Friday, February 5, 2016

Cured.

Yesterday, I went to the SCCA for Georgia's five year post transplant conference, I'm still feeling a bit numb, both from the conversation and the impact of the last five years.

Georgia didn't attend the conference, she would have been bored and I wouldn't have been able to candidly ask my list of questions.  Dr Carpenter wasn't in the office when we'd come for clinic two weeks ago so we decided to make him a little video.

After watching Georgia's video and marveling at how great she looks, Dr Carpenter opened his file full of papers and started with, Everything looks awesome.

For nearly two hours we talked about Georgia's treatment, healing and health today.  We reviewed chemotherapies she was given and how they may impact her body in the years to come.  We discussed how she needs to be followed and who should do that.

The question at the top of my list, What does being five years post transplant mean for Georgia?  With JMML the three year mark is a very big milestone so I wasn't sure what I expected Dr Carpenter to say, but the words that came out of his mouth could have knocked me over.  He said, Given the extremely aggressive form of leukemia she had, five years is when we start saying, cured.

Cured.  I know this is a word everyone with cancer longs to hear, we know too many that never got the chance, yet I hear it, I say it, I type it and all I do is cry.  The trouble with powerful words is that they are still just words.  Saying cured doesn't erase the absolute torture of the last five years.  It doesn't mean move forward and pretend like nothing happened, we still watch and test her body in different ways than the average six year old.  There are still questions that only time will answer and as her mom I will chose the appropriate time to help Georgia understand her body.

I talked with my dad today who gave an analogy that seems to fit just right, you don't want to look at this as the glass half empty, sometimes it's hard to look at it as half full, it's just sort of a glass with something in it.

I am infinitely grateful for Georgia's health and the outpouring of support that has carried our family to this day, I just think it is going to take some time to process.

Last night, before bed I told Georgia that I'd met with Dr Carpenter and he said her body is healthy and strong, she smiled, then asked, is tomorrow Friday mom, because I get treats in my lunch on Fridays.  She is just as she should be, focused on things that are important to her, having no idea what a miracle she is.

Yesterday, through the magic of Facebook I saw a post I'd written exactly five years ago, February 4, 2011 we were admitted to the PICU, Georgia had gained 5 pounds of fluid and her liver was toxic, it was such a critical time.  If someone would have told me I'd be sitting at the SCCA hearing the word cured five years later, I'm fairly certain I wouldn't have believed them.

I posted again yesterday with the incredible news I'd received, again, there was an outpouring of love and kind words, the comment that comes with the most impact is from my mom's best friend:
Bonnie Steussy I can sense your Mom saying , YES! She was always knocked out by your tenacity, Alison! Like Mother, like daughter, like grand daughter!!!! My heart is full with this news! And , no, you will never get over this experience ! You will remain quickened in every way. Your breadth, presence, depth, compassion and gratitude will set you apart to model for others. Little Georgia Claudia is a powerful teacher and you've graduated with honors! !!! That's what you get with hands on learning: auditing or a correspondence course just wouldn't have been the same! Sending love!


















 One year post transplant

Two years post transplant
Three years post transplant

Four years post transplant
Five years post transplant
Strongest girl I know!








Wednesday, February 3, 2016

Skier #2

Last week, Georgia had a day off of school so all four of us decided to head to the mountain for some skiing!  Leo had tried the magic carpet a few times in Montana but we hadn't tried his ski legs since we'd been home.
Brian had the first try with Leo, round and round they went, up the magic carpet, down the small hill, always holding on to dad, being very cautious.
Georgia was patient as always, encouraging her brother as she tried to do a few ski "tricks" which kept her happy while Leo was becoming more sure of himself.
We took a break for a snack and hot chocolate, warmed up a bit.  Then daddy and Georgia headed to the chair and I figured I would take Leo a few times on the magic carpet then wait in the lodge.  To my surprise, we kept going and going, each time his smile got bigger and he became more confident, the end result was a skier!







video

Wednesday, January 20, 2016

Five Years Post Transplant - The Celebration

Thankfully, Leo was hanging out with Leslie while Georgia and I were at the SCCA, we'd made plans for a celebration after our appointments.  Lauren and Blake got to play hooky from school to join in, first order of business, the reward Georgia had been promised, her first pet, a fish.

We met Leslie and the kids at PetCo with lots of hugs and smiles.  The kids got right to work looking at the fish options (Betta fish) and after careful deliberation, Georgia chose one.  We made sure to get our new pet a proper bowl and some fancy rocks and "grass" to fill her bowl.

It didn't take long for Georgia to come up with a name for her new pet, Tiny Betta Handsaker.

Next up, ice cream!  We all headed over to the local frozen yogurt shop and piled on the toppings, Georgia's sundae was complete with her celebratory 5 candle.

Lastly we headed back to the Pittmans for some much needed play and mommy decompress.
My sister has been with me each year on the anniversary of transplant, once at the conference, once bringing balloons and always being a huge support to me.  For so long we dreamt of easy playdates, not constantly worrying about germs or slathering everyone in Purell every moment, I'm so grateful that this dream came true.


Meet Tiny Betta Handsaker

 The Celebration!


This is Tiny's new home, and the notes Georgia left for her as she went to school today... 

I love Tiny, Love Georgia
and
Fish love

Five Years Post Transplant - The Work Up

Yesterday I woke Georgia up at 5:45am, just in time to get dressed, brush her teeth and head to Seattle.  My nerves were getting the better of me but Georgia was delightful as ever, even knowing we were heading for a blood draw.

We hadn't been to the SCCA since her two year post transplant work up but all the sights and smells felt all too familiar.  As we sat in the lab waiting area I looked around, remembering all of the times we'd been here before.

When a nurse came to the open door and called, "Handsaker" I could tell she didn't realize how young her next patient was going to be.  She was friendly and full of smiles but I obviously put her at ease when I told her why we were here.  Once we got settled into a room, she looked at Georgia, tears slightly welling in her eyes and said, "Wow, five years post transplant."

Part of the protocol before drawing blood is to have two people check the information on the lab sheet, our nurse went to find someone to come in.  When she came back with another woman she told her why Georgia was here, the woman looked at her and said, I remember her, I remember those eyes.

Georgia was so brave during her blood draw, smiling and talking as the nine vilas of blood were filled.  That bravery continued as we went to our next appointment, Pulmonary Function, a first. Georgia has always been too young to have her pulmonary function checked and it made me nervous as she is barely old enough to do it now.

We were again called back and lead to a room where Georgia was asked to blow a birthday horn, trying to give her an idea of what the test she would be doing.  She then moved over to a contraption that was hooked up to a computer, the "game" was to blow up the hot air balloon on the screen.  She did this several times, a few things were typed then reviewed and the woman conducting the test turned to me and said, I've never had a six year old do this well on a test!  Of the three of us, I'm still not sure which one was most proud.

We moved on to our next appointment on the transplant floor of the SCCA.  The sights of bald heads and sounds of pumps nearly sent me into a PTSD spiral but then I looked into Georgia's eyes, so bright and full of life and I felt calmer.

We first met with the dietitian, this part use to make my blood boil, filling out food logs with every miniscule bite of food Georgia had eaten and every drop of olive oil I'd syringed in her mouth. Today, I arrived with three pages full of meals eaten, this in itself felt like a victory I wasn't sure I'd ever win.  Georgia was weighed and measured, 50th percentile for both, remarkable.

While we were waiting for our next appointment, Georgia and I used the bathroom in the hall, as we were walking back to our room a guy stopped us and said, I didn't take care of her, but I recognize her, then he looked at Georgia and said, there's a picture of you up in the office area!

Last but certainly not least we met with Joan, our PA and Katie, our transplant nurse, these two women have seen Georgia all the way through.  Before the appointment got under way Georgia said she wanted to see her picture, Katie brought us back to the clinic offices, a room filled with familiar faces.  We saw another nurse, Jen who cared for Georgia at Children's, she was one of the few nurses that Georgia would let hold her when she was a baby.

The post transplant clinic primarily consisted of talking about Georgia and how great she looks, how much she has grown and how active she is.  She was asked to bend and flex her joints her specific ways and passed with flying colors.  She is doing so well that Joan didn't see a need for her to have a bone age x-ray, music to my ears!

The labs that were back all looked good, the major test results will take a while to come back but we left yesterday feeling happy and healthy, a very good place to be.

Those eyes, then and now


Lab Tray
Rocking her pulmonary function test
Jen couldn't believe how much Georgia had grown!

Nurse Katie!


 Joan, Jen, Georgia & Katie



Monday, January 18, 2016

The Visual

Tomorrow marks five years post transplant and despite seeing a healthy, growing girl who's lost three teeth, loves kindergarten, skis, does gymnastics and is starting basketball (today!) it's hard to believe we are here.
Tomorrow morning we will be up early, Georgia has fasting labs at 7:45am in Seattle.  This is the first of many appointments tomorrow at the SCCA.  Several weeks ago my phone rang and after looking at the number I immediately knew it was the SCCA.  I was pleasantly surprised to hear Katie's voice on the other end.  Katie is the nurse that literally hooked up Georgia's transplant, she is the reason we have pictures of the bone marrow and she's always been a big fan of Georgia.  We talked about life, how Georgia is doing and memories from the past, good and bad.  She remembered that we'd joked about setting up a beer and brats stand outside of Georgia's hospital room to welcome the new bone marrow, she still remembers the night we were admitted, even which room and bed we were in.  Katie is an amazing nurse who balances critical situations with humor and caring.
I hadn't talked to Katie since we had our two year post transplant work up at the SCCA, she'd recently moved from Children's to work there with the transplant team.  I remember our last conference at the SCCA, I was eight months pregnant with Leo and we all marveled at the thought the next time we'd be back, five years post transplant.
We've done so much living in the last three years, I feel so grateful and still mourn the life that we lived then.  I'm confident that Georgia will do well in all of her tests but the memory of how quickly ones life can turn will always be rooted in the back of my mind.
I've thought a lot about where we've been and how we've arrived at today, I keep coming back to all of the things that carried us through.  I remember it all, every prayer, card, gift, meal, all the words of support, visualization and love that was sent to our family.  Those things saw me through and kept me going.

While we were in Montana for Christmas this year my dad and I talked about an email he'd sent me years ago, he was focusing on the healthy future of Georgia and I've never forgotten it.  Here is part of my blog post from October 20, 2010.

I read an email from my dad this evening which I will be reading again when my spirits are low, he said:
I have created this new visual to help me through this. I am seeing Georgia completing her five year check up with a clean bill of health, having just turned 6 years old and making her first snow board adventure down Whitefish Mountain. I can truly see this clear as day. I am positive it is going to happen. She is not only musically gifted with a great sense of humor but a very adept snowboarder as well.
Positive thoughts bring positive results!!!!

My dad took this picture just a few weeks ago in Montana, seems to me the only thing he got wrong was the snowboard.

I'd be lying if I said I wasn't nervous to start Georgia's five year post transplant testing, as grateful as I am to be here, I haven't forgotten the sheer terror of that time and what it feels like to have your life under a microscope.  I'd also be lying if I said I didn't feel lucky, I still put us in the category of the luckiest of the unlucky and as convoluted as that may be, I'm grateful.

We welcome some of those thoughts, prayers and good juju for Georgia's upcoming appointments that have seen us through.

1/19
Fasting labs
Pulmonary function
Nutrition
90 minute clinic

2/2
Bone age x-ray
Dermatology

2/4
Review conference


Monday, January 11, 2016

Montana Christmas 2015

The day after Georgia got out of school we packed up and headed to Montana, it was a long trip but well worth the whining.  As usual, we had lots of skiing, hot tubbing, sledding, amazing meals, and tons of fun.

Leo got up on skis for the first time, the big kids took lessons and my sister and I got not one but two ski days together!

Christmas was amazing, the kids were so cute writing notes to Santa, making sure cookies and carrots were left out and in the morning Santa did not disappoint.  Leo opened one gift then said, momma, can I open just one more?  This continued the whole morning.

The bunkroom continues to be a huge hit and the kids even had their own Christmas tree!  I love that the cousins are making memories together in such a special place.

Thank you Grammy and Grandpa for making this such a great trip for everyone, another great trip to Camp Montana!














 This is what Leo thought about the Polar Bear Challenge!








The girls, "being fancy"

 Mommy/Daughter Ski Day
Leo's first time on the Magic Carpet