Saturday, January 25, 2014

Day 81-85 - Hospital Days

Anna started her 2 round of Chemo and she's kicking ass! Not one compliant this entire hospital stay. She was happy and full of energy. The week was much better than any time we had ever spent in the hospital before.  We were so luck there were not any complications this time around.

Aside from getting chemo here's all the other things that happened this week.

Wished upon a star!
Posed for a picture with her Dr's
Kicked A$$ Playing Trouble
Drove  fire truck
Played with Old Friends
Made New Friends
Met and Army Guy! (She was bummed that he was not single or as she said "Tooken") 
Made Ridiculous Faces
Learned how to give her self and injection on an orange


Sunday, January 19, 2014

Day 80 - I got your chemo here!

Today Anna once again entered the hospital fearless to start her 5 days of chemo. So far no side effects. She continues to amaze us. We are more scared than she is. 

Saturday, January 18, 2014

Day 79 - CHOP-it like it's hot!!

Today we took a road trip to the land of brotherly love.....PHILLY!  We were very fortunate to get connected with one of the nations finest Leukemia doctors. Dr. Susan Rhiengold at the Children's Hospital of Philadelphia CHOP

Having to make a decision that can affect the outcome of your child's life is the scariest decision you could ever have to make.  We wanted to be well informed and compare notes from one great hospital to another.  The night previous we explained why we were going to Philly.  Anna took it better than you could expect.  When we finished trying to be responsible parents she said "Ok, I'm getting tired.....Can we read now?"  Clearly she has no fear.  It is amazing.

We hit the road from Wilton, CT at 5:15am for an appointment in downtown Philadelphia at 9am.  It wasn't a bad ride, just a few dozen stops for the bathroom along the way :)

As we arrived at the hospital around 8:45 am, we were awe struck. The facility was breathtaking!!   As we entered one of the largest and oldest childrens hospital in the world, we were greated with nothing but the best treatment.  From check in to check out.....Amazing

Collectively with the help of CHOP and Anna's current Dr's we came up with a treatment plan. After long discussions talking about 15+ different Chemo drugs and protocols and side effects and "What If's" and and and....We pray that we made the right choice.  Part of that plan means a Bone Marrow Transplant for sure! Great news is Anna will be treated close to home at Maria Fareri Children's Hospital

OK, we now headed of to the Adventure Aquarium in Camden NJ for a fun filled afternoon.  It was pretty awesome!!  Anna loved it.  We saw Hippos, Sting Rays, Penguins and so much more.  I loved seeing her love the day! 

Help Anna by joining the Donor Registry and #GETSWABBED  live at or virtually at

Thank You

Anna with Dr. Rhiengold

We were looking for a frog.  Love her!!!!

Getting her art on at CHOP

Kid even loves fake dogs!!!

Tuesday, January 14, 2014

Day 75 - The Matching Game

Today Anna heads in for a routine blood draw. While the process to do this is routine, the magnitude of this particular blood draw is monumental. See, The next step for Anna'a treatment a bone marrow transplant. For this we pray there is an appropriate match for her. 

From the time they draw her blood today it will take 3 weeks to check the global donor database for a match. During this time Anna will undergo an even more intense round of chemo than the first one that didn't work. For this we will live in the hospital for 3-4 weeks. We pray for a match. This will be the longest few weeks of our lives as we wait. 

If you are interested in stepping up to be a match, you can visit

Thank you 

Sunday, January 12, 2014

Day 72 - Baby It's Cold outside!!

Today was extraordinary!  We were blessed that a local Triathlon coach Eric Hodska honored Anna at his annual Polar Plunge.  In case you are numb to what this is (pun totally intended) it is when a bunch a crazies jump in to ice cold water at the beginning of a new year in honor of a local person in need.  

We were contacted about this event about a month ago and were speechless when Eric asked honor Anna.  It all sounded great but seeing it in action was breath taking.  We showed up at Southport Beach in Fairfield CT.  (A beach I know so very well, as it is part of my bike training route.) on Saturday January 11 8:20 am.  It was a foggy morning and the wind had kicked up the surf at the beach.  Not something you typically would see this time of year. There was not a soul in sight!  I was kind of surprised since the event start at 8:45.  Then at about 8:35 a big parade of cars started to roll in, almost on Que.  It was amazing!  Before I knew it the beach was crawling with almost 100 people all there to support Anna in her fight against Leukemia.  It was such a great feeling to see all the love and support.  Lots of familiar and new faces were on the scene.  I will never forget the feeling of this morning.

At 8:40 Eric quickly gathered the crowd and had some heart warming words to say about Anna.  It was hard to hold back the tears.  Anna was so proud, it was written all over her beautiful little face.  Shortly after the heartfelt words, we were told to get our bathing suits ready!  At 8:47 we took a picture and then there was a count down from 5...4...3...2...1 PLUNGE!  And off we went.  The water was a frigid 36 degrees!  For the 15 seconds I spent in the water all I could think about was how much pain Anna has and will have to deal with.  It made the pain I felt from the cold water seem inconsequential.  We all screamed going in and coming out.  I dried off and looked for my beautiful little girl and she was smiling form ear to ear.  It warmed my heart and my feeling of pain from the cold waters seemed to disappear.  After we thanked everyone I went to Anna in the car and she for the first time that I can ever remember blew me a huge unsolicited kiss which came with a huge smile.  She was sooooooooo happy!  I wish I had a camera for that moment.  I will never for get this for the rest of my life. 

Thank you to all that have and continue to keep Anna in your thoughts and prayers.  We are so blessed to have a phenomenal support team.  From our family, to friends and even our local community I say WOW and Thank you.  The journey is not over and it is guaranteed to be even more difficult than expected, but Anna is up for the fight!  And this blogger will do anything possible to make sure that I am there for her on the battle field ever step of the way!  Today that battle field was a balmy 36 degrees in the Long Island Sound.

I love you Anna and always will!!!! XOXO  #821ForAnna
Pre Plunge Talk and Photo
Getting ready!
And We're OFF!!!!
The exit!!!!!!
Hardcore hanging in the Sound
Anna Mom and Anne Selfie!

Anna with some of our Triathlete family!

Thursday, January 9, 2014

Day 69 - The nightmare returns

Short and to the point. After her bone marrow test yesterday we got results back. Not what we wanted to hear. The treatment is not working. We learn next steps tomorrow. 

Please send prayers

Tuesday, January 7, 2014

Day 65 - Power to the Puppies!

In her final week of this mini phase of chemo, Anna is still feeling great.  We are amazed and so happy for her phenomenal energy level and happy smiles :)

To help her further her happiness, we were lucky enough to bring to the Guiding Eyes for The Blind puppy development center in Westchester, NY.  It is here where hundreds and hundreds of puppies are born each year in hopes to one day be a seeing eye dog.  For some back knowledge, we were told that 60% of all of the puppies born at Guiding Eyes will become a service dog, but only 40% of those puppies will become Guiding Eye dogs.  Aside from the dogs being the cutest thing ever, they have a huge responsibility.  These dogs are trained to have the ability to look and make a decision for their owners life.  For example they have the ability to safely walk their owner across 5th Ave in NYC.  Pretty impressive!  Ok back to the cuteness :-)

Anna LOVES puppies and just after she was Diagnosed I reached out to a great friend at work who manages the Pepsico relationship with Guiding Eyes to see if one day we could bring Anna to see the pups!  She made it happen and today we took her. We wanted to surprise her, so we told her we were going on "ride" just to get out of the house.  She really didn't like that.

~35 minutes later we arrived.  Anna was so excited and smiled from ear to ear.  She said "Hurry Hurry!!! Keep driving!!"

We entered and were greeted by Sue VP of Marketing who gave us a great tour.  Anna fell in love with the puppies.  Anna held and messaged a litter of pups that were born on christmas eve, just about 3 weeks old.  They were doing a great job of sleeping and their eyes hadn't opened yet.  It was so precious to see her so happy to hold these puppies. They were sooooooooo cute.  Anna fell in love with "Sugar"

Anna with Sugar - 3 Weeks Old
Loving every minute of this!!
Sugar with a big Yawn!!!
Hadley 5 weeks and ready to start his training journey

Sugar and her liter mates hard at sleep!
Puppy Van!!

I have to extend a giant thank you to a my work colleague for coordinating this and for PepsiCo for partnering and believing in a cause like this.  #821ForAnna

Thursday, January 2, 2014

Day 61 - Happy New Year!!!!!

As we came to close out the year 2013, one would think we would be thrilled to see it go or even pass along a good riddance! Well for this blogger I have a different point of view!

Yes, having to hear the horrible word Leukemia from a doctor about your child is devastating, but that horrific moment taught me a lot!  Here is a short list of a few

1 - Be thankful that you woke up today!  Not everyone has that option!
2 - It can always be worse!
3 - People are genuinely caring and want to help
4 - You are stronger than you think
5 - Enjoy life!  it is precious!
6 - My kid is even more amazing than I already thought she was

I could list these all day long.....

My final thoughts for 2013 are this ....... Thank you!  A huge thank you for brining my family and friends even closer to us.  Closer than I could have ever fathomed.  We've been able to see a side of family and friends that are so beautiful, and never knew were there.

A war is not fought alone and we are so grateful for all of the soldiers that we have on our team.

Happy New Year!

Love you all

John Heather and ANNA!!!!!!!!!!!

Anna's First Time at Nunnan's Lobsta' Hut in Kennebunkport Maine!