College Searches and Visits

So welcome to our world. Since I applied to college it has become oh so much more interesting and expensive. You no longer fill out an application, send it in and pray. You have "To show a real interest" . I am not sure what that means but evidently, I should have sent letters of inquiry when ME was born, if not before. One is supposed to research, contact admission counselors, the campus and then go visit and have an inteview and then visit again. It is always good to build a library also.

I can not abide college visits. They are BORING. This is how it goes:

The college was founded ____________. We have great social activities. We have a great cafeteria. We have a strong alumni association that will get you a job after you finish school. A new one. We have our own postal zip code.....

I have a whole different set of criteria. Do they take the Common Application? ( you fill that puppy out and the computer sends it to all your colleges) Is there an on campus coffee stand and can I obtain a decent triple short latte? Is the parking easy? Is it a place I will want to visit again? What is the book store like. So far the bookstores are ranked as follows:
1. U of Washington
2 U of San Diego
3 U of Portland
4. Seattle U.
5. Gonzaga.

How many boys are on campus and how many smile at ME as we walk around.

I refuse to do more than a brief visit and am not packing in 10 colleges in the upcoming "Senior College Visit" time allowed in ME's Senior schedule. I don't have time for a fall vacation. This is a racket...... Maybe after the "we want you to come" letters arrive then we might take a second look.

ME has a bit of her mom in her. She was drilled this last weekend about college and what she wanted to do when she grew up. She said the on Monday Gonzaga was having it's first audition. She would then determine whether or not there would be a call back.

Gonzaga has been placed on the list. Okay, the pizza smelled good. Lousy book store but I was able to see Bing Crosby's Oscar and all his gold and platinum records. What could be better.

Remission, Five Years Later

Sunday, September 13, 2009 marked the 5th year since remission was announced. It took a month for her to go into remission. The way it works is that they do a bone marrow aspiration, for diagnosis. Then a week of chemo therapy is administered. Seven days later they do another bone marrow aspiration. The goal is that they can achieve remission in that very short period of time. Before the chemo makes the kids sick. If you fail the first test then they schedule one 30 days post diagnosis. If the first one fails they bump up the length and intensity of treatment. You are moved from bad to very bad. Words like High Risk and extra phases of treatment are added.

Because of her age and the fact that there was a mass in her skull/brain made her High Risk to start with but the lack of remission on day 7 was a blow. It made us very nervous at the time and I didn't know what I know today. If kids don't get into remission within 2 months, they don't pass go and head directly to bone marrow transplant. No one ever wants one of those.

So on the 12th of September both of us were thinking about the 5 year mark. That was supposed to be when Mary-E received her mini cooper, the one I promised her 4 years ago. But then that was before 5 years of treatment and no license and bad juju with money and the economy. But the 5th year was still on her mind.

She quietly said to me: Mom I made it, I get to graduate from Holy Names. That is enough.

It is not often that she lets us see into those dark worrying places of her mind. Where she harbors are the years of pain and suffering and worry.

As we watched the fireworks from the ferry on Saturday night, I gave her a hug and told her they were for her. For her birthday, her remission birthday, for her survival.

Now, we wait, 5 more years before they will say she is cured.

Matching Socks

Socks, they are a bother. They seem to hide, don't stay with their friends and seem to like swirling in the sock basket endlessly. The theory is that if one keeps putting the socks in the basket they will be matched eventually. IT IS A LIE.

So this week-end is the week-end that the socks are either with their friends or they go to Good Will where people with much more cleaver mines than mine will do something with them.

New Year, New Start and Lasts

Nothing has really changed other than the books get heavier and the days longer as the work more complicated. Mary-E is having a great year so far as they all settle in and begin to celebrate "lasts".

Last First Day of School
Last Classes at Holy Names
Last First Assembly of the year
Last Homecoming
Last Christmas Ball
Last high school finals
Last...........

We count them down and begin to disconnect for the firsts to follow next year.

First year at college
First time in the dorm
First roommate trouble
First time cafeteria Jello

All in all it is an adventure. One of many to come.

Hubris

Remember reading all those Greek Dramas and the long discussions about Hubris and the fates that befall those that think they can control their world and figure things out. Well they were right. There is no control or any reason to believe we mere mortals have any control over our lives or those that are near and dear to us.

We have been smug... Or more accurately, I have been smug. I think I know how the systems work, I can maneuver through the medical crap like that irritating guy on the small motor cycle during rush hour.

Then the E-Mail comes: WE NEED YOU TO COME BACK IN FOR SOME MORE BLOOD WORK. THERE APPEARS TO BE A CHANGE IN SOME OF THE VALUES THAT LEAD US TO BELIEVE.......

The word choices are very specific:

Need to come back. Not You might want to drop by the lab sometime in the next month or so....

It appears that 12 doses of Spinal Cranial Radiation did not make her thyroid very happy. It seems to have been a slow but expected death. Unless the blood work shows some other auto-immune issue- it will be very treatable. Thyroid pills for the rest of her life. Joy, Joy.

We talked about it last night and I told her that she should not expect more than her fair share of long term side affects and that I thought 3 would be enough thank you very much.

So......... Off to the lab for a fasting blood draw.

The photo is of Grandma Armstrong Lanham. She was a stong willed women that fought her way through life. She seemed to be an approriate person to be on guard.

Yes They are goingg to Be Seniors and That is a great thing!!!

Okay, lets be very clear here.

1. We are not losing our children.

In fact I bet for everyone that is upset that their child is a senior will be complaining in 5 years that they have moved back home and are leaving their shoes every where. They are always going to be our children.

2. They will return home less but won't love us less.

Sure when they come home they are going to need to reconnect with friends, they will stay out late, they will not share what they are doing and they won't honor curfews. They love coming home, they expect it to be the same. Just ask any parent that dared to change a room or God forbid move.

3. They were never ours in the first place.

If we wanted them to stay with you forever, you should be remained that slavery has not been legal in the county for a long time and then refer to number one.

4. Be thankful that they can leave the nest.

I remember sitting in a hospital room at Children's Hospital and looking out my window. I could see St. Joe's spire and Holy Name's Dome. I just looked out that window and prayed and pleading and hoped that she would be able to go from St. Joe's to Holy Names.

Each and every step, and milestone and moment that marks her journey to Independence is a gift and proof there is a God and while she has a very wicked sense of humor, she answers prayers, pleading, threats.

Instead of worrying about what it is going to be like to not have an obnoxious, self important, teenager in the house, use this year to re-discover your life BC (before child). It has been waiting for your return.

The Real Story of Gastrocnemius Recession Recovery

Now we have a new problem. She is walking, sort of like a penguin but as tippy as a clown blow up boxing thing. She can fall flat in a second. Seems kind of funny. She did a ton yesterday so there were some pain and discomfort last night. Seems to be doing better now but now the word of the week is moderation. So first I complain she is not walking, now I complain she is walking too much.

No, I am never satisfied If we had been satisfied we would have been sitting around the camp fire in caves. It is important to want to make things better.

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....