Peeking out of the Rabbit Hole....

We are coming up on 11 years from the moment that Doctor Balter looked into Mary-Elizabeth's eyes.  Eleven....  People talk about water flowing down a stream or river and washing away the  pain and fear and despair.  After 11 years, I am sure I have seen these same water molecules more than one time. 

Running water is very healing.  It heals our souls and allows us to move forward.  It takes great efforts to stop water.  It will travel great distances and make amazing detours to get where it wants to go or must go.  Sort of like Cancer Moms.  We are pretty unstoppable. 

I spent the week-end with a bunch this week-end.  I was invited to join nine other women in an amazing house in Leavenworth.  We were taken care of in a wonderful way.  Laughter, Wine, Good Food, Quiet Time.  It's so weird to be able to walk into a room and not have to introduce yourself.  The very fact you are there is enough.  No on is "there" unless they have been through the entire process.  We are Moms of Cancer Kids.  We are the lucky ones and have kids that are still with us. 

I have been trying since the beginning of all of this to figure out how to heal. The entire process has been so difficult, time consuming, soul consuming.  In all the rush to keep Mary-Elizabeth alive and handle life, lots gets pushed aside.  I know people are just sick and tired of hearing me talk about being a Cancer Mom, other kids dying. All the struggles with Hospital food, insurance companies, medication side effects, cost of job loss, cost of unreimbursed medical stuff, everything.  It should be over, it should be done but I have not been able to put myself really back together.  

As I look back, I had started the process three and a half years ago when Relapse reared its ugly head. Things were starting to turn around.  I was flirting with maybe having a real life.  I was working on my weight.  I was paying attention to the new lines and wrinkles that had appeared and put some of the world back into perspective.   

I have been bashing around and trying to figure it all out.  A bit of escape, a bit of fun, a lot of miles on the car. Some pretty special times away.  Cruise to San Diego,  Time on a beach on Camano Island, time alone in my house, time..... but inmost cases I was still worried about someone or something.  There was always an element of care taking going on.  I was worried about the people with me or needed to do something for someone.  

The Leavenworth Retreat for Momcology was so different.  We were in a wonderful place but we had only one thing to do.  Be pampered.  Food, treats, massages, henna tattoos, quiet time.... I even tried Yoga.  It was so amazing.  Time and NO worries was the required activity.  Time with coffee on a deck and a bit of wine.  Some much needed retail therapy and time to process, listen, commiserate.  

Most of us have a strong support system.  People that made it possible for us to come out of this tornado with some semblance of a life.  They did our laundry, sent us money, fed us, brought us wine, cleaned up our back  yard and were on call for everything we were willing request.  It was remarkable.   But.....

There is something so healing to be with your  Peeps... Those that have walked that mile and been on the same journey.  We don't have to explain the anxiety, the fear, the anger, the disappointment, the loss of the certain well planned future of our children

.  We are freed up to speak and know we don't have to explain.   I came away in a completely different space.  As I packed my bags and combed my now curly hair, I felt restored and revived in a great way.  I felt encouraged and newly connected to those that spent the week-end with me.  

Let's be honest.  We need way more slumber parties.  The YaYa Sisterhood had much more content about the needs of women to help each other and we should pay more attention.

Time to spread the word about Momcology and work on making more retreats happen. 

Bit More Progress.... Information from Natalie, who is exhausted and headed home for some much deserved and needed sleep.

Lulu is moving all limbs can answer yes.or no questions and was able to tell us she she is in pain working on sedatives and getting her comfortable no change in lungs ventilator down to 50 percent so doctor said going in right direction has blood clot in right arm started blood thinner. .low fever....dad is staying tonight to give me a break. ..get to see my other girls and my bed...Lulu strong from the icu.


No matter how bad it is at the hospital, going home to your own bed is the best medicine...

Hope and then....

Lulu Ysarua Martinez is feisty and fighting!! She has went day and a half no blood pressure meds fever staying at 99 she has 3600 white blood cells she has a 1248 anc which means she now has cells that can help her body fight the infection..she is moving her eyebrows shaking her head flaring her nose and coughed. ..her lungs are still bad but they do have ventilator turned down to 4 0 and she is fighting machine and breathing on her own.. her sisters and dad and close friends all got to see it but the best was her baby sister Rylee Ruth squealing SHE IS DOING IT....today we cry tears of joy and high fives around the whole icu unit...Lulu is a fighter



Lulu Ysarua Martinez had rough night oxygen kept dropping changed ventilator to normal breathe pattern which she needs to be on she has had no other movement so they moving her down for mri...doctors are concerned we are seeing reflexes and not movement.she has been off sedatives for 3 days...
Ugg.....3.steps forward and 2 back will post after mri


Who knows.  It is just what it is.  This fighting cancer thing is so hard. But then maybe life is schizophrenic for a reason. 

Every day, every moment, we have to keep focused on what is important in our lives.  Keep in the front of our minds the important persons we love and value. 

Life changes. Stuff is just stuff. Connections with people is what is important. 

Just saying. It is the little dots and squiggles that make our life whole.  

Only positive news about Lulu....

Lulu is moving..... update more later!!!!!!!

Keeping the candles lit....
always..... 

No News, Nothing to Report on Lulu....

Hopefully this is a quiet healing time. Hopefully it is a time for family and friends and Lulu's peeps to visit.  

Hospital Week-ends can be very quiet.  Sometimes there are so many people trying to do stuff, the quiet healing time was lost. 

A time to catch up on sleep and reflection. The best part are the nurses.  These are the "I love to work on Week-ends and have the rest of week off" Nurses.  They are full of vim and vigor.  

Because it is more quiet, they have a different energy about them.  

Hoping for only good things for Lulu and her family .

Hoping Status Quo is a good thing...

Meb is still working on getting better.  I am watching a very difficult recovery, even though it is a cold.  Like last time, it takes extra time for her to get better. 

Considering how much Lulu has been through, high fever, strep, full lungs, collapsed lungs, blown pupils, unhappy kidneys.  It is hard to know how her recover will transpire.   Very very slowly I am sure.  

Hoping today is a day of explosive ANC activity.

Lulu is still the same....pupils are responding but no body movement....her baby sister Rylee  and Payton have been by her side today...they have been talking and joking and crying out to their sister to give them a sign a flicker anything to show them she is there. This was hard to watch and hear...sisters fight...sisters bicker...sisters irritate the crap out of each other...today was humbling...sisters begging for their sister to survive to fight to live another day to go shopping.. fishing...and to braid their hair...they are here lulu waiting for you. ..give them a flicker...

Hoping

 for lots of rest and some stability for Ms. Lulu.  

Fault is in our Star? or how did it come to this....

WE all choose the movies we want to watch.  There is a certain number of movies that fall into "have" to watch.  Then there are the "I can't stand to watch" group. 

I have always been an avid yet timid in my choices.  I went to see the Exorcist when it first came out but I read the book first.  I saw Jurassic Park, again only after seeing the book.  I have seen 2001 a Space Odyssey a couple of times and made Bill Nary watch it.  He complained that it last 2001 years. I have never seen Schindler's List not The Boy in the Striped Pajamas.  Several movies have gone unseen because of all the violence.  Just can't do it. 

Only way I can make it through Game of Thrones is that I have read and loved the books and know when the horse heart eating scene is coming. 

So, huge new movie based on a book about pediatric/young adult cancer kids being in love and dying.  Not sure I can do it.  Several of my friends think it could be cathartic.  The old "this is not your life but someone elss's"   I know it is make believe and the cancer is sort of weird and not very accurate.  Especially about the Sarcoma kid.  I know who dies in the end.  

I just can't quite bring myself to watch it. Now my friend Darlis has read it, Jai has seen it. Tracy told me not to read it. I have this urge to take myself off to a theater by myself with a box of Kleenex but maybe later.   

I already know kids die of cancer do I need to it.... 

Maybe on a day I feel less effected by it all.  Meb is fighting a pretty nasty cold and feeling lousy.  I will use it as an excuse to stay close and fight the urge to pay to see sadness. 

Anyway I just finished a bread making class at an Italian restaurant and I need to track down .00 flour.  Not sure what it is but it makes the best Pizza Dough. They I need a baking stone and something called a couche? and then I need a dough cutting knife and then I need....

Maybe I should just go to the movie and buy the bread.  This is Ciabatta bread.  Means slipper in Italian.  It is supposed to have holes in it and they are called eyes...  More the better.  Who knew?

Slightly Different

McDonalds is everywhere.
Gas is really cheap as you drive East. 
Food is really cheap as you drive East.
There are not real veggies in the middle of the country.  Most of the time I thought I was eating in Seattle Children's Hospital Cafeteria.

Here is an example of a Low Fat Healthy Choice:

There are lots of things to buy.  Fudge is ubiquitous.  Good Coffee is not. 

Barns in Illinois are different than in Iowa.  Iowa barns had quilt squares on them.  Illinois had weird barns. 

Trucks drive differently in each state.  Hate Kansas and Ohio and Missouri, they don't have to stay on the right except for passing and they are really trying to get somewhere.  So you don't have any idea when they are going to jump out and cause trouble. 

Back to coffee.  OMG.  Nothing. The entire state of South Dakota has not Starbucks (my least favorite).  I did find that if you go into a McDonalds in Missouri and ask for just shots, nothing else, it is almost drinkable.  That is how far I slipped.  

Dogs in Missouri are better behaved than in Seattle. 

Missouri smells like freshly turned dirt and Kansas smells like

Syringa.

Donuts are everywhere. People eat them and are not ashamed. 

We went on a big adventure but like most of life it was made up of very small things of great wonder.  We took time to observe.  

Still looking for  Moose, a funnel cloud and a White Castle Burger.  

Sometimes Dreams come true we are waiting for the the next bit of great news.

WE had an appointment today. Things are so good we don't have to go back for 28 days.  A month, 2 fortnights,40,320 minutes. So what great news!  Now we have to call if she something comes up. So we have to watch for spots and bumps and other things that cause worry.  Pimples, weird food craving, sudden growth of purple and pink hair, a desire to clean the basement.. that sort of thing.  Mostly we have finally reached the point most people reach on day 100.  I will take it.  I will make sure we enjoy every one of these 28 days. 

My focus is shifting to help mom work on moving to the Senior Dorm and recovering from impending hip surgery.  She is a tough bird and we all expect her recover to "exceed expectations" I also am aware there are huge risks in any operation.  Mom is very clear on her wishes and she is going to be fine.  That is my story and I am sticking with it.  I also always have an uneasy feeling in my gut about the whole thing.  I know too much.  She will be fine. It will be fine. Fine I say, Find I say.

It is good.  We were able to see Kaylin today. She is in love with Justin Beiber and he met with her when he was here.  It made her really really happy but what made me happy today was to see her walk into the hospital. Since September 2011, I had never seen her out of one of those large jogging strollers. We saw her today and it was wonderful. 

 You would not recognize her.  She is coming off prednisone and her face is going back to normal but best of all her hair is getting really really long.  What a great gift.

 

So now we wait for the results on Alistair.  She is a special little friend of ours we hold in our hearts and squeeze with all our power.  This is a much loved little girl and her relapse was so so awful for everyone.  When I told M-E she went completely silent.  She went to her dark and quiet place.  It took a while for her to return.  When she did we delivered a Bitty Baby.  Nothing more we could do but pray but always good to have a distraction while waiting.   We visited for a few minutes today and are waiting to hear she is in an acceptable kind of remission for a transplant.  Her cancer (AML) is particularly uncooperative sometimes.  It does not like being poked and prodded. But transplant is the only option and there has to be a bit of a miracle for that to happen. 

 

I thing we are due for a few Miracles.  I need one for her.  

 

 

   


  

Long Drives and Short Stops

Went on a quick jaunt over the mountains, through the high desert, through the winter wheat fields to Spokane. 

Watched Samuel Page become an Esquire.  He has only the "bar" to jump over and then he is off to work on his life as a lawyer. 

Gonzaga does it right.  Lots of good speakers, some  nice bag pipes and a president that looked a bit like Dracula but then maybe that was what he was going for with a bunch of new lawyer wannabes as his main audience.

Mary-E was able to catch up with a couple of her friends. One friend graduated, another will be there next year.  Spent some time with Father Housman.  He took us on as a special project during her transplant.  He some memory issues but eventually makes the connection and then becomes totally present for us.  He had a stroke 5 years ago and taught himself to walk and talk and all the rest.  He will be a good guy for her to have around.  He walked us out and then began to walk like a bat out of hell.  I think ME nailed it when she said, he taught himself how to walk and is like a toddler, he has one speed.

It was a good way to begin to grasp the real possibility of returning her to school.  She is willing to leave the Children's Hospital bubble and feel better about it.  Little connections to what she knows and remembers.  Leaving happened so fast.  Hopefully re-entry will happen with a bit more control and organization.

We have been on the world's longest road trip.  Time for it to come to an end.  Tires are good. Oil has been changed. Car will be washed.  Three months.  We will do the trip again and when we do it will be to end Cancer Part II.  Need to figure out something spectacular to celebrate, other then a Blizzard at Dairy Queen in CleElum.

Not knowing what to pray for......

I have a book that I love.  "Our Lady of the Lost and Found" It was written by a Canadian Author with a great sense of humor.  She is having a good week and low and behold Mary shows up with a small suitcase, Nike's and a trench coat (blue of course).

It is almost May and she needs a rest.  During the course of the discussions with her host there is a lot of talk about prayer and the requests.  It is both a thought provoking and funny book. 

Cancer Mom's like Mary a lot.  She watched her son grow and then die.  She felt the agony of not being able to do anything to stop it or to make it better. 

Michelangelo's Pieta in the Vatican is one of the most powerful pieces of marble I have ever seen.  It saddens me that it is behind glass because some man took a hammer to it.  I was lucky enough to be at the Vatican several times and just stood at the bottom, holding the foot of Jesus and looking up at Mary.  Such a calm resigned look.  Not sad or distraught but a mom's face as she holds her child for the last time. 

I know, that the face did not match the feelings behind it.  But those of us that have faced the potential loss of our child know that if everyone knew what was going on behind "the your so calm" look, the world would spin off it's axis and then upside down and we would all just float off into the Universe.

That being said, we do pray a lot.  We pray for high numbers, we pray for low numbers, we pray for 10 match bone marrow donors, we pray for remission, we pray for no relapse, we pray for engraftment, we pray for one cord to fade away, we pray for a little GVHD, we pray for the GVHD to go away... We don't really know what we are doing.

I don't think any of this illness or suffering of our children is part of a grand master plan.  God did not break Mary-E twice.  This is not some grand plan to see how many needle points I can finish.  It is not some huge test I have to pass. Now, that being said.  My ongoing conversations with God, the universe, Mary, the Ganesha, Navajo healing ceremony Buddha, the katsuras in my front yard have helped me survive this process.  I know we have no control, we have no way to know what is going to happen.  We have to survive every single day in the best way possible and only deal with what we face this moment and the next.

I find I can handle it better if I have a sounding board.  Boy there is not a church within 15 miles with a candle left unburned.  I need to know I have sent my thoughts and prayer somewhere so I can focus on this point in time.

Only prayers today are to just get through this week with the ability to pick my sister up from the airport next Tuesday. 

Lust....? Really. End of first Month when you lust after normal!! Dante must have been a Repulbican.

Second Circle (Lust)

Gianciotto Discovers Paolo and Francesca by Jean Auguste Dominique Ingres

In the second circle of Hell are those overcome by lust. Dante condemns these "carnal malefactors"^[9] for letting their appetites sway their reason. They are the first ones to be truly punished in Hell. These souls are blown back and forth by the terrible winds of a violent storm, without rest. This symbolizes the power of lust to blow one about needlessly and aimlessly.


Lust.  I really think we have to re-thinking this.  Of all the things in the world, this is the second level. 

"Carnal Malefactors"  have to love those words.  How can you not.  But I am afraid part of this does apply.  Every parent in the world has felt the punishment, even if they didn't deserve it.

These souls are blown back and forth by the terrible winds of a violent storm, without rest.

Boy if that does not feel like our lives.  Some days there is just no relief.  And when you feel like you have escaped another gust comes again and batters you even worse. 

We have had one of those weeks.  It all resolved around food in one way or another.  

So ME is on several drugs that make her kidneys stupid.  She "wastes" magnesium.  So to fix that hole in the dike, she takes 1200 milligrams of the stuff and eats lots of popcorn and dark chocolate.  It also makes her very cautious about the amount of fiber she eats because it causes some very undesirable side-effects.  I am buying white bread for the first time since 1883.

She is going to be put on Rat Poison.  Warforin.  Lovely drug but it will let her body heal from all the shots and gigantic, continent size bruises.  No shots, that is good.  BUT the levels have to be steady.  Rat Poison inhibits Vitamin K which is made in your stomach.  So there are things you cann't eat like spinach and all other green leafy veggies.  Cranberry juice, avocado and soy lots of other things.  She can eat all those things but has to do so in the same amounts each day.  If she gets sick or more active that changes things.  She has to have a finger poke every three day until the levels are figured. 

Then one of her drugs has made her triglycerides go way way, sludge for blood, high.  So what should she eat to help with that:  Fruits Veggies, lots of greens, low carb, non-fat dairy.... Well lets see all the stuff you can eat here are eliminated by Rat Poison and Magnesium....

It is pretty much Brown Rice and Salmon, three leaves of spinach and some green tea, in regular measured amounts.

"What about pizza?"  Can you make it yourself with low fat ham and some non-fat cheese?
Oh, did I mention, low carb....

It was too much tormenting windy gales for one day.  She just went to bed and cried. 

"Mom, I do everything right.  I take my meds, I follow all, well most of the rules and now this.  I am afraid to eat anything!"

Pancakes, no butter, no bacon for breakfast.  I won't talk about dinner.

She feels under attack.  We will spend a bit of time working on finding out what works...  French bread has no fiber.  Salmon is wonderful.  A bit of white rice won't kill her. 

On a better note, no asteroid hit the earth.  That would have ruined our day.

Sometimes things just GO

It's not right or wrong, it just is.  All day, we spent all day at the clinic.  No way around it, and someone asked if spent a lot of time waiting and we really did not.

In at 10:30:  Back into a room.
Heat the child
Look for vein that wants to cooperate
Look some more for a vein that wants to be invaded.
Look again.
Look yet again.
Find the vein, Mom looks away.

I want her to have a port put in because I cann't stand the pokes but then I don't think that is a reasonable request.

IVIG, 138 minutes plus a flush or two.

Then a doctor appointment.  Never were we bored or kept waiting, not really.  It just is how the day goes.

I am practicing the "nature, time and patience" chant a lot.

I spoke to Michael Reinfelt today.  His daughter had a transplant many moons ago.  He and Susan came to visit us during transplant.  He told me it took about 4 years before life really settled down. 

I guess we have a bit of a way to go.  I can do this.  She can do this.  Sometimes I just assume this is going to over and done.  We have had no big set backs, no big serious issues, no ICU, no drilling of bones to stimulate growth. 

WE can do this, we can do this, we can do this.  Said three times while twirling around.

Now if I could just figure out why I have the urge to buy wine and make Muffalletta sandwiches.

Cancer World is hard to understand.

We are here.  We are still your friends. We don't call you back. We can't write a thank-you card.  We certainly can't schedule anything.  We are here.  We know you are there. You have helped us all so so much.  Calls notes, offers to stay with the child. Errands, money, coffee cards, groceries, meals, hugs, open ended offers of help.  Prayers, novenas, more prayers, chains of prayers, the list is endless.  We know you are there while we are in this box, in this tiny space with a very very small part of the population. 

We worry in ways you don't. We fuss about things that you have never heard about. 
We talk a different language.  We have different acronyms and lots of weird stuff in our car and in our purses and in our homes.  Some of us have more than one home and Ronald McDonald means a completely different thing to us than to you.

We are sad about different things.  We look at our children and your children.  They have all had there struggles and challenges.  Ours have a certain flavor. You never had to see our child pull out handfuls and brushfuls of hair.  You never had to tell you lovely daughter she could not go to her first dance with her best friend that came from Chicago to visit because her "counts" were too low.  You never watched your daughter secretly die in bits and pieces as her friends go back to college while she monitors her blood sugar and worries about every surface she touches.  You never had to try and explain to her why her friends don't want to visit or come by or take her somewhere "safe".  You understand how hard it is for them to have a friend that has had cancer not only once but twice.  She does not understand why they are afraid, reluctant.  

But, we are still here.  She is at home. She has only been back in the hospital twice.  She is not like Mario in ICU bleeding from her lungs  while having her life supported by a respirator.  She has never been in the ICU.  I can't imagine what Mario's parents are doing right now. 

Mario, Luis, and Mary-Elizabeth had double cord blood transplants with-in days of each other.  They are 18-20, they all had relapsed ALL, they are Hispanic. They have lovely parents and Luis's grandmother makes killer mole'. We have all spent time together, complaining, crying, laughing and learning how to live in Cancer World for the second time.  It is so worrisome when one of the kids is sick.

 I guess being in Cancer World means there are no boundaries between your personal pain and that of all the parents and kids. 

Can you tell that I spent too much time at the hospital today. I had to vent.  91degrees makes me grumpy. 

This was my fortune cookie yesterday.

First Time in a million years.

That I am not buying school supplies, uniforms, locker stuff, dorm supplies.  It seems so so weird.

I had always wanted Mary-Elizabeth to take a year off from school.  Never two and never for cancer.  I saw exotic road trips with her friends visiting the world's largest ball of string, volunteering in Ecuador building wells and cementing her Spanish.  I saw a year abroad doing some sort of weird research.

I never saw this coming. 

I really have nothing to complain about.  She is up, she is around, she has only been back at Seattle Children's eating Chef Walter's award winning food twice since March.  She is half way through the transplant year, she did not die from the blood clot.... the list goes on. 

What really sucks is that I spend so much of my energy finding the silver lining to all of this.  I have the opportunity to "grow a deeper faith".  To learn lessons in receiving instead of giving. To find happiness in the small moments when cancer seems far away.  To take this time to find a new path into my new future. Okay I am done complaining and whinning.  I just have to some times.

I am lucky.  She is blessed. We are fortunate to live in such a time when a double cord blood was available.  I am truly blessed and oh so grateful. 

There are just times that I don't want to have to be so grateful.  I just want to buy a matching rug and garbage can and small consentrated laundry soap and cute dishes and perfect knives and markers and post-it notes and all the things that we do before school starts.

Go figure.  I am sure that if I look back to posts a year ago I would see much complaining about such things.

Enough, time to focus on attending my 40th class reunion and really looking back.  40th, from the group that  never trusted anyone over 30.  Should be interesting. 

She has escaped but I did not....

She is out, She is out, She is out.  She has escaped the horror that now surrounds each and every blood draw. Her bruises are solid PURPLE. She is giving herself two more shots a day.  Each shot = a bruise.  It is nuts.  I look at her bruises, and scars and the stretch marks from the prednisone.  It makes me so sad.

With each admission and each time the process becomes more complicated and hurtful and frustrating: she cries, she is sad and then we move on.   Today she needed to get out today so she could go to the Ruby Project class and do some printing.  Photography is a great thing for her right now. Great Distraction.

I, on the other hand had challenges and a couple fun things today.

 Did not sleep in;
Did arrive just as the donut lady was serving to the  SCCA floor;
Had coffee with Amber and Karen;
Missed rounds;
Met some new people with a 9 month old ALL baby, let broken heart heal;
Tried to take a nap but then quicker then you could say "Discharge"they were pushing us out the door; 
Dropped Mary-E at the house and headed for my root canal appointment;
Found a great parking place;
Was on time and there was very little paper-work;
Met with the nice doctor;
Could not convince her that a hand full of pain meds and time would make the excrusiating pain in my tooth go away;

OMG. 

Never go to the Root Canal lady without a fully charged I-Pod.  They drill and dig and then start again. Then they dig some more.  I never thought it would end. 

And when it did, it was a lie.  I am expected back for one, maybe two more chances for drilling and digging and ......

I will have a book loaded on my I-Phone, it will be charged and I will have really fabulous earphones. 

My ordeal will be over in a few weeks.  She is not so lucky.  Headphones fix my situation.  I wish  I could find the magic ones that would fix her.

  

We're Back in the Hospital Again, We're Back in the Hospital Again....

Should be sung to an old country western tune.

But I had such a great time in LA with my family and with the weather and with the rental car.  It was grand.  Dinosaurs, Saber Tooth Cats, (no tigers, they are different), Van Gough, Nixon, Melrose, Compton, Norma's Restaurant, Kindle Donuts, Nigerian Delegation, Quiet Spoken United Pilot that did not understand how we could let the Japanese have the first 787 and not an American Airline, Sabine and Stephan from Munich.  It was wonderful.

Wonderful ends and reality begins.

Above the cute toes, a swollen leg.  Clots in legs cause swelling.

She was complaining when I came home.  I looked, I assessed, we went to dinner.  Then we called Dr. Fassett and then we went to the hospital and then she had an ultrasound and then she was admitted and then.....blood drawn, lovanox (yet two more shots a day).

Lots of blood draws, blood clotting  before it can be tested....

Cancer is creative.  I have to adjust my thinking.  I have a six month old baby.  As baby's grow, they are unpredictable.  They grow and change and just as you have it all figured out, they change again.  I am 6 months through this process.  I should not be surprised when there are new developments.

Okay, I can't fix this situation.  So I shall concentrate my efforts on identifying the warbler I saw by Nixon's birthplace.

GVH WARs Part II

WE went to see Dr. Paul Carpenter again at the SCCA. He is the doc from Australia that eats kangaroo. (yet again another story for another day)  He was our attending when she first started to have Gut GVH.  He put her on a course of steroids and the like.  As we so politely pointed out yesterday:  You did not fix her!

I explained that I really did not want to return to Children’s for another round of Chef Walter food and days of Dark Shadows watching. 

So here is the plan:  She now is being tapered in a very different way.  She is going to be taking Pred on one day, HydroCortoson on the next day. She is going to taper off the icky corn oil stuff and the noisy pink pills and then try to get off the Pred.  Or something like that. 

It appears to be pretty endless but then it was pointed out to me we signed on for a year. Not six months.  Not 9 months but for a year.  I was questioned about what I was doing and whether or not I was home being care taker.  I did not mention I had abandoned my child for 6 days.

So we wait, we see, we wait some more.

It made me so so glad to know the Dr. Paul does have a beautiful Crystal ball that he consults on a fairly regular basis.  He did say it appears to be cloudy most of the time. 

We can wait, half way there. 

So What are you doing now...

When did you get admitted for the transplant?  January 16th

When was the transplant?    January 24^th

When did you leave the hospital March 20^th.

When was day 100?  May 4th

When did you go back to Children’s? May 16th

So now what?

GVH WARSSSSSS

Graft Vs. Host /New Cells are working –yeah.  They don’t recognize their new body-boo

This is a very weird space.  Here we sit.  The line is gone so things like swimming are possible.  (Only in the deep end, only when kids are not in the pool, only, only, only…..)

This is about the time everyone sort of thinks life should return to normal.  It feels like it should.  It feels like there are not big goals and accomplishments and on-line classes, returning to work, big trips, back to the real world.  I think both of us feel like that should be the case but there is this big cloud.  The GvH cloud that seems to be hovering.  It is like we are stuck between floors and there is no one on the other end of the line. They will be there soon, but not now.

Mid-August she completes her Prednisone taper.  We hold our breath, a collective breath holding.  Did it work?  Will the GVH come back?  Will the new cells have learned to love the new body? Will it be time to really see and start to taper off the tacrolimus?  Lots of questions and no way to know the answer. 

So the answer to “So what are you doing?”  is waiting, watching, preparing, staying close to home.  Wondering, hoping, dreaming, investigating, sorting, purging, quilting, jamming, gardening, even reading.  Half-way through.  

If it is not one thing......

So I have been thinking we could explore some time away from the hospital.  Maybe we could figure out some time that was not infringed on by a clinic appointment, a dressing change, drugs that need to be picked up, maybe we could just go, and be done for a week.

Silly Silly Sally.  We went to clinic yesterday and it was looking grand.  The line let loose of the blood required for labs.  The weird bumps were just dry skin.  The cold will just be here for a while, Ellie Mae is making attempts and it has not become pneumonia so every on is thrilled.  The "bleeding" happened in record time.  So we walked out and had until Friday ahead of us. 

I decided that since I had been so so worried about the line and the everything I would just take the day and do only the things I wanted to do.

That last 2.7 hours.  When will I learn not to answer the phone.  When...... her levels are not right.

Back today or tomorrow for a bag of IVIG. Her immunoglogbluin is way low so she needs an infusion.  Her tacrolimus is high and her head re-affirmed that this morning.  

 See even Lucy is miffed.

I guess I have to reach back into my memories of her first few weeks.  Her new immune system is must shy of four months old and it is not ready to sleep all night.  It is impossible to put the baby to bed and watch a whole movie or drink a hot cup of coffee.  I better go take a shower while the baby is sleeping and do a load of laundry.