I have cloths in my hospital bag. I suggest that if I show up at the office in orange flowered workout pants I will get fired. She tells me can wear the same cloths I have on back to work. She is my mother, I can not argue.

2:50 p.m. Dr. Pendergaste begins to examine M-E. He concludes she is sick but has no answers other than she is stewing some bug that we can not detect. We wait for the counts to come back. If her ANC is under 200 we have to stay. If not we go. I pray to the ANC gods. I have a hole in my pant hose and don't want to wear them again.

3:12 p.m. Heidi returns with an IV pole and 1500 in fluids. They begin to run at 999 drips per hour. I am jelouse. Baxter, our home pump, will only go 499. I want a bigger IV pump.

4:17 p.m. Dr. Pendergaste returns with the numbers. ANC 1572 we can go. More fluids, she needs to brush her teeth more. She may have a bug but we can not just give her random antibiotics until we know if she has something.

4:32 p.m. 1000 ml bag done. M-E claims she wants to stay a bit longer. I realize she would like to watch Dharma and Greg. We do the 500 ml bag.

5:16 p.m. we leave for home.

6:12 p.m. Mom's soup is good.

It's Been Awhile

I have not been at my computer for a few days. The wind was knocked out of me on Saturday when I went to Kesly Judd's funeral. Mom insisted on going with me because I come from a long line of "Good Moms". It was a Baptist funeral held in a catholic church. The church was almost full. I will be writing a letter to the Evergreen-Washelli bunch later. I will be using the words RUDE, INSENSTIVE, ________ etc. It was a very moving and yet scary experience.

It has taken be several days to return to a positive and hopeful place. It was a bit like watching news reels and then landing at Normandy. Just put it this way, reality is not a good thing. It is hard to return to that "everything is going to be alright place".

Sally Ann, the 4-6 year old that sometimes rears her ugly head and has a tantrum or can be lots of fun when she invites 18 families to her house to make Gingerbread houses ( all from scratch), has been very very unhappy these last few days. She vividly remembers the day her brother was taken away to the "hospital" and never came back. She remembers the subtle tears in her Mother's eyes when the forgotten Teddy Bear was handed to her mom and she said, "Mommy you forgot Eddie's bear" .

Sometimes, I am caught in the news reels but sometimes is is difficult to remember we are not all in the same one. I will return to that place that is safer and more stable but it is going to take some time. It's like the lot across the street, it took moments for the house to be destroyed and will take months for new houses to appear. They laid the footings and they don't look very sturdy but soon will be reinforced and improved.

It's going to be okay. The Christmas tree is up, the lights are up outside. The advent calendar is up to date and I had good Coffee this morning. Life is good.

The View From the Window has Changed.

I have reported in the past about the process of the neighbor moving out. He had a house that had a garage and a basement and an attic and a root cellar and two huge holly bushes that were easily 60 feet high. The back yard was filled with old vehicles and campers and sheds and god knows what else. He left finally and took the last bricks from the driveway about a week ago.

On Wednesday the action began. The NO PARKING people showed up and lined the streets. A Honey Bucket appeared. A huge flat bed with a huge shiny machine came . I missed the unloading but I understand it was very interesting. I was up and at work by 6:30 a.m.

I came home and the only thing left was the Honey Bucket, the big shiny machine and some basement walls. All the vegetation was gone, the trees, the bushes the house, the roof, it was just flat. I am looking out the window as I type and there is a light from the house that was hidden all these years and they seem to have a bathroom window. It is so odd to see the new landscape. Mom said that the demolition took less than an hour. I took all day to haul it away and will take months to rebuild.

I think I need to point out the parallels to Mary-Elizabeth. The destruction of our lives, the bad going away and being replaced by something solid and good and maybe a bit shiny. She and I both need a bit of reminding right now.

We are both in a state. She is not feeling good because of an infection. She is starting week two of 99ish to 101.6 ish and feels ickie. I cannot give her tylenol because if her fever goes higher, we have to go to the hospital but she just feels "yuck". I know that she is not in good spirits when I note that her I-Tunes allowance has been deducted from my bank account and she has not even turned on her computer to figure out what she wants to load on to her new shiny I-Pod. ( Thanks Graham Family)

The Luuchemia landscape changed for me on Thanksgiving Day. I was speaking with Johnny and ran to Lisa Judd. Lisa had been the Secretary of the business and Legal department when I taught at Edmond's Community College. She recognized me while M-E and I were at a clinic appointment. She re-introduced herself and I met Kelsy. Kelsy was 8 when she was diagnosed with ALL in July of 2003. She relapsed July of 2004. They were starting the process to prepare for a transplant.

Lisa was upset but holding it together. She reported that Kelsy had relasped again and had been in the ICU for 3 weeks. She had had a heart attach and surgery and was on a Heart Lung Machine. I knew that it was bad. All I could do was give her a hug. Over the 5 days I was there I dropped by the ICU and chatted. She and gave me updates. She said all the nurses and doctors had visited and that things were looking better because Kelsy had opened her eyes two or three times.

It is the little things that make a Mom happy. I knew it was bad. I was told that Kelsy was going to heaven soon.

Kelsy has gone to heaven. Her body just could not take any more treatments or assaults. They started to take the machines away one by one. Her three year old brothers came to visit for one last time when the and one of them said " Kelsey isn't sick any more."

The view from the window has changed. I hope we get a better view.

We Are Home

WE are home I want to do this entry in happy colors because it was not fun. I am learning to be happy with this moment. I no longer thank God for days or weeks or even mornings, we have to happy with moments. Simple moments free of fever or pain or anxiety. Moments of peace and bits of joy. Life is no longer about the big events but the minutes surrounding the little ones.

We had a great Wednesday before Thanksgiving. I was able to work. M-E and Whitney were delivered to the house by Colleen and they made cookies. My mom, in usual Mom fashion, had taken the chips out of the bag and put them in a Ziplock. Don't ask me why, I just find little bags of stuff everywhere. The girls discovered that the recipe on the Ziplock was completely inadequate. They started to search for Chocolate chip cookie recipes. I was informed that lots of cook books do not have such a thing. Fanny Farmer finally came through. I can report that with See's Chocolate Chips , they were the best.

We then went to find Advent Candles and paper for the famous Christmas letter. We went to Outback and then home. We had to get up early for what will always be referred to as TURKEY BREAKFAST. Those were good moments and I was so focused on the next day I did not truly relish them. It was great to just be with Whitney and Mary-Elizabeth.

The hospital is always a reminder of being and paying attention to good moments. We shared a room with a family that is from Port Orchard. They are only a month into the process. They are traveling a different road. They received news of their house selling and a pre-Christmas move. They want so much to be together for Christmas and Sara can not be home unless home is here. Every one rejoiced in the moment of sale. The worry about how to have a child in intensive treatment and moving and finding a house and Christmas came later. They need a 5 bedroom house within an hour of the hospital, with a good school district for $325,000.00 or less. I wish that was the only miracle they needed .

M-E is doing a bit better today. She got some happy news I will let her share at her own time. Suffice it to say she is a happy little girl. She has slept most of the day. She ate a bowl of Honey Nut Cherrios and I have been able to coax a bit of water down her gullet. She has a stubborn streak and she is mad at me right now. She is mad that she is sick, she is mad that I fuss, she is mad that I want her to eat, she is mad that I .......................................... I guess I am mad about all those things also but I am going to try and enjoy a few moments of quiet, and the neighbor's giant blow up Christmas Pooh Bear that replaced the giant Turkey and know that we are home. We get to sleep in our own beds and we are almost at the end of Consolidation. I am going to be happy and content in this moment.

We Are still here

She keeps spiking a fever. I tried to get us out of here on Saturday and failed, I failed on Sunday. We shall see how the day goes. I have some hope we can get her home.

She is very sad and depressed. She is just sick and tired of all of it. This was promised to us to be a good time and she can not see very many good times in the future. We were not ready for a 5 day hospital stay where every day she feels worse. Being forced to leave from post Turkey time festivities was just gut wrenching. I had wanted to get the tree up and I did not even have a chance to find or buy new lights. I just see my happy child leaving down a road I can not walk with her. She has gone to that awful place were I can not reach her.

Sometimes in the tunnel there is does not seem like there is hope. She is in a very dark place. I am going downstairs to see if I can spark her spirits. I am more worried now than I have ever been. She is so mad at me that we are here and feels guilty that she wants me here but feels bad that I have spend nights here and then cannot effectively work. What a mess.

She wants to stop treatment. She knows I need to work. She knows that if I don't work it is bad on many fronts but then she wants me with her right now. I hate that I can not be in more than one place.

So Much for Turkey Sandwiches

99.9, 99.2,99.7, 99.1, call to Children's 101.1, trip to Children's. 101.1 = a night or three in Children's and a wait.

We went to Thanksgiving at Whitney's Grandparents. Ruth had a flight to Denver around 2:00 so we had what will always be called Turkey Breakfast. I had the girls with me on Wednesday night. M-E was warm but not at panic stage. We packed up the pies, the kids, the stuff and headed over the freeway and to the burb to a house that smelled like heaven when we walked in.

The turkey was falling off the bone at 11:00 a.m. When they say turkey at 11, they mean it. Great cranberry jello, stuffing, rolles, vegies, garlic potatoes, and all the rest. We actually ate in moderation. When you have turkey breakfast, you know that there are many more times during the day to eat again, and again and again.

Ruth left and the second round of folks showed up. They were an odd bunch in that they immediatly had pie afterwards. We gladly joined them. I must say the pumpkin was very good this year. Cameron, the 3 year old even went so far as to take her Binkie out to eat.

We chatted post pie and then around 2:00 I took her temp. 101.1. That was that. In the car, quick good byes and then that nagging voice in the back of my head." Sally don't let your car get on empty"

We made it, back to room one, up to Hem/Onc Hilton.
Worst part, I never did get to the turkey sandwich.

Today we get Sandwiches

Maybe it is my age, 51, (don't be embarrassed, you can always send gifts), maybe it is having this new child we call Loochmiah, maybe it is just because I did not get enough sleep last night but I realized this morning I only want a left-over turkey sandwich.

Well, you might say, go have one. You don't have to wade through the day, the dinner the inevitable family dramas or the crowds, the dread of getting Christmas done right. I just think it is time to acknowledge that the post Thanksgiving Sandwich is always the best meal of the day. I wonder if America's Test kitchen has done show on this issue. I have a theory why it is so good.

I can bake a turkey designated for sandwich meat. I can buy cooked turkey in many forms, Mystery turkey stuff, turkey with pepper on the edges, fresh roasted turkey, smoked turkey, natural turkey, and a variety of other turkeys. But it never tastes like the turkey from the slightly still warm picked over bird that has been cooked with the season's best dressing, sliced for the main meal, touching some left over potatoes and that strange but necessary jelly-o thing. It is the sandwich that is made with those bits of turkey from weird places on the carcass that juicy bits hang out. That weird round piece on the backbone or the most tender shreds that are on the inside ends of the rib cage. The mayo must be cold, the cranberry sauce warm, the bread brown substantial and the stomach just not really ready to be fed.

We have had the grand meal, the full spread but we still hunger for more. I guess that is part of what makes us human, we are willing to make the best out of the left overs. We are lucky like that. Just think, what would this world be without Post Thanksgiving Turkey Sandwiches.

Pies are made so the world must be Okay

Mary-Elizabeth had a chemo treatment on Monday. It seemed to go fine. Her counts were good. I thought this was going to be a normal week.

1. She is holding on to her red blood cells (28.5) That is good, the chemo is not killing too many or she is making some of her own.
2. Her platelet count was 101 that was up from 62 on Saturday. She is making her own.
3. ANC 482- was up a little so she is making some immune cells.

I did let her sleep until she woke up and she went to school. Of course, I received the call at 10:30. We chatted and there was no apparent Mom substitute allowed. I finished up a thing or two and back in the car, up to school and home.

I hooked her up to some fluids and put her to bed. Colleen B. had offered to take care of her and as she puts it, she has prior "PICC line Flushing experience" . It seems with Mary-Elizabeth that sometimes she is just two years old and wants her Mommy. Yesterday was one of those days.

She asks for so little and all I can give her is time. Nothing I do can make this awful experience go away. We both will carry the scars forever. She will have the mark of the PICC line and a body that was attached with every possible substance her body can tolorate. I will never recover from that first voice on the phone: "Dr. Garcia Oncology" I will give her the time and attention that she needs.

I did some work and then made pies. I love them to have a day to sit and become Sally's greatest pumpkin pies. I can be a good lawyer between oven ajustments.

We are going to Whitney's Grandparent's House. So the "Over the River and Though the Woods" does apply this year. They live in Federal Way but that is like an adventure. We are eating early so the road should not be too bad and I don't think we will violate the ONE HOUR FROM THE HOSPITAL rule. We seem to be in a quiet treatment time right now.

We have only one more appointment scheduled at the hospital until Pearl Harbor Day. I am not worried about that day because I think we have all ready survived the big attack. M-E was complaining about not wanting to be sick She does not want to eat chicken soup for 2.5 years. I told her she was not sick. She was in remission and that now we were making her body a place that no self respecting llwuecqemia(little known Welch spelling) cell would ever call home. She liked that better.

Christmas decoration update:

Georg Jensen ornaments are up on the arch. We now seem to have 2 from 2001 and 2000 is still missing.
Village is out but there seems to be continued black out. Road crew has yet to appear ( You never can rely on a contractor)
no snow yet.

Goal for this upcoming week-end: Obtain a tree. Get it up and get the lights on it at least.

Newest Prayer: Oh, God, where are my lights?