Thank God She does not have Avvascular Necrosis

Survivor Issues: Avascular Necrosis (AVN)
Avascular necrosis is a condition characterized by cell death in bones caused by a compromised blood supply to the bone. Advanced cases show bone collapse in the affected joint. AVN can be caused by high-dose steroids and radiation treatment. It is usually seen in the first year off treatment; adolescent girls are most susceptible.
The hip bone is the most common site for AVN, knee, shoulder and other joints can also be affected.
Also known as:
osteonecrosis (ON); ischemic necrosis of bone; aseptic necrosis; osteochondritis dissecans
Description of AVN
Merck manual
Signs and Symptoms
The symptoms of AVN vary; in general, the symptoms include pain and loss of movement in the affected joint. Some patients have intense, incapacitating pain, others experience tolerable pain and little loss of movement.
Diagnosis
According to the Merck Manual, "Early diagnosis requires a high index of suspicion in patients presenting with pain, particularly of the hips, knees, or shoulders." In other words, unless the physicians suspect AVN, they will not find it. An MRI is the most sensitive test for AVN; x-rays might not show AVN until it has progressed to the point of bone collapse.
Treatment
Cortical bone grafts, core decompression (the central portion of the bone is removed to reduce pressure), osteotomy (a wedge of the bone is removed), and hip (or knee) replacement.

I bet they never told me that was a posibility!!!!!

Tomorrow we have an appointment to see Dr. Mankey and have the stitches taken out. I offered to take them out for her and she refused.

One thing about spending so much time at Children's is it takes 2 nano seconds to return to a place of gratefulness......

The Real Story of Gastrocnemius Recession Recovery

Walking, we are walking, the get up and come to Mama moment happened on Friday. Day 11 we threw the walker away and began to totter around sort of like a penguin. Seemed to be a good thing. A few steps, down stairs easier than upstairs. Bruises created by placement of the incision by the top of the boot. Too much walking or sitting with feet down, bad. Feet up good.

Short distances with slow pacing seems to work okay.

I made her unload the dishwasher. As someone said, Nurse Ratchet needs to stop by every now and then.

The Real Story of Gastrocnemius Recession Recovery

Day 10: Lots of steps, only with a walker. No willingness to leave the house yet. Even for a movie. I may try movie and sushi...... I am a very very bad mother. But then we all knew that.

Senior books purchased. Need to have senior pictures taken. I am thinking that we need to have some sort of mobility and of course Tucker.

The Real Story of Recovery from a Gastrocnemius Recession

Day 9: Walking with the walker and stating
"fine go to bed, I don't need anything from anyone"

She is doing way better. When she gets mad, she is getting better.

The Real Story of Gastrocnemius Recession Recovery

So. We are now a week away from Surgery. 3 steps in the morning and about a dozen after dinner. Like I mentioned, this is not the recovery process we were expecting.

We liked the: Walk out of Surgery. Rest a bit. In tennis shoes in a couple of weeks.

I think the first part is a bit optimistic. I think the real story is:

No significant weight bearing for 5-7 days.
Stay on top of the pain.
Add visterill to the pain management program. (muscle relaxer)
First steps at day 7 or 8
Add as able.

Make sure you have a "mobility devise" at the ready and a dad to carry you into the house.
Showers are best accomplished with a hand wand device.

For the care taker. Don't get freaked about the lack of mobility. It will be okay.

The Real Story of Gastrocnemius Recession Recovery

gastrocnemius recession is commonly performed to correct an equinus contracture of the ankle that may accompany foot and ankle pathology in adults. The equinus deformity leads to excessive pressure and pain that manifests as plantar fasciitis, metatarsalgia, posterior tibial tendon insufficiency, osteoarthritis, and foot ulcers. The procedure is also performed on individuals who have limited ankle dorsiflexion.



So those are the official words. She had the surgery on Monday. This is Saturday and she is still not able to stand. We had been told that she would be able to walk out of the surgery center. That was sort of a fib. She was not even able to stand up let alone walk. The last few days have been about pain management, arm only transfers, trips to the bathroom on a scooter that was not devised for sitting and waiting.



Waiting. I am not sure that I will ever be good at waiting

I had forgotten how hard this all is

Surgery went fine. Recover is not. Oh, well there always needs to be a challenge. Everyone is sleeping. I cannot get her to walk. She transferred from one chair to another and the pain was excruciating. Now I can't get her to walk. We finally have the pain under control but she is afraid of that very bad pain again. So. I don't know the answer. We shall see.

I should never just drop by the office

It is a very bad idea when I am supposed to be on vacation. We went to visit Mom and Dad in Eugene. This A.M. in the office was supposed to be for a couple of brief meetings. I had forgotten how bad it is when I don't relax and just get away. So here I am very uptight and I am having my chain jerked by a certain medical assistant that works with a beloved doctor. Let us say, Sally does not take very well to being told how Mary-Elizabeth's medical procedures are going to be managed. Oh, I will never make the mistake of taking her out of the Seattle Children's system for as long as she can stay there.

Adult medicine is a whole new ball game and I don't play well with others. Suffice it to say, I have not killed anyone yet but will be doing so in the near future. Opps, that makes it sound pre-meditated.

She has gone to her "Dark Place"

She use to go there a lot. She does not stay as long but it is still there. Yesterday A.M. went fairly well. As she began to come out from under the happy pill, the reality of what was ahead began to sink in a bit.



I did some reading about the operation she is going to have on the 10th it is called a double endoscopic gastrocnemius recession. They go in and cut the main calf muscle, throw her in some boots for a couple of weeks and in 12 weeks she is back in the boat rowing.
Boy I hope this works......

New Age Torture

We visited Dr. Eva Young today. She is this very sweet, tiny 8 month pregnant doctor that evaluates muscle and nerve function. She has some fancy title but in essence she sticks really long needles into people and runs electric shocks into people's bodies. To make things even more fun after she puts the long pointy needle into the muscles she moves it up and down until it is just right.

Eva warned M-E that the electric shocks would feel like touching a door nob during the winter. Mary-Elizabeth wondered what kind of door nob the doctor was touching because she certainly did not ever want to be anywhere near it.

So here is what we learned. The left leg has the most nerve damage but has pretty good muscles activity. The right leg has little or no nerve damage but the tightest muscles.

Surgery is scheduled for August 10th to lengthen the calf muscles.

Who can believe we are even talking about this sort of thing. It has been almost 5 years. I am tired of all of it. But then I must remind myself that I have been given 5 more years and quit whining.

She is Off to Camp.... If she only knew

My only claim to fame as a mother of a camper is the care package I send every year. Some mothers lovingly bake cookies, find lovely treats, send notes and cards and send e-mail through the system where you pay to e-mail your child, less they forget you are still hovering over them and interfering with all of their fun. I drop my child, after being made to wait for the bus to leave, and head to China Town. I head into Owajima and spend about an hour finding a nice variety of items. Packages with little dancing fish and bears in brightly colored wrapping dancing on the surface and no food label are my favorite. I fill a box of such treasures and off it goes. I figure most of it is fed to the raccoons.

I don't ever send the really really bad stuff. I should just for fun. the picked fish heads, the toasted tiny fish skeletons and other such mysteries. It could be a fun fun package if I could imagine some sort of consumption and not just screeches from the girls.

I am just so glad she is at camp. This is her favorite thing. She is coming back to unhappy but necessary "procedures". Her summer will end August 10th. Surgery on both legs to lengthen her calf muscles. More later. It is too YUCK to think about today.

Today I am thinking about gummy weird candy that no one can identify.

Birthdays, Non Parties and other Matters

She is now 17 years old. Hard to believe. She spent her birthday with Grampa and other Grampa in Eugene. Her father and clan went for a three day visit. In ways it seemed odd to have them going to visit and not me but then in other ways it was more than fine. I was at home and doing some minor gardening projects and then took off to visit Margaret and Mary-Jane's Whidby Island cabin. (That is certainly something I intend to do more.)

I came home on Saturday to find the porch filled with boxes addressed to the birthday girl and plants that were more than happy that the marine layer was coming for a long visit. (We don't do well in 80 degree weather.)

Mary-Elizabeth came home and promptly attended her first R rated movie without adult supervision. Of course she wanted me to come give her a ride home because the "bus takes too long". Gee.....

So things on my mind. Sarah Palin.... Michael Jackson.... Minidoka Internment Camp.... What to cook for dinner. Gee... that might take too long.

The Wedding in San Diego

Wonderful, wondeful, wonderful......

We had such a great time. We love San Diego...... Time at the Zoo. Time at the University of San Diego. San Diego Mission. What more do I need to say....

The Girls are Seniors!!!!

Sliders, giggling, time with friends and family. A bit of wine (now officially a clear liquid) time to reconnect with important people.

Life is good, the backyard is clean and there is some sunshine and much needed rain coming. what can we complain about.

M-E is going to camp, being a camp counselor at Gilda's Club, "Camp Sparkel" We have a fancy wedding and them on road trip to visit colleges. Gonzaga, Whitman, College of Idaho, and them maybe U of Portland.

I suggest a trip to Shoreline Community College and she declined.

LAST DAY OF SCHOOL......

DO I NEED TO SAY MORE

First Draft the of the College Essay.

It is said that the hardest time in out lives, other then the “mid life crisis”, are the teen years. We hit puberty like a brick wall and we are stuck in the middle of the adorable sweet child, and the self reliant adult. Yes it is hard, it does not sound like fun, and most people do not want to repeat their teen years but its “normal” and part of life.
This all was taken from me when I was twelve. I was looking forward to becoming a teenager and could not grow up fast enough. However, life had a different plan for me; I was diagnosed with Leukemia the summer of ‘04. It was a shock to hear that I had to go though 2 ½ years of treatment. Part of my treatment was radiation. I was told I had to have tattoos so they could line me up precisely as to not harm me. I walked in to the waiting room of UW Medical Center on the day of my appointment, checked in and sat down in the dull waiting room with the matching vinyl chairs. There were not many people waiting, giving me time to think what the person doing the tattoos. I thought of the word “tattoo” and immediately an image of a biker man with a leather vest and tattoos all over into my head.
My name was called interrupting my thoughts. After winding through long hallways like a lab mouse, we finally enter the room. There standing in front of me was not a big burly biker man and lots of tattoos, but a short dorky man with a lab coat on and glasses too big for his face and was not what I expected. He explained to me what to expect and I was told it might “pinch” meaning “it’s going to hurt but my med school training tells me to say it will pinch to make you feel better”. By spending a lot of time at the hospital, I had learned to decode words like this and find their true meaning. They warn me they would start so I prepared for the worst. The first one was painful and I thanked God I had a high threshold for pain, but it got better as they continued. As they worked, they started talking to me. They asked about my life and I told them my story. As I did, I realized I would never have a “normal” life. At 12 I had to learn to take a lot of responsibility and learn to deal with a great burden and had to grow up in a shorter time then most girls. Most teenage girls worry about which boy likes them, who they will eat lunch with, and when they will learn to drive and here I was worrying what procedure is next, hospital times, and what side affect I would get next. I also had to become comfortable with the idea of death. I learned quickly humor was the best antidote to all this and that we can not dwell on death or fear it. I came to realize, even though it sounded crazy, I wanted to be a normal teen that had acne, had to worry about shaving their legs, and had to spend hours on her hair on a bad hair day. These little small stupid things were what I wanted to do and deal with. All this went through my head in seconds.
By that time I had leaned not to dwell on these sorts things and continued the conversation. Before I knew it, the procedure was over, and I had tattoos, which my mother gladly paid for. This is something that happens very rarely in a teenager’s life. To this day and for the rest of my life I will have these tattoos. They are a universally symbol of radiation treatment and remind me of all the things I missed from the ages of 12-14, but they also show me what I have taken from my life. It has been hard, but its one I enjoy everyday without out a doubt. I know what is important now and what to notice in my daily life. I have also accepted that “normal” is not part of who I am and I have learned that I would not be Mary-Elizabeth Sierra Lanham if I was normal.

Take Two Aleave and Call me in a Couple of Weeks.

So we went back to see the doctor. There is a thingy, ME does not want to name it. It looks like a bubble. There are also some small inflamed areas in three of the small foot joints. May be a problem, may be nothing. There is also still talk of heel cord lengthening surgery. It just makes me cringe.

A very tall woman with a thick eastern European accent drew about 6 viles of blood to see if there is anything weird going on. She had purple nail polish. I had warned M-E that there were be blood letting.

So to sum it all up. There is a thing. We are exploring all the Things it is not. M-E is pretty quiet about all of this. I am totally freaked out but then this is the first post-treatment THING we have had to deal with so maybe I am supposed to be freaked out. I am stressing eating fresh halibut and Paseo Cuban sandwiches and badly burning cookies.

So, I have been here and done that......

I hate MRI's

Just once I would like them to be good news. So here is the deal, thought we had a stress fracture. All signe, sore foot, no apparent trauma, just pain. So off to the doctor, nothing on the X-Ray, then off to the MRI. No appointment available until June 2, 2009. Does anyone believe that I am going to wait that long.... NO WAY.



E-mail Karyn at Childrens and she finds the reports. (Children's/UW and The Hutch are all working together for a better tomorrow or some such nonsence. So..... I get the report.



THERE IS A A 5x6x7 MM CYSTIC LESION BETWEEN THE HEADS OF THE THIRD AND FOURTH MEATARSALS.



Oh joy...... So here we are things we don't like in places they don't belong. Could be a normal thing, could be a bad thing, I would prefer, nothing.

Regionals, Visits from Mother, German Sheppard Puppies and Maple Trees

I am exhausted. So here is the story
1. Leave from Seattle to pick up Mom from the Train Station.
2. Take the wrong exit and fail to drive far enough on wrong street. Find Mother EVENTUALLY
3. No room in the good hotel but check into newly remodeled Comfort Suit. Mom then refuses to move the next day. Settle in.
4. Get up early because I just always do and go to breakfast and then to see the Girls row.
5. Watch Mary-E in the 4 and a very very bad race. Wipe tears and spread on more sunscreen
6. Return to the hotel, have dinner with the team, receive reprimand for talking during speeches
7. Take Mom to the train, head to Maple Nursery. Find out that Nursery and Quilt Barn both open at 10:00 a.m.
8. Find a couple of trees that need homes. Maybe 3 trees. Give one to neighbor to plant so I can enjoy it.
9. Travel home to find Tracy Hentz on door step with a 9 month old puppy (size of small horse) and 13 week German Sheppard Puppy.

Puppy anyone?

Mac and Cheese Recipe

Fun shaped Pasta- one box. cooked about half way.
Saute (fancy name for fry) in some a little bit of olive oil, one small finely chopped onion, one green, red or yellow or orange pepper, add two hot Italian sausages,

Mix pasta and other stuff in a backing dish.

take a cube of butter 3 or 4 tablespoons of flour and combine. Add a half a cup of half and half and a 1.5 cups of milk simmer until it thickens a bit. Add at least three types of cheese about a cup of each. I used aged Gouda, medium Cheddar and a Gruyere. Melt all the cheese and pour over the pasta

Top with bread crumbs and shredded Parmesan. Bake for 45 minutes.

Variations, any kind of meat, mushrooms, veggies, artichokes, asparagus, salami, chicken, Any kind of cheese that seems to be around. It is fair game.

confession: Favorite Mac and Cheese. Kraft.

New Variations on Mac and Cheese and Prom Night

So, Mother's Day 2009. Thank God, Mother Earth, the Great Spirit, the Sun, the Moon, every possible superior being in the universe and beyond.... I am still a Mom. Now on to important things.

Prom Night in Ballard:

Last night we met at our house. By we, I mean friends, family and the kids. Flowers were pinned on nervous boys, pictures were taken, snacks were consumed and then the kids were off to dinner. Parents and friends stayed for a couple of hours and did a group therapy session about their own high school highs and lows. It was concluded that there this generation of young women have made a very big leap from "our day".

I cannot talk about the whole gang but at least for Mary-Elizabeth and Madeline the process went like this:

Need a date, but no need to find a date until the perfect dress and shoes are found. Once that happened then the date became paramount. Mary-Elizabeth went with a guy named Corbin. Senior, going to the New School in New York next year. Great sense of humor, writes and performs poetry, has a rap CD. His mom made sure that he had the right colors for his tux, the right flowers and was on time. It all was good.

The prom going group was a bit unsure of what to do a the house. Food is the great equalizer. The girls were afraid to eat anything sloppy but the boys found "snacks' a good thing. Mom told this morning that she was sure they ate a full meal before they got dressed and would eat when they arrived home.

They came in last night, Sadie let me know that they were home. Both were chatting with that great ease of friends that had a good time. Lots of laughing. Finally a very tired and pleased child came in and told me life was good. Prom was fun, and that Corbin made her dance.

She unloaded her stuff on the table. Only my daughter would take tape and bandages to address blister issues.

SAT's Eye brow plucking and other rites of passage

This is the color of the dress with a brown ribbon.

The SAT's are this A.M. Lots of anxiety. She will do fine. I told her this was just the first time she would be taking them and now we don't have to send all to the colleges and who knows, they might be good enough. Bacon and mangos for breakfast seems to help and off she went.

After this event we have bunches of stuff to do before next week. Let's see. Nails, eyebrows, decisions about where to go for dinner. I am having a small "cocktail party" pre prom so that should be fun. Wine cheese, something hot and spicy, a sweet and a chance to wish the children off on their big adventure.

Seems like the thing to do. I don't remember much about pre-dance stuff other than my father cleaning all his rifles while my quiet shy timid boy friend came and picked me up. Ugly........

The Holy Trinity of High School

Perfect Dress
Perfect High heels
Perfect Date for the Junior Prom.

What more needs to be said.

SAT's on May 1
Junior Prom May 9
Crew Regionals May 15th

Seems like we have lots of Trinity Moments happening.

My newest distraction

Type in Falcon Webcam and then just sit back and enjoy. The whole country has these set up and this is active active time. Babies are less than 4 days old in San Francisco, WAMU tower has a very devoted pair about 15 days away from a hatch. It is just too much fun.

Easter is the Ever Evolving Holiday

I love this time of year. I totally understand the original cultures (pagan seems harsh) that joyously embraced this time of year. Small little shoots of new life reappear, the trees send out new leaves for a years of energy capturing and then the breeze brings that new scent of spring. A bit of pollen is not much to complain about.

We both have been sick. M-E started with great collapse of her system last week-end. Trips to the doctor, assurance that it was only a virus, then lots of soup. We are so tired of soup. No energy to cook or even bother to eat. Cereal seems to be the best thing. Maybe toast if a burst of energy hits.

BUT IT IS EASTER!!. Okay, so a few chocolate representation of small juvenile creatures, some springy sorts of plastic glittery grass and an Easter basket. I think I have done a very good job. The bunny is years and years old and so is the basket. The Annies Bunny Pasta was just genius. Mary-Elizabeth has a DVD wish list and I had to choose one. I thought the Secret Life of Bees a story of new life and discovery was the most appropriate followed by Slum Dog Millionaire, another story of struggle and new life. But in all fairness, Twilight was the right choice. This is the holiday about ever lasting life. The renewal of life, the changing from one form to the other. So Twilight ended up in the basket.

Another big change: No Church.... I love this time of year within the Catholic calendar. Maudy Thursday with the foot washing, Good Friday with the bare quiet church and no mass and then the Easter Vigil. The dark night that tells the whole story from Genius to the discovery that Jesus has left the tomb. I love the quiet, the hymns the light that begins to grow stronger and stronger until the whole church is filled during the darkness.

this year.... The Ten Commandments... How long is that movie! it was on from 8:00 to 12:45. They spend years and hours in Egypt. I think Baby Moses was played by one of Heston's kids and I think they were in Egypt because everyone could run around with their shirts off.

Oh, well maybe some Dim Sum today or some more soup.

The Head Line Would Read like this

The family sadly said good bye yesterday to the 1996 Honda Accord Station wagon that met it's untimely end on February 19th 2009.

The family was traveling home after watching Lion King and an evil and fast traveling SUV decided the red light did not mean anything and blew through the intersection.

Even though the air bags did not employ, there was enough front-end damage to realize it was time to send the car to the land of "parts" There she rests among those of own kind. Waiting to be needed in another way. Her head lights and door handles will be used by other with such vehicles, those that value their vintage Honda's and try to keep them on the road longer than those stinky Toyota's and Subaru's...

In her place a new vehicle has arrived. She has been loved beyond words by her prior parents. She has only 101,000 miles and is pristine. I mean, it is possible that no one has ever sat in the back seat. It was reported that no animals and no more than two children have been in the car. No food, no coffee, no muddy boots or even shoes. The second set of mats are in perfect shape.
She came with touch up paint. We are bonding with her perfect, never scratched, never dinged Champagne exterior.

I know brown and beige are brown and beige, no matter what you call them. Someone has already found a bright orange Wag More, Bark Less magnetic medallion and put it on the rear. I just could not help it. (Also there is stuff in the back.) It is down hill from here

Opening and Closing Doors

I guess I am with Mary-Elizabeth, I just want all of this to stop. I have had enough of the Cancer World thing. It just does not give up. Every time you think life is going to "get back to normal" something trips you up. The dogs leave a bone on the floor and trip, or the favorite restaurant is gone, or the weather man forgot to mention the 2 feet of snow that is falling. MAKE IT STOP.

That being said, I had that horrible feeling last night. I was securely nestled on a very high end brocade sofa in the Olympic Hotel in downtown Seattle. A very quiet, smiling woman dressed in black exited the elevator. She had a perfect splash of color from her tasteful and folded scarf. She walked over and introduced herself to Mary-Elizabeth. I asked if I was needed, both said "NO". She and Mary-Elizabeth entered the elevator and the door closed. I had the same feeling and flash back to the days she entered the radiation chamber at the University of Washington. Pressure builds in the chest. I become short of breath, maybe because I had stopped breathing all together and then I waited for her to come out again.

This time the wait was for an hour or more properly a therapist hour, of 50 minutes. She did re-emerge. After her radiation treatments she was usually smiling, complaining about how her mouth tasted funny, and she just wanted to go home to bed. She would have some crazy craving like Costco hot dogs and only Costco hot dogs.

A different person came out of the door. There were signs of tears. When I asked what was wrong, she said she just wanted to go home, now, please, don't ask, don't enquire. She hates to cry. I asked if everything was okay. She gave me the "LOOK"...

I guess we have to enter the hard places and address the hard issues in order to find the good doors to enter. Maybe if she goes up that elevator enough time, she can close the door on Cancer World.

David never changes.

Sally:

Hey, little brother
So you weren’t in Montana

David:

You know me better then that, this time of year I am in Mexico more often then no

Sally:

So what happen in Montana?

David:

No one will know for awhile, but I can tell you, I would never fly a ___________ (I didn’t catch the name)

Sally:

Do you think he ran out of gas?

David:

'I don’t know?

Sally:

Does it make you nervous?

David:

No! whatever it was, I wouldn’t let it happen to me! I am too careful.

You Know, they always keep a few instructions in a secret place

There are just so many things how would you ever learn it all, relay it all, forget it all. We are looking for therapist for Mary-Elizabeth. She is going to need to "PROCESS" all of the last five years. I guess this blog will help educate whomever we choose. So that will be easy. I have called all the resources I know and asked for referrals. A very wise individual left a very short part of a message that really sort of explained it all.

"She must be doing this now because this is the first time she has been able to stand it." Okay, we will deal with it now. Not later, not during but NOW.

So wanted: the best Cognitive Behavioral Adolescent Therapist in the greater Seattle area, should accept Boeing insurance.

I Just Hate Surprises

I guess this is not a surprise. I guess we have been talking about it endlessly on how it would happen. It is sort of like pre-parenthood. You are sure that (no matter the knowing look for other parents ) your life will return to normal. Normal never comes. We have all been waiting for the time that Mary-Elizabeth fell apart and began to really deal with being a cancer patient/survivor. Well

SURPRISE!

On Monday we had a big ACCESS appointment. I have yet to know what the letters mean but it is what happens when you are off treatment for two years. The gist of it was that M-E received a list of all her surgeries, treatment chemo drugs and the amounts. She was given a book of side affects. At 16 she heard a discussion about later cancers, thyroid cancer, breast cancer, bladder cancer and her possible lack of fertility.

Monday we had to have Won Ton in Hot Oil Sauce (Two orders). Tuesday she forgot her English books and needed a note. Wednesday she lost her planner and can't find Frankenstein, cried, needed to be tucked into bed, with Tucker and needed me to sing to her... Thursday she is still asleep and unable to face the world.

Well, I always need a plan. I am thinking sleeping in, breakfast, pedicure, a trip to the hardware store and maybe a movie. If that does not work we will try plan B. I will work on that while my toes are being painted.

Windows and the choices they give us.

Yesterday was cold and clear and beautiful. God was trying to make up for the snow dump on Wednesday. As I left the office I looked south and saw menacing clouds slowing creeping over the horizon. Our systems often sneak up from that direction. As I looked north I could see endless blue sky and a few wisps of clouds that would color nicely at the sun left for the day.

At that moment I decided to take the clear and sunny view as my view of the universe.

Some People Just Don't Get It

Every single day, I am thankful to the bottom of my toes that I am still a mother and that Mary-Elizabeth is still alive and relatively unscathed. She is grumpy and sleeping and leaves my shoes on the steps so I can trip. She expects to be fed and nurtured and demands attention. She was so so mad at me today because I told her she was not taking a car with her to college. She was huffy and left the car after announcing that "She was not going to discuss this with me."

We had never discussed this before. But it must be time.

All in all I would not miss a day of all this time. The moods, the expectations, the disappointments, the laughter, the tears.

Children's asked for a contribution. This is what I wrote last fall.

A Bit Removed from Treatment



Mary-Elizabeth’s story has been said, told and retold. We went to the eye doctor where he found swollen optic nerves. After many other appointments to detect the cause over two months we arrived fully into the "Cancer World" and all of its glory: side-affects, puking, fights with the insurance company and bottles of pills equal to mortgage payments. I want to talk about time away from the "Cancer World". It is a place that many people forget exists. Life after cancer is as jolting as life in cancer treatment. Cancer is like air, it is always there. Every sneeze, bump, bloody nose, strange look, craving, headache, bump, rash or anything else you can think about is the dreaded "RELAPSE". Every news story about a famous person that now is fighting the good fight again is gut wrenching. Time does make it better with each day being a little bit better than the last. Mary-Elizabeth went to bed by 7:30 every night during treatment. It took about six months or more of being off of treatment but she started to stay up later and later. She is now 15 months off treatment and is staying up until 11:00 p.m. doing homework. When she first ended treatment she was barely able to walk the dogs down the block and had to use the elevator at school. Now she takes all the stairs at Holy Names and does crew five nights a week. This fall she will row in three regattas! I realize that we have very gradually arrived back to "normal". It is more of a life similar to pre-cancer where it feels safer and healthier. It is a place where I can now plan to cook Thanksgiving Dinner this holiday and know it will happen. I also realize that I had unrealistic expectations about how long it would be before we arrived in this new place. In our experience for every two months of treatment, it took a month to really recover. She was in treatment for 30 months and we are 15 months away from it. Time in the "Cancer World" makes you appreciate so much about life, health and most of all “normal".
What does Children's mean to you, your child and your family?
Returning a phone call and hearing: “Hem/Onc Garcia here” is never good. It is not what any parent wants to hear, but having returned the phone call to Children’s was the best part of the call. I truly believed my daughter would survive treatment and would go on to live a good life after. I don’t know if I would have survived the process anywhere else but Seattle Children’s. To me Children’s is sort of medical department store with its labs, psychiatry, ophthalmology, dentistry, radiology and physical therapy all on site. There was no need to do more than take an elevator or find a new hall way to get between appointments. We only had to leave the main campus once for an appointment and that was for 12 doses of spinal cranial radiation. The Schedulers took care of making all of scheduling all of Mary-Elizabeth’s appointments and if there was a problem, they would solve it. The staff always took care of transferring records and x-rays between clinics and appointments so I never had to. Children’s is runs so well and they are so careful to make sure the patients come first. We had the luxury of having the same doctors and nurses throughout her entire treatment. They welcomed us with understanding, compassion and hints on where to find good coffee. Each cancer patient has a nurse practitioner and ours was Karyn Brundige. She was never rushed, always listened and worked with us on making cancer treatment palatable. Never can I say enough about the people, the care and the support we felt while there. Mary-Elizabeth is off treatment and she now seeks treatment for ordinary things from her primary care doctor. She loves him but we always look for an excuse to return to Children's instead.

This college thing is not scientific

We were able to find University of Portland and have directions to lots of other schools. If you don't leave the house with maps and directions, it is possible to not make good progress. M-E met one of her classmates at the University of Portland and the place is warm, inviting, people friendly, the guys passed my tests. Next time we will do a real tour and visit. She did score a sweatshirt, hooded of course.

She was sleeping both times we past St. Martins so that will have to wait. She will not even be looking at the University of Oregon. They are just too mean. We went to a couple of hockey games. The final was between Oregon and Washington. The players were a bit aggressive and very mean. The fans left something to be desired. She was not impressed.

So the search continues......;

So this is how it begins.

First you have to find the college and then you have to pay for it. I am going to let Mary-Elizabeth shop and I am going to work on the financing. Right now I am sorting through lots and lots of web sites and foundations for cancer survivors. Most are open to mostly everyone; some are just for certain counties in Maryland.

So the hunt begins for schools and scholarships. It is nice to have a goal that does not require waiting on the result from a blood draw.

A Friday the 13th is Coming

I should ignore it so I am going to take my daughter and head to look at colleges. I will not worry, I will not fret, I will not be concerned in any possible way. On the list this trip, University of Portland and St. Martins. Maybe a quick peak at the U of O.

See I am not worried. I am just g0ing to go and have a good time.

So now we enter "Long Term Follow-up"

I guess it sort of goes like this. A whole round of tests including an new Eco Cardiogram. Lovely type of test, very easy, non-evasive, fast and THE most expensive single test we have done and an fairly regular basis. Blood tests, lots of extras like Thyroid and Lipids and....... Then we sit down with our new Karen (not to be confused with our old Karyn) and are give the book. The book contains the whole story to date, all the treatments, number of doses, the whole nine yards. The best part is the "What to Look For" sections. When we have this I will see what it has to say. This is the FINE PRINT.

We aren't going until March so I should be in quite a stew before then.
I think I need to go to the Library. I need to read the biography of the Georgiana, Duchess of Devonshire. I watched the movie last night and need to know more.

The Inaguration

Loved it. Grandmother would have been appalled by the day dress but would have approved of ball gown. It has been a week. I'm not sure things have changed but there seems to be some movement towards some good things happening, eventually.

It has taken a long long time to get from being 3/5ths of a human to being President. I don't think we can last that long to work on some basic issues but then we shall see.

TREE UPDATE

All the ornaments and lights are off. Trying to make it out the door next.

College

I am not certain why just thinking about sending my child to college makes me giddy. I am surrounded by people full of anxiety and concern.

What school?
What Program?
How will it be paid for?
Will horrible and deadly things happen while she is there?
Will she be sucessful?
Will she have a good time?
Will she find those dear and lasting life long friends like I did?
How do we help her through those first few months?
Will anyone accept her?
Do I have to go on the big "college tour"

I just can not hop on that anxiety wagon. This is what I know.

Finals are next week.
Some great school she want to go to will take her.
The money will come from somewhere.
She will make great friends and have a good time.
She will be homesick but will handle it.\

But what I really know is that she will be going. I am more than content and satisfied with the fact that she will be
GOING

We Survived the snow and bitter cold

Said the very small humming bird

Let It Snow,...... Great in a Song Not so much in Reality

Snow, Ice, no wind, still have power. The Anna's Humming bird is still coming to the feeder. The feeder comes in every night and then is taken back out in the A.M. They feed on insects and nector. I think I m am curently the only port in the storm.

Tucker loves it and so does Sadie. She just gets very very cold and objects to the snow balls that form between her toes. I too object to snow falling in my boots when I forget to wear socks in them.

Will Christmas Come if the Tree is not up and the Stockings Hung?

I hope not! I don't seem to be ready.

We Survived but I realized we never get to go back to Normal World

Once here, we never get to leave. It is okay, it is just what it is. While almost two years have passed since the last dose and the last surgery and the last..... But we are on a very very long tether but a tether just the same. We are sort of like birds at the zoo that are allowed to fly free for awhile. Sometimes they even leave for a couple of days but eventually they have to go back to the zoo.

We shall settle in to bits and pieces of freedom.

An Election to Remember and a dress to Forget

A little more blue on the map. A new president elect. Cute kids, nice suit and a bizarre dress. I should explain that Grandmother Foster was the first Mr. Blackwell. She had a very specific sense of dress and style and propriety. She would shop at the Cresent in Spokane and each suit would have matching accessories and shoes. At some point in time there were even matching hats. I don't remember if Grandmother was political in any specific way but I so recall her on going commentary political dress.

1.Ronald Regan always looked presidential. His suits and ties and shirts passed the test.

2. Nancy Regan was given kudos for buying matching china for the White House. Now the fact it was Lenox was okay but Rosehthal would have been better or Royal Doulton but then buying American is preferred.


3. No president should be called Jimmy and certainly not carry his own suit bag! What was he thinking.

4. No First Lady should recycle an inauguration gown. Did Roslyn Carter not know it would be going to the Smithsonian?

Grandma would not be pleased with the purple dress with plastic flowers, the red and black number or the weird Shrugs she has been wearing.

I think she would have been pleased with the election results.

Different kinds of Family

There are lots of reasons to spend time with all the kinds of family that we seem to gather. There are the kind we are born to, the kind we gather at different stages of our lives and the ones we find while in a crisis, like our Leukemia family. But when it is all said and done, it is the kind of family that love and support us that turns out to be the best.

It is also good to spend time with family so years of from now we can gather and answer the question: What is Grampa John pouring from this container?

It just gets better all the time.

I am always amazed when the alarm goes off at 5:00 a.m. on a Sunday morning. We are out the door at 5:30 after fixing coffee and walking and feeding the dogs. We arrive at the boat house before 6:00 a.m. and I don't fall and kill myself wandering around Gas Works park in total darkness.

She still smiles before racing a 4500 k. They came in 4th but only 7 seconds behind the third boat.

Light the Night

Mary-Elizabeth does not feel like a survivor. Every time she sort of does something happens like a cold or a bruise or a weird head ache. This years goal is to make her feel like a survivor. So on September 20th we are doing the walk. All the way around Green Lake. It is a great event.

Come join us and lets see if we can't help her understand that she had done IT!!!!!!

The link I have put here will take you to the information and donation page. I want the team to raise at least $1313.13. I want that number not be a good number and not a bad.
http://www.active.com/donate/ltnWA-AK/2302_MebsMom

The Healing Power of Crew

Over the years I have walked the path around Green Lake with my daughter. Every now and then there would be a high school regatta. The kids would be rowing and talking and hanging out. The parents would be feeding them, cheering and huddling in small groups. There were would be boats and races starting and lots of noise. It was a great feeling to see all of these dedicated people. As we continued our walk, I asked Mary-Elizabeth if she would be interested in rowing. She thought it looked like fun.
Mary-Elizabeth was just 10 when I made a few calls and discovered Crew is 12 to 18 year old sport. Given the age limitations, she was signed up to begin Crew fall of 2004. Mary-Elizabeth and her best friend Whitney were going to start rowing together.
Sometimes things don’t always work out as planned. Instead of rowing, we entered “Cancer World” upon Mary-Elizabeth’s diagnosis of High Risk Acute Lymphoblastic Leukemia late summer 2004. While she could not row, she was able to watch the regatta’s, wear the sweatshirt Whitney bought her and wait until she could become part of a team.

Mary-Elizabeth tried to take a rowing camp the summer of 2006. She was still taking daily chemo and in treatment. But it was a way to try and row for a bit and see if she could do it at all. She did okay until the second week when somehow she sprained her ankle getting out of the boat. Go figure. She began her long career riding in the launch with the coach. It was the first glimpse into the way Lake Union Crew/Holy Name Crew program was going to handle her illness and eventual recovery. They did not skip a beat. If she could not row, she could ride. If she could not run, she could do a core work out. If she could not do stairs she could lift weights.
Fall of freshman year she was not able to go more than one day a week. In the spring, she went two days a week. She was able to row off and on during the summer of 2007. In the fall of 2007, her participation increased to three days a week and finally four in spring. Her last couple of weeks, she did five days a week and then was able to row for the first time in competition.

It was a long long struggle for her to regain her health. While her treatment officially ended in December of 2006, the side effects of 30 months of treatment, hundreds of doses of chemo, dozens of spinal taps, bone marrow aspirations, port placements and removals and 12 doses of spinal cranial radiation, took its toll. She was exhausted and worn out. She had lost her balance, flexibility in her ankles and calves; she had issues with her strength and coordination. She was a mess. She was cancer free but there were times I wondered: “ At what cost?””

Oh more than one occasion, I had a child in tears. Her sense of accomplishment would evaporate after a simple cold would keep away from crew for 10 days. While she might have been half way up the ladder, she found herself more than half way back down. On so many occasions, her level of loss of wellness was overwhelming. She would climb into the car after practice and be exhausted and upset and simply mad at her body for not being more reliable. There were times she wanted to quit: to give up, to let the cancer take just one more thing away from her.

Sometimes she was able to go out on the water. Sometimes she did not want to go near it, it seemed too daunting. She seemed to know how much strength she had or in most cases did not have. She simply did not want to be seen as a quitter; she is not the type to give up on something once it is started. I could tell the days she rowed. Whether or not it was a good “row” or a bad, it did something for her like nothing else. Maybe it was the endorphins, or the comoratory or the moist air or the sudden waves that splash from Lake Union into the boat. Maybe it was the sense of accomplishment in climbing into a boat, a launching from the dock and those first few strokes. It was s0mething and it kept her going back. But rowing on occasion was not quite enough.
Crew is about racing and competition. Sometimes with yourself, but definitely against Green Lake Crew or Mount Baker or Sammamish. It is the reason for all those cold windy wet work-outs. It is the reason to sit at an Erg and pull endlessly. It is the reason for all the sweats, and sport bras, and special expensive shorts and waterproof jackets. Competition is the main reason there is high school rowing.
At some point in the spring of 2008, I decided it needed to become the reason Mary-Elizabeth rowed. It was time for the maiden race. The chance to find out what it meant to look down that long course and realize the boat had to come together and cross the line before all the others.

“You are going to race this SPRING!!!!!!”
“But I am not READY, I will let everyone down!!!!!!!!!!!!!!!!!!!!”
“I don’t care; you need to get in a boat and ROW”
“I am not ready for Green Lake.”
“Then make sure you are ready for Brentwood.”
“OKAY but I hate you,”
“That’s all right. You are supposed to hate me.”

So down the racing path she went. She worked so hard to be ready for Brentwood. All the anticipation, all the working with her teammates, all the planning and then……. The cold. Mary-Elizabeth does not become sick more often than other children, she just stays sicker longer. In this case, longer was the operative word. A week before the race she started to get sick and despite all my best efforts, she did exactly what she was afraid of doing. She let her boat down, her coaches down, herself down. Despite feeling miserable she traveled to Brentwood, she cheered, she slept on the floor, she rigged boats and she psychied herself up for Regional’s.

After much trial and error and moving around: Starboard to Port, and then to Starboard again. An eight than a four and then an eight and finally a four. She was ready. Her coach double checked to see if she would be healthy, her teammates asked. I let her coach know that boat gifts were purchased and she was rowing no matter what. We were all going to pretend this was a normal event and there were no questions to be asked.

On the morning of the race the anxiety was peaking. Now this is a child that is sure she is going to fail at every single task she undertakes. It does not matter what level of expertise she has. She is going to mess it up.

“Mom no one thinks we are going to do well. I just hope we are not last.”
“Of course you are going to be last. In fact the race after you will overtake you and you will lose that race also.” She has suffered from a great amount of performance anxiety since treatment and it was intense. My sister the Child Physiatrist told me to just agree with her. So I do.

Mary-Elizabeth scowled and laughed then went to meet with her coach and started out. They rowed to the end of the lake, more than 2000 meters away. After awhile, someone said “Here they come.” Slowly they came up the lake. Sun shining, oars glittering in the water, long smooth strokes, not in first, not in second and defiantly not last. As they neared we began to realize they were going to medal. They were going to be at least third, maybe second. They were not going to last…….. I realized I had held my breath for almost the entire race; I must have cared a bit.

Third it was. Medal and all. She came ashore, put on her medal and had a smile. That “I did it smile”. I had the “I told you so smile” Secretly I was so relieved I had been right.” So grateful that we had arrived at this point in time and health for her. It was a step, a concrete piece of evidence that the Leukemia had not won.
As we drove home from Lake Vancouver and before she dozed off for a long well earned nap she said. “Mom, I never felt like that before. I looked down the course and saw how far it was. I realized what we had to do. I also felt the adrenaline and knew we could do it. I have finally found a good use for my anxiety and adrenaline.”
Crew. It has been a healing journey. At every turn, she was encouraged, pushed, cajoled, harangued, nudged, coaxed and then encouraged some more. Her boat mates treated her like she was normal. Her coaches watched for signs of fatigue. They all made sure she made positive steps each day, week and month. Have a place to go, a chance to be with a team. A group of peers to work-out with on a daily basis. A time to forget lots of recent limitations. Crew enabled her to know she could be successful. She could gain strength bit by bit. She could be competitive and not have to give in to all the years of treatment.

The power of crew is more than in the stroke.

Went To Idaho, Loved it, Came Home

Crew Started on 8-18-08,
School Started 8-25-08
My Hillary Hoodie became obsolete on 8-28-08. I think one of my Idaho Cousins has it and will not even tell me.
It might be my brother's birthday.
I have to go pick up laundry soap and I don't do laundry
I spent a week leaning to be a mediator. Now there is training I could have used about 100 years ago.

I floated a river and lived to tell about it. Floating is not the right word.

Life is grand.

The Bird is on the Nest still

This is not the where the bird is but is just a great picture of Central Idaho as you head out of the canyon by the Payette river and head toward Donnelly and McCall

A robin built a nest on top of your trellis. I noticed on the 4th of July. Soon there after she began to sit. She has been there way way too long in bird world but still seems to have eggs. We have seen no blue bits of shell or heard any noise of demanding babys. She is also still not diving at us.

M-E suggested that she was perhaps a single mom that had not had the 'Birds and the Bees " discussion.

I checked a couple of times and she was gone yesterday. I was surprised that it made me sad to have her gone. I was looking forward to watching her raise this family. I had already planned to make sure we don't mess with her nest this fall when we deal with the grapes.

But I checked this morning and she is back. We shall see.

She feels like everyone is dying

I picked her up at the bus yesterday. She had been to camp for 9 days with Laura Breshock. No Whitney this year. She was tired but clean. she had received a call and knew that her surrogate grandfather, Richard Davis had died after a very complicated and nasty battle with some new kind of infection.

He has been a wonderful presence in the life of Mary-Elizabeth. She felt like he was another grandpa to her. She used to go to Camp Grandma with Whitney on numerous occasions. That sort of stopped after she was diagnosed but she loved him and knew he and Louis cared endlessly about her. They brought her a huge stuffed flower when she could not have real flowers and of course the famous Road alligator. Ours appears to be stuffed, green and plush but then when you are driving along the roads of the world it would be logical that thy would be black to fit in to the environment.

He will be missed.

16, oh how sweet it is.

Lots of friends, lots of fun, lots of hot dogs, lots of relief.

Friday the 13th Trip to Idaho

We left Friday the 13th. What was I thinking. Road Trip...... We were traveling with Liz and Sopie and Elvis Fluffbucket. Their purpose was to pick up Delila Fluffbucket. We stopped at places like Mel's 24 hour dinner in Yakima. Free Pancake day. 14 hours later we arrived in Boise. (Oh, Liz would not stop at the Hungry Red Neck Cafe close to Lime Oregon. It might have been wonderful. But then we will never know. Drove through the College of Idaho and discovered the feed lot is gone and replaced with Trailer World for all your horse hauling needs.

We collapsed into bed. I was able to watch the last bit of Battle Star Galactica. My secret obsession. Then up early. Aunt Mary was first on the agenda we were able to see her. She was very weak, not really able to speak. I realized in an instant that the person I had spoken to a week before had left. We said our good byes, spent some time with Logan and the rest of the gang and headed on our way. Off to pick up the pups and then up the road to Riggins.

I guess we all return home, just like the salmon headed up to spawn. There is something deep in my soul that calls me back to those deep canyons, and angry rivers. I love the sounds and smells and the feel of pine shade, dusty yet inviting. I love to find places that know what "fry sauce" should taste like and how to put together a burger. We stopped for a bit along the Payette River. Hot, yet refreshing. Cold water that is trying to escape the canyons.

Through Cascade, McCall and then into Riggins. Population 404, two steakhouses, two bars, a grocery store, mini mart and a place where pesto was defined on the menu and a beautiful Best Western. The hotel sits on the point where the BIG SALMON meets the little salmon. Lots of fisherman, bikers, and fly catchers of the bird variety. We took a big heavy sigh and stayed for two nights.

Short visit with Cousin Mary and Barney, a trip of the Big Salmon. A roadside picnic and then a long haul home.

Those who traveled with me noted that I had a story for every bridge, had lived in every town, knew every rock and could comment on almost anything that passed before us. I completely resisted telling the story of Falling Rock.

So this is what I observed on my road trip back to Idaho this decade:

College of Idaho is smaller. The pick-up trucks are bigger. No one was wearing a Hillary for President Hoodie.

Dear Aunt Mary

Lung Cancer. Bad Bad. Treatment, not so great but maybe it bought you some time. Please know that there are lots of things I didn't know about you and while they always appear in the obituary I wonder if they give the true picture of what a person's life means. Since I don't know your middle name or your birthday or place. Since I don't know when you were married or even how long you and Logan lived in that house on Alamo. I guess what I have to say goes like this.

You were always there when we visited Boise. I do remember another house in Oregon but for the most part it was the red brick house on the corner with the ever growing tree in the back yard. You always had coffee at hand or a number of other options. Never did you refuse entry to a gang of family, a wayward brother and his wife about to add a recently born child into their family, a group of family after a funeral, a college student, a teacher from a Dietrich, a law student, a visitor from Seattle.

You were always busy. Family, travel with Logan, work on lots of Charity things. You did the Cross Word, balanced the books, kept track of the important things in the world. You were a very ardent republican but those of us from the other side loved you anyway. You remembered everyone, loved to throw a party, a shower for a niece from Seattle. You were simply warm and gracious.

There were very big disappointments in your life but you "soldiered" on. You saw the big picture but could focus on the little important things. You did much for everyone but when an act of kindness came your way, you never forgot it.

You will have taken a lot with you. Lots of family stories, history, good old gossip. You have taken a big part of Logan's heart and soul and much of his memory. He is not very happy that you have left but he knew you needed to go.

We made it just in the nick of time to see you. I hope you knew we were there. I realized at the visit you were beyond our reach so we will reach out to Logan now. I dispatched Dad and Mom to visit. I think that was good.

Mary-Elizabeth cried when we left. Her visit to you was hard and maybe I should not have taken her. I thing that we have to teach the lessons that death is not a bad thing. It is not a fun thing for those that are left but it is not a bad thing when it is time.

It was time. Thank-you for waiting for us to stop by and say hello before your journey ended.