Poem to be Publish

AWARE

Absolute knowledge we declare,
but we are blindly unaware,
not that we do not care,
we are just deaf to despair.

Ears hear what they want to hear.
Hunger still brings tides of tears,
little ones cry and disappear.
Isn't that our fear?

Eyes see what they want to see.
Passing over those that plea.
We have a will that is free,
to which humanity is the key.

D0 we act how we want to act?
Do we stop a fear that's fact?
Only we can make an impact
if we are willing to interact.

Mary-Elizabeth Sierra Lanham, Grade 12
Holy Names Academy
Seattle, Washington.

No News is Good News

Amy Humphrey met with the Doctors yesterday. There was lots of cancer. They took out what they planned and have no evidence it has gone beyond the nodes. There is a chance there is more in the other nodes in her neck but the doctor is not too worried. Re-check in three months.

So... back to breathing.

Waiting for Results, but Surgery went well for Amy Humphrey ( I am using her name a lot so she can be "googled"

Surgery on Amy Humphrey was long but without incident. No loss of heart rate, blood pressure, slips of the knife that cut the nerves to things like the face, arm, vocal cords. All seems to be good. She came out of surgery looking a bit like Frankenstein but given the 8 + hours, she was great. Bit of pain on day 2 or 3 but she soon bonded with the "special" medicine and is well on the way to recovery.



New words in Alex and Amy's vocabulary: Pathology Report. On Thursday they meet with the Doctor and take a look. The Thyroid and half of the lymph nodes were taken out. We know there was cancer in all of those, I don't know what the report might say.



So now to the important stuff. Alex and I found a sort of Jewish deli. (I have driven all over Portland looking.) I went to Fabric Depot.



Update on the Pathology Report when available for Amy Humphrey, Oregon Resident.

Amy Humphrey Lanham

We were all sitting around and she mentioned that she was not on the Google search engine. She had "googled" herself and did not find a mention. I am wondering how long it will take for this entry to show up. This is sort of a test.

We are all worried about her. She has medullary carcinoma and is scheduled for surgery on Wednesday. It is the only treatment for this form of thyroid cancer. It involves a 6 hour surgery. The entire thyroid and one set of lymph nodes have to come out. There are lots of very important nerves that run through that area. There is a good chance that a nerve will be damaged and because there are so many of them, she has an entire laundry list of things that can go wrong.

Loss of voice, use of right arm, stopping of heart, breathing function. Need I say more. There is a 30 percent chance she will not survive surgery.

Time to light some candles, bargain with Buddha, do a sacrifice or three and then just whine to what ever supreme power you deal with in the day to day thing that is your life.

Now the Really Hard Stuff

So we have arrived the New Year. 2010.

Life has shifted to the future.

Graduation. May 30th.

College Choices: Carroll College, College of Idaho.

Both have offered money but 9 more to go.

2009 CHRISTMAS LETTER.

Make Believe
JANUARY: Mary-Elizabeth and I were invited by the Obama’s to Washington D.C. We stayed at the White House. We had the Lincoln Bedroom of course.

FEBRUARY: I was picked to be the first hip replacement/old lady to travel to the Space Station for a couple of weeks.

MARCH: Mary-Elizabeth was doing some research and located an entire cavern of Van Gogh, Monet, and Picasso’s paintings and the famed Amber Room stolen by the Germans. The French were so happy that they gave us the Mona Lisa.

APRIL: Mary-Elizabeth was picked to travel for a month with Madonna on a tour of Europe, Mideast and Africa. She met with the Queen and many other heads of state. The Queen was so impressed with Mary-Elizabeth’s collection of Queen Elizabeth flatware that she was gifted a palace and promised she could have a choice of any of the Queen’s subjects as a Senior Prom date.

MAY: Mary-Elizabeth and her friends were escorted to the prom with the real Harry Potter and his peeps. (Of course we know the books are real stories and not make-believe.) The girls were picked up by a Broom Limousine, had dinner on a platform in the sky overlooking Seattle put there by Dumbledore. Mario Batalli was the chef. Of course they stopped by Dicks after the Prom creating quite a stir as the Broom is 40 feet long and has a hot tub.

JUNE: Mary-Elizabeth was invited to attend Harvard, Yale, Princeton and Brown. They all gave her a full ride scholarship even though she never applied.

JULY: 17th birthday came and went without much hoopla. Her red Ferrari was a welcomed gift delivered by Edward Cullen and Jacob Black. (Twilight Reference)
AUGUST : We both competed in the New York Marathon. I was 3rd but Mary-Elizabeth took 1st. She beat the men a true first. We were both dressed by Mode Magazine and featured in the opening episode of Ugly Betty.

SEPTEMBER: Mary-Elizabeth settled into school for her last year at Holy Names. She is so loved by her teachers that she has no homework and only must appear each day in class. Her lessons are downloaded onto her IPod and she just has to listen. No tests, mid terms or projects are required. Only A’s will be given

OCTOBER: Martha Stewart finally confessed to the world that I gave her all of her ideas. She will be providing me with gardening, organizing and weird eggs for life. I may have the floor of my choice stenciled.

NOVEMBER: Mary-Elizabeth arranged for all of my friends to fly on the 787 Dreamliner to Vegas. I know everyone thinks there has not been a flight of the new Boeing plane but then it was a secret. She rented out the Venetian for the week-end. Everyone won at each game. The private Elvis show was pretty amazing….

DECEMBER: Central Props from Universal Studios came to our house and we are decorated to the max. 50, 0000.00 lights are on the outside and snow falls only on our house. The interior is completely done, tastefully of course. Each room is a different theme. A tree from each continent. The best part is that someone will be there on January 7th to take it all down.

REALITY; nothing happened in 2009. No big trips, other than a couple of fun weddings. A couple of college visits, some great time with family and friends. A few trips to Whidbey Island where the dogs made dog friends.

We are so so grateful and thank God and Mary and the Saint’s every day for our return to NORMAL.

Merry Christmas 2009!!!!! Sally, Mary-E, Tucker and Sadie

Thoughts about Christmas and other matters

There are things about Christmas I just love. The smells, the out door lights. That small feelling your gut that tells the tension is building.



There are things about Christmas I don't love. I hate the endless advertisements, busy stores and poor selections of Christmas cards.

This year we are going to do some things differently. We are not doing much shopping. Even when money is tight, I find that there is a lot of ways to fill the "needs on the list". We are headed to Eugene and gathering to do puzzels and eat big meat with the family.



Then we will be do lots of family bonding which result in lots of loud screaming and the we will return with stories and deep desires to not go home for Christmas. I think there will be blood when we get out the monopoly set or Mia (the dog) eats a puzzle piece. Lots of cooking, and cleaning up and dishes and valium for everyone.

And then we do it all over again.... That is how this all works.

Cancer World and Christmas

ME is fine.

Others are darting back and forth into the must loathed world. Let's see. Amy, Alex's wife, my former college roommate, has been searching for the cause of the metastasis in her lymph nodes. Lots of drama and worry and well placed concern. Yesterday they determined, as much as they ever can, that she has a form of thyroid cancer. Not the one easily treated but she will be having surgery next week. The next round of candles to be lit need to be for "containment". They seem to think things are fine.

A very good friend's mother with a rare form of breast cancer may not be celebrating Christmas this year. Lots of family is gathering. No one will be surprised but as we all know, even when expected, there is no way to prepare for the loss and hole that used to be that person in our lives.

One of Mary-Elizabeth's kids she was in charge of this summer, Maddie died last week. While Maddie could not beat leukemia, she never lost faith in the existence of Real Mermaids...

All of this has made me edgy and Mary-Elizabeth sad.

We are looking for some good news. We will take it anywhere we can find it. Maybe we have to be happy that when the Christmas Tree tumbled, nothing was lost.

All Most Turkey Day!!!!!

Well we are in the count down. Lots to do but then that is life. I continue to work on organization and other such nonsense. I don't have too much to do. People are coming and it is a potluck. I am doing the Turkey, Stuffing, Gravy potatoes, oops, better go do the cranberries.....

BIG WINDS AND OTHER DOINGS

BIG WIND. LOTS OF BIG WATER. OH YEAH..... WINTER IS ALMOST HERE.

Update: Children's still drawing blood and poking my daughter. In search of the answers about the endrocin system. Oh, is that a mushy science. Sort of like cooking. A little of this, a little of that. See how that works, and then ask you a whole bunch of really vague questions:

Are you tired? Well I am a teenager and am up lots and lots of hours each night studying AP Calculus and Physics, Yes I am tired.

More so then before? Well, I had cancer before that and had taken hundred's of doses of chemical specifically designed to rob my body of all energy making matter.

Do you hop out of bed in the morning? NO, but then I have never been a morning person.

Do you seem cold? Well my mom loves to sleep with her bedroom windows open and Tucker pushes the back door open all the time. So our house is the same temperature as the out of doors on a good day.

Does your hair fall out? Compared to what? I have totally lost all of my hair twice and then just for fun, at the end of treatment most of it went.... But then I guess the last few months has not been good.

Good news, no real issues that can not be address. Thyroid seems to be toast. It can hop out of bed if it is so inclined. The pituitary gland needs to be evaluated. Evidently it has lots to do with some of this. Human Growth Hormone is still needed and it gets to decide what to produce and all of that.

So we sit in the warm house and watch the howling wind and are very glad not to be in the storm.

November has Arrived!

Some how it snuck up on me. Here it is. Halloween came and left lots of candy this year. The full moon was here and we are heading to the last Friday the 13th. Lots of weird days and projects and rain and hail and thunder and lighting. College Applications, planning for the end of year. Making of Fruitcake, a birthday for me and then Christmas. How can I complain?

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.