THINGS THEY DON'T TELL YOU ABOUT LIFE AFTER A DOUBLE CORD BLOOD TRANSPLANT OR ANY TRANSPLANT

Saturday, September 10, 2005

AT LEAST I AM NOT LOOKING........

Each Blood Test makes Me Crazy

I want to have this time be simple and ordinary. I want it to be text book. We started maintenance about 6 weeks ago. It has not gone without incident. There are the hives that seem to sneak up on us, there are the weird blood tests that make the doctor's tense. There are the requests to come in for more blood tests. We are not done.

I have been focusing on the White Blood Counts most. That is the count that shows whether or not the likimea is back. They have kept that count very low. They want to make the bone marrow forget that it used to over achieve in white blood cells.

We have been having some trouble with her counts. I have tried not to focus on the problems because I just can not deal with more bad news. I am trying to recover from last year. I am trying to regain some semblance of normal. I so want things to be okay but am less than secure in that reality.

She had a draw Tuesday. Her red blood and platelets numbers were great. Her ANC had dropped to 640 from 3400. So they took her off the chemo for a couple of days and retested her on Friday. Well she has a recovering ANC but her red cells have dropped from 35.6 to 25.9. She is getting close to transfusion territory. They are happy about the White's and worried about the Reds.

I am just plain worried. I am regretting that we have the trip planned this month but then we both really need this trip. I just don't want us to have to worry. Worry is going to be left at SeaTac.

Well we are moving forward, we are going to breakfast and then to Green Lake and try to buy some shoes. Wish us luck.

Thursday, September 08, 2005

Coffee Confessions

I have my Pete's coffee made in my Starbuck's Pot with a pound of French Roast from the Greenwood Market ( Free Trade of course) waiting to be openned. . I had a cup of office coffee from Cafe Vitero(?) yesterday and a cookie from Starbucks. I realize that I am not a good Seattle Coffee drinker. At this point (oh, let's get real, always) I drink what ever is on the corner.

Note to Cousin Jack: As much as we kid about Starbucks on every corner, it is not true. The hospital and the school and my office are perfect examples. In order to go to Starbucks we have to go down the elevator, to the street, down the block and cross two streets and then go inside another building. I confess, I love coffee but more than one street or an elevator ride is too much.

I am more interested in the cup. Now for the perfect coffee cup. It has to be huge. (Karianna says that in this family we don't drink cups of coffee, we drink tubs of coffee.) The cup has to be of ample size. 8 ounce cups are for measuring flour not for drinking coffee. It has to have a good feel, it has to be made of a china or fine stoneware so as to keep the coffee hot. It has to have the right handle. It has to be balanced. It has to be cute. I have been known to go to the Bon and buy one of 5 or 6 and try them out. Dad gets to sell the rest and it makes him happy. Very few are allowed to stay in the house.

Spode makes a nice mug. The large breakfast mug to be exact. The Sarah's Garden has nice ones but the best ones of all time were made by Royal Windsor. (See picture above.)

In 1970 while on a Debate trip, I bought 7 mugs. I still have a couple. Yes, one is the pencil holder due to a small chip. They were and are perfect. They lived and traveled with me to college, to Dietrich, to law school and to Seattle. Were were down to one that Mom would get out when she was here. We both had looked and looked for them for years. Flea Markets, antique stores, real stores. I asked for people to look in England, Canada. It was a futile search. Then the advent of E-Bay saved my life.

After some diligent searching, I found one, then another. I have a life times supply now. I keep looking. There is one for sale on E-Bay right now. Look under Royal Windsor Coffee Mug. So the long and the short of it, I am more concerned about the cup than the coffee.

Oh, yes, one more thing. There had better be some coffee in the morning or the world is not a "Happy Place"

Tuesday, September 06, 2005

First Day of School of Her Last St. Joseph's Year

Well we did it. We started. We were almost complete in our school list and only had to stop and by kleenex. I don't ever do well with the issues of paper products. If my mom did not buy toilet paper it would be ugly around here.

We arrived at 8:15 a.m. No one reminded me that the school did not open until 9:00. When we arrived, I was sure there was a problem. It was quiet. No busy cars, not kids, no hustle and bustle. I concluded we had arrived on the right day and there had not been a time change. Then we saw a lone confused father refilling his car with "supplies" We camped out and then relaxed. Tully's is still open and coffee was great. We chatted with some folks and the time went quickly.

We have been gone for a year. This should be a fairly normal year.

The kids are at the end of their journey. Each and every event will be the "last time". The last jog-a-thon, the last paper sale. The last ..........

It will be a joyful journey. We are so happy to be on the path again.

Monday, September 05, 2005

Horses

The girls were able to go riding in Eugene.

They had a two hour trail ride and were given great compliments by the trail hand. He was very impressed with the depth of their knowledge and their control of the horses. He said that if we ever were back he would be giving them different horses and take them on a different ride. They had a great time. I have often scoffed at "Equine therapy" I am going to look into it soon. I think it would be useful.

Look at those smiles. What more needs to said. Oh, the girls were sore for days. That made us smile a bit. M-E said that before she rides again, she is going to take tylenol.

Sunday, September 04, 2005

An Ode to Miller Griffiths

Miller lost his battle with AID's. He went down fighting and without regret. He was greatly loved and will be missed. He was such a great person with a sense of self and purpose in his life. He gave so much to so many. My favorite saying: You are your accessories.

I found this poem and kept a copy. It was written in the 30's and I think is appropriate for this posting.

Do not stand at my grave and weep, I am not there, I do not sleep.

I am in a thousand winds that blow, I am the softly falling snow.

I am the gentle showers of rain, I am the fields of ripening grain.

I am in the morning hush, I am in the graceful rush

Of beautiful birds in circling flight, I am the starshine of the night.

I am in the flowers that bloom, I am in a quiet room.

I am in the birds that sing, I am in each lovely thing.

Do not stand at my grave and cry, I am not there.
Author unknown.

Some Thoughts and some Prayers

Each day that passes as we head to school, I say a few prayers. I realize that we have stepped out of our lives for an entire year. We seemed to have missed lots but in many ways things are very much the same. Same uniform, same supply list, same teachers, same schedule. It is very comforting. When people talk about the security given to us by routine and constancy, I never truly, understood. I do now.

We were up early this A.M. and were successful in going to church. There were candles to light and seats to be had. The scripture was one that has always confused me and I need to have a discussion about it with someone some day. It is the one that tells us as people of faith we should confront those in our midst if we perceive they are falling away from faith. If they don't listen, we are to treat them "like Gentiles". What little knowledge I have about Biblical time, that is a bad way to be treated.

I hope the ultimate message should be we should pray and care for those that need it most. I cannot not imagine what a world without spiritual support.

I think I have said a million prayers during the last few months. I have concluded all of our thoughts are a form of prayer. I think that is why "bad thoughts" are to be confessed and forgiveness sought. I think we talk a lot about how to pray and the best place and time and position. I don't believe there is such a barrier between ourselves and God or Mary or Buddha or the Great Spirit. I can not believe there is a "God/Human barrier like there is a blood/brain barrier. We don't have to have special places or ways to be in touch. I think we only need to be aware. I have to believe there is no barrier or I would go crazy.

Lots of prayers are needed now. I have no way to relieve the suffering in Katrine's path but have decided to be kinder and more generous to those in my path. I am going to work on forgiveness and try to be more open to the good things I can accomplish. I am sure I will fail and become impatient with the world and it's occupants but I hope a few prayers will help.

Saturday, September 03, 2005

A Photo taken by Whitney

What Do We Say? Or What do we do?

How to respond? I have been riveted by the news and the frustration. I am sure there is something to do for everyone that are suffering but I don't know what to do. Money? Cloths, offer of housing? What?

I am stuck with listening and watching. As the story unfolds, I realize that we all have situations over which we have no control. Life is simply not fair.

How can those that can make a difference, not? That is just too mind boggling.

Thursday, September 01, 2005

WE are Back

We are back we are healthy, I have to work tomorrow. I will be update on M-E and our trip. A good time was had by all.

Saturday, August 27, 2005

We are going to try and go to Eugene Tomorrow

WE don't seem to be getting very far, very fast.
M-E and Whitney and the dog need to get to Eugene for a week. I need some time off but don't seem to be able to let myself take it. I have so much guilt about the time I need to be at work and torn with M-E's needs, last year physical, this year physical and emotional. I have to let myself have some non-stressful time. I guess I need the world to stop and let me get off for a while.

We have been on a different track than everyone else but it has been quite the work out. I am so tired and know I need a rest but then the work thing keeps me thinking I should be there but when I am there I am not very productive because I am so tired. It is not a great place to be.

So here is the plan, take the girls and the dog and mom's dress to Eugene and a box of stuff for Dad to sell and 6 lbs of coffee for mother and the huckleberries and ....... I better start a list. Then I will stay as long as I can but be ready to come home if I have to. Well doesn't that sound like a restful vacation.

Well we shall see. A short time is better than nothing.

Wednesday, August 24, 2005

I have to Confess

Okay, Uncle, I give. What have I done? Okay, I confess, I did use an entire quart of Huckleberries for a pie. I know Grandfather would never forgive me. I was a Grandchild of E. G. Foster. I did not use all huckleberries. I used other berries okay. I realize that each quart is to be used to make 12 quarts of jam or jelly. I think I was 25 before I realized there were "berries" in huckleberry syrup. I thought it was just some color. When I found a berry, I thought there was a bug. Huckleberries were more precious than gold. Never, never in my grandfather's life did he make a pie just out of Huckleberries.

Okay, I am 350 miles beyond my oil change. Okay, I had the bikes worked on so we could maybe get out in a low impact way. Okay, I worked on organizing M-E's medical bills in a new way and bought some office supplies. (Medical bills should only be sorted into hot pink filing crates.) Okay, I have not washed the car in a couple of weeks, I was going to before we went to Eugene.

Okay, so I did not totally recycle the compost. I have thrown a few things in the garbage that could have gone to one of the three or four approved Seattle Garbage receptacles in the back yard. Okay, I have been "JUST" looking on E-Bay. Okay, I have been making some bad Southern Republican remarks recently. Okay, I have been known to watch useless TV and am reading a mindless book. Okay, I did buy a bed that is so high and comfortable that once in it, I can not get out nor do I want to. Okay, so I took my daughter two days in a row to the good sushi place. Okay, I did call the fellow at 7:30 on Sunday morning to discuss hives. I think that is it.

BUT ENOUGHT IS ENOUGH. None of my sins rises to being subjected to the "Sally your car has some problems. I am not sure what your situation might be, whether you want to fix them or maybe get a new car" phone call.

Yes, I took my car for rotation and there was the problem of the separated sidewall bands. Then the window did not roll up so I took it to the dealer and had the 120,000 mile service. Oh, yes, then the call. Oil sensors, CV boots, rear struts.............. The good news, they will be giving me a complimentary car wash.

So here is my advice. Never, ever,ever, never, under any circumstances discuss , never, ever, any thing you bought for the house or the yard. Plain and simple, the car gets jelouse and its CV boots go out.

Dealing with Hives and Other items

We have been dealing with hives. She has had a series of very difficult times with the itching and then the reactions to the medications that sort of help but don't really help. We have taken away some of her medications and added a medication that is sort of benydryl on steroids. Sunday and Monday were a challenge. At 4:30 am, I made the decision to stay home and take care of her. Good sleep and some distracting activities help.

The car was feeling neglected. It began to show it's displeasure and grew a large bump on the side wall of one of the tires. I had to stop all activity and take it to the tire doctor. Exploding tires on freeways get you in the news. The car is still not happy. As of last night, the drivers side window will not roll up. That can be a problem. I am going to ask nicely this morning. I am going to promise the car a big tune up if it will just wait until we get to Eugene. If it does not work, I will be taking her in this morning to Honda and refinance my house this afternoon.

We had a great trip to Bellingham. We just hoped in the car and headed out of town. I am trying to convince M-E that she has not "lost" so much of her life and we can still "do normal things". She wanted to visit with Margie and work on her bead projects. So we did.

What is nice, is that Margie is old enough to drive and they could go underwear shopping by themselves. I did tell M-E that if Margie started to drink or chase boys she was to get out of the car and call me. M-E assured me that Margie had way to much common sense.

She was very quiet coming home but said" Mom thanks, I am so sorry I get so upset" I assured her that no one thought ill of her and that we all were allowed to get upset at time and to cry and to let people know how we felt. We have been through a tough year and have a long way to go. I apologized for thinking we were done and things would be back to normal and for pushing for normal so fast.

I had thought Maintance would be like getting "back to normal". Our old life. I thought things would be like they used to be. I was very wrong. Maintenance is keeping the status quo without so many trips to the doctor. It is just as much chemo or more, it is having to be diligent about food and germs and watching for bad things like fevers. We are now able to go on field trips. I guess we are sort of out of prison and in home detention like Martha.

P.S. Margie tell you mom we had a great time. I only missed a few minutes of Tommy Lee goes to college. Also, just drop by sometime when you are in Seattle. I won't tell.

P.S.2 Margie is my niece that read the blog all the time. She is about to be a senior. She is a great kid and an even better cousin.

Sunday, August 21, 2005

She will never be the same.

It is 11:30, M-E has been asleep for more than 12 hours. The post camp crash. I have been hanging close. I have been trying to get a few things done but seem very distracted today.

As I was mindlessly playing solitaire on the computer, I realized that my baby has been gone for more than a year. The sweet, lovely, happy, growing healthy, curious, wise, kind, generous, child is no longer in this house. Her body has been over taken by Likemia and will never come back.

We can do lots of things. We can try to exorcise Lakemia, we can try and beat it with a stick. We can go on pretending things will be okay but when it is all said and done, we will have a different child in this house. Mary-Elizabeth Sierra Lanham has been forever tranformed. She is never coming back no matter how hard we try to re-capture her spirit, it will be forever transformed. There is no going back. No return to innocence, no escape from our new reality. I have been mentioning the profound changes but for some reason today I realized it those changes are never going away. Even when we have time away and plans for big trips, and hope for the future, there will always be this experience.

In some ways I feel I have lost a child. I have her body, I have her stubborn spirit but my child is gone. It is not that I don't love this child that is still asleep in my bed, for I do. I would walk through fire for her. I would do battle for her, I would give her body parts without hesitation.

I am just so so sad as I sit here. I had great hopes that camp would have made a huge change. I wanted her to bound off the bus with a smile and new confidence. I wanted to see the child I sent to camp in 2004, tired, smelly and ready for lunch. I wanted the time away to have created new memories and to wipe away this last year. It did not happen. I was expecting too much.

She did bound, she is tired, she is more confident, but she is also still a kid with cancer. She is covered with hives, anxious and has a million doses of chemo to go. She is sure I am going to drag her to the hospital. She was sure I would make her come home if she told me she sprained her ankle and I might have, who knows.

There is no magic, there is no going back, the Mary-Elizabeth before Frederica is gone, forever. She will be missed.

Now I am not saying that we will not survive, I am just saying that we truly live in a different world. We have been to the desert and upon our return we are not the same.

Stuff

This is Judy but not this morning.

The "girls" from Idaho are here to do the Danskin Triatholon this morning. You have not idea how much stuff it takes to accomplish such feats. Schedule this morning:

5:00 a.m: Up
5:07 a.m: Coffee
5:21 a.m: Mad search for keys, contacts, loose coffee
5:22 a.m. Forget contacts, coffee found, extra key \
extracted from suitcase.
7:00 a.m. Jump in Lake Washington while wearing
a wet suit. (These people think the lake is cold)
After that who knows. Swim for .5 miles in the water with 5500
other women that were up, lost their contacts before 12 mile bike ride, then a 3 mile walk/run.
Gather bike, wet suit, and other gear, find car and then find breakfast.

They have so much with them, wet suits, goggles, swim caps, towels for the swim, then they have to find their bikes and their bike gear, then they have to run. So they have that equipment. This is not like the Iron Man where they have staff that manages their stuff. It took three vehicles for them to bring their stuff.

I admire their efforts. I see these women and their enthusiasm. I know what this sort of group thing feels like. I have only done Bloomsday but a huge group event is thrilling.

I am not making fun of the stuff. You should have seen the amount of stuff that flowed off the camp buses yesterday. They opened the side panels and the stuff ejected. M-E had three bags. Backpack, sleeping bag and her suit case.

Everything came home neatly contained and then we started the unpacking project and "stuff" is still everywhere. Dirty cloths, camping stuff, batteries, bug spray, sunscreen, miscellaneous stuff, shoes, wet swim suits and towel, goggles, more stuff. It seems a lot of stuff to take to have a different experience. We need our stuff to travel with us, help maintain our comfort zone.

I guess what amazes me is how much stuff keeps coming out of the bags and once the lid is off, it just explodes.

I think we are starting to see the "stuff" explode from this last year. I know I am feeling it and so is Mary-Elizabeth and all of our friends. We have all had the year from hell. Every person that has followed and joined us in this journey is so aware of cancer and it's affects in all of it's different forms.

We have all learned so much but now we begin the journey of trying to cope while not in true "crisis survival" mode. I think that if we are not careful, as the lid comes off a year's worth of emotions, we could have a true explosion of sorts. I have to do some planning to keep that from happening.

I think M-E is just falling apart emotionally. She has been strong and stoic and hopeful for 12 months. She has marched on this journey with all the strength of a fully mature human three times her age. She has met each and every challenge with courage, conviction and true grit. She is simply worn out.

Since she can not express her fear of relapse, her body is reminding her it is not over. She has faced the treatments, she now has to deal with it's aftermath, while still in treatment. I think that is where the hives come from. They are a manifestation of her fear and anger. Anger and fear have become the dark red blotches that itch.

Like everything else, we will get through this process. We will wade through the stuff.

Saturday, August 20, 2005

She is home, in the fluffy bed and very cranky

She is in a foul foul mood. There is not much more I can say about it. Deep deep breaths. She was fine for a few minutes and then just fell apart. She wanted to clean her room, and re-organize all her drawers and then she wanted to do all the a laundry and was refusing to clean the house. ( Like I was worried about that today.) I finally was able to get her to the shower and then the long bath and now she is settled down.
Deep Breaths, Deep breaths........

She had a great time at camp. There were the three of our girls and five other friends. They all made friends and had a great time. Lots of fun things, good ??? food and nights out under the stars. She wants some horse time so I have to work on that.

She will be fine. She told me that she loved being a camp because she knew no one would take her to the hospital. Now I am not sure if that is true but it was her perception. She is home and safe and tired. Lots of rest next week.

Friday, August 19, 2005

Still no News but then I have no Phones, it is a full Moon.

Someone left a card on my door indicating they had checked out my DSL and they needed to come in side. I went to call and of course they had some how disconnected my voice line. I will be available via internet, because for some reason that works.

Joy, Joy, Joy, companies on the way to striking are so reliable. The repair guy did tell me the DSL guy disconnected my voice line. Now that is a good thing to do. Oh well.

What a day. I worked until my secretary all but turned off my computer. She is great, she realizes how deeply exhausted I have become. It is a bit by bit exhaustion. The big exhaustion is done for the most part but the year of standing on guard and ever alert has done some serious damage to me. I feel such a sense of responsibility for everyone and all my clients and the other attorneys in the office and the staff. I have to keep but I just need to stop and take some deep breaths. I was speaking with John Lenker ( he is from Bliss) (that is in southern Idaho) and he mentioned what a good job I had done over this last year. I told him the story would read something like this:
" All were shocked when Sally Lanham, someone we though was doing so well, took out a small tasteful 22 and shot the paper boy. She explained calmly that he had placed the newspaper on the 3rd step and not the 4th. She further elucidated she could see why everyone was upset."

Grandma is commanding I travel to Eugene and not return until she determines that I am fine. I must listen to my mother. I am going to take a few days off.

Judy is coming from Idaho for the Danskin Triatholon. She was the one that took the "Call" last year. It will be nice to see her again.

PS I did get a note when I arrived home. M-E would like some serious horse time. Alison wondered if I was going to buy a horse. I am tired and cranky, not crazy.

Wednesday, August 17, 2005

New Web Cam

http://www.comune.venezia.it/webcam/sntfosca.asp

I have found that there are web cams from all over the world. This one is fun. Ms. Lisa suggested I put it in my links so people did not have to scroll down and find it. I tried that and since I am not really sure what a link is, I would suggest that you go to the site and then save it as a favorite. Some day I will go to Microsoft U and learn more.

Well, I have to confess. Confession is good for the soul. Here I have this week of non-parental duties. I could be doing things like going to plays with friends, sorting the ever rising stack of medical bills, watering my plants, finishing my newest quilt, marching for world peace. What did I do, the other night from the comfort of my marshmallow/cloud bed? I watched Tommy Lee go to college. Not only did I watch it but I am considering getting TiVo so I don't miss any episodes.

See, I have suspected for a long time that now that the storm is waning, I am not as unscathed as I had hoped. I think serious damage was done to my brain and my body.

For those of you that missed it, Tommy has started college at University of Nebraska, he is having trouble with chemistry and had his room redecorated by his staff. His roommate is a senior. He signs autographs and has lots of tattoos. I will keep you updated.

No news from M-E. I so hope she will remember what an independent child she was and get some of her confidence back.

No News is Good News

Lots to do, work is screaming for some attention so I will attent. I have not heard from M-E she is still at camp. I figure every day she can be there is a very very good thing. I want her to remember this week as a great one. She is with her good buddies and is doing fun things. No phones, no Ipods, no computers. Time with real people.

I keep playing the events of last year in my head. Blood draws every few hours, shots, chemo, bad food, confused friends, and family, lots of unanswered questions and lots and lots of fear. We know the monster now and have faced the demon head on. A year, has passed. I think that is what shocks me the most. It is time to shift focus and look around and see what has been ignored. I guess the first thing on my agenda is getting new blinds. After 10 years, they are done. One just collapsed.

Tuesday, August 16, 2005

Colonoscopy's are better than the Dentist (I have pictures but decided not to put them here)

The whole idea is just gross but it was the most painless visit to the doctor that I have ever had. I had avoided the must dreaded 50 year old test because I did not want to drink a gallon of guck. I have a very low guck tolerance. Guck makes me gag. I knew I had to go and do this, it was stupid not to so.

The whole subject came up when M-E and went in for her first blood draw on June 18, 2004. I did all the blood work the morning she had hers. She has always liked it when we both are stuck at the same time. I mentioned to Scott that I should also set up an appointment for the Colonoscopy. Since he is 6 months older than I, I asked who he saw. He said he had not gone yet. I told him we could go together and make a day of it. I asked M-E if she knew what they were and she said yes. They watched a movie in class. I was not upset because I am a liberal educated parent and this is a natural thing. I remember watching movies about how hamburgers were made in school, not colon movies. Oh well.

So each time I saw Scott or talked with him I would ask. He has issues with the test that we all do. It just seems icky. You have to "cleanse the bowel".
They have a long snake like instrument that is black and ugly with a camera on it they put in your body from down "there". Watching Katie Couric's does not make this do-able and easy and something you would pay for in the first place. ( We know she is getting payed millions of dollars a year and has a very personal stake in the whole thing.) It is easier for women. As women we have lots of invasive procedures, things get probed and squished on a regular basis. And many of us have had children. We have had body parts exposed and hanging out all the time. It is just what we have to do.

So I decided that if M-E could do what she has done with little or no complaint, I would take care of a few things. The cyst on my eye needed to come off, the colonoscopy and I am do for squishing. So I did the eye, and made the appointment for the movie.

I went to see the doctor and he seemed nice. I told him I should not, could not and would not drink a gallon of guck and he agreed. He did give me little guck. 1.5 ounces to mix with pop to drink at two intervals. He suggest I stay very close to the bathroom because,even though it was little, it worked.

So I took my three pages of instructions home, set the alarms, took out my Soprano Netflix and cleaned myself out. It was a very harmless process. I was instructed to eat a low fiber breakfast and lunch. No fiber. That means white bread, canned peaches and cheese. I am from the Wonder Bread generation. It was sort of interesting, I had to feel pretty good about myself because I realized that most of the items I wanted were off limits. Evil things like salad and fresh pineapple. At noon, I had to go on a non-red liquid diet. Evidently things like cherry jello and pop like coke, dye your colon. Now how scary is that.

I went yesterday. I had to have an IV. My daughter gets her needle phobia from me. I hate them but I knew that the longer I was on fluids the better. I was thirsty. I was presented with a cute hospital gown. Guess where the gown opened? They had a nice warm blanket for me. I went into the room, was helped on to the stretcher. I would have made M-E proud because I complained about the pillow. I was listening to Willie Nelson and I was out. I woke up in recovery.

No pain, no cramps, a bit of "flatulence is to be expected". As far as I know, the pictures that I have ( I could put here if enough people ask) were from Katie Couric's exam. Great drugs. I expected to be totally wiped out but was just "Happy". I was able to immediately go for coffee which made me very happy. Alison kept a pretty good watch on me. She did not let me buy the doll house. (It is very cute.)

All of you that are 50, better get your behinds ( not my first choice of words) to the doctor and get this procedure done.I have a client that has had colon cancer and it is not something worth messing with at all.

Oh, I was as clear and clean as a whistle. I have to return in 5 years. I also have to make Scott's appointment for him.

Sunday, August 14, 2005

She is at camp

but not before one well placed and deserved hissy fit by her mother. "Mom where did I put my Aveno?" Where do kids get that? Why do I have the ability to know where they put their things. It seems that the ability to find things is the only think a 13 year old will ask of their mother except for rides and money and sleep overs, and ITune allowance and............

Funniest part of the check in process, Lice Check. They checked her for lice and did not even, for a moment, look twice.

Oh, yes, last night at OutBack we were asked if we wanted to sit in the bar. I suggested that was not the most appropriate place for three 13 year old children.

High obstacles

Well here is quick picture of Sadies newest challenge. She can not get on this bed. She is so mad at me. Now she made the choice to get off but was not able to return to my newest boondogle. I feel like I am in the "Princess and the Pea" bed but I think it will be fine. I will have to upgrade from the rubber maid stool I am using. It is very comfortable except when I am on top peering down and trying to help the dog. If I fell it could cause bodily harm. What was I thinking!

Alexis told me that her parent's bed is higher and they don't us a stool. I have visions of the "flopping and squirming" method of getting on bed. It is not a good vision. Sadie loves Alison more now.

Well here we are. A year down the road. What a long road it has been. I was surprised how much M-E talked about this day with Alexis and Laura. I could hear them in the back last night while they were painting their toes for camp. It was interesting. Mary-Elizabeth was very matter of fact about it. She was having second thoughts about going to camp last night but that is not unusual for her to have problems at night.

Night brings that time when we settle into our quiet place and contemplate the events of the moments, days and other times that have lead to that quiet moment. She will be fine. I am bound and determined to make this August the 14th a place of good memories and not bad.

I woke up this morning and knew where we were on the Likiemia timeline. I just had the thougtht that at this time a year ago, I still did not know. My world was still unshaken by the potential death of my child from such a nasty disease.

We are in a much better place now. We know what she has, she has been through a year of treatment, she is going off to camp with her friends. This day is really the mark of the return to "normal" and not the end of normal.

Unlike Sadie, we have have figured out how to conquer the "obstacle".

Saturday, August 13, 2005

Last Years Post from this day

Friday, August 13, 2004

Well We are on Vacation.
We are surviving a Friday the 13th. Everyone knows I am a bit superstitious. I picked M-E up from the airport and she is taller and as brown as a button. They had a great time. I hussled her home and just wanted to do nothing at home for a bit. We had some appointments a Children's hospital. Another MRI, a meeting to sign surgery consents and then to see the anecthiogilst ( my personal way to spell this word. Of course the first guy I ran into was the hated Daniel. He tried to ignore me. Yeah, that lasted for a minute or two. Everything went like clock work. Yes, hospital food is still bad but they work harder at it. Barley Rissoto......I have to get off this thing. I think it would be more expeditious to write this dribble while not on the internet. I might be using my hostesses long distance. Not a lot of choices over here for connections.
posted by Mary-Elizabeth Sierra Lanham's Mom @ 9:35 PM 0 comments

This Is The Day but we were having a good time.

The view out our window today.

Whitney and M-E and were at the pancake house on the top of Snoqualmie Pass a year ago, right about now. The storm was brewing but we did not know about it. Boy, we were having a good time. (As I have added years to my resume, I have resumed my Grandmother's search for the perfect pancake. They are often found in places far away from non-smoking restaurants and espresso machines.)

The weather was hot but beautiful. We were headed on a great adventure of swimming and reading and quilting.

Little did we know, the alarm had gone out and people were beginning the search for us. Our doctor was called and he told them he would tell us what they had found. I still have his home phone number. They had not called the police yet.

The irony is that I called on Friday afternoon to see if they needed to talk with me. I called the neurology people and they could not see that there was a problem. I liked that answer. Little did I know, I had only 15 more hours of living in a not Lukemia world.

Friday, August 12, 2005

Bad Dreams.

I awoke from a strange dream last night. It took me most of the day to shake it. I was ready to seek professional help, something that many feel I could use.

In my dream we, Mary-E and I were in a place like Dietrich or Spirit Lake. We went to a house and I put M-E to bed. I kissed her goodnight and assured her it would be all right. I then left as an old friend of mine lit a match to start the house on fire. I waited outside and watched for signs of flames and emergency vehicles. My ride came and I did not know who they were but they took me to the airport.

I was not upset or concerned about my previous actions. Somehow I ended up back at the house and my family was there. I seemed shocked that the house was still standing with only signs of smoke. I asked about M-E and Mom said she was fine but that I could not see her for a while.

I woke up with a sick, sick feeling. How could I do something so horrible to her. How could I leave her alone, in the dark and then let someone start a fire. How could I not do everything possible to stop Jim from lighting the match.

I was sure it meant that I did not love my daughter and that I wanted something awful to happen to her. It just made me crazy.

As I thought about it, I have decided that maybe the dream is about this last year where I have let them "put poison" into her ( her words). Maybe I do feel like there is nothing I can do but walk away. Maybe I realize that as a parent there is not a lot I can do to stop the bad things from happening. Or maybe I need to seek professional assistance.

I compensated for my bad dream by buying a new mattress and am looking for a bed. My friend Lori said I should buy one, I am a grown up.

A year ago today we had the fateful tests that started us down the Lukemia Rabbit hole. A year.

Thursday, August 11, 2005

The White Puffy Dress

As parents we sometimes marvel at the various things we see in our children. Sometimes we go so far as to question if we brought the correct child home from the hospital.

It is a possibility that M-E is not my child because I was not the best mother. I did not demand that she be in my presence for the entire time I was in the hospital. I looked at that time as sort of a spa experience and sent her to the nursery to play with the other children while I lunched (spinach salad in the cafeteria) Soaked ( spitz bath) and napped.

Oh, yes back to the point. M-E has beautiful long fingers and toes (from her father) a quick mind and great wit ( from me), stubbornness (from her father) determination (from me). You get the picture.

The one trait that comes from her Mexican Heritage is what the Lanham's affectionately call the "Cha Cha" gene. If you take my daughter to a store and there is a red sequin on a dress she will find it. Well her father does not seem to understand that this is a trait he passed on to her and tries to blame it on me AND then denies her the right to explore that side of her fashion sense. Late nun would be his prefered style for her daughters.

He has on occation tried to focus the behavior in a positive bent. When she was about 3, he brought home some dresses from a friend. There were three or four in the bag. All very fancy, lots of ruffles, velvet and satin. There was one dress we all called the White Fluffy Dress. She loved it the most.

It was covered with lace and ruffles and ruffled lace. It has lace sewn all over it and is shiny white satin. She was thrilled. She wore it all the time. She slept in it, she went to school in it. She cried when she had to wear something else. I was happy to find that it could be washed. It is an alien dress, it is non-destructively. It is an amazing item.

She wore it for years. When Sophie Selleck was 3 or 4 we passed it on to her. The dress has gone through the rigors of more wear and tear. She lived in for a number of years and only reluctantly at age 9, decided to let Isabel "borrow" the dress.

Today it becomes the property of Isabel. It will be the first true paternity test we have. We all suspect that Isabel and M-E are the progeny of Johnny but the reaction to the presentation of the dress will be the final arbiter of that fact. I am going to dig a bit and see if I can find a picture of M-E in her dress and Sophie in the dress. We will let you decide.

Wednesday, August 10, 2005

Better than Yesterday

I called my sister and asked her about the Hives. I am wondering if I there was a simple solution. She pointed out that I had left her and what did I expect. Oh, well. I told her that MEB is leaving for camp on Sunday and Belle said that if I broke out in hives we had a serious problem.

So much for modern medicine and sage advice.

I was able to accomplish a fair amount today. I am checking the phase of the moon because the calls were weird. People never cease to amaze me with their new variations on a theme.

The guy that wants to keep his ex-wife from moving to Canada but is being deployed by the Airforce. I pointed out to him that there might be a problem with the issue of where the kids would live while he was gone. I suggested we work on getting him a new parenting plan that would give him more time with the kids when he came back . Then there was the father that wanted to establish paternity but the State did not want to help him with that right now because she was told them that she did not know who the father was. He has come forward but they don't want to deal with him. Now I know from experience that the state will come to him at some point and then bemoan the fact he has not paid. Oh well.

It is beginning to feel more normal. I have to remember that I can not rush back to that place we inhabited a year ago. It will take a while for that place to be found and rediscovered. I just want to return to our old patterns. I look at the calendar and see only oral chemo. I look at her numbers and read the books. She looks great, the hair is coming back in and she has color. What is wrong about feeling like we are back.

We should be very normal but then something happens. We have spent 8 hours at the hospital this week and expected to be there only 3o minutes. It is a small reminder that we are not done. We are part way. I have to concentrate on the next few steps of this phase and not jump ahead to the end. I can see where we are going and it is so hard to remain diligent.

Belle reminded me that it is going to take awhile before we are really done. I am just ready for it to be over. I know Mary-Elizabeth is also ready but she is still having to live with it everyday.. I guess I have to slow down and take the journey back to our lives one step at a time.

I will use work as a bit of a distraction and amusement. Someone reminded me today that part of my job is to not do everything my clients was me to do but rather to guide them to go decisions.

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