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. 




   

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. 

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.

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.