Ballerina

 This weekend Georgia had a very special event, her first ever ballet recital.  Each week when I told her she had ballet she'd ask, "Mom, is today my recital?"  Despite telling me that she wasn't sure what she was supposed to do at the recital, she couldn't wait to go.
The day was finally here so we packed up to head to the rehearsal, all morning she was asking, "now? is it time to go now?!?"  Once we arrived it was constant squeals and chatter of little girls in pretty costumes.  The girls were all so excited and patiently waited their turn to rehearse then perform.
I was the backstage parent for our class, admittedly I took the job for photo opportunities but paid my dues in keeping track of 10, 4-5 year old girls.
I got a front row seat for their performance, everyone did great and more importantly had so much fun.  After a final bow with all of the groups the house lights came on and the girls went out into the audience to see friends and family who attended the performance.  Georgia was thrilled to see Daddy, Leo, Nana, Bawdy and Nah but most of all her cousins, Blake and Lauren.  The kids went up on stage for a picture then Georgia said she'd be right back.  She went over to her teacher and asked if she and her cousins could practice their bows on stage.  She didn't want it to end, she loved being on stage and leaping all around, we were the second to last people to leave.
Afterward we went out for dinner and ice cream, she was all smiles.  As Georgia and I walked back to our car hand in hand I was so thrilled with how the day had gone for her, she loved every minute.  She looked up and me and said, "Mom, I got to do my recital, go out to dinner and ice cream, today was even better than my birthday!"
That night as I tucked her into bed she asked if she could do her recital again tomorrow.  I told her that she could put on her costume and do her performance at our house, she said she wanted a stage, I said, how about we pretend the deck is a stage?  With a very disappointed sigh she said, "No mom, I want to perform on a real stage."  I guess there may be a recital or two in her future and we all couldn't be happier or more grateful.
It's moments like these, once in a lifetime firsts that humble me, all of the little girls in her class are special, each parent so proud, I'm just not sure everyone wells up with gratitude the way I do when memories like this are made.

 Georgia & Marley

 Most of her class waiting to rehearse 

 Teacher Jenna is amazing!

 The start of the show

 Georgia taking flight

 Practicing their bow

Leo, so proud of his big sister

Here is a video of the performance, the lighting makes it tough to see but you get the idea.  Thank you Leslie!

http://www.youtube.com/watch?v=0U7DsStxnMM

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.