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.

Concrete Proof

In 2004, Mary-Elizabeth and Whitney were about to sign-up to begin rowing. Mary-Elizabeth never was able to start. Mary-Elizabeth has visited and watched and supported Whitney on occasion. She took a rowing camp, went to crew one day a week and then two or three and then 4 days a week. She has been very reluctant to row in a race.. She did not feel strong enough to do a 2K or even a 1.5 k race. She felt she would let down her team. She did not trust her body. She did not feel like she could face the disappointment. She would get all geared up and then..... a cold that lingered or a set of hip flexers that would disagree with the entire process. Little steps forward, big steps back.

A couple of months ago she started to question why she was rowing, was something she wanted to do or something that she was doing for me. If it was so important why was I not more involved... How would she be able to do all her homework and row next year. What if.....

Well I had a hissy fit earlier this spring and told her she had to row in at least one race. It was time to get off the fence and commit no matter what hurt or the blisters or her lungs or the fact she was not 100% recovered from __________ fill in the blank, PMS, finals, watching too many Lucy shows. Any way she was ready to do it.

She worked and was on the team and in a boat and doing well and then Belle and Karen left a little cold. Started out just feeling funky, then very tired and then a cough and then and then and then. So she was out of the boat. Her coach was less than pleased but then they see lots of potential in M-E they see how hard she works and how much she wants to succeed. She works well with other and does lots of things.

Well she didn't row at Brentwood in Canada. (I had a great time and tried local bread and cheese and bought wine from the Cowichen Tribe.) She was determined to row in Regionals in Vancouver Washington. So, lots of rest, vitamins, good meals and lots of prayer.

Off she went on the bus to Vancouver. I followed the next day. She did not row until day three but hung out, became more nervous. Fretted and worried and kvetched and did home work. It was "oh my god" hot. 105 in the shade. Then Sunday came.

I was up and out the door by 7:00 am and there was no coffee but room coffee. I arrived and helped with breakfast and other things and then we waited. Boat after boat launches. Noisy Holy Names cheering happening, boats coming down the course and the I hear the they "hot seated" No endless cheers for them. They entered the boat just as the previous group ended their race. They were off and we had nothing to do but wait.

It takes about 40 minutes from launch to start. Everyone was lined up, they headed down the course. They are more than 2000 meters away and it is hard to tell they have even started, let along what lane they are in, so where they are does not seem to even matter at that point. All you can see is a glitter and flash.

As we they were coming down the course, I was standing with a couple of more experienced mothers. I was telling them that this was M-E's first race and that she just didn't want to be last. I learned from a very small, cross wearing, medal (at least one of Our Lady of Guadalupe) that the correct term was DFL. Dead F((((( Last. .

As we watched and cheered and prayed it became very clear that they were not going to be last and then that they were going to place. I held my breath as she and her team came in third. I didn't know that a medal came with it. One of the mother's was very worried about whether or not there would be a medal. I told her I was just glad that they were not last. I later found out the her daughter was a child that really needed this sort of validation. She was very bright but did not do well socially but was determined to stick to crew. M-E had been in a boat of juniors that had never won a race. They had struggled but stuck to it.

As we drove home I asked her about the experience. She told me she had never felt anything like the adrenalin rush at the start of the race.

"Mom, I found a great use for anxiety and adrenalin."

I Am Done with being a Leukemia Mom but we are not quite finished.

Yeah, here we are in March 2008. Silly time for a post. Well sometimes post just have to happen. I guess we are both sick to death of living in this world. We found out last week that we still have lots of left over baggage.

Life has been good. Trips to Mexico with Dad, Mom's new hip is settling in..... She is still receiving straight A's at Holy Names. The flowers are up, some gardening is happening. The dogs are good. The Sibs and Parental Units are great. Mary-Elizabeth does not seem too interested in driving... What more could we ask for???

Well, lest we forget, we were drug back to scary world for a few hours. Wednesday afternoon about 2:15 p.m. I was in a mediation. I was interrupted by a call from M-E. She was crying and in pain. She told me her stomach hurt more than ever and she had hives everywhere. I said I was on my way.

I ditched the mean people that were never going to settle and headed to the car. I tried to call Sister Dorthy but she was on the phone. Little did I know she was on the phone with 911. By the time I arrived there were two ambulances and school was letting out. The ambulances were clogging traffic and I parked in a sacred "No Parking Zone." I was immediately accosted by a the parking police who backed down when I explained the ambulances were my daughters fault.

I snuck in the back, looked for a second for the elevator and then headed up three flights of stairs. I found Sister Dorothy and my scared and sick child. She was in the presence of four cute EMT's. Her tongue had swollen and she was crying and itchy and just miserable. I intervened, and let then know that IV Benedryle was probably not the best choice and convinced them I could transport her to the hospital as well as they could. No IV, No ride in the ambulance.

I had been in contact with the Hem/Onc clinic and they were not about to let us come in. I was not worried about the stomach ache and wanted a blood draw to see if I should become a real basket case. Evidently they don' see everything as being caused by chemo and cancer like I do.

We went to emergency. They got us right in and gave her some more drugs and some Hydorzine, another form of Benedryle. They also gave some of my least favorite steroid, Dexemethozone.
She dosed, I worried, they poked and we were finally able to go home. She cried and slept and I worried.

It was clearly an allergic reaction to something. What?
we don't know. Will it come back? Maybe. Was it a fluke? Could be.

One thing we know for sure, the histamine part of her immune system is back with vengeance.

14 Year Olds Don't Get to Make Some Decisions

I don't care how "mature" a 14 year olds might think they are they don't get to refuse medical treatment when there is a great chance they can continue to live. They just don't. Don't try and tell that to any of the 14/15 year olds in the car pool this morning. They are so certain in their beliefs and what is right and what is wrong. Well 4 years ago they believed in Santa Clause and the tooth fairy. It it was the parents refusing
the treatment, they would draw and quarter the family and put there pictures on the cover of People Magazine. Congress would be called back into session and new laws would be passed.

We don't let children vote, or drink or drive. We make them get their vaccinations. We drill their teeth and put helmets on them. We make them buckle their seatbelts. We make them go to school, of some sort. We make them brush their teeth and take baths. We make them wear cloths to school and we make them take ALL of their antibiotics. We make them eat, some times healthy food. We make them leave the house and interact with the world. We don't have long discussions with them about drug use and abuse, we just say NO. We tell them they are wrong and in most cases we enforce the rules. If the kids get out of control we send them to counseling. If that does not work they end up at OUTWARD BOUND. Or as the kids now say "He has gone on 'VACATION'".

As anyone that has read this blog knows, kids with leukemia die. Kids that are treated for leukemia sometimes die. Kids that start the treatment and then are not transfused die. The young man that died this week did so of suffocation. The child has a hematocrit that would not have kept a snail in hibernation in the winter alive. He had no oxygen in his system. His red blood count dropped like a rock. His leukemia was really scared of chemo therapy, his bone marrow was on the run. He might have had a really great result.

What really scares me is that now the precedent is set. Kids at 14 during the worst treatment of their lives get to be recalcitrant and just say "NO". I think the judge made the right decision for this child to let him die given his body had been robbed of oxygen for so long but what will it do for the rest of us that have kids that may need treatment.

Remember, it has only been a few years since they believed we could kiss it and make it better. We would not let a child walk into a busy street even though "he accepted what would happen."

I still need to add to the this Blog

I want to think we are done. That I have written the last of this part of the story. I think it is part of Cancer Denial. A little known or documented syndrome. It is sort of like the day we when to see Dr. Ojaman and schedule the biopsy of the growth in M-E's scull. At that time he shared part of the waiting room with the Hem\Onc clinic. I could see those really sick kids and remember saying to M-E how thankful I was that she did not have cancer.

It then took me a long time to think of Luekemia as cancer. They call it a liquid tumor. How can you win a battle against one bad cell that decided it was a good idea to go awry?? It makes finding Weapons of Mass Destruction look like a cake walk. It is such a strange way to think or in this case not think. It is just so much information. So much that keeps us from sleeping and thinking and being able to focus.

A tumor is just that, a large, ugly thing that can be attacked with lots of really great killing things. A wayward bone marrow cell. Now that is something very very scary. A cell. Something we can not see. Something we can touch but would not know we had done so. Sort of like faith and grace. We know they are there but then we can not see them, we just have to know.

Been on a cruise.
Lost weight., go figure.
Tucker has learned to go downstairs in the basement.
The tomatoes need to be picked.
Winter is coming.
I have been forced to turn on the heat.
Mary-Elizabeth does not have Mono but lots of her friends do.
I am thinking it is time to order a turkey.

Translation: Things are Good. Life is Normal.

I thought I was done but I think this is much harder to escape than I believed

I thought we were done. I thought I had posted the last post on this site. I thought ........ guess what, I was wrong. While she is done, her ANC is very high, I guess the immune system is more than ANC. It involves lots and lots of other stuff. She can fight off stuff, but once something arrives, it likes to stay a bit longer than with others of us that have a good system.

She has a cold. She can't talk, she feels miserable, her throat is sore and she is very unhappy. She is in bed.

So, I checked in. Yep.... she is normal. She is post treatment but needs a year to really get back to herself. So now they tell us. I will relay the message and hope for the best for her.

She becomes so freaked when she is sick. She told me yesterday that she just worries and becomes depressed. Who can blame her. Oh, well. Chicken soup tonight. (Mexican of course).

End of Treatment Pictures

End of Treatment Party...... The Review and other Ramblings

Perfect. Perfect weather, Perfect place, Perfect group, Perfect amount of food, Perfect timing.

What more could any one ask. I took a moment every now and then and just looked around. I saw people that had helped us in so many ways do what we needed to do. Sometimes it was a phone call or a roasted chicken. Sometimes it was an e-mail or a varied box of presents for M-E to open on the bad days. It was a basket of magazines and balloons, a bouquet of cookies or just a hug when I was weary. A Tully's card, a chance to go to the grocery story.

Frederica was a miracle. A life changing event.

I know that I have said this before that this blog is done. We have told the tale of Frederica, we have whined and complained and asked for prayers and burned enough candles to create global warming. We have been on a very very long journey and for once this really does feel like a stopping point. A time of new beginnings.

M-E starts her sophomore year tomorrow. This is the first start of school that is not under the Leukemia cloud. Only a few appointments this year. No worries about chemo and radiation. No scheduling of port removal. No hair to sweep up. Just a normal year.

It is time. I am facing my own little adventure this fall. Much less dramatic. I might jot a few words now and then. I am sure nothing earth shattering. Our ties with the hospital are strong but not moment to moment. We will keep in touch with the hospital and lend a hand to any family that needs to know what to worry about and what to ignore when they get the invitation to Cancer World.

We will never truly leave this behind but for now we are just knowing and wise visitors, Elder statepersons in Cancer World.

I will put some pictures here from the party but this is pretty much the end of Frederica's Wild Ride. It is time to make August a time of happy things, road trips, friends visiting, tomatoes ripening. September a time of new beginnings. Friday the 13th just another day, (unless there is a full moon).

It is time for me to spend some time doing some work making this blog useful for someone who has just started. This backwards stuff is hard for someone that just heard the word ANC or PIIC line for the first time.

Thank-you for everything. Thank-you for your prayers and thoughts and gifts of time and food and friendship. Thank-you.

Tomorrow is another day and it starts at 5:30 a.m. I wonder if I have any coffee. I am going to need it before the carpool gathers and we head to Holy Names for the first day of her second year in high school..........

As always, we need lots of prayers, and candles and good thoughts coming our way.

COME ONE COME ALL

BIG PARTY DOINGS......

WEATHER SHOULD COOPERATE. EVERYTHING IS ORDERED. I MAY ADD TO THE PLATTERS.

WE WILL HAVE A GOOD TIME.

4:30 TO 8:30 P.M. THE 23RD OF AUGUST. LINK TO LOCATION SITE ON TITLE.

Visions and Healing

It has taken me three years to realize that since August 14th, 8:35 a.m 2004, while sitting the deck in Lake Chelan drinking coffee and talking with my friend Judy Sommerfeld, we have lived in an alternated universe, CANCER WORLD . More precisely, CHILDHOOD CANCER WORLD. It is a parallel universe. No one can look at us and know we have been given the secret pass words. There is a whole world that is way to familiar of our secret language and shares our fears and our hopes and our sadness.

In CCW, there is a different reality. It comes with a greater appreciation for each day, moment and laugh that comes from a child. People can read about it and listen to stories about it. They can empathise and grieve and feel the same helplessness that each of us feel. But no matter what, they can only really "imagine" what it is like. The best description in the world does not explain the true flavor of a ripe mango or bite of crisp lettuce. I always remember lots of my friends have lost parents. I realize I will not really understand that particular pain until I have the same experience.

Those of us in CCW have a different understanding of what is happening with the little girl Gloria Straus. She is in ICU having been in a medically induced coma for more than a week right now. A very sensitive and involved Seattle Times Reporter Jerry Brewer, has been writing about the story. He is posting a couple of times a day about her plight and the paper has been following the story on a pretty regular basis. Gloria and her family ran out of treatment options in April and are now relying on faith, prayer and pure determination.

Gloria has had 5 months of some ups and downs. She has been home and able to be with friends and family. She has been able to run and jump and play and just laugh. She has had five miracle months.

She is on a number of machines and tubes and had her heart restarted while in route to the hospital. I am sure lots of people are saying "enough is enough" . It is something those that watch say and do so with only the most gentle kindness. Only the family can make that decision. If that is the final decision, it will be made when they have had the time to know it is right for them. I have never had to make that decision. My most trying decision was what kind of juice to try and entice M-E to drink. We always had options and hope and alternate protocols. While we inhabit the same world, we are on different floors.

Apparently each member of the family has had a dream about Gloria and they see her walking. She is visiting them all. She has even visited Jerry. I do wonder if it her way of telling them she will be okay once she is released from this part of the journey. Visions are very much a part of Cancer World. I think we are a people that used to be more open to them and were guided by those very important messages that came to us in dreams and during special waking times. Once you have been knocked out of our first lives, they become possible again because everything is so so upside down.

Mary-Elizabeth had a vision.

I can finally, finally talk about the healing vision M-E had at her Healing Ceremony. She was finally able to deliver the message to Rick Boyle and so here goes.

Gerald King, the Chief Medicine Man, told M-E that she might see things during the ceremony. She settled into her seat, Buffalo, Deer, Mountain lion, hides, covered with corn pollen and sacred soil and the chanting began. Waves and Waves of repetitive sounds, sound I would love to be able to listen to on a regular basis. After the ceremony, after the tea, the blue corn meal mush, after the feast, M-E was very very quiet. I asked her if she was okay. I figured it was just nerves and exhaustion. We had done a lot and had been many places.

In the evening she finally began to talk.

Mom, I saw something.

Where?

During the Ceremony. It was sort of scary.

What was it?

(Insert some soothing word, words of encouragement, general platitudes about how this is normal while freaking out and wondering what was in the corn pollen.)

I saw the moon. Very clear and full. I saw Joseph Boyle and he talked to me.

(Gulp, okay, act like this was a normal vision and ask)

What did he say?

He told me he was okay and to tell his dad that he was fine. He told me that he was always with them and that they should not worry. Then he told me that he had been with me and that I would be okay.

What did he look like?

He was older, like 12 or 13.

Mom..... tears, Mom........

What does a mom say. I don't remember what I said but most likely my usual.

Thanks for telling me, it is okay. Everything will be all right.... Rock her back and forth, Rock her back and forth.

It has been a year since all of that happening. I tried to get her to talk with Mr. Boyle. I certainly would like to hear from my child that had died. She was finally able to tell him.

She was testing Joseph B. to see if he meant what he said. I think her ability to verbalize the message means she is starting to believe the part of the message that meant for her. She is going to be alright.

Visions and messages have great power.

Dr. Tracy AKA DR. FISHNETS......

I know I babble endlessly about the good things that arrived in our lives because of M-E's battle with Leukemia. I just don't know how not to.

Dr. Tracy Hentz was one of our most precious gifts. She was brand new as a fellow. She was 13 days into her first rotation as the In-Patient Hem/Onc fellow and she was Children's gift to us. It sort of went like this...

Good Morning:

I am Dr. Deb Friedman. I am the inpatient Attending. This is YOUR fellow Dr. Tracy Hentz. She will be yours for the entire time you are a patient here. Quite frankly, I would have rather had a high-speed connection and a very stiff drink at that point in time but I have since learned she was the best gift of all.

She cared for us, she fussed over us. She watched and worried about everything. She came to see us even when we were not her job for the day. She took the time to do all the extra things that helped and asked all the really insightful questions about how we were doing and would fight for us to leave when we were sick to death of being at the hospital. (She only yelled at me once when I didn't take M-E to the emergency room when she had a fever. I am still in trouble for that one. But I knew what it was and I just could not face 378 hours of waiting.)

Tracy also became our friend. At some point I took great comfort in the fact that she was willing to be more than our doctor. It was a sign to me that M-E was going to make it. In some of those very dark days of worry and lack of progress, she was going to be okay.

We love her so much that we sent her to live with Belle and Karen in Chinlee. We could not let her stay here and be unhappy and Tracy will be a great fit for the Dine' (Navajo). She listens, she has a special ability to figure out what people really need and it is not always medicine. She will value the healing ceremonys and learn from the Medicine Men. She will be able to help with the cancer kids that will need her and she will feel like she is not too far away.

She has made it to Chinlee and has unpacked. She has discovered that rattle snakes and tarantulas are nothing compared to the Black Widow Spiders. She is settling in to walks with the REZ dogs and red dust. She is bonding with the local grocery story and grieving about the loss of good coffee. All in all it is good.

Before she left we gathered some people and decorated Waiting for the Interurban. Here are the pictures.

August 14th 2004-August 14th 2007

In one hour and 45 minutes, we will mark the moment in time that we entered Cancer World. It is odd, that now looking back, it seems like only yesterday yet I know it has been a long and arduous journey. We are some of the lucky ones. We are about the celebrate the end of treatment and launch M-E into her sophomore year at Holy Names. I love when the good comes with bad.

Cancer World: my new title for the realm we inhabit. It is not a bad place but it is a place that only a select few visit. Others can drop by and lend support but it is sort of like motherhood, until you have a child you are not a member. (Dads have their own world no matter how hard they try.)

Cancer World never lets you leave. It is sort of like being born Swiss. Once Swiss, always Swiss. You can move on but there is always a mark, a secret handshake, a language that only a select few are allowed to know.
It is not a bad place. It is a place where you learn to receive instead of give. You learn to trust and be flexible. You learn to forgive yourself in ways you never knew possible. You re-adjust your priorities and your expectations of life, people, and the world. You learn that planning is for people with nothing better to do but believe they have an iota of control over their destiny. You learn about the fragility of life.

Your learn that children die. That medicine is not the only answer. That God answers all prayers but not in the way you wish. That parents are so so strong but the children are stronger. You learn that death is not the worst option but is to be accepted, sometimes. You learn that sometimes it is the best answer.

Today, the day we acknowledge three years of being in Cancer World, another family's battle with cancer is being played out in a very public way. Gloria Strauss has been the subject of a Seattle Times series. She is at Children's as we speak in ICU and there is enough pain and prayer to cover the whole world. The title will take you to Jerry Brewer's journal. He has been with the family writing about their journey for more than 6 months and is spending lots of time at the hospital.

Today would be a good day to say a number of prayer for the family and for Gloria.

We are just very thankful that this is just an anniversary.

END OF TREATMENT PARTY...... COME ONE, COME ALL....

We are gathering at the Lake Union Crew facility. It is really a "cruise ship" that has to be taken out to maintain it's "SHIPNESS' We have found brick oven pizza guy. He will be making pizza for everyone and there will be goodies and other kinds of food. All Mary-Elizabeth's favorites. She is refusing to let me make jello. She also wants a chocolate fountain and I am just refusing to do that..... I am not sure why.

If you can come great. Let us know so we can make sure you have all of your food and beverage needs met.

END OF TREATMENT...... WHAT A BLESSING.

Granma Mary is 75

For some reason this birthday counted. She is a very funny lady. Sometimes she is practical and dismissive of hoopla. Sometimes she shows the part of her that would be Grandma Foster and wants the celebration. 75th was one of those years.

She called and wanted me to get on the Internet and arrange for tickets to see the Rembrandt exhibit Portland. Then she wanted to stay somewhere that they did not take dogs. They she wanted train tickets. Then she invited us. No one else. Okay, task accomplished.

We all trekked to Portland. Stayed at the Embassy Suites and even made dad eat Chinese food. By the time we arrived via car, Mom had read the history of the Multinoma Hotel and knew who made the china. She had talked with half the staff and was organizing everyone. She called housekeeping no less than a half a dozen times and was fully supplied with such items as extra radios and a pillow or two.

We went to the museum, the Chinese garden, shopped a bit, had good food, found a french guy that made good coffee, spent time in the pool and failed to convince mother she should have a spa treatment.

Mom was not given her Rolex by Dad. He gave her $75.00 of Good Will gift certificates. Amy gave her Rolaids, Dad is shopping for a Rolodex, claiming that he is hard of hearing and Mom had a good time.

Check out the old hotel sometime. They flew an airplane off the roof in 1912, a queen or two stayed and breakfast is included.