Monday, February 23, 2015

Big Heart Day

At preschool each child has a Big Heart Day, it's a highly anticipated day where you are celebrated in many different ways.  Georgia had been asking and asking when her big heart day was, after we arrived home from Hawaii we got to work on the special things she would be bringing to school with her.
She had a giant red heart that she needed to fill with pictures of her family, she carefully chose the pictures she wanted me to order, she chose several of she and Leo and only one of someone outside of our immediate family, her cousin, Lauren.  Once we had them, she glued each one carefully on then finished it off with glitter in any open space.  She chose her favorite book and favorite toy to share with the class.

When the big day arrived we packed up her special things and headed to school.  I helped her get her big heart set up then needed to leave, parents aren't allowed to stay on their child's big heart day.
When I picked her up she was grinning from ear to ear, as her friends said goodbye they all kept saying, "happy big heart day Georgia!"  She showed me a book the class had made for her, each child wrote down a compliment then drew a picture, the teacher wrote Georgia a special letter and wrote down her favorite things.  Since Georgia's big heart day we've ready the book nearly every night.

Here are some of the highlights:

Favorite color: Blue
Favorite movie: Frozen
Favorite book: Madeline
Favorite place to go: Hawaii
Favorite food to eat: pizza
Favorite preschool song: Rocketship Run

Here are some of the compliments her classmates wrote down:
I like Georgia's hairstyle.
I like Georgia because she is kind to me.
I like your big heart and how you play with many friends.
I like Georgia because she is nice to me.
I like Georgia because she has a healthy face.
Georgia is my best friend.


My Big Heart Girl
 Georgia with Teacher Kylene

Listening to her book being read.

The last page in Georgia's book is this letter from her teacher:


The class dancing to Georgia's favorite preschool song -
video


Hawaii 2015

We were fortunate to be able to go to Kona in early February with Nana, Bawdy and Wade, Alexis, Holden and Landon.  The weather was absolutely beautiful and between swimming, surfing, eating, cocktails, and lots of vitamin D we all had great time.

 The view from the deck was perfect for sunsets in the evening and 
whale & dolphin watching during the day.

The pool at the house provided hours of fun!




 Georgia & Nana
Four cousins!
 Landon & Holden 



 We all had a great time at a luau where Georgia made her own lei, the kids played and everyone loved the show.  The next day I asked Leo if he had fun, he smiled and said, "Fire!" nothing beats a fire dancer when you're almost two!








 Leo taking in the double rainbow one morning.

Leo and I were feeling pretty cool in our shades

 Georgia got a surfing lesson from daddy!

 Georgia the mermaid
Brian and I decided you can't go all the way to Hawaii and not stop by the ABC Store, we outfitted ourselves nicely in tropical tourist gear.
The whole gang!


Thank You

It's hard to explain the literal functions of the human body to a child, let alone the inter workings of a bone marrow transplant and an immune system.  We've always told Georgia that she received a present from a man in Germany, and that the present is inside her body.
More recently we've  talked about who that man in Germany is and why she needed his help.  I told her that the immune system she was born with didn't work very well and that Manuel was very generous and gave her part of his so she could have a new one.
Several weeks ago I was working on the computer, Georgia asked for a piece of paper and a pen.  She laid down on the floor and started asking how to spell certain words, I went letter by letter while still trying to focus on what I was working on.  "Ok," she said, "the last word I need is Manuel, how do you spell that mom?"  I stopped, turned around and couldn't believe what I saw, Georgia beaming with pride and her sweetly written words.  She asked me to mail her letter to Manuel, I snapped a quick picture before she found an envelope and put it inside.





Monday, January 19, 2015

#strongagainstcancer

I first heard about Strong Against Cancer the day before Thanksgiving, I saw it on Facebook, asking people to send photos of their kids being strong against cancer.  Russell Wilson was acting as team captain to lead the charge in beating childhood cancer.

The next day we saw a TV spot during the Seahawks game, promoting Strong Against Cancer, Seattle Children's and the Ben Towne Center for Childhood Cancer Research.  The spot talked about the cutting edge research that is happening right here in Seattle and how there are great strides being made in changing the way children beat this disease.

To learn more go to:  http://www.strongagainstcancer.org/

Yesterday I cheered for the Seahawks, with two minutes left, Leo woke up from his nap, I ran upstairs to get him and on the way back down, missed the last step and sprained my ankle.  With icing and elevation prescribed, my sister offered to take Georgia for the day, she was thrilled.  Just before Brian left to take her out there I texted my sister and asked her to take a couple of pictures today to mark four years post transplant, of course, she said!

I was a little sad I didn't get to celebrate this day with Georgia the way we usually do but knew Georgia would prefer time with her cousins over me any day!

I checked in with my sister a few hours later, she said they were having a great time and that she'd send me pictures soon.  This is what she sent, I cannot tell you how much I love these pictures, strong healthy cousins playing together, it just doesn't get better.

She posted a few pictures to Facebook with the caption, Four years ago today my niece had a bone marrow transplant. Today we are celebrating her HEALTH! Georgia, you are positively and without a doubt ‪#‎strongagainstcancer‬ We love you!

Thank you Les, for always being such an incredible sister, aunt and friend.

 Strong Against Cancer!










Four Years

Just after ringing in the new year I started to feel it, the emotion that I'd been trying to deny was taking over and I was becoming an edgy, heavyhearted mess.  The more distance we have from hospitals and tests makes it all the harder to come back to.

The Scan:
Georgia was scheduled for a DEXA scan to check her bone density just two days after we arrived home from Montana.  She'd never been old enough to have one before and the lengthy conversation I'd had with the radiology tech months ago was doing little to ease my nerves.  I waited until the day before the scan to tell Georgia, she was less than pleased but seemed more annoyed than upset.
We arrived at Children's and were called back by a nice tech named Maryanne.  She introduced herself to Georgia, said she was going to take a few pictures and that nothing would hurt.  We followed her down the hall, I smelled the surgical unit, the sterile stench that makes my stomach turn.  Through the first set of double doors and I looked to the left, the MRI waiting room where I first learned something was drastically wrong with Georgia's leg.  After passing through the next set of double doors, I could have been knocked over by a feather.  I looked at the doors on either side of the hall, each with large signs warning of radiation.  This is where Georgia had her CT scan the day after we'd been admitted to the hospital.  I clearly remember laying her sedated little 10 month old body on the bed then the nurse showing me the door to leave, I walked across the hall and literally crumbled into my sisters arms.  As we neared the room for the DEXA scan, all I could think was, if these walls could talk.
Georgia followed directions perfectly, laying still as the bed and scanning arm moved simultaneously to get pictures of her hips, spine and whole body.  I choked back tears, realizing how wrong it felt that my five year old was laying there, wondering if the chemotherapy and steroids that ultimately got us to this point had damaged her bones.
Upon completion the tech asked me if Georgia could have nail polish, she was thrilled when a large bin of polishes were opened, she picked blue with sparkles.  Later that night I asked her how she felt about having the scan, "fine" she said in a confident voice.  Were you scared?  Almost laughing she answered "no!"  We were free for a week until her four year post transplant blood draw and Oncology appointment.

I'm not sure if I thought the emotions were gone, had been dealt with or maybe I'd overcome it all but during our free week it was abundantly clear that I was stuck in the grief that I have, the kind that sits on your chest making it difficult to breathe.  It's not an elephant on my chest, more like two bricks, you notice the weight, particularly when remembering all that's happened.  This time of year is hard for me, really hard.  I am so grateful that Georgia doesn't remember the events of her battle against cancer, in some ways I think I may carry the grief that could have been hers right along with mine.
I think this is a big misconception about winning against cancer, that you should only feel the great joys of a battle won, but in reality, despite trying to leave it behind, I think I will always carry the grief for what I witnessed my daughter endure.

The Appointment:
We arrived right on time, checking in at the Hem/Onc Clinic to get Georgia's ID band and Allergy bracelet.  You can't help but look around at the faces in the waiting room, small children with balled heads sitting in wheel chairs, feeding tubes and sickness on children's faces, it's all gut wrenching. Then in a moment you realize that was you, that was your norm and thoughts start going, remembering how you didn't know any different but you do now, and the heartache begins again, how was this our life?
Georgia did an excellent job with her blood draw, then we headed to the cafeteria to have a snack while we waited for our appointment an hour later.  Once back and checked into our room we waited for the inedible quick knock on the door followed by the doctor coming in the room.   The appointment was fairly quick and quite frankly Georgia was bored.  The DEXA scan showed the bone density of a healthy, normal five year old, and yes I clarified, this is being measured against children who've never had cancer.  Her labs all showed a healthy, growing girl.  The thyroid test was still outstanding but our doctor said he'd call me with the results by the end of the day.  I wanted to be excited but they thyroid test is one we've had to have repeated in the past, so I was pleased but wanted to have everything back before I felt like I could move on.
We left the hospital and headed out to lunch, I sat across from Georgia just sort of gazing at her, truly a miracle.  We had a fun lunch then happened to find a frozen yogurt shop, she finished things off with a sundae, and appropriately, a cherry on top.
Later that afternoon I got the call that Georgia's thyroid test was back, everything looks normal the doctor said.  For the first time since this journey began I was told that we didn't need to be seen again for one year.  After a few more questions I hung up the phone, tried to exhale and quickly felt a lump in my throat and tears down my face.  How did all of this happen?  How did we get through this?  I'll never fully understand, I don't think I will ever get past the sadness but I live each day so incredibly thankful.  Georgia is the most remarkable girl.

Four Years:
Here we are, four years post transplant, I can't help but think about our donor, Manuel, how one simple act of registering to be a bone marrow donor changed the course of our lives.  He is such a truly kind human being, the sort of person that you feel honored to be a part of your child.

Life is good, I've had a few days to recover from the stress leading up to the tests and am regaining focus on my precious family, craziness and all.  We're off the hook for a year, so if you need us, we'll be busy living, doing anything we'd like!

 Here we are in clinic with one of the nurses who cared for Georgia and Dr. Rebecca Gardner, she is a big part of the cutting edge t-cell trials that are happening (and working!) to change cancer treatment for children.  She also happens to be one of Georgia's doctors, she was all smiles when she saw her, remarking that she thinks she'd grown a foot since she'd seen her last! 
 Four Years Cancer Free...
certainly worthy of a cherry on top!


Friday, January 16, 2015

22 Months

Leo,
In the last month you are coming so much into your own, talking and communicating your likes, dislikes and everything in between!  You continue to be an animal lover, any time you see animals, particularly dogs you'll point and day, "dog!"... "hug."  
You're both friendly and shy, and can't wait until you can do all of the things the big kids can.  You seem to think any sports team is the Seahawks and loudly cheer them on.
Georgia is your favorite playmate although there is certainly bickering that happens as you figure out what's you can and cannot do.  The other evening I sat you in a chair after you'd hit Georgia, I knelt down and told you it was not okay to hit, you looked right at me then closed your eyes.  I kept talking and you kept your eyes closed.  I told you that you've given Georgia and owie and asked you what you needed to do, you looked at me and said, "hug."  You then got up, walked over to Georgia and gave her a hug.  You're a softie at heart and love to snuggle.
I love you Leo and am so happy that you are my son!



In Montana, we went out to dinner, I ordered steak and intended on sharing it with you... you instead took it off my plate and went to town.  I love that you are a good eater!



Montana

Two days after Christmas Brian headed to work and the kids and I headed to Montana to continue the Christmas fun with Grammy and Grandpa!  This year we had snow and lots of cold, cold weather!  The kids all took it in stride, skiing, hot tubbing, sledding and having a whole lot of fun.
Georgia and Lauren took two ski lessons and I even got a ski day with my girl, it was the highlight of my trip.  Seeing the giant smile and hearing her say, "mom that was SO fun" each time we reached the ski lift.  Blake was the only one (kid or adult) that braved 3 degree temperatures to ski.
Fortunately Brian was able to make it over for a few days, he thinks he's ready to give up snowboard and go back to skiing, he too had a ski day with Georgia and had a ball.
Leo can't wait to ski like the big kids and in the meantime had fun chasing the big kids and playing in the snow.
As always we had lots of great food, wine and crazy kid fun.  Thanks Grammy and Grandpa, we know it's not easy to have four wild kids take over but they all sure had fun!


 Oldest cousins
Youngest cousins

Christmas continues!


Leo was earning his keep with Grandpa
 Lauren and Georgia played from sun up 'til sun down everyday
Polar Bear Challenge!

  
Snow Sisters


What do you do when it's too cold to play outside?  Go bowling!








Happy New Year!



 First time on skis!
 It was easy to cool off when the hot tub got too hot




 Leo may not have been able to do everything the big kids did, but he had plenty of fun!




 Ski day with my girl!




Georgia skiing - 

video


video