Monday, July 31, 2006

Some of the Pictures

Okay, all of them, not edited, just there. I have such a hard time with learning how to do all of this. The link ought to take you to the Yahoo Albums.

As I look, we had such a good time. Route 66, the Grand Canyon, Miles of open desert, lots of open space. It is quite the place.

Sunday, July 30, 2006

Rocks


This was my favorite rock formation. I loved the fact that the three pieces, mesas? cliffs, thingies had all taken the same shape while being separate. I was amazed by the symmetry they began the same and then were eroded and shaped and carved by the elements. Sun, rain, wind, cold, leukemia. At first glance they could be called the three sisters, one not much different from the other. Closer inspection reveals subtle but definite differences.

I guess Gwednolyn Brooks said it best in Boy Breaking Glass

"Each on other
is having different weather"

We all start out the same and little by little by the elements shape us, we are similar but the end result is very different if anyone cares to take a closer look.

Thursday, July 27, 2006

Words don't always say it all






Sometimes pictures don't do it either. How do I explain what happened during the last week? I guess I should just state it as follows:

I will never be the same:

After catching the first and second and 30th peak at the Grand Canyon;
After seeing the sun peak through the clouds as the sun rises and the rain falls;
After seeing Condors soar ;
After watching a tufted squirrel with a white belly eat a pinion nut knowing that it's brother on the other side of the canyon has a black belly;
After seeing an elk just grazing ;
After seeing the eroded mesa in all the dusty purple, red, yellow and grey that the world could want;
After eating Navaho Tacos ( fry bread with chili and cheese and lettuce);
After seeing cloudy water from the tap;
After seeing a 100+ bent over Grandmother, weighted down by turquoise and years of hard labor;
After seeing a group of "Rez" dogs wagging their tells, knowing someone will open a package and feed them, eventually;
After seeing beautiful horses and colts on the side of road, with no cares and lots of good grass in the high desert;
After seeing the formations in Monument Valley, and feeling so small and realizing our time on earth is miniscule;
After seeing a Hogan next to a new house;
After seeing poverty and happy children playing, side by side;
After getting up into a jeep and going deep into a canyon to visit the abandoned homes of the Anizasi on the clift sides;
After seeing the kids playing on the bottom of the canyon under the cottonwood trees;
After hearing about how the US government cut down 3000 peach trees because they could;
After hearing how the Navajo love their land, barren and windy and desolate as it is;
After seeing the little head of a baby peak out from a cradle board;
After seeing the dirt floor of a Hogan with the medicine man sitting in the west,
After watching the buffalo robe, mountain lion skin and deer hide being made ready for Mary-Elizabeth;
After watching the making of a sand painting of a long life line with sand and corn meal and corn pollen, a path for her to follow;
After hearing everyone's clan being recited;
After watching my daughter leave and being led back in to sit on the robes that will give her strength;
After being transformed to another time and placed with chanting that touches your heart and sole and resonated with each syllable;
After watching the corn pollen being sprinkled and rubbed on all the right places;
After putting my hands in the medicine bag, with it's smooth cool rocks and corn pollen, placing the healing substance on my tongue, top of my head and dusting it towards the East, to honor the Dawn Spirit;
After talking with the medicine man as he told us of Winter Stories and more than a 1000 such ceremonies;
After hearing M-E explain what she saw and heard during the ceremony;
After joining in the drinking of the blue corn meal mush and feast of lamb and Navaho tortillas;
After chasing away endless flys that were hungry too;
After searching for rocks to send to Seattle, each more beautiful than the last;
After heading out into other parts of the Navaho Nation and seeing the big sky and rocks, and endless beauty;
After experiencing the kindness of others from a different world;
After visiting with young men that honor their traditions and tell the stories with their art;
After returning to the "real world" and knowing we have to make the journey again;

I still hear the chanting, the deep resonant sound that so profoundly changed us all.

Wednesday, July 26, 2006

Some Pictures





Just a few. Big holes, big rocks and little boys with an opinion. It was such a special time. I am so glad we took the time and went. The "Mitten" is one of two. The Navaho's believe that the Spirits left them to let us know that they would return.
The little boy was at the ceremony and trying to tell me his name was Holden by showing me. He was covered with dirt and straw because he was trying to feed the sheep and goats and they sort of scared him. More when I have a real minute.

Monday, July 24, 2006

WE ARE BACK.......

WE have been to another world and returned. We will never be the same but in a good way. There is so much to tell and so much to show. We took lots of pictures. Learned more than expected. Love Chinle and the whole southwest. Came home rested in some respects and exhausted in others.

The healing ceremony is hard to explain in words. It is a sound that is still resonating in my soul.

I will try at a later time. I just need to unpack and try to get some sleep and face the Belagona world tomorrow.

Monday, July 17, 2006

Time is close

We leave early in the morning. I am working on getting out of the office and then picking up drugs and other things. I have a feeling we will get it done and I figure there are plenty of shopping opportunities once we arrive.

Wish us luck. I will post if I can and will do so later if I can not.

Friday, July 14, 2006

This is an article that will be published this fall.

Taking the Long View by Lisa Brihagen, copywriter

Higher cure rates and fewer long-term effects from treatment are just two of the benefits adolescents and teenagers receive when their cancer is treated at pediatric medical centers. Among pediatric institutions, Children’s has some of the best survival outcomes in the nation.
When Mary Elizabeth Sierra-Lanham was having trouble seeing the blackboard at school, a routine eye exam showed that the optic nerve in her right eye was very swollen. A string of visits to different specialists led to an MRI that finally explained the problem – a lump in her head was pressing against a major vein.

That was when mom Sally Lanham brought Mary Elizabeth to Children’s where a second MRI and a blood test confirmed that her daughter had Acute Lymphoblastic Leukemia (ALL), a type of cancer where malignant white blood cells or "lymphoblasts" are overproduced in the bone marrow and can spread into the bloodstream and vital organs. ALL accounts for approximately 40 percent of all childhood cancer.

Although Lanham didn’t know it when she switched Mary Elizabeth’s care to Children’s, her decision may have saved her daughter’s life: adolescents and teenagers have a much better chance of beating ALL – more than 25 percent better – when they receive pediatric cancer treatments rather than those intended for adults. Separate studies in North America, France, The Netherlands and Italy confirm these findings.

"We’ve learned from years of research that teenagers have far fewer relapses when their treatment is longer and more aggressive than the less rigorous treatment that middle-agers and seniors receive," says pediatric oncologist Dr. Doug Hawkins. "Yet, we still see medical oncologists out in the community treating 15 to 21 year olds with the exact same protocols given to people who are decades older."

Adolescents and teens not only benefit from cancer treatments developed specifically for their age group, they also thrive in children’s hospitals where teams of skilled providers focus on their long-term health concerns and the unique needs of their entire family.
Reducing the risks

When a persistent cough and mysterious itchiness around the ankles sent 16-year-old Matthew Hale to his primary care physician, an X-ray revealed a tumor in the lymph nodes in his chest. Heeding the doctor’s advice, the Hales drove to Children’s that evening where members of the cancer team met them in the Emergency Department and began a series of tests to pinpoint the nature of the tumor.

After a biopsy, clinical oncologist Dr. Blythe Thomson broke the news that the tumor in Matthew’s chest was Hodgkin lymphoma, a type of cancer that can develop anywhere in the body’s lymph system and spread to almost any tissue or organ.
Matthew was surprised when Thomson spoke directly to him rather than to his parents. But it’s a strategy used by Thomson and her colleagues on the cancer care team that builds trust with teens and empowers them to take responsibility for their care.
"I was in shock about the diagnosis, but glad my doctor talked to me with my parents just listening," explains Matthew. "I prefer that."

The good news for teenagers with Hodgkin disease is that cure rates are well over 90 percent. However, the treatment, which includes both chemotherapy and radiation, can leave teens with serious long-term effects, such as infertility, secondary cancers, or damage to the heart, lungs and other organs that won’t appear until 10 to 30 years down the road.
"I’m always thinking about what life will be like when the kids get older and trying to find ways to make the treatments less toxic right now," says Dr. Debra Friedman, an expert on Hodgkin lymphoma who currently leads several national clinical trials aimed at reducing the long-term effects for teens who survive the disease.

Her research findings are lessening the risks of toxicity for those currently in treatment. For example, some teens whose Hodgkin disease responds quickly to chemotherapy no longer receive radiation. Those who respond more slowly to the chemotherapy still receive radiation but get a less aggressive type of chemotherapy that has fewer side effects.
For risks that cannot be mitigated, the cancer team works with patients to plan around them. For instance, teenage boys are encouraged to go to a local sperm bank so they’ll have the option to father children later in life even if their treatment leaves them sterile. Most parents, says Friedman, strongly advocate the trip.

A healing environment

Lanham keeps a Web journal that chronicles her family’s long journey with ALL – Mary Elizabeth, now 14, has been in treatment since August 2004. Lanham’s weekly entries chronicle day-to day details, including foods that Mary Elizabeth can tolerate, juggling schedules to get to appointments and her daughter’s uncommon reactions to medications. Her journal reflects a truth about childhood cancer that is well understood by clinicians in pediatric institutions: when a child – even a teen – is sick, the whole family is affected.

A host of specialists at Children’s helps families cope with all aspects of the cancer experience. Physicians and nurse specialists work with patients and families to teach them about the disease and develop a plan of treatment. Child life specialists, social workers and chaplains support patients, parents and siblings throughout the emotional journey.

"There’s a safety net of resources that’s available," says Katherine Hall, whose 20-year-old son Brandon decided to transfer his care for Hodgkin lymphoma from a community oncologist to Children’s. "When Brandon told his nurse practitioner about some nutritional issues he was having, she paged a nutritionist who was able to meet with Brandon immediately and give him suggestions tailor-made for a young man his age."

Mary Elizabeth recalls the MRI tech who played music and chatted with her during her first procedure at Children’s – the visit that confirmed her cancer diagnosis. "I had an MRI at another hospital and it was scary," says Mary Elizabeth. "They left me alone and no one checked on me. At Children’s, the staff tell stories and we laugh. I’ll miss them when I’m done with treatment."

Surviving is just the first step

The experience of having cancer – and being treated for it – can have lasting physical and emotional consequences. The Institute of Medicine, part of the National Academy of Sciences, recently recommended that survivorship programs be a focus of care for all cancer survivors.
Friedman directs one of the only survivorship programs in the country open to adolescents and teenagers who have survived childhood cancer. The program provides after-treatment clinical care and referrals, patient education, access to the most current cancer research and opportunities to participate in research to help others.

So in addition to the hugs and congratulations patients get from staff on the day that their cancer treatment is finally done, they also get a one-page piece of paper that may be more important than their high-school diploma. It is a treatment summary that gives the exact details of their therapy, what is known about long-term side effects, recommendations for future care and an invitation to Children’s cancer survivorship program.

"By 2010, one in every 250 young adults in the United States will have survived a childhood cancer. They could potentially live another 60-plus years," says Friedman. "As pediatric oncologists, part of our job is to look beyond the cure and think about their immediate post-treatment needs as well as those that will extend throughout their lives."

Sidebar: I love you, stay away!

Younger cancer patients tend to flourish with the intense attention and specialized play therapy they receive during their treatment. But teens can flounder when their normal trajectory toward self-reliance is cut short with frequent hospital stays and health concerns that isolate them from peers. Child life specialist Katie Tinholzen is a child and adolescent development expert who helps pediatric cancer patients of all ages cope with the hospital experience.
Tinholzen supports teens in their struggle to maintain control and independence at a time when they must be dependent on parents and health care providers. She encourages journaling, scrapbooking, songwriting and creating art to help teens process what’s happening to them and to make meaning of their cancer experience.

Tinholzen also helps worried parents sort through common coping strategies of teen patients – sleeping to escape or being ambivalent about the future, and trains clinicians to create a culture of respect around teen sensitivities with body image, privacy and communication.

Sidebar: Reaching Out
Northwest families living far away from pediatric cancer care must weigh receiving treatment at home with traveling to Children’s, which has some of the best outcomes for cure in the nation.
"That’s not a choice we want families to have to make," explains Dr. Russ Geyer, the medical director of Children’s Hematology/Oncology Department.

Patients in Alaska receive an initial evaluation at Children’s, then get their treatment from a Children’s pediatric oncologist practicing at Providence Children’s Hospital in Anchorage through a program set up by Children’s, the Alaska Native Medical Center, Providence and the state of Alaska.

Patients living in The Last Frontier receive the very same protocols and rigorous safety standards followed at Children’s with one exception – each step of their treatment plan is double-verified by fax instead of in person. Geyer and his team are working to set up a similar relationship with providers in Montana.

Sidebar: Proven Outcomes, Newest Treatments
Our 30-year involvement in pediatric research studies or "clinical trials" that shed light on how best to treat cancer is a key reason why Children’s survival rates are better than the national average. While only 5 percent of adults participate in clinical trials, more than 95 percent of children with cancer do participate. These clinical trials integrate treatment improvements gained from previous studies while trying therapies to answer new questions.

Children’s helped create – and remains a leader in –the Children’s Oncology Group (COG), a group of 240 pediatric medical institutions that studies new treatment options. An important aspect of COG’s research is to track the health of study participants over time in order to better understand the long-term effects of their treatments.

She is Back at Camp and the Healing Ceremony gets only Stranger

WE made a trek yesterday to places in Washington called Home and Maure and down roads with names like Herron with signs that said- Dead-end and No-Exit. I think those are the same thing but I am not sure.

There is a very good reason that the Camp people provide a bus. I would no more haul her to the end of the earth and go pick her up every year.....

The important thing is that she back. I saw where "they" were sprained. Makes perfect sense. The kids were very happy to see her. She was happy to be back. The place is a bit of heaven and I am sure she will do great.

The ceremony is getting stranger and stranger. Belle spent some time with Gerald King and explained the new accidents and he was deeply concerned. Things had to change. The Lamb dies but not in our presence. She can not be with the Lamb as it is dispatched. It will not help the healing. The ceremony time has been changed. It must now start very early in the morning and be finished by Noon. Why? you ask, well "I could explain it to you in Navaho" seems to be the answer. Also there will be a need for more money because the grill and wood need to be purchased.

Also did I mention that we have another lamb. Albert's Grandmother wants us to use. Well you cannot say no and of course you would be honored, and so Belle now has livestock.

Time to get ready for work.

Monday, July 10, 2006

Solid Tumors vs. The bone marrow kind












See, one is easy to see, one is fuzzy. We live in the fuzzy world.

As we travel through this process we begin to notice differences and to differentiate about childhood cancer.

It all begins out as BAD, VERY VERY BAD.

Then you begin to realize that there is BAD, BAD,BAD cancer. The kind that makes you go max out your credit cards and go on endless vacations and hope the end comes on a nice sandy beach in some sort of poetic way.
Some brain tumors, metastisized anything, liver cancer, pancreatic cancer, that sort of thing.

Then there is the BAD BAD BUT THERE IS HOPE kinds of cancer. They are generally solid tumors like Wilms tumors, Brain Tumors, or Neuro blastomas. A blastoma is a tumor of a group of nerve cells. They like to hang out in the stomach area and spread from there. They seems to be pretty do-able most of the time but then sometimes they hide out for a very long time and wait to make themselves known and then they are nasty but still can be fixed.

The thing about the cancers listed above is that they are solid. You can get a picture of them. You can focus on them. You can positively visualize that they are becoming smaller and are leaving. The treatment for them is usually less than a year. People spend lots of intense time and then they are done.

Mary-Elizabeth has a more ethereal kind of cancer. No one knows where it is. It is somewhere in her bone marrow but since bone marrow is in all the bones, it is hard to isolate. She has BAD BUT NOT THE WORST KIND OF LEUKEMIA. Some are much worse. Some immediately require transplants. She has the worst of the best kind. But it is all bad and takes a very long time to treat. They have to keep at it because some of the cells go dormant and then hide out. As I think about it, since the chemo kills everything, maybe all of her cell are getting killed and replaced by new cells all the time.

These cells that are bad hide in lots of places, her brain, her lymph system, and if she were a boy in her testicles. It is all so scary. How do we every know? How do we visualize? How do we every trust again?

Maybe we have to go through all this treatment so we get to the point that we would rather trust than continue chemo and blood draws and emergency trips to the hospital for sprained ankles and scraped feet.

Sunday, July 09, 2006

This Link is to pictures of where she is supposed to be........



Fudgie Pudgies from the North Hill Bakery. Red White and Blue of course for the big birthday.



She was Packed. She bounded on to the bus around 9:30 a.m.

I came home, did a couple of things and then settled in for some serious sewing and DVD watching. I kept thinking I should take the dogs for an adventure, I should at least take them for a walk around the block. I should.....

About 4:30 I received "THE CALL" from Children's hospital. Tracy, our great Fellow that just happened to be on call, had been contacted by the nurse and M-E was on the way to the Mary Bridge in Tacoma. She had stepped off the steps, on to the beach and found herself with two sprained ankles and some nasty scraps that needed to be cleaned out. She had a huge contusion on her foot and was in a lot of pain. We talked to Tracy and she made a couple of calls and it helped make it better.

So grab the puppy and run out the door. About half way there, I realized I might have left the back door open. So... Call Vickie, she was kind enough to wake up and drive over to check. She returned my call to assure me that the door was now shut and locked.

I arrived around 5:30. She was in a room because I had called ahead to let them know that we "don't do waiting rooms". It was a mantra that had to be repeated more than once. There were two counselors with her and she appeared to be sort of okay. When they left she just sobbed. She is so so sad. She was in so much pain.(Yes I administered drugs) We were finally put into a room, saw a great doctor and had the whole XRay, scrubbed out the wound with special soap, wrapping of the ankle routine. (She has very high arches and no apparent fracture at this point.) We made it home around 11:00 p.m. Not bad.

Good things, food was great. Stop for a Spinach, Portobella Pannini sometime. The people were kind. I am not certain as to which person answered the Emergency Room Phone "Joe's Bar and Grill". I have never seen so many police and security at such a small facility. I can tell that there are some "issues" I don't usually encounter. You see, Tacoma General and Mary Bridges, share the same building but are very different entities. It appears to be the PI and Seattle Times sort of deal.

Well she is home, she wants to return to camp, she is on crutches and can barely walk. I have hope for her because this just could ruin her summer.

I talked with the doctors and it appears that she is going to be accident prone for a long time because she has no reflexes left from the Vincristine. Once she is done, she will regain them after about 2 years.

Right now I would just like her to to be able to walk.......

Keeping in Touch.

Just came across your blog while searching for people who maybe are going through what Iam.. I was diagnosed with AML last year... but I believe you are a true hero.. if it was my daughter, who is two now, it would just shatter me.. its so much easier that its me! BTW, is ME getting treated at the SCCA? Thats where I'm getting treated..n

Some one sent me the note above. Who ever sent it, I would love to keep in touch.

Yes M-E is in Seattle and I guess treated at SCCA. Since she was only 12 when she was diagnosed she is at Children's. We have SCCA doctors and as far as patients are concerned, it is seamless transition. I can only say that I feel so fortunate to be here with all the resources and wonderful caring doctors and nurses and staff. We are a walking advertisement for Children's. I just hope someday we can repay the kindness.

Friday, July 07, 2006

Fall Out

Opps, some molars did not get sealed because of chemo and now there are some cavities.

Opps, we are finishing prednisone and heading off to camp and none of our shorts fit.

Opps we can not find the immunization records because they were moved and not put back and heaven knows where they are.

Opps, Mom is very grouchy and worried about camp this year but trying not to be.

Opps, the dogs are all going to have to sleep with me.

Opps, the house can get clean and stay that way.

Opps, I don't have to cook.

Opps, I think this is looking like better fall out than I expected.

Thursday, July 06, 2006

Noise


It is all around. Even in these early mornings. We seem to have more than our fair share because Tucker is very vocal about life. he has lost his bone to Sadie for the third time. He does not think it is right and would like everyone to know about it.

See I have two two year olds. They see the world in the "MINE, All MINE" perspective. It is so much fun. As I recall there are Toddler Property Rules. They are simple and concise:

If I see it, it is MINE
If I ever saw it and see it again, it is MINE
If I touched or smelled it, it is MINE
If I touched, buried, it, left, it for something better, it is MINE
If I.........
This creates lots of noise but so does life.


The noise from the fire works seem to have calmed down. There are so many bangs and pops and whistles. Noise comes at you in lots of different directions and from many sourses. The noise of the felling of trees, the garbage trucks, the construction guys, the sirens. The birds letting everyone know they are in charge.

Then there is the noise in my head. "What if......."

She had a very bad experience with her last Spinal Chemo on the day before her birthday. Pain upon waking, head ache, then heart ache. She sobbed and sobbed about wanting to be normal and wanting to have this done. Wanting me to make it stop. How do you stop that noise?

All the noise in the world won't make the What If's..... go away. I don't think they will go for a very long time, if ever.

I guess the only thing to do is to listen.

Monday, July 03, 2006

Birthday Parties




Many came, many celebrated. Mary-Elizabeth felt loved an honored and most of all had a great time. What more can I say.

Note, M&M's the ones in the middle said

Happy 14
MEB

Okay, hold the applause. I do get mother of the year.

Saturday, July 01, 2006

Thoughts on 14.

The link takes you to a year ago. We were at the tail end of her intensive treatment. What a different a year makes.

Things we know:

She is going to Holy Names.
Treatment ends in December.
Puppies are as much work as everyone remembers.
Flowers are so good for your soul.
Life does go on no matter how hard it feels.
Cleaning out the garage is sort of like ridding the world of flies. It is never going to happen.
Curly hair is a great thing to have for a few years during your life.

Pictures tomorrow.