Tuesday, August 29, 2006

Trips to the Eye Doctor

We are going today. Back to Dr. Balter. He was the doctor that found the swollen optic nerves two years ago. He will be surprised to see us but will also be glad to see how M-E is doing. Because I am anticipating some stress related to the visit. I am going to reward myself with some new windows. It seems to make sense to me.......

Monday, August 28, 2006

Monthly Trip to Children's

Remember when it was daily. We are so spoiled. The universe does keep you on your toes. Simple blood draw 12 minutes with the Doctor and then a bit of chemo and home. Seems like a plan. 3.5 hours later....... oh well. I am on page 30 of Bleak House, only 860 to go. The print of this entry is 10 times the size of the book.

Counts, bit high...... ANC 3330. I know there are people out there that would kill for 200. We are willing to share. She is supposed to be at 1500 to 2500 and she just will not move to center of road. She has to take more of the dreaded Methotrexate. Up two pills. She just hates that. Early to bed.

Off to school by 7:20. I may head to bed soon.

Dumping

Mary-Elizabeth is scheduled for her first wake-up call in 12 minutes. Then I go take a shower and really get her out of bed. She has about 50 minutes before we leave for school. This morning is the first car pool. I better look at a map.

We then weave through Seattle, make some conversation and hopefully arrive at school in a timely manner. The girls have to go to their lockers and then start their first day.

Some naive parent asked if I was excited to meet her teachers. I said yes, but then realized there was an expectation I would go inside with her.

Hello....... I am a Dumper. I come from a long line of dumpers and have been dumped on many occasions. I have been dumping M-E since Kindergarten. I dump at school, the hospital and the airport. The train, crew, and the movie theater. It is character building to have to find your kindergarten class on the second day by yourself. You learn to identify better land marks. How was I to know there were big white globe lights in every hall way?

It was not until much much later I realized that Mom does not parallel park. In any event, I can parallel park and I am still dumping.

4 more minutes until the wake-up call.

Sunday, August 27, 2006

Meet Juan Pablo with His adoring Sister

Big Sister M-E was a bit hesitant but seemed to know what to do. she did point out that the Sierra Cowlick has been gifted to all of the siblings. My father is proud the this new one was named after him. John Lanham would prefer to be called John Paul from here on in.

Wednesday, August 23, 2006

Flash Backs

Shall we search this blog and count how many times I have bemoaned the fact that things take me by surprise? Times I have been shocked by events, things I have not expected. Well let's talk fillings!

Simple, right, seems to be straight forward. Well she has never had to have any because her parents made sure she was seen every 6 months and sealants were put on and regular brushing was adhered to. Then leukemia came along and the dentist was not the top priority. If you are going to have 27 appointments a day, they are far down the list.

During the process, three of her molars came in and her mother passed on the Grand Canyon of crevices to her daughter, So the formula goes like this

No visits to Dentist=
No sealants=
Cavities=
Fillings.

Simple enough. Well, lets take a needle phobic child with lots of Chemo and add a dentist that really does not want to work on anyone in pain, and a weird reaction to the novicaine where part of the nerves don't numb for heaven knows why and you get a disaster.

She just went to bed and cried and cried and cried. She finally told me that the whole experience brought back everything from the past two years. A PTST episode.

Great, I was just taking my child to the dentist...........

I will have to access the outcome this morning and see where we go from here.

I guess I should learn not be surprised.

Monday, August 21, 2006

When we least understand, someone sends us some understanding.

Those of you who know a fact or two about Zen Buddhist practicemay know what a koan is. A koan is simply a short phrase, or a question,designed to bring us to a point of enlightenment, but which also tends to confound any rational attempt to understand it.The most well-known example may be,“What is the sound of one hand clapping?”

Proverbs and St. Paul suggest that we have a choice to make as people of faith,a choice as to which “spirit” we will let influence us:We can follow the quick, easy seductions of the foolish spirit,a spirit that works (as Proverbs will go on to say) – like a prostitute – a prostitute who flatters us into thinking that things like our college degrees . . . our careers . . . or our good looks have set us up for a sweet life, a reasonable life, a comprehensible life.Or – and this is the plea of Proverbs, of St. Paul, and of Christ himself – we can admit that there are limits to our understanding, things, no amount of professional training or native intelligence have helped us to comprehend. Loved ones die too soon . . . chronic illness or addiction interrupt a life . . . Metaphorically and (too often literally) our bodies are broken and the blood of those we love is shed. There are times when life itself throws a koan our direction and leaves us asking “how can a good God let such things happen?”But friends, it is precisely when our own comprehension breaks down, when we cannot figure out what God is up to, when we have been “simplified” by the complexity of our family circumstances, this is the moment the voice of God, like a wise woman, calls us back to her table, not for cheap fare . . not for sugar water. (Here is where the metaphors mix and we enter this mystery with image, poetry). God sets this table with her meat . . . the bread that came down from heaven, the flesh of God’s Son broken for the life of the world. Unlike our ancestors who quarreled about how any of this could make any reasonable sense . . . and then died, we can live forever . . . .if we have the humility to live openly before so great a koan. For when we lack understanding of why we suffer, then this bread we break, and this cup we share, becomes our communion with Christ’s own suffering. And though this is incomprehensible, it is this mystic, sweet communion with Christ that is our food.“Let those who are simple turn in here,” God says.“Let those who lack understanding come, eat of my food.”
This food is for the life of the world!__________________________ Proverbs 9:1-6Ephesians 5:15-20

Sunday, August 20, 2006

WEEK from TOMORROW

Hope is the thing with feathers
That perches in the soul-
And sings the tune without the words -
And never stops
-at all.
-Emily Dickinson

I am so tuned into the date and time we are traversing. I so remember two years ago looking out the window at St. Joe's Spire and Holy Names Dome. I was so unsure of how this leukemia thing was going to work out. We always had hope.

It has taken us a very long way but will need to stay for a while longer.

The 28th, she moves from St. Joes, a place that has been so wonderul to us in endless ways, to Holy Names (HNA to those in the know).

Monday, August 14, 2006

A good Navaho Primer and a Need for Lots of Dawn Prayers

It is all about the journey, not the destination. The Navajo believe that with each morning, you are given a new chance. Prayers are granted with the prayer to the Dawn.

We remain lucky and blessed and only a bit crazy. We have been talking with another family that has been struck with ALL. The little girl, 11, is not responding to normal therapy. She is skipping all of the "normal" treatment and going directly to transplant. I had never heard anyone doing that but I can not imagine that it is a good thing. Nice parents, nice brother, nice girl, bad bad disease. I am beginning to realize how frustrating it is to see someone in so much pain and not know what to do to fix it. I had lots of people show me how to help.

They need lots of Dawn Prayers and candles.

Its a Baby Brother

No pictures yet, born on August 7th via C-Section, Name Juan Pablo. ( My father John is pleased. More info coming, Pictures Soon. Sister M-E doing fine. Now Ana does not have to have her head cut-off now that the "heir" has been produced.

The Call

Two years ago today, I was sitting on the deck of Clair's Chelan home looking a the calm lake, drinking coffee. Little did I know my world would change with an angry child walking out of the bedroom with a phone in her hand. She would say to me.

Mom, your phone woke me up.

She would walk back into the bedroom and my world, her world, and the world of many many others would be changed for ever.

Two years ago. What can I say, two years of doctors and poison and scary moments. Two years of having the only certainty in your life be uncertainty. Two years of prayer given and prayer received. Two years...........

Time to focus on the next two year anniversary, that of the Remission.

Sunday, August 13, 2006

We are Fighting about Hair











I guess I should learn to keep my mouth shut. I think it needs to be trimmed. She does not.

Maybe normal does return, two years ago she was diagnosed. 24 months ago, 730s of Leukemia. Still going, still fighting, still worried but still here with hair issues.

Saturday, August 12, 2006

Ms. Vickie's Response

Why I Won't Go Teen Clothes Shopping:

1) I am not stupid. Why would I set myself up to be blamed by a parent for a teen's willful clothing choices?

2) I am not Catholic. I have no idea what the rules are at a Catholic school.

3) You spelled "clothes" wrong. "Cloths" are used to wipe the floor.

(I'll go feed the pigeons with MEB in Venice, but I draw the line at clothes shopping!)

Last, have you not read the NY Times article (see below)?? Apparently, teens are dressing "competitively" now- I wouldn't know how to help her be competitive!

-------------------------------------------------------------------------
August 10, 2006
An Impressionable Age
By RUTH LA FERLA
YOU would not accuse Tessa Sprauer of false modesty, or missing out on an opportunity to shine. “My mom,’’ she confided with a canny grin, “says I’m always reaching for a photo op.’’
Ms. Sprauer, 13, who will enter the ninth grade this fall, is highly particular about the looks that suit her, and those she deems spotlight worthy. “I’m thinking about something maybe not like so casual,’’ she said as she eyed a selection of dresses last week at Forever 21 in the Palisades Center mall in West Nyack, N.Y. “I never wear anything literally like basic,’’ she said. “Even your jeans have to be great-fitting and stylish, not just the average jeans.’’
Ms. Sprauer represents a growing number of teenagers who plan to ditch their rumpled, randomly mingled T-shirts, cargo pants and jeans this fall for a more thoughtfully orchestrated, if seemingly unstudied, back-to-school wardrobe. Many will be zeroing in on fashions with a frankly mature edge. Tunic tops, Empire dresses, argyle sweaters, mixed prints and skinny jeans — chances are that if they spied those looks on the runways or in the pages of Us Weekly or InStyle, they will be wearing look-alike versions this fall.
Savvier than their predecessors about trends, brand names and quality — and hipper about the image they hope to project — many teenagers are unabashedly style-struck. Accordingly, merchants and trend watchers predict that many teenagers will be investing sums, which previously have gone to electronic gadgets, on wardrobes that are meant to be the envy of their peers.
An intensifying infatuation with Hollywood and runway-inspired designs is pointing them to sophisticated youth-oriented brands like Marc by Marc Jacobs, Paul & Joe for Target, See by ChloƩ and J. Crew. According to retail analysts, that romance is expected to result in an increase of 5 to 15 percent in sales of back-to-school apparel. Indeed, clothing sales, which have been flat in recent years, are ahead perceptibly. Neither the rising price of gasoline nor an extended heat wave seem to have kept teenagers and their parents from the malls.
“I like getting more dressed up this year,’’ said Ally Zingarelli, 13. She is an eighth grader in Old Tappan, N.J., who also likes to dress competitively. “Everyone has to have accessories,’’ she said. “Big necklaces, clunky jewelry and longer shirts with leggings.
“Before, you’d wear a polo shirts and jeans,’’ she added. “Now it’s a polo shirt and jeans — and the right shoes.’’
Aileen McCluskey, 16, a junior at Culver Academy in Culver, Ind., wears a prep school uniform, but she tweaks it with headbands, big earrings and bangles, long necklaces and a profusion of clips and bows. “In junior high it was a lot of pajama pants and sweatshirts,’’ Ms. McCluskey said. “Lately we’re going upscale a bit more.’’
Marshal Cohen, the chief analyst at NPD Group, the market research firm, has taken note of the trend.
Today boys and girls “have got style in their minds,” Mr. Cohen said. “All of a sudden, dressing up is an important component of their lives.’’ Large numbers, he added, are forsaking “raggy, utilitarian clothing for statement pieces.
“This year, they are using clothing rather than gadgets to say, ‘We have style.’ ’’
Researchers say many teenagers are emulating celebrity idols like Mischa Barton, Lindsay Lohan, Hilary Duff and Chris Martin (the lead singer of Coldplay), some scarcely out of their teens themselves, to cultivate an impression of maturity. “Kids are going more covered up and more sophisticated, and the girls are more traditionally feminine,’’ said Rob Callender, the trends director at Teen Research Unlimited. “It’s a question of trying to look more adult. Teenagers today are 12 going on 25.’’
Paradoxically, their desire to look older is stoked in part by designer fashions — baby-doll dresses, shrunken blazers, schoolgirl jumpers and the like — that have an emphatically youthful demeanor. Often on the runways, “there is no real delineation of what is ‘child’ and what is ‘adult’ anymore,’’ said Gloria Baume, the fashion market director of Teen Vogue.
There are practical reasons, too, why fashion has become seductive to both teenagers and their parents. “Many of them rationalize that it’s less expensive to buy clothes than it is to buy a new computer, calculator or phone,’’ said Robert Passikoff the president of Brand Keys, a market research company. “And they haven’t bought clothes for a while, so there is a real market need.’’ Brand Keys is forecasting a 15 percent increase in back-to-school apparel sales this year.
Among the beneficiaries of a heightened interest in style are stores like Dillard’s, Target, J. C. Penney, Bebe and American Eagle Outfitters, which cater to teenagers. Some posted July gains in a range of 2 percent to 10 percent over the same period last year.
American Eagle Outfitters’ back-to-school fashion mix, in particular its successful interpretation of longer, more fitted shapes for boys and girls, helped boost sales by 7 percent last month, said Susan McGalla, the company’s president. At Abercrombie & Fitch a new emphasis on quality — higher thread counts, softer fabrics, more subtle washes — has resulted in a price increase of 25 percent in the last two years. “But the customer gets it and is willing to pay up for it,’’ said Tom Lennox, a company spokesman.
At stores like Abercrombie as well as Forever 21, Bebe and Intermix, young women are investing in an archetypically girl-y look, buying lavishly detailed tank tops, dresses and skirts with a grown-up flair, playing down their formality with ballet flats or heavy engineer boots and leggings. Boys are gravitating toward dress shirts and slimmer pants and the occasional blazer for nights out.
Their younger siblings prefer the slimmed-down, hip-slung premium jeans they see on their favorite rock stars. “We’re seeing a high-school-age person looking for very specific fashion items, interested to replicate the looks they see on some celebrities,’’ said Gregg Andrews, the fashion director at Nordstrom.
Boys, Mr. Andrews added pointedly, are: “more concerned about their appearance than ever before. They want to look nonchalant but in fact are quite studied. It might look like ‘Oh, I just picked this up off my bedroom floor,’ but the look is actually very calculated.’’
At Urban Kidz in Scottsdale, Ariz., designer jeans, fitted shirts, puka necklaces and coin chokers are among the most sought-after items for boys as young as 12 or 13. Lila Metcalf, the owner, says the average family is spending about $500 at the store on back-to-school items for each child this year. “And an increasing number of young men are putting that money toward clothing,’’ she said.
Teenagers at every economic level are displaying a new fastidiousness. Erika Sprauer, the mother of Tessa, teaches at a middle school in the East Ramapo, N.Y., and has seen a preoccupation with dress heat up among her charges. Few of her students are well-off, “but they spend a lot of money on their clothes,” Erika Sprauer said. “They match the colors of their shoes to their outfits, and they walk so they don’t crease their sneakers. Their clothes always look brand-new.’’
Well-off or not, teenagers know precisely what looks and effects they are after, having gleaned their fashion intelligence from an ever widening variety of sources. “We used to go to a newsstand and buy a stack of magazines,’’ Mr. Andrews of Nordstrom said. “Now the Internet allows kids to focus on fashion. They can spend a half hour at a time studying the way Pink dresses.’’
Stefani Greenfield, an owner of the Scoop chain, which caters to affluent communities in Chicago, Manhattan, Miami and Greenwich, Conn., said: “They go on Style.com. They know what’s hot, what’s in, what’s out. They know what Prada is.
“Juicy Couture to them is not high-end. And what they are going to wear back to school is a very big deal.’’
That news leaves some parents less than thrilled. “It’s not O.K. if kids see something in a magazine and emulate it outright,’’ said Karen DiDonato, Ms. Zingarelli’s mother. Still, she conceded, a teenager fussing over what to wear is “better than if your child simply rolls out of bed and pulls on her sweatshirt and jeans.’’

Thursday, August 10, 2006

Oh, Dear



Well, I took Tucker and Sadie to the Groomer. I guess that Katie was just a bit excited and did not stop at the requested "bath and toe nails". Okay, Now I am looking for ideas on how to break the new cut, shave, to M-E. I also am looking for a dog therapist and hoping the SPS Scottie Protective Services are not called.

The Picture says it all.

Wednesday, August 09, 2006

School Cloths Shopping makes me need Drugs


HELP.........

I called my mom and she failed me. I asked her to come to Seattle to come and take M-E school shopping. She had money she needs someone that can stand to do the job.

My now former friend Vickie refused right after mom said "NO" . She had not one bit of sympathy. Dr. Tracy has offered to step in but I don't know if that is enough shoppers. I have asked my real friend Maggie. She has not said yes yet but I just sent the e-mail. I am just in a panic.

I think"School Cloth Shopping" might be akin to Halloween Costume creation. For the last 9 years the process was a matter of aquiring 8 items of clothing. Now I think we have to have things that match and fit and have more variety.

I have to simply realize that Holy Names has let me down. They don't have uniforms anymore. I can not imagine that they are more interested in teaching and imparting good values than checking on uniform compliance. Go figure.

Oh, well, I am going to see what I can do. I will even take her on Sunday to see if I can make a stab at the process. If you hear things like "oh Mom, what are you thinking!!!!! "and "Just make a decision" you will know it is not going well.

Tuesday, August 08, 2006

All Quiet on the Home Front


This is the Blanket that M-E choose for herself. She received it last Christmas. She has it on her bed, even now. I had ordered another one I thought " would speak to her" but I was wrong.

One of these was sent to us by Pendleton for the main "helper" Woodie. He is a tall unassuming gentleman that was so kind and so pleased when he was presented with this "offering". I have written Pendleton a note thanking them but I guess I will never really be able to let them know how kind they were to give us the blankets. I asked for 12 and they simply asked where to send them. We did not end up needing that many.

If you are ever anywhere they do business do thank them again for me.

Maybe the link will work

If you click on the link, you will end up at the Evening Magazine web site. Click on Kids Helping Kids through Cancer and it will play the piece.

Maybe

Sunday, August 06, 2006

Off To Camp



The girls left this morning for Camp Good Times. It is put on by the American Cancer Society. The girls flew to Spokane and were to be met by the counselors. M-E was concerned about not having a shirt from last year. She decided to wear the Ms. Marion Tri-Atholon shirt. M-E said, Mom they will know that I have something to do with cancer when they see this.

I wish I had never heard those words out of her mouth but know that she is right. I was so excited to see her be able to go this year. We had to cancer last year because her numbers and complications got in the way.

Not this year.

Saturday, August 05, 2006

A Rare Moment of Quiet

What a difference a year makes.

Tucker has a fair amount of puppy energy and we have been having a great summer. I have been spending lots of time in the back in the "covered" area reading. I have several books going and in the back yard I have been reading Darwin, his Daughter and Evolution. It was written by one of his great grandchildren from letters and lots of other things like family mementos and the stories of his relatives. It is not the easiest book to read because it if full of English Victorian references that probably mean something to someone English. It is sort of 19th century name dropping. Besides that, it is very very interesting. Darwin was in his 20's when he sailed on the Beagle and did not publish his theory until much later. He was independent wealthy had 7 or 8 kids and was not sure if God existed. Lots of people were questioning many things about their world.

Reading this makes me shudder. Annie, Darwin's daughter dies at age 10 from a 9 month illness. It was never determined during their time what it was but the opinion is TB. The treatments, the medications, the fact anyone ever lived after seeing the doctor is mindboggling. Anyone for some mercury and ammonia, is guess it perks one right up......... Not to mention a bit of brandy with gruel. They were very pleased with water therapy. It did no harm which was improvement over "treatment."

I wonder if someone is going to read this blog, 150 years from now and have the same thoughts, Cytoxon, Methotrexate, Prednison, what were those people thinking?

We all think we live in the most advanced times. My Grandmother used to state with wonder the things she had seen in her lifetime. From the horse and buggy to Man on the Moon. She was born pre-antibiotics.

We have been born in Pre-???? I guess only time will tell. I only wish we spent more money on research and less on testing the urine of athletes.

Friday, August 04, 2006

A Star is Born

Monday night, 7:00 p.m. Mary-Elizabeth and Whitney will be on Evening Magazine.

Channel 5. I hope I combed my hair.

This should be an easy time.......

Yesterday was one of those days. One of those days that should be normal and things should be going great, but they just are not. M-E is a bundle of anxiety that is being fed by Prednisone and the need to have life be "normal". But as I have mentioned before, we will never get back to the place of our Pre-Frederica life. It is just not going to happen.

Sometimes I just have to be here to try and keep things on an even keel. Prednisone makes more than cheeks bigger. Each decision is bigger, each thought and problem is more out of control, each moment of disaster is more of a crisis. Each bark becomes a cacophony.

Maybe I am the one with the issues. We have been doing this for 2 plus years, it just seems like a life time. I just would like a chance to take a breath and not have to think about all of it for a while. I wish the only problem we were facing was the buying of "School Cloths"

We have not even started and I don't know how to do it and ...... can you sense my panic? Maybe I need the drugs..

Thursday, August 03, 2006

Some Thoughts from a Teenager

I found this on a site called Never Ending Squirrel Tales. I copied this for the blog because I thought it was so telling.

We are having a good summer but the level of anxiety is increasing a bit of cancer, prednisone and pre-high school jitters.

You Know You're a Teenager with Cancer When ...
You have syringes in your school locker
Your 6-year old brother does a show-and-tell about ‘how my sister got her nasogastric tube out!’ and gave the class a detailed description of how they insert it
You love school
You’re on the way home from school on the train and you see a girl sitting across from you with a large mole on her face. You say to her, “You better get that checked out that looks malignant”
Most of your wardrobe consists of pajamas
You know more about the human body than your biology teacher
Your little brother wants to be an oncologist or a neurosurgeon when he grows up, not just ‘a doctor’
You reset and flush your own drip
You feel at home when you walk into the hospital
You accidentally call one of the teachers, ‘doctor’
You have a very big collection of hats and bandanas
You start to correct Grey’s Anatomy, House, Scrubs and ER when they mispronounce a disease or procedure
You start to say ‘I was only in hospital for a month’
You forget it’s Christmas day
Last week's spelling test was written on the back of pathology results
You can swallow six pills at once without water
You have explained so many times about your illness and what’s been happening that you just write it all down to give to people who ask
Your friends get sympathy nerve pain
Your mom reads “You Know You’re the Parent of a Kid with Cancer When...” and she is in tears with laughter (it’s the loudest I’ve ever heard her laugh!)
You puke on your bedroom floor and clean it up yourself
Vomit does not freak you out anymore
There is Tegaderm® wrappers all over your floor
You’ve watched so much television that you never want to watch it again
You carry around Microshield® everywhere you go
Your English teacher does a spelling test theme on medicine and you get them all correct
Your health teacher asks, “Can anyone give me some names of drugs that are legal or used for medical purposes?” and you can list off a few hundred.
You go out to lunch with your friends and you eat two sandwiches, a large milkshake, a cookie, a packet of chips and some jellys and are still hungry. Your friend hasn’t even got through two bites of her sandwich yet. (Prednisolone!)
Your parents have bought you electronics that you hardly even use. (eg. Playstation 2, laptop, ipod, newer ipod and a Nintendo DS.) and they don’t care
You walk around the hospital and know all the nurses
You bought a medical dictionary
After you use Emla® you have a numb limb
You start to realize who your real friends are
You touch a staircase at the mall and your mom urges you to wash your hands
People at your school assume you’ve left or you're pregnant
The hospital is so familiar to you, you could walk around with your eyes closed
All the flowers, cards and presents you get from people won’t fit in your bag when you leave the hospital
The background picture on your phone is five bald people
You don’t need to worry about shaving your legs any longer
You don’t worry about using mascara any more!
You decorate your band-aids
When you start to grow a little bit of hair, your mom goes and gets the camera and takes pictures of you and sends it to all your family members
You have always wanted your hair to be curly and now, thanks to the chemo, it is!
All the bookmarked pages on your internet are cancer websites
You are so excited when you go out and buy your first bottle of hair conditioner and shampoo and your mom is crying!
You can’t —it’s your first appointment in 12 months with the hairdresser
You know everyone at the hospital so well that they are almost like family members
You forget to put sun block on when walking outside the hospital on a cold winter’s day and you end up being very burnt
You’re in the emergency department at 3:00am and you start explaining what’s been happening to a resident and she says she doesn’t understand what you’re saying because you’re using too many medical terms and that I should speak like a 15 year old.
You love to flick through hairdressing magazines and look at the different hairstyles and you can’t wait until you can style your hair
When you walk out of the hospital for the first time after a long admission you think “Oh, is that what the outside world looks like?”
On school vaccination day, people are crying their eyes out with fear and you're sitting there smiling.
You don't know your way around school, but you know the hospital back to front
You have developed so many allergies since chemo that you ask for “a hypoallergenic sandwich" at the local cafe
The teachers at school do a 'drug search' through everyone’s locker and bag and even though you have syringes, durogesic patches and other drugs, the teacher just laughs.
You get so angry when you see someone smoking
You celebrated your birthday in the hospital and they decorated the whole ward for you
After discharge, you get up in the middle of the night at home and try to find your drip pole and unplug it so you can go to the bathroom
Your main source of nutrition comes from iceypoles and mint chewing gum
Your parents get mistaken for staff members
You get sick of the plain flavor down your nasogastric tube, so you request chocolate or strawberry
You are asked in school what the best invention made is; most people respond with 'computer' and 'mobile phone,' but you say 'Ondansteron®'
At school you are referred to as 'the sick girl'
You have been asked a billion times about whether or not drips hurt and what the hospital food is like
Your little brother stands in front of the microwave while it's on and says, “Look Mom! I'm getting radiotherapy!”
You get bored on weekends because there's no school
The head of nursing on the oncology ward has a photo of you and her on her desk
You have seen all the movies on the ward so many times you have memorized the scripts
You pig out on food at lunchtime and you realize that a group of girls are looking at you in disgust. You smile at them and say "prednisolone"
You come to school and a boy in your class says, “you smell like hospital”
You can change your hair color, hair style and length everyday by buying different wigs
You have no idea where the plates and bowls are kept in the kitchen at your house, but you know where everything is in the hospital kitchen
You have caused your mom many grey hairs
You search the internet each night to see if there have been any breakthrough treatments for cancer
You are so used to sleeping in the hospital beds that it starts to feel kind of strange when you get back home in your own bed
You love reading these sorts of lists, laughter is the best medicine (unless you have a stomach ache or are extremely queasy from chemo)
You love to decorate the hospital
A regular day for you includes medications, port and IV flushes, pathology results, doctor's calls and appointments and/or hospital admissions
You have read inspirational stories about cancer for hours on end
When people ask you where you went on the holidays you say "Boston Children's"
You can't remember how to do long division but you can calculate, measure and convert mls, mmls and mgs of meds
You have been in remission for a while so you apply for bench sitter for the school football team. The coach asks you "Are you taking any sort of illegal drugs, sleeping tablets, pain killers or steroids?" and you say "Yes, the last three ring a bell."
You make up jokes about cancer
The word "remission" is the sort of word that's said with the Hallelujah Chorus in the background
You have fainted at school (yet again) and your teachers ring an ambulance. The paramedics come in and say 'oh, you again!'
Your mom reads "You Know You're The Babysitter Of a Kid With Cancer When...." and says "We need her to come and baby-sit you!"
Your little sister goes up to a elderly bald man in the shopping mall and says "My brother has cancer too!"
You don't get asked to take off your hat in class anymore
Six of your friends have got their heads shaved for charity
Your little sister plays 'doctor' and she is trying to take her doll's temperture with an ear themoetor from a non existant ear, and she gets angry when it says 'low'
You have watched almost all Disney movies and episodes of Blue's Clues...and you're 14...
The nurses have memorized your patient UR number
You're trying to put on weight rather than lose it
All your friends bought you hats for your birthday
You're pretty sure the people in radiology are sick of seeing you
Your essential beauty item is sunscreen
Your nasogastric tube and port have become a part of the anatomy
You have a very interesting “What I did on the holidays” school report
The last most glamorous thing you wore was sweat pants
You start to think if you didn’t have cancer, you wouldn’t be as strong a person as you are today
A ‘big’ meal for you is classified as a few jellies and an iceypole (unfortunately I haven’t yet been started on prednisolone)

Tuesday, August 01, 2006

The Grill and Fingers up the Nose




Again the link will take you to some more pictures. These are of the only pictures we could take at the Medicine Man's place. Notice the outhouse. It did not have a door. Belle learned she had a much stronger bladder than she knew.

I thought the finger nose placement was interesting. Alex and Holden. Different worlds, yet evidently boys will be boys.

Holden was just grubby and covered with hay pieces. He kept throwing things at the sheep and goats and running away. We had a bit of a chat. "They scare me". How does that make you feel? "Scared". So much for my fine ability to communicate.

I also want you to look at the grill. The Medicine Man "needed" it for the ceremony. It was a nice grill.