Make A Difference!

Take two minutes to make a difference - you may have heard that several cancer fighting drugs are in short supply. Georgia received three chemotherapies that are on the shortage list, I cannot imagine being told that the drugs she needed existed but we couldn't get them.. families are starting to hear this message.
From ABC news: "Limited manufacturing, lagging production time, and lack of profits from these drugs contribute to the shortages. The production costs for some drugs can outweigh the money that companies can make from them, since many drugs now have cheaper generic alternatives. So manufacturers stop making the drugs."

We have several friends that still need these chemotherapies to complete treatment or keep their leukemia under control.  The folks at Children's hospital are encouraging people to "write their senators and encourage these older (non-sexy, not making lots of money for drug companies) but very effective drugs to still be made."

I found out last week that IV morphine is on the shortage list, there is a little girl who was recently sent home to die and she can't get IV morphine, she instead was given an oral dose that is less effective. 


Do this, it will make a difference.

http://www.lls.org/waystohelp/advocate/

Thirteen Months Post Transplant and 2 1/4 years old

Georgia, you are growing and changing so much everyday, you continue to amaze me with all that you observe, take in and remember.  We were flipping though a magazine the other day and you saw a picture of Emril dressed in a white chefs coat - you pointed, looked at me and asked, "poke?"  I am working to try to help you understand that not everyone in a white coat "pokes" people.  Over the last month (+) I have seen genuine concern from you for other kids.  We have a nightly ritual of looking at the computer together as you take your least favorite meds that are mixed in food, we look at pictures and videos of friends and family.  Several weeks ago you were very out of sorts after we were done, I leaned down and said "honey, what's wrong?".. you burst into tears saying "baby no poke"... all you'd seen was a picture of a newborn baby, but he was held by his mom who was sitting in a hospital bed.  We talked about it and I assured you that the baby didn't get a poke but several days later you melted down again saying "baby no poke."  I had to remind myself that kids think the whole world revolves around them, why would you think other kids would have any different experience than you've had?  This broke my heart and reminded me that you are such a loving sensitive girl.  Since then I have chosen to avoid any hospital pictures and instead look at pictures of our friends who have not spent time in the hospital, I want you to know that's where you are headed.
Your language continues to take off, my most favorite word that you say clear as day is "happy".. "Georgia happy."  You make me so happy my love, happy 13 months post transplant.

A,B,C's

Counting

Still shakin' it!

Today

Today started much like they do these days, with longer stretches between appointments we get glimpses of "normal" life. I was irritated by some recent criticism we'd received but was trying to remind myself that what we've done so far has gotten us here today.
Despite the rain we headed for the park, Georgia kept looking around and saying "kids?" we were the only ones out braving the elements. There were several moments when I looked at her and thought, you look so good.. you look so happy. Half way up the path to the car Georgia asked to be carried, I cradled her in my arms and we giggled most of the way up. At the top of the path a woman and man were chatting, they looked at us, smiled and I overheard the woman say, "those were the days.." I looked at Georgia and thought, if she only knew.
We headed home, I was anxious to see if there was an update on our friend Hunter, he'd been running a fever for the past couple of days - something that makes a cancer mom panic in ways most moms can't imagine. What I learned was that Hunter still had a fever but it was down, our friend Mia had spent the morning in the ER and our friend baby Celah had been medievaced to Seattle from Alaska overnight. All of these children have done there treatment, have been braver and stronger than most adults I know yet we're all stuck in this world of cancer.
It's such an odd place to be, today I feel lucky, to be home, to see Georgia looking so healthy and happy but am reminded, this is today. If measured by the people in my "old life" I am considered one of the most unlucky, but by so many of our new friends we are lucky... today. I am reminded that there are no guarantees, but there never were any to begin with - this is terrifying and liberating all at the same time. I have full faith that Georgia is as healthy as she looks but that didn't stop me from hugging her a little tighter for a little longer today. The love I was giving came back tenfold, several times Georgia gave me big hugs while saying "love much."
As you send prayers to Georgia and our family please send some to our friends... that Hunter just has a cold, that Mia's leukemia blasts packing her bone marrow will be knocked down by her latest treatment and that tomorrow baby Celah's family receive news of good health.

More One Year Photos

I picked up our pictures today from the One Year Post Transplant shoot Michelle Enebo did for us, here are some of my favorites.. thank you again Michelle!

Are you mocking me?

Several years before I had Georgia a dear friend was telling me about having children, it's like a mirror in front of your face she said.  This little mirror shows you exactly what you do, the words you use and how you are in the world.
We try and do things in a pretty light hearted manner around here, we talk through things, I try and communicate what I want to happen, not what I don't want to happen and on and on.  What I found out the other night is that Georgia is listening.  I was trying to get Georgia to go to bed, something she stalls every night.. I said, Georgia, it's time for ni-night... Georgia looked at me, said "time, ni-night no" (with a huge smile) then stuck out her arms out to each side and said "what?" just like I do when she says she doesn't want to do something I've asked.  Then she pulled her chin down, tilted her head and said "Georgia" in a low voice... I burst out laughing, my child just gave me the face and the serious voice I give her.. ahh my little mirror.

This is now a running joke any time she does something she knows she shouldn't we get the face and the voice... here is a rendition.

A picture is worth a thousand words

I love taking pictures of Georgia, capturing her lively spirit to share with others, most people only know her through photos.  It was fun to look back at pictures of Georgia as a little baby, see how she changed, who she looked like and how she was growing.  At the beginning of this journey it felt a little strange to take pictures during such a scary and intimate time but we did it.  Now we take pictures for fun but also to mark significant events along the way. 
Days before we were discharged after transplant I received an email from Michelle Enebo, a photographer who'd been introduced to this blog and had been following our story.  Michelle wrote me and offered to take pictures for us.  I was excited about having some family pictures taken outside of the hospital, we decided to meet and mark 100 days post transplant.  I love the pictures that Michelle took, they captured Georgia's incredible spirit, you can feel the joy coming through the photos.  One of these photos hangs on the Transplant Hero board in Children's Hospital.
Michelle and I have stayed in touch over the year and again she offered to take pictures, I was thrilled with the generous offer.  We met earlier this week to capture our family one year post transplant. 
Thank you Michelle again for these pictures that remind me we have come a long way.

http://enebophotoblog.com/so-happy/