Level Three..... gluttons: First Treatment Way too much Chemo

The "great worm" Cerberus guards the gluttons, forced to lie in a vile slush produced by ceaseless

 foul, icy rain.   Just as lust has revealed its true nature in the winds of the previous circle, here the 

slush reveals the true nature of overindulgence in food and drink, but also other kinds of addiction.


Yes, been here.  Felt the foul, icy rain, the mud.

It all becomes way too much and one feels trapped under the paper, the internet research, the meetings and conferences the Waiting.  works, the endless blood tests, the endless..... shot, pill, procedures..

There are time we get to escape but sometimes it seem and is endless.  

There is so much about having a kid with cancer that we don't really understand and maybe go over board on things.  

We all have our "cause".  I am about the bad food service to the children at Seattle Children's Hospital.  Some are about the fact their child only has home tutoring for 18 weeks but cannot be in school and so she looses a year of school.  Some are bound and determined to remind those that park in the parking lot, they are a huge gigantic mega truck and not a  compact.

I have to admit to drinking way too much coffee.  It might have been a way for me to give myself some time away from the room where unspeakable, horrible things were being done to my child. 

We all have addictions.  Overzealous obsessions besides Purell and over cooked food.  

I have cut back on coffee.  I think it is a start on the way to escaping the icy rain and slimy.

Wonder what the Pope did?   

Happy Birthday Mary-Elizabeth PearlAnneEllieMae Sierra Lanham

You are almost a year old.  The transplant was at 3:00 pm so let's not jump the gun.  

I don't quite know what to say.  I am sure you don't either.  I wasn't too interested in transplant day.  I was much more interested in Day 18 when cells showed up.  Trust me the days between 1 and 18 were pretty horrific.  

You were one miserable child and for good reason.  
Everything was an effort.  
Everything was difficult.  
Everyone hovered, a lot.
Everyone wanted to poke and prod.
Everyone wanted to weigh in on how you were doing.

You did it.  You invited PearlAnnEllieMae in and made them feel at home.  They are still being bothersome but that is how toddlers react to the world. 

A year. 365 days.  It took only 40 weeks to bring you into this world.  I can say this process was much more difficult and trying. I am expecting much better behavior this next year. 

Love you. Cherish you. 

I am so glad you are still here, even though you are going to become a toddler and get into everything. 




   

I Sat By a Guy named Brad

On the way back from New York.  He was coming here for Christmas.  He was from Southern California.

He had lived in Seattle for a number of years.  He owns a company, lives in Berlin and while at the University of Washington came down with Lymphoma.  While he could have been treated at Children's  he was at the  University and when the big merger happened under the SCCA.  

When he asked why Mary-E did not have a Port, I knew he was one of us or had someone in his life that was from Cancer World.  We had a very long talk.  I was most interested in how his life was now.  What he had experiences over the past few years.  You know I asked him a million questions. 

Brad told me it took him almost 5 years to really feel good again. He counted each and every day a good one when he woke up and had energy.  He has crafted a life for himself that works.  He travels  a lot.  He spent time with friends and family and lived in a place he fell in love with, Berlin.  

I don't know if I let him know how much our visit lifted my spirits.  We spend so much time in Cancer World managing a the crisis d'jour that it is hard to see 5 years down the road, let alone 10.  

I know Mary-E was almost 5 years out when she relapsed so we should have been pretty darn happy.  But you, know, she never felt like survivor.  She always hated that word and relapse was the word that cast the biggest shadow.

Thanks Mr. Brad. 

Might be time to Trust in Health Again.

Cancer World Mom's are a suspicious group.  We are pretty hardened by the various things that have befallen us over the years.  The disappointment and sadness when our children are sad about not being able to swim or go to school or have ice cream because they have that disgusting water reservoir they use to hold the scoops.  Unexpected fevers, side affects caused by medicatoin given for a side affect, a child that gives herselve 7 shots a day, a ANC that is 195 and keeps you in the hospital. 

You are always on guard.  Never a moment of true restorative relaxation.

Do you wash your lettuce?
Do  you wash your hands after using the bathroom (at least one server at Portage Bay does not)?
How long has that roasted chicken been in the box?
Is that Feta? and has it been cooked to 160 degrees?
Are you feeling all right?
How is that ankle, finger, bump on your abdomen, weird tingling feeling over your left eye?

I expect that I should be able to just step back on to the fast track again. I want this to be something that is behind us. I don't want to be in this weird space.  What I am forgetting is that it took several years to begin to believe things were all right and we had a pass to rejoin our life. 
 
"Things are great"was taken away a  year ago.  A phone call, a few frantic calls to try and make the fear and doubt subside and then the  sick, horrible realization it was BACK.

Now I seem to be caught in the whirlpool of doubt and fear and anxiety.  Each time I have stepped out and tried to get back on track, something has happened.  Short trips have resulted in hospitalizations. Scheduled lunches, headaches came.  Planned adventures and a schedular calls to change the date or time or cancel or set a new appointment.     I have just now started to put somethings on the calendar.  Even when I do, I never ever trust I will be able to follow through.

As Mom's we believe that if we are not here and on top of every single moment, there will be a disaster.

I am very good at not being a dreaded helicopter mom.  Mary-Elizabeth spent months in Mexico with her Grandma starting when she was 3.  She flew home by herself when she was 5.  She took the bus from school to Downtown on the #10 when she was in 5th grade. She was not over mothered by any means. In fact many thought I was very careless in my care of her. 

So as she sits and works endlessly on her two classes, I have to let-go and learn to trust again.  I need to find a job.  I need to really start to pay attention to me. I need to trust I will have my daughter back, to stay. 

Maybe if I chant "she is going to be okay"  a thousand times a day, it will happen. 

Here is to learning to trust again that"she is going to be okay". 

"she is going to be okay"
"she is going to be okay"
"she is going to be okay"
"she is going to be okay"
"she is going to be okay"
"she is going to be okay"

Loving Gonzaga today.

She is sort of going back to school. 

Because her immune system is so compromised  and she had no immunizations because she can't have them because she is taking something to keep her immune system compromised.....  see what I have to live with everyday.

She can't go to school in a classroom.   So everyone says, "Can't she take on-line classes?

Oh yes she can but college is not on-line classes. It is planning dinners for the neighbors, watching Big Bang and eating pizza with the boys.  It is late night study sessions that turn into tired hysterical laughing sessions.  It is trying to wake up your roommate for a class or going to a movie or bra shopping.  It is so much more than going on-line.

The biggest obstacle has been her course of study.  She is in the Engineering Management program.  Classes have to be taken in a certain order. 

Yesterday she heard from her advisor. They are working on developing a way for her to take her circuits classes on-line.  She was hesitant but was so happy once those fears were overtaken by excitement.  She also found one of her really good camp friends is going to be attending SPU and won't be "leaving" for college.  Anne has a car, loves Mary-E and there will be a chance for some of the very necessary social pieces of college.  Sort of.

At this point we love Sort of..... We totally love Gonzaga.

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. 

We Missed Elli Mae's 5th Month Birthday.

I don't quite get the "new birthday" thing.   Some parents  have cake and ice cream and celebrate every year. We are not that family.  There will be a celebration of sorts on January 24, 2013 but that is more of a

"Get out of Jail" sort of thing but then there are still some parol issues. I wonder when we will really be done.  

Six months brings a bit more freedom but there are still lots of "NO's"  This last admission for GVH sort of took my by surprise and deflated my "We are Rock Stars" attitude.

I am trying to be brave and optomistic and have planned a couple of short get-aways for myself but am also preparing myself for the need to cancell them.  I just hate the Uncertainy and may have to go to the Space Supply Store and buy some Certainty.

Fred told me before this process began that they would give Mary-Elizabeth her a chance to have her life back but we would not be returning to the same life. I told him we really wanted the long term insurance policy.

Every time we do something I realize how much has happened to her. Her body is so beat up.  Time will heal the scars, the holes, the marks.  She will become stronger and more active.  She will do more than wait for her friends to call and will call them.  She will get back into some sort of school before she returns to finish at Gonzaga.  It just takes time. 

It has been 5 months since transplant, 10 months since relapse, 7 months to go to year one. 

We can do this.  Now we need to get ready for the "real" birthday party.  4th of July the dogs go on the grill....

Bright Moments in Gray Days

Grey or is it Gray skies.  Rain, dripping.  Dogs sleeping. Child Sleeping. We are done doing errands today. 

Up at 5:00 a.m.
Out of the house by 6:00 a.m.
Off to Hospital for the "Line Pull".

Yes, they put her to sleep, and every so gently but ever so firmly remove the double Hickman from her body.  The one that has transported blood, platletts, IVIG, chemo therapy, fluides, more drugs then I can list, pain meds, anti-everything meds. 

The Line has been less willing to give up some of it's precisous fluids lately. It was more willing to receive than to reliquishe.  Since it is such a risk for infection the decission  was made to have it leave the building.

I was not in favor of it but she was so so ready to have it go.  She is in charge.  She has to have the IV's if necessary and blood draws.  I will not say a thing...

 Okay maybe one I told you so but not for now.  For now I will let her sleep off the side affects of the sleepy medicine.  I will get a couple of things done while it is quiet.

Oh, while she was recovering, I was conspiring with the secret committe to over take the caffiteria and food service.  I love a good conspiracy.

They are going to use some of their toys today.

A small camera is going down her throat and into her stomach.   It is sort of an adult video game. They will a biopsy and some more cultures and then the decisions will be made.

They are looking for GVHD.  The girls have to be slapped down a bit.

Let me look into my Crystal Ball:  More prednisone, more beclamethosone.  More puffy hurty cheeks, more sleepless nights, more.......

When they said that this was a year, they meant it.  I am thinking we get to go home on Thursday. 

On the fun and cool side.  I am getting to educate lots of people about a long forgotten place, high on the hill, a place of ghosties and crazies and long pregnant silences... WOOOOOO,. Wooooooo, Woooooo. We have been watching endless BB episodes of Dark Shadows.  (Before Barnabas)  Sort of fun. 

We are also going to put together a visual for Chef Walter.  Maybe he can learn what a sandwich is if we send him a picture or make it a game. The game might be:  Find the Real Food.

Walter claims to be a member and supporter of the local food movement.  I love fruit that is grown in China, shipped to Thailand to be packed and then shipped to Seattle. 

How cool is that. We will play, find the real food with some fruit tomorrow. 

Dear Ellie Mae and Pearl Anne's Moms

I wonder if you remember filling out another piece of paper work after your darling girls were born.  I wonder if you ever think about your donation.  I often wonder you wonder about where the blood went.  It might be like donating blood.  The donor is thinking about a pin or a cookie.  The ultimate recipient is not on your mind.

As I sit here on Mother's Day marveling that I am still a Mom, I so want to thank you.  The only reason I am a Mom on May 13, 2012 is because of your gift.  Your forethought to give up the cells that lived in the cord between you and your daughter.  You nurtured and fed and loved your baby before she was born. When it was time to continue your journey outside of your body, you handed off that nurturing bunch of cell someone else.  Your nurturing and life giving continued.  I hope you find out someday what a difference this small act made.

I guess you have to think about it like a 2fer.  You gave birth to your daughters and passed that life on to mine. Those two little bags restored the life of my daughter.

I would love to send you a letter and some Fran's Chocolates and try someway to explain how grateful I am for the fact Mary-Elizabeth was here to bake shortbread and make a beautiful card.

 As you know the Mom club is a very special place. Membership is only granted to some lucky few.  Motherhood changes your life in a way that can not be explained.  Your life is never the same, it is hard, it is heartbreaking, it is simply painful.  But few would ever return to TBB (time before baby).  It takes years to realize the job is a life time job. A job that morphs every day.  Some times it keeping close, sometimes it is to stay away.  The job is to figure out when to do which.

While other's disagree, I have always felt that if your progeny are gone then you loose  your magic ring.   I don't think anyone would come ask for your gray hair back but it is inferred. I have faced lose not once but twice.  To have twice had to face the possibility has made me a bit hesitant to take anything for granted. It has made me more clingy and less concerned about somethings.  It has refocused me like a small child trying to incinerate a bug on the sidewalk with a magnifying glass.  But more than that, it has made so so grateful that the bug killers have such great giant magnifying equipment.

I can only hope and pray and beg the gods that your journey has been smooth.  That on this day where Mom's are brunched and coffeed and carded and flowered and ..... you are enjoying your lovely daughters as much as I have enjoyed and hope to enjoy mine. 

We are sort of related now and I hope to meet someday at a family reunion.

Love, Mary-Elizabeth Sierra Lanham's very grateful, thankful and blessed mom.