Mary-Elizabeth is down for the count. As she said to me with a smile. "sharing is caring" . I am hoping she will have a few quiet days and just sleep because with this cold, sleep is the only time you don't feel like crap. I find that I wake after those few days of "three wise trucks ran over me twice" days with no real memory of the event.
I woke yesterday morning, loaded the dishwasher again, made coffee and then coffee cake. (That was not much of a save) and started breakfast. The Sierra's were coming and Mary-E loves these mornings. The kids are ready of great presents. It is a good time. Squeals of 6 year olds when the open monster remote control trucks is the best next to 10 year olds finding joy in a million little things and already planning the trip to the American Girl Doll store.
We napped, I did laundry, yes the true Christmas Miracle. I did more dishes because the Sierra side of the family love the glitz and glitter more then anyone and the good dishes love them.
All and all it was good. Now off to Eugene. MaryE will get to her appointments via the many angels in our lives. I will see what Mom is up to. I am expecting something is on her mind. Or we will be Mart Shopping. K-Mart, WalMart, some of her favorite places.
As I leave I always feel conflicted. So many families are deep in the battle but sometimes I need a rest. I think and pray for the kids in ICU (keep fighting Rebbecca). 1 year olds on Steroids (Gayle you can survive this, but it is the worst of them all). Kids trying to get a hold of maintenance and still fighting the battle in places away from Children's (Alison you are our hero.) Parents wondering if the cancer is coming back anytime soon since there is no doubt it will (Darlis enjoy your view of Russia from your Alaska Porch).
We can't fix most of it. We can't even begin to start. We can save a meal, burn the coffee cake and forget to light the candle but sometimes it is enough to just use the good china and the real silverware.
Just know every "little save" counts in end.
We have always tried to make Christmas special in simple ways with some spectacular twists. There is not a lot of money for big presents so the little special gifts are sought out to the ends of the world. Little things that might be a memory jogger. "Oh I remember when...." sort of thing. Not just the perfunctory sort present for present sake.
This year I am sick. Deep down, stay in bed for 22 hours sick. I feel better today and suspect that will be the trend but yesterday Mary-E and I had a long talk about all the things that needed to be done in order to have the special soup and the stuff for Christmas Breakfast, She has been a busy busy bee. She took on my stuff as well as hers. The only think I have been allowed to do is clean the crabs.
She has done three kinds of cookies, candied pecans and the stock for Crab Bisque. She has done all the shopping and even came home with stuff for dinner. Love Love Love Black cod.
We are well under control. I did show her what parts of the crab goes away. I was the prefect person to clean crabs this year because I can't smell anything. I am hoping I can taste by tomorrow.
Here are some of our relatives. I found the files on my computer. Love old pictures. Wonder what those a 100 years from now will think about our pictures?
Crab soup needs some attention.
So Dad always said that kids don't eat enough dirt. He was deeply disturbed by the efforts to totally remove germs and dirt from children's world. He was a true believer in building the immune system by one muddy rock in the mouth at a time.
Small exposures, little bits. Sort of like a vaccine. Give the body something to work against and strut it's stuff by working on building immunity. He was horrified by purell and anti-bacterial products except when necessary. Like hospitals and in cases like Mary-Elizabeth's. He would have had the subtle smirk on his face yesterday during the conference.
So here we are, 11 months post transplant. Lots of tests, not all of the results but enough that there is some certainty. Mary-Elizabeth's immune system is not longer her own. She has 100% Pearl Ann's cells. She has some loss of lung function, bone density, liver is okay, not great, too much iron still but not enough to bleed, kidneys are on the fence but seem to be holding her own. Over all she is in good shape.
GVH is still a problem. She should have started to taper from the immunosupresents about 5 months ago and there is no taper in sight. So they are changing the medication.
She is going to be taking a medicine made from dirt. Special dirt. Dirt from Easter Island. Did I mention it was dirt? It really is dirt. It does come in a capsule.
I had been told a long time ago the people that work at places like the Hutch bring back dirt and water from far off lands. People look at the stuff and then see how it can solve problems.
So the plan is for her to transition from Tacro to Dirt and see if it will help Pearl Anne be happier and then try to come off the prednisone. What does that mean, well we aren't done with this yet. There are going to be more time at the clinics but hopefully it will work, if not there are other drugs made from other weird stuff out there.
The really big news is that barring some sort of other disaster she is out of the deepest part of the woods. She can fly to clean places (not China). She can take a train and move away from sick people. She can even take a bus, if she does it during the quiet time of the day. Better to wait until summer on that. There is a certain amount of care that must be taken while on the immune suppressants but all in all it is great news.
What a Happy Muddy Christmas for us!!!!
21st of December 2011.
We were waiting to see if Mary-E was going to be able to have a transplant. Was she healthy enough? Did she have any hidden infections? Would it work, would she be one of the 40% that make it through the first year? All of that.
Well it is Friday the 21st of December 2012.
We are in such a different place. Same sort of evaluation but not quite as through. She has had most of the scans under the direction of the SCCA so they will accept the results. We don't know much yet.
Today we meet with the doctors and have the "Conference". It will tell us what toll this transplant has taken on her. We know she has lots lung function and liver and kidneys are unhappy. There is this push pull between given her some sort of estrogen so she does not go through menopause and her clotting issues. She is still on lovanox and the other night her skin started seeping. It was freaky.
They called her last night and told her there would be no vaccinations given. It sent her to bed in a funk. The vaccinations give her more freedom and ability to be around more people. Her bubble is getting a bit confining.
In a few hours we will know the plan. There is always a plan. The plan never works out but there is then a plan. Sort of like Congress.
Wish they had a plan.
when there is a stop light at every corner and people Jaywalk any way;
when your cab driver dozes off at every red light;
you ask for a good coffee shop they don't send you to Starbucks (Thanks Esther);
when everyone walks like they are 20 minutes late to a very important appointment;
when a harried dad will let a perfect stranger walk the baby around the shoe store and everyone thinks that it normal;
when every continental breakfast spread has lox and bagels;
when you are sitting in a coffee shop and you move and someone brings you the purse you left behind;
when you are sitting in the NYC reading room and some guy approaches you for directions to hardware store and you can help him out and you realize you must look like a local;
when you drift by a museum and realize there are the letters of Beatrice Potter on display;
when you can stand and gaze upon a vellum copy of the Gutenberg bible and truly be amazed at how far we have come in technology;
when the Rocketts are 20 feet away and you are filled with the wonder at the precision and amazed at how many crystals can be on one outfit;
when you travel around a park in a horse drawn carriage and begin to appreciate how important open space is for every one's soul;
when even the hot dog guy is trying to be helpful to everyone and makes sure your dog is served up just right;
when the kid jumps the turn style and you exchange a smile of understanding;
when a young girl gives you a seat and keeps you on the train when you want to get off;
when you see "Clair" from Ugly Betty and pretend it is a normal thing;
when your town car looks like everyone elses town car;
when you walk down Park Avenue and see the guy with wads of cash and the sunglasses and he pretends it is a normal thing;
when you see every restaurant crowded and full and no one is worried about the wait;
when the cab guy will pull over and wait while you find your gang;
when only the tourists don't have umbrellas;
ever block is a surprise because it is not one giant skyscraper, the small beautiful buildings are still there only adding to the diversity of NYC;
when everyone, says "excuse me" & "thank-you"
when the best grocery store is in Grand Central Station;
when you realize the "Hudson Bookstores" from the airports all started there on Hudson Street in New York;
when 8 miles is a very very long way away;
when you can totally escape your life for a few days and become part of another living organism and be refreshed.
I was taken on the adventure of a life time. Remember Queen for a day where you received a new refrigerator. I was a part of a very new version.
First Class to and Fro from New York. They served a very nice Malbec.
Beautiful room in the Grand Hyatt. Drinks in the bar. Good breakfast with a machine that dispensed Torrifazionne Italia coffee, two shots at a time. A wonderful day of strolling up 5th Avenue, with lunch at Sosia, a small restaurant with the best fresh mozzarella I have ever had. Carriage Ride through Central Park.
Quick trip downtown to catch a town car to go to New Jersey for a Rolling Stones, Lady Gaga and Bruce Springsteen concert. Home for a street dog with the guy from Central Casting.
Then we did it again but this time we ended up at Radio City Music hall for the Christmas Show. In the front row!!!!! Amazing. A quick walk in the rain down town to a place called O'Casey's. Reuben Sandwich, Irish Coffees, it was a bit of heaven.
Then home after a walking adventure down Park Avenue. A moment with the correspondence of Beatrice Potter in the Morgan Library. Meeting a friend for coffee at a place that served great Stumptown Espresso.... from Portland no less.
Loved the picture from the Stone's Concert. Mary-E was excited that I was at a Hockey Stadium. The Devils have done very well in the Stanley Cup. It all depends on your point of view.
Oh for you that are not very smart about cool things like big rock concerts. This is a picture of the Tongue Pit.... Who knew?
Meb started her year one evaluation without me.
I was in New York City walking down Park Avenue on the way to the Empire State Building. Just walking. Looking, seeing and just absorbing the wonder of it all. Quiet walk. There was a guy there that had wads and wads of cash and a weird hat and sunglasses on.....
It was a wonderful adventure. Tonight I sleep. Tomorrow we continue the journey of the evaluation. Life is good and we are expecting it to get better.
Pictures and comments and observations must wait until tomorrow. I should just say I was tickled to find Torresfasioni coffee in the hotel and Stumptown across the street.
New York City.
Here I come.
Yeah. Off to see what I can cram into a few days. Stones and Springstien, Lady Gaga and I are spending some quality time together. Some time wandering the city and visiting some weird places.
Candles at St.Pats. Top of the Empire State building. Morgan Stanley Children's Hospital to visit a mom with a child in transplant. Purgatory Press to pick up my 2013 datebook and some frozen hot chocolate. Some time just wondering and some time on the Subway to just say I did it.
An art museum if possible, a gander at the Guggenheim, Frank L's last work. And then.... Maybe a book store, the Strand, A street corner for a meal.
There is a bit of melancholy with the leaving of my child here but I figure we will do this trip again. Maybe next year.
I really need this and I didn't even know it. It all fell into place with a minimum of jostling around. It falls into place.
It is hard to explain to anyone why we would whine about not having a real Christmas Tree or GVH or house arrest or loosing hair or having to have an NG tube or having to be 30 minutes from the hospital.
When people try to make it better with comments like:
Lots of people love their fake trees. I have had one for years.
She could have GVH of the liver.
or my favorite
She could be dead.
Really folks. If the only thing a Cancer World parent is complaining about a stupid rule about Christmas Trees be happy for them.
These are signs of other much more worrisome things. GVH and long term prednison = need for all the major joints to be replaced.
30 minute tethers mean that things can go bad so so fast that everyone wants the child close. In other words, they are not out of the woods, they are not even in the woods.
It started out when we stole the wreath from our neighbor's sister. It was not on her door and I was there and then I thought it was a good idea to have it.
Then Lisa stole her sisters.
We felt guilty and sent the wreath fairies to find a suitable replacement.
Then Keith and Carol swapped out the Swag for their wreath. Then I found a little sparkly wreath and took the Swag and gave it to Sharynn. Then Angie gave me a new one. Lisa then came a stole the extra one.
Now things are starting to appear on the wreaths, lights, bows and fancy things. Things seem to have settled into adding fancy things. Love the surprises....
Ps. I cann't seem to be able to upload the pictures so that will be later.
Before transplant Mary-E went through this long and complicated process. There were tests done and re-done. They want these kids to be healthy enough to stand the process. During that evaluation we found that her body had fully recovered from her first encounter with leukemia.
We start the process today. Most of it will be next week but today she visits with a dentist. He will be assessing the damage done by all of the treatment over the last year. WE are hoping it is not too bad.
The body is an amazing thing. It fights back and repairs itself in many ways. I am always amazed at how it all works. We know she does not have GVH in her mouth. That is more of a blessing then one can imagine. While my daughter does not talk about what is happening to her she does look online for the sorts of things. She knows what is out there.
So today we are off to do something really really difficult. We are mailing a package at the post office. Now that is a challenge.
Doesn' t that just sound nasty. It is. No matter what they say or call it. It is a nasty nasty thing. It is not a little thing, it is just another thing in a long list of awful, terrible, horrible, things.
Essentially they stick a tube through your child's nose into your stomach and feed you that way. (It is one way that relieves Chef Walter from having to feed the kids.)
Kids have a very hard time keeping up their eating. It is not enough to eat Chicken Nuggets and re baked deep fired reconstituted mystery food and re-microwaved, previously in a sealed packaged fake mac & cheese. The fact is they can't eat a whole lot of the time. There are so many things that make their stomachs upset. Chemo, radiation, pre-meds for blood products, mouth sores. When they are ready to eat while they are on steroids the food they want is white and salty. Even then they don't like Chef Walter's food. (Not that he would ask or care or even acknowledge he should be cooking for them.)
It is a big battle. The older kids understand. seldom do you see a teenager with a NG Tube. They will have none of it. Mary-E was very very savvy about them. She would ask what the limit was and would not go below it. She knew when she had to start eating and she did.
The little ones are less able to be bribed. They hurt, or they don't want to eat and no amount of bribery will help. Remember our favorite little Robin. Mouth sores=closed mouths. As Mary-Elizabeth said: "mom she isn't stupid, she knows it hurts."
So the tubes have to happen. Like everything in Cancer World it is just one more thing. It is one more reminder that we are set apart from the rest. We don't cure our children with good food and good sleep and good stories. We cure our children with pain and suffering and colored poison and tree-less houses and weeks in confined places with filtered air and endless interruptions and pain. We allow people to experiment and poke and prod and cut and paste and do endless things to them. Why? because we have no other choice.
For reasons we don't understand we find ourselves having to let it happen. It is what stands between ourselves and total utter despair.
One thing that helps is other parents in Cancer World. I have been corresponding with a mom in New York. Daughter 17, transplant on the 5th. Child in ICU with total Kidney failure. A couple of fellows have crossed her path and not in a good way.
I know the docs and other medical staff understand our rage and tantrums and our failure to always be the kindest. They have been in this trench before with other parents and if they did not understand they would find another area of work.
I do worry about the poor soul that fails to provide the frosted cranberry scone when it has been one on of those years. I worry about them.
Hoping for less damage in my wake as we travel through Cancer World.
One Year Follow UP.
Lots and lots of appointments. Monday starts the process. It is just a dental appointment.
The really hectic week will be the 17th. We have appointments that start at 8:00 am on Monday and end at 3:00 pm on Friday. Lots of needles are coming at her this week. She has no line so she has blood draws, anaesthesia and she starts all of her vaccinations again. All of them. Except the only one she never had, Chickenpox, because she had Chicken pox.
So I have a plan regarding the week. Lots of distractions. Monday we are going to see King Tut and visit Chihullie, I will just call him Paul.
Maybe the Carousel and Santa. All of course while the kids are in school.
For me, I am trying to borrow a copy of Game of Thrones season one. I am almost through the first book. Great Book. A bit more decorating and some Christmas baking. Planning of the Christmas Eve Crab Bisque so I might be making some bread today to see if I am any good at it any more.
This is a busy month but for many different reasons. All of them good.
I have heard Mary-E say she might be willing to stretch on her tether a little bit. She admitted she was just scared. Every time she even thought about going somewhere GVH came and bit her in the butt.
My child has never been a "push the envelope" kind of girl. She is good a hunkering down and holding up until it is darn good an safe to stick her head out. I am sure that had she been in the Blitz, she would have come out in about 1953. I had been thinking I would just kidnap her and do something wild, like go to Bainbridge Island.
Tomorrow we are going to go to Lynnwood to a U of W Hockey game. Love those games. Should be a fun thing to do. If we make it to Lynnwood, who knows, maybe Everett.
She has never been one to jump out into traffic without full and complete evaluation of the situation. I remember when I tried to get her to play soccer. I told her she had to go and just watch. She agreed to do that. I picked her up from day camp and she immediately wanted to go shopping for cleats and chin guards.
So we will take this slowly. A few miles a week, or month. We will slowly merge into the world again. Today to start the process, we went to Hardwicks Hardware Store. It is hard to really describe. It is wonderland. If you need it, they have it.
There is this weird dynamic in Cancer World. I think it is sort like the WWII vets. We don't really talk about what is happening. Oh, report on Facebook and in cheery Christmas letters. We talk about great acceptance and report on happy cancer. The media is only interested in happy cancer stories. King 5 comes to the SCCA floor and tells glowing stories and children are interviewed. Everyone comments on all the good things.
I remember one piece that Jean Enerson did in Julyish of 2004. Kelsy, a lovely child of a former co-worker of mine commented on the food. We all smiled and loved to see the happy bald children, just trying to be children.
We attended Kelsy's funeral in November of that year.
This is a sobering and awful place. I think it is worse this time because we have made so many more deep and lasting connections. Sort of like that first year at college. We lived and ate and cried and laughed and had donuts off the "Snack Cart" that showed up on the floor every morning at 10:00 am.
Caringbridge and Facebook have kept everyone in touch. We hear about more and more children and friends and family members with cancer. There is a reason we are deeply afraid of cancer. It is sort of the instinctual fear we have about Saber Tooth Cats.... we know it is bad in a way other things are not.
So many of these wonderful, well loved children do make it out of Cancer World. They simply do not. They all start with great hope and optimism. It is the only thing that keeps you going and the fact space is so limited, there is not a bed to crawl into. It takes a few months for the reality of the situation to come clear. Around the edges there is fear and complete and utter despair.
You can't let the kids know how afraid you are. You are their compass and you better know where you are headed. If nothing else, you have to pretend. You hear yourself repeat over and over: It is going to be alright, it is going to be alright, it is going to be alright.
I say this to Mary-Elizabeth ever single day. No your cheeks are not bigger. Your knees are going to be better soon. Your huge, soar, angry stretch marks will not be that color forever.
The hope is that if you say this enough, it will be true.
Just know that while we never tell you everything, we never let tell ourselves everything.
We all start out with the greatest of hope. We cling to that hope and fiercely push away any alternative that even takes away the hope of cure.
It takes years to really understand and comprehend the different paths. We start on only one path. The path that leads us back to our "normal" life. Unfortunately so many seem to be diverted or halted or come to the end of the road way too soon.
This has not been a good week for kids with cancer. Jaxon found out he has no more options. I should not say Jaxon but his family. He is a smiley, loving wonderful child that was born with Downs. Sometimes when we talk about what is fair and what is not fair, lets wrap our collective minds around the fact that kids with Downs have a much higher chance of getting leukemia. Because some how that makes it fair.
Evan was on the floor with us for several months. He had leukemia and seemed to have a kind that just laughed at chemotherapy. His family make the trek from Phoenix, to Seattle, trials at the NIH in Maryland, St. Jude's and then home to Phoenix. Their 14 month journey ended when Evan's body said STOP. I read their Caringbridge page and what a family! I thought it was kind they never once mentioned the bratty teenager Mary-Elizabeth who always wanted to sign up for 2 hour baths.
Then there is Katie the Great. She is a lovely child/young lady with osteosarcoma. She had her tumor attached with chemo and then removed. Just as they were planning to return to Alaska (so that they could look at Russia from their front porch), she had a scan that brought them back here. Bone cancer metastasizes to the lungs and hers decided to do so. So she is back here, and headed to a Trial at the University of Washington with a 20% chance.
So this has been my week. I don't mean to make this about me. These are families in such pain. I wish I could help in some meaningful way. Everyone does but there are so many things our of our control.
I promise I will not be upset about Christmas Trees and bad food and stupid people. I promise I will clean the basement and not spend another dime on Christmas presents. I promise I will walk 10,000 steps every day and never eat another piece of bread with butter on it. I promise I will answer all my mail and listen to all my voice messages and be nice to Republicans.
I will do anything to make cancer go away and leave our children alone!!!!!
We had a house there during our "North Idaho" years. We would go for the week-end and dad would get away from the phone. There was not phone or television. I don't even remember a radio but it had a wood stove that we cooked on and a great dinning room with wooden walls and a plate rail. It is the dinning room by which I judge all others.
While we went every week-end, I often felt like we missed things back in town (30 miles away.) But when ever we could, mom would pack us up and haul us to the lake. It was not unusual for us to stay until Monday morning and drive back in time for school.
I missed dances and games and sleepovers and lots of other stuff. But I remember doing things like making a dress for a formal, reading real books like Atlas Shrugged and Gone with the Wind. I remember baking dozens of cookies on a wood stove. I remember lots of snow and leaves and walks to the lake in the summer for swimming. In retrospect it was a wonderful time. I was not wise enough to recogize it at the time.
We are at Spirit Lake. We are missing things. The Nutcracker, busy shopping and holiday window shopping. The TapRoot Christmas show, Tea at the Queen Mary. Finding a tree, having everyone over to decorate it.
But while we are at the lake we do get to do somethings. Mary-Elizabeth is wraping presents because the internet works so well. I am beginning my slog through Game of Thrones, 1-5. I am working on my Tuna Noodle Cassorole and thinking about making bread tomorrow.
It is a quiet time. A blessed time. A time I will never forget. A time I hope I appreciate now.
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