The last 24 hours have felt different than I would have guessed, they've come with tears of joy and sadness, reflection and a bit of feeling stuck.  I think perhaps to the outside world we've done it, achieved our goal so now we're done.  The only problem is this wasn't a broken bone, we didn't just get an x-ray that says Georgia is all healed up so have a nice life.. we are still very much in this battle we refer to as a marathon. 
My complex feelings aside it was time to celebrate, after a much needed nap we headed to my sister's house so Georgia could see her cousins!  It was a great evening with some much deserved play time.  On our drive home Georgia kept requesting french fries, who am I to stand in the way of that request, this is your day!  Once home we needed to get a quick bath, we turned that into more of a mini spa.
Thanks to my dad for babysitting and my sister for coming to the conference with me, Brian was there on the phone, unfortunately he doesn't have a job where you can go in late. 
It's hard to wrap my head around all that has happened in the last 14 months.  Looking back, the people and relationships this journey has brought about is something I wouldn't have guessed.  I have been criticized by people I never thought possible and loved by people I don't even know.  At the end of the day that got us to today, so that being the case, I wouldn't have it any other way.

 Yay cousins!

 Milk in a champagne glass & french fries in the tub

My beauty

Exhale

I am at a loss for words - we're here, we did it.  Today we got the news that we've hoped, prayed and visualized for so many months, all of Georgia's results look really good.  We still have a long critical haul in front of us but hitting one year post transplant is huge - how huge in fact, I didn't fully grasp until today.  JMML is considered a very aggressive leukemia, of patients who will relapse, 70% will relapse within the first year.
There was talk about T cells, bone marrow, thyroid function, iron studies, IGg levels, eyes, joints, and on and on -  all of which we were told are looking very good.
Although I'd hoped to start a prednisone taper in February we will go for another three months before considering a taper.  Georgia has grown taller since being put on prednisone which is a good sign that the drug isn't impacting her hormones in ways that it is know to do.  Hopefully we will start a taper in three months (which would last several months) from there, work on tapering her immune suppressant - all in all she will still be heavily immune suppressed over the course of the next year.
Day to day life won't change much for us, over the next couple of months we hope to get to once a month appointments and there is still a large focus on Georgia's eating and weight gain.  In March we will have another MRI on her left leg and will start to re-immunize. 
I looked back at what I posted exactly one year ago - Georgia had a fever of 103, had just been diagnosed with a bacterial infection and was scheduled for a CT scan the next day - I wrote the words, dear good this is enough, eight days later we were transferred to the PICU.
Today feels like such a crossroads, if I look back I am instantly brought to tears about all that has happened to my precious girl, if I look forward I see a very long road but one that holds health, happiness and a whole lot of love.


Thank you for all of the love and prayers, they are proving to be so very powerful.

No time to smile for the camera - bottoms up!

Day +372

I was certain that we'd get the rest of our results before the conference tomorrow, I was wrong.    Tomorrow morning at 10:30am I will walk into our conference feeling vulnerable and per my norm, with my guard way up.  Although I have really grown to like our team and see how they adore Georgia there is an element of wanting to protect us from them.  At the end of the day they are the messenger, but good or bad they are delivering one hell of a message. 

I recently read the following on a friends Caring Bridge page - it couldn't be more true.

The Strength of an Egg by Juliet Freitag

Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock". Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make.

An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an even slightly different angle will break . The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.

That is where parents of children with cancer (or other serious conditions) are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.

Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty though, parents of kids with cancer (or other serious conditions) will pick themselves up and put themselves back together again.

Day +371

This morning we were up and going again, off to our eye appointment.  I assured Georgia several times on our drive that there would be no pokes - the look on her face told me she wasn't totally convinced.  She did great during her eye exam, her eye sight is totally normal and there are no signs of GVHD, JXG or cataracts.
This afternoon I was getting ready to head out when I heard my phone ring, I ran up the stairs and saw it was the SCCA calling.. deep breath.  Some of the results are back, here is what we know so far:

Chimerism - 100% donor cells
Flow cytometry - negative for leukemia blasts
Skin biopsy - shows nothing of note

We are still waiting on the bone marrow biopsy results, the cytogenetics are looking for the translocation of 5/13.  When Georgia was diagnosed they found that part of her chromosome 5 had broken off and attached to chromosome 13, this is how they will tell if disease is present, they are also looking for Monosomy 7 which is an indicator of JMML.  We have every hope that these tests will come back clean and clear but the fact is they are looking for disease in a different way than the rest of the test so we wait, pray and try to stay focused on what we do know.
In other good news Georgia's blood pressure has been normal during both of her clinic appointments this week so the team doesn't think she needs to be seen by the renal docs tomorrow!

This evening I got an email from my amazing friend Jody, she has been with me through this journey in such a profound way, always sending the right words at the exact right time - today was no different.  She sent a "word cloud" - it is made from text that you provide. The clouds give greater prominence to words that appear more frequently in the source text. Jody used this blog as the source and sent me the words. On this pivotal day I was struck by the largest words, the ones used most often over the course of our journey:

Day +370

Today was hard, Georgia is all to wise to where we go and what happens once we get there.  I continually hear "more ba-bye", "no tube", "home" today was filled with all of those but a new one that broke my heart - "no poke, done."  While I'm holding Georgia during these times, trying to reassure her that everything is going to be okay I want to tell her that I'm sorry no one is listening to what she is so clearly asking for.  The whole process never gets less traumatic for either of us.
With today weighing heavy on my heart I want to share some information, I have to laugh because at the beginning of this journey I was certain I would never be a person who talked about all of the statistics around cancer, that we were in this fight for Georgia and nothing else.  I have a new outlook now, when you've seen what I have, you want everyone to have some knowledge so you can make a difference.  Childhood cancer is ofter refered to as rare - 1 in 300 is not rare.

The American Cancer Society spends 1% on Childhood Cancer Research

They spend 7% on Administrative Costs

The Ben Towne Foundation continues to do incredible things - they just gave $5 Million grant to support finding a cure for CHILDHOOD cancer.  100% of any donation to Ben Towne Pediatric Cancer Research Foundation will support innovative research toward curing childhood cancer.

http://www.q13fox.com/news/kcpq-a-special-5-million-grant-helps-seattle-childrens-hospital-fight-cancer-20120123,0,1530364.story
 
http://bentownefoundation.org/home/

Day +369

Day one of testing started early, Georgia heard the coffee go off at 530am, opened her eyes and said (coffee) ba-ba's?
First up, blood draw, while waiting To be called back a lab worker came out, glanced at Georgia then made a frowny face... Ah, the subtle reminders that kids aren't supposed to go through this. Georgia was a rockstar with her blood draw - I kept hearing about the large volume they would take .. I walked out thinking, that wasn't so bad - we found out about an hour later that they hadn't even drawn half of what they were supposed to. Fortunately no one likes to see a little one get poked so our PA made a call to Childrens, they will draw the rest when she is sedated tomorrow.
The majority of the focus and really what counts is what we find out about Georgia on the inside, that being said it felt so good to hear all of our team comment on how great Georgia looks. She was so cooperative for the exam, was chatty and showed off some of her talents, all to get a smile.
We didn't get much information today, but I can report that her weight was up a (tiny) bit and her blood pressure was good!
Tomorrow is a big day with sedation, that part never gets easier.

Thank you for all of the thoughts and prayers - they are felt and make such a difference. Again, as you send healthy thoughts to Georgia, please keep our friend Mia in your prayers as well - she needs some healthy white cells to fight off an infection, right now she doesn't have any.

Day +368

Tomorrow kicks off our week of one year post transplant testing - big deep breath.

Monday:
7:15am Blood draw
8:00am Pharmacy (to review meds)
8:30 - 10am Physical exam (hmm, 90 minute exam on a two year old)
10am - Dental exam
11am - Nutrition (weight/height) eating review

Tuesday:
Georgia's sedated procedure day - bone marrow aspirate and biopsy as well as a skin biopsy.

Wednesday:
Eye exam

Thursday:
Renal exam to review any potential blood pressure issues

Friday:
Review conference

This week is going to be long and stressful for all of us, our hopes and prayers are that we are left with results that show a healthy growing body with 100% donor cells, good blood pressure, and an overall sense of health and healing.  Your prayers and good thoughts are so appreciated. 
When you are thinking of Georgia this week please also say a prayer for our friend Mia.

Day +365

Here we are, one year later.  This monumental anniversary stirs a lot of emotion and has had me reflecting on our journey through transplant.  Someday I'll really breakdown and cry for all that we've gone through but that will need to wait a while longer.  Today we celebrate Georgia and the incredible girl that she is. 
Next week we start our intensive testing, three days at the SCCA, one at Children's Bellevue and one at Children's Seattle.  We have completed one post transplant test, physical therapy - Georgia passed with flying colors.  In the words of the physical therapist "I haven't seen a child this strong in a very long time."

Most of my thoughts today have been about a young man in Germany, without him we would not be here.  German law states that you can't have information about the donor or recipient until two years post transplant but you can send communication as long as it doesn't include names, landmarks, etc.  I recently wrote him, my letter was passed through the donor centers in each country, he has the right to accept the correspondence or not - I hope he read it.

To our daughter's donor,

I have been sitting, starting at a blank page for several minutes now, having no idea how to begin a letter of gratitude for being a large part of the reason that my daughter is alive today. In just two weeks we will hit one year post transplant, that was the day we received the incredible gift you gave us, total strangers.

My daughter was 10 months old when she was diagnosed with two very rare types of leukemia, one of them only treatable by a bone marrow transplant. She had always been a very happy baby, full of love and personality, her diagnosis came as a total shock. We were in the hospital for several months but my daughter quickly became known for dancing and waving to everyone she saw.

Early in the process of searching for a donor I asked our doctors who they believed an ideal donor was, our daughter is an only child so the idea of a related donor was out. The doctors were quick to answer my question, a young male. Then one day last November we received a letter, they'd selected a donor, you. You were the answer to our prayers, you were the ideal donor in our doctors eyes and a 10 out of 10 match for our daughter.

I want you to know that through this journey you have been thought of often, we have been sending love and gratitude out in to the world hoping that in some way you would receive it. You have been a part of our Thanksgiving grace for the past two years and when I tuck my daughter in at night we give thanks for you.

I hope someday to be able to share pictures of our daughter with you - she recently turned two and is a happy, lively, loving little girl who captures the heart of everyone she meets. Until then, I want you to know that that I am still brought to tears by the selfless, generous, incredible gift that you gave to my baby girl - a stranger to you but my whole world. From the bottom of our hearts, thank you for donating your bone marrow and for being a part of our daughters cure.

We hope this letter finds you well.

Much love from your recipient family

Snow Day

We took Georgia up to see the snow at Snoqualmie Pass several weeks ago, she wasn't a big fan.  When it snowed here the other day we headed out in hopes of a better time... success!

 Daddy teaching the art of snow angels

 Daddy's turn

 A quick tow around the yard

 Are you having fun?

 Yes!

 Faster, faster!

 Putting the finishing touches on our snowman

Ta-Da!

Day +356

Needless to say I was nervous going to Georgia's clinic appointment yesterday, I was confident her labs would prove that her low counts were virus driven, but I've been doing this long enough to know stranger things have happened and you just don't know until you know.
As soon as the door opened our doctor said things looked better - she'd actually been looking for us because the labs came back so quickly and she knew I'd be worried. 
This process is full of ups and downs, Georgia's labs had improved but our doctor has some concerns about her blood pressure.  We know without a doubt the "white coat" factor is playing a role but Georgia was sitting still and wasn't upset when her blood pressure was taken, this has become a theme.  It isn't uncommon for transplant kids to be on blood pressure medication, the immune suppressants and steroids can have an impact. 
I took some time yesterday to enjoy the feeling of a moments peace that came with improved labs, unfortunately I can't stay there, we have the new focus of blood pressure and major tests coming in less than two weeks. 
We will be meeting with the renal clinic to asses Georgia's blood pressure and see if she needs to be put on blood pressure medication.  This news came one year to the day that we checked into the hospital to begin conditioning for transplant.  I can't help but feel overwhelming sadness for the stress this process continues to have on Georgia's little body.

C is for...

Shortly after Christmas our household started showing signs of the cold and flu that have hit the greater Seattle area. Georgia threw up for two days, Brian had a horrible head cold and I was trying to avoid it all, unfortunately that didn't happen.
By the time our first clinic appointment of 2012 rolled around Georgia and I both had a cold. My thoughts going into our appointment were focused on Georgia's weight, she'd lost approximately a pound, all explainable by sickness but it's not always that easy.
We were shown to our clinic room and were soon visited by our favorite child life specialist who was just back from maternity leave. Mid chat with her our doctor walked in, I always try and read her face but because of our colds, anyone who came in our room was wearing an "isolation" gown and mask as to not carry germs from room to room. Once alone with our doctor she looked at me and said, I have some concerns about Georgia's labs. Instantly I felt my heartbeat accelerate. Her white blood cell count and her ANC were both low, this can be a sign of disease. Our doctor went on to say that she was actually happy to read in the nurses notes that Georgia had been sick, this could also be a cause if these counts dropping. She said she'd ordered extra tests on her blood work to look more closely at her white cells - JMML cells (most of the time) have a very distinct look, she was waiting on a page from the lab.
I can't even begin to tell you the thoughts that were swirling around in my head as I tried to keep a smile on my face for Georgia.
The doctor did a thorough exam, checking lymph nodes, and feeling for organs that my be enlarged all while I held my breath. Everything seemed fine. She wanted to have a nasal wash done to look for certain viruses, she said the nurse would be in soon and that she'd be back once she heard from the lab.
I heard the nurse outside our room, then i heard our doctors voice.. The nurse said, oh, go ahead, I'll come back. Here we go. She came in and quickly said that the white cells all looked normal - slight exhale. She went on to say that she ordered another more sensitive test but she would need to call me later with the results.
Georgia, the ultimate trooper, was ready to go when the nurse came in - a nasal wash involves sticking something up one nostril,and twirling it around for five seconds... not enjoyable. My smart girl immediately started saying ba-bye, then as she saw the nurse coming at her nose started crying line no, tube no - my poor little love thought she was getting an NG tube.
The rest of the afternoon was long, around 5:30pm the phone rang - deep breath. She said that her uric acid level was normal, typically if leukemia cells are present this would be elevated. Her nasal wash was negative which is really neither here nor there because everyone agrees she has a virus. The other result was on her immune suppressant, Sirolimus, three weeks ago her level was 4.5, now it was 16. This seemed odd given Georgia had been dealing with gastric issues so she asked that we have another level checked the next day.
So, I asked, what do you think? Our doctor is hopeful that Georgia's low white count and ANC are being caused by a virus - a cold. We need to be seen on Monday to rerun all of the blood work, we want to see these counts on the rise and that her other counts have remained stable. If her counts are still low and her other blood counts have been effected Georgia will need to have a bone marrow aspirate, if they are better we will cautiously move forward.
Today we returned to Chidrens for another blood draw - as we were waiting outside the lab Georgia looked at me and asked, poke? I said, yes, but it will be quick then we will go home. They called our name and we headed back to the room. Georgia sat on my lap, asked me to take her coat off then pushed up her own sleeves, such a brave girl.

The fact that two lab counts can indicate a cold or cancer, it's mind boggling.

We are so appreciative of prayers, thoughts, vibes, juju - whatever you have to give. We are staying positive and praying that this is all nothing. Even if Georgia's counts are great next week we have our major one year post transplant work up the week of January 23rd, this will include a bone marrow aspirate. In theory, the work up is going over Georgia's body with a fine tooth comb to make sure she is still 100% donor and cancer free.