All Things Leo

Leo, you recently had your 15 month check up and are doing great!  You are continuing to grow at a rapid speed, still solidly in the 95th% for height but all that moving around has dropped you to the 50th% for weight.  I hesitate to call you long and lean because you still have some good looking cankles.
If you're awake, you are in motion, you are able to communicate more of what you want and seem to have new "words" daily.  You regularly say, buh-bye, hi, ball, bird, woo-woo (for dog, or really any animal), dada, mama, ga-ga (Georgia), more, baby, hat and a whole lot of car sounds.
You have a new dance, one hand up in the air and one across your body, twisting your wrists and hands, it almost looks like a flamenco dancer, you are pleased but also get a little embarrassed when we get excited about you dancing.
You point to the sky and make an engine sound when you see an airplane
Your favorite toy is the lawnmower, the real lawn mower.. you often climb in the shed and point to it while making that same "engine" sound.
You think the toilet is also a bath, apparently anything in the bathroom that contains water is a bath.  I asked you to put some band-aids back in the bathroom the other day, you were so proud as you walked down the hall into the bathroom then came back, grabbed my hand and lead me to show what you'd done... you'd put the band-aids in the toilet and couldn't have been happier about it.
You are sweet, you love to "give love" by wrapping your arms around my neck and give me the biggest hugs.
Georgia continues to be your most favorite person, you can see the amazement in your eyes while watching all that she can do.
You're all boy, you love sticks, you love dogs, you love dirt.

You make me so incredibly happy and I feel so lucky to call you mine.

 I see this a lot, you love to run but you also love to be held

 Playing fetch, Georgia literally throws a stick and says "fetch" and you go retrieve it, you're both happy with the game so I stay out of it.

 Working hard with your own lawnmower

 You sporting Blake's 2T jammies

You found two precious sticks at the park

Survivor

The Survivorship Clinic is something I didn't even know existed until about a year ago.  Really it is a "clinic" run by a different doctor within the Hem/Onc clinic that we've been going to for years, same location, same rooms, same memories.  It certainly felt big, monumental even to have reached the time that we would be seen here.  It's these times that I think of our friends who will never be here, I can so clearly see Mia and Rhema's sweet faces.
I don't like new doctors, it's nothing personal, I've just learned that the complexities of a childhood cancer diagnosis, treatment and care are much more than clinical data.  There are reams of paper, reams upon reams that document Georgia's course of treatment, no data though on what a force she is.
As our appointment drew closer I made phone calls, I wanted to prepare Georgia (and myself) for the appointment, what should we expect? I kept leaving this message on various voicemails without any response.  I finally heard back from Georgia's oncologist, she called to answer my questions and also to let me know she was leaving Seattle Children's.  I couldn't believe it, she has literally been with us since day one, she met us in the Emergency Room the day we first heard the word cancer.  No one ever wants to need a pediatric oncologist, but if you do, she is who you want.  She is the perfect balance of honesty, caring and impeccable intelligence and she's a mom which gives her credentials even the most prestigious medical school can't provide.  As I struggled to imagine moving on without her as part of Georgia's care we discussed the upcoming appointment that would include an echo cardiogram.
I tried to prepare Georgia without making it bigger than it needed to be, she looked at me and with a frown on her face said, "mom I don't want to see anymore doctors."  As my heart sank, I did my best to reassure her that we would get through these appointments then have a nice long break... then I promised a lollipop.
The day arrived and we headed to Children's, as we waited to be called back to cardiology I looked around at the clinic names on the plaques beside each doorway, Genetics, been there... Ophthalmology, been there... Orthopedics, been there, Radiology and the Surgery Center, been there and there, way too many times.
Georgia's echo went well, the tech was friendly and walked me through the things she was looking at while Georgia watched Dora.  I felt better when she said that the echo would be read in time for our appointment, Georgia felt better when she had her lollipop in hand.
We headed up to the Hem/Onc Clinic and checked in.  It's hard not to look at the faces coming and going, the bald heads, the tubes, the pain on one girl's face as she was wheeled down the hall.  You can see the question on others faces as they look at Georgia, new or old?
We were finally called back, vitals taken and shown to our room.  The appointment was long, filled with information that left me feeling an incredible amount of sadness.  Part of being seen in the Access (aka Survivorship) Clinic is that you are given a binder filled with information on the chemotherapies, sedation's, and procedures specific to your child, and handouts on all of the possible side effects.  The specific information is important, someday Georgia will take charge of her health care and she will need names and doses of medications to be monitored properly.
I was also given a book titled, 'Childhood Cancer Survivors A Practical Guide to Your Future' I hate books like these, I jokingly said, "Oh, is this our gift with purchase?"  Somehow my humor was lost on our new doctor.  Then, we went through all of it, from head to toe, how her body could be impacted by the treatment she received.  It was a barrage of information that was confusing, other malignancies, scaring of the lungs, decreased bone density, weakening of the heart, "over time the heart muscle can weaken as a result of this specific chemotherapy... this can lead to heart failure."  Wait, what? "Well, the recommendation is that she has an echo every two years until she is 21 then she will likely go to every 3-5 years... if caught in time there can be medication given..."  WAIT, WHAT???  I started asking questions, what percentage would you say... and how much of an increased risk?  The answers just confused me more, 5-10%,  a moderate risk, I'm no mathematician but 5-10% doesn't equal moderate, right?
Well, he said, with an uncomfortable chuckle and smile, "chemotherapy is poison and although it can kill cancer cells it can damage other things."  Thank you, for that reminder sir, I had almost forgotten. I wasn't mad, this doctor is a nice guy, he wasn't being a jerk, we just have different ways of communicating, did I mention I don't like new doctors?  I was desperately trying to read between the lines, he's speaking on data, he only knows Georgia from paper and calculations.  Her diagnosis and treatment are so unique it's hard to have accurate data, and at the end of the day these are possibilities not certainties.  No one has what I want, there is no crystal ball that can tell me everything is going to be okay.
Technically we don't need to be seen again for a year, but to keep lab work consistent we will return to Children's in January for Georgia's four year post transplant work up.  In the meantime, I emailed her (original) oncologist to walk me through the questions that leave tears welling up in my eyes.  Cancer never let's you go, there will always be more fear than the average person, more worries about the unknown.  For now those worries are mine, Georgia is too busy, growing, learning and being so full of life.  So I will do my best to take my daughters lead, I will put my fears aside and live, we are so grateful for the opportunity.

The faces of Georgia as we waited for the doctor to arrive

 What, we're not coming back until 2015?!?!

 Wasting not time, after the appointment we went to the park then daddy built a swing in the backyard.

My Boy

Leo, you are growing and changing so much it's hard to keep up!  You're ability to understand and communicate is fascinating, it's clear you know far more than I thought you did.  I can ask you to get your shoes and you'll go find them and bring them to me to put on, you point to what you want and often ask for more, more food, more dancing, more music, more back rubs.. you know how to ask for what you want! You are fast, running, climbing and not at all intimidated by the big world around you.

I have been so surprised to see the difference between boys and girls at this age, you make cars sounds constantly, you like things that are loud and fast.  This isn't to say that you don't have a sweet side, you're a snuggler and you love "giving love" or hugs particularly to your sister.  

You seem to idolize Georgia, following her around, wanting to join in whatever she is doing.. whether she wants you to or not.  You two dance, wrestle, sing, snuggle and laugh together, she's very patient with you, I think she likes the role of mini mommy.

Keep going my boy, the world is waiting.

Preschool

This past week, Georgia officially finished her first year of preschool.  Despite having a cold just about every two weeks the year really flew by.  I remember her doctors asking how I thought Georgia would do without me, at school or on a play date.  They knew I was always with her but I knew Georgia was just fine.  I'll never forget the first day of school, we started two weeks after everyone else due to a bad cold.  Georgia didn't know anyone, yet there wasn't a hesitant bone in her body, she walked right in and was thrilled to see a name tag with her name on it.  She walked into the classroom and didn't look back, not even to say goodbye, she couldn't wait to get started.
There was a never a day that Georgia didn't want to go to school, often asking on her off days when she'd get to go back.  It's become clear that Georgia doesn't know a stranger, she has no hesitation walking up to a child, saying hi and starting to play.  She is friendly and kind and very social, she follows rules and has fun and finally, likes to get messy!  Between dress-up, play-doh, painting, the climber, music and story time I think Georgia enjoyed it all but was best know for her "trick."  At the end of the day the teacher and students would sit in a circle and sing a little song for each kid, it went, Hello Georgia, how are you, do a trick for us and we'll clap for you..."  then the child would go to the middle of the circle and do anything they wanted, some did a twirl, some a karate move, some declined to go to the middle but Georgia, she most often made an attempt at a cartwheel that often ended in a flip.  If she went over she would stand up, all smiles, thrilled that she'd gone all the way over and say, "I'm OK!"
I am so proud of her, my heart literally aches with pride, for who she is and all that she is able to do.  I am so grateful that this is what is happening in her life, just as it should be.

 Preschool Picture

Happily playing at school

All smiles

Goofball

After we got home on her last day, I grabbed the camera and brought it outside, Georgia was happy to document the day and even suggested that she sit in the poses below.  When I look at these pictures I realize how much Georgia has changed, she's not a baby anymore, she looks so grown up.

Folk Life Festival

On Monday we hit up Folk Life Festival, I have to admit, I'm not much of a festival goer but we had a great time.  We found a spot in front of the kids stage, listened to three kid bands while Georgia danced and Leo napped.  Georgia had her face painted, we at lunch and headed home, it was a great way to spend a nice day in the city!

"Sleep" over

Last weekend Lauren and Georgia had their very first sleepover at our house!  Lauren was packed the night before and Georgia and I debated who was more excited to have her stay at our house.  There was lots of playing in the backyard, pizza making, s'more roasting, several outfit changes, giggling, but not a whole lot of sleep.  When it was time for bed we snuggled into Georgia's bed and I read the girls a story, I then got them tucked in and turned on the sound machine.  Lauren looked at me, "what's that noise auntie?"  I told her it was a sound machine, that she could relax to the sound of a running stream... she asked, "how do we turn it off?"  Our house is loud so I was afraid that if the sound machine wasn't' running the girls wouldn't stay asleep.  I suggested changing the sound, everyone agreed.  "Ah, the sound of the ocean, that's relaxing" I said.  The girls got snuggled in, I turned off the light then Lauren said, "there are sharks in the ocean..."  Georgia chimed in, "no Lauren, just think about starfish..." "there are whales in the ocean too" she responded.  We finally settled on the ocean being a nice place and I told the girls it was time to go to sleep.  I then heard Georgia say, Lauren, my mom scratches my back and snuggles me when I go to sleep, do you want me to scratch your back?"  After a short back scratch I moved between the girls, I was then told by both of them that they didn't need me in there and I could go out... I stayed.  Finally the girls were asleep, it only took about an hour.
At 3:15am I heard two little voices in the hallway, they were giggling, up and ready to start the day... I told them that it was the middle of the night and they needed to go back to bed.
Despite having little sleep it was so fun to have Lauren here, she and Georgia are like sisters, bickering and loving each other just the same.  We look forward to many more sleep overs, hopefully the next one will involve a little more sleep!

Fourteen Months

It's hard to believe that I've only known Leo for fourteen months, he is so a part of what makes us a complete family.  Fourteen months is a big milestone, I think mostly for me.  On the day that Georgia turned 14 months old she had a bone marrow transplant, today, the day that Leo turned 14 months we went to the park and played in the sun.  I can't begin to describe the joy I feel watching Leo zip around and just be, free to do whatever he chooses.  I didn't spend the day feeling sad, I felt grateful, that my amazing children are mine, they are uniquely perfect in their own way and nothing brings could make me happier.
Leo, you are full of energy and smiles, I'd say your favorite things are being outside and playing in the water. You literally bang on the sliding glass door asking to go outside, when it's time to come in you usually go kicking and screaming.  You love playing in the little pool outside and it's hard to get you out of the bath.
You're fast, with just about a month of solid walking under your belt you are becoming more courageous and have started running.  You're sturdy on your feet and love your freedom.
Sleeping has definitely improved and that makes everyone happy.  You are a healthy, growing boy with a good appetite.  Keep going my boy, the world is waiting for you.

Happy 14 months my sweet boy

 Ironically I discovered this wine today, The Ross Andrew Winery generously hosted an auction for 

Georgia and our family over three years ago and for the first time I sipped on what 

I would describe as the perfect summer wine!