Monday, March 9, 2015

Day 435 -Let's get wired!

During Anna's course of treatment she has had numerous siezures. Luckily she has escaped harm everytime. In the search for answers why she spent an overnight at NY Presbyterian in NYC for an EEG too motor her brain activity for 48 continuos hours. 

As always Anna just went with the flow. Hoped I'm the car on the way to the big city and never complained once. Shortly after arrival the technician started to connect dozens of electrodes to her cute little head. 


Saturday, November 1, 2014

Day 365 - What did you do this past year?

So you may be wondering where the journey has been going since June.  For those of you just tuning in we are one year in to a 2+ year treatment plan to #BeatLeukemia.

As this post is being written, I recall where we were a year ago.  I also reflect on the 364 days that followed.  As you know Anna's Journey has been filled with ups and downs to say the least.

I think of a then 8 year old who sat bravely in the hospital on Halloween and the following day when under anethesia for a bone marrow test.  Who then broke down screaming and crying in our arms when she heard that she had Leukemia.  Once past the tears she prepared for the battle of her life and handled it like I never could.

This horrific moment one year ago however brought us love and compassion in ways we never could have imagined.  From our families and friends to the overwhelming support of a community. You all followed and supported us in ways we could never express enough gratitude for.

So what's happened since June?

Anna ......... 
Went to Prom @ Sloan

Prom with Queen Dr Kobos & Leukemia Team

Got A Pool!!!!

Did Some Rock Climbing (AKA Physical Therapy)

Planted A garden

Took some selfies!

Went on a huge construction site in NYC!

Got her port removed!

Went to a Yankee Game!


Went to MAINE!!!!!!

Ran in the Ocean for the first time in a year!!




During all of this Anna has been a real Warrior.  She has spent many days and nights in and out of the hospital, experienced multiple seizures, received many chemo treatments and so much more.  We are so proud of her and Thrilled for the exceptional care she is receiving at Memorial Sloan Cancer Center.  MoreScienceLessFear  She is still  in REMISSION! and we are hopeful it stays that way!!

Thank you will never be enough to all who continue to support her....But Thank you !

Sunday, June 15, 2014

Day 225 - The Race

Leading into this day Anna has been feeling great and really hasn't seen all if her friends in months, so she was really looking forward to the race! 

She helped the night before to stuff all of the race day bags. Then got up and to Merwin Meadows park by 6:45am. Not before long cars started filling up the parking lot and all of the amazing volunteers went into action. It was spectacular to see it all come together. 

Anna was beyond excited to be spending time with her friends that she has not seen in months. They laughed, ran, screamed, danced and sang! It was the best pre-stepfathers day gift ever! I loved seeing Anna just be a kid! 

Now 5 minutes to race start we play the national anthem and got a great surprise when Anna and a few friends started to sign it live. And they sang it very very well! 

Now 8:15 sharp Anna starts the race with the sound of an air horn! She was beyond excited to see how many people were racing on this day for her. He smile as always was infectious. 

After 19 minutes the winning runner made it back across the finish line. Amazing how fast he is. Then our first ace female less than 1 minute behind. One by one Anna and her buds gave high 5's to every runner that crossed the finish line. 

It was an amazing day! As I've said many times before, "thank you" will never be enough to express our gratitude for all of the support. 

Friday, May 2, 2014

Day 181 - Seeds of change

Today Anna had a great time with one of her best buddies. They planted some seed to grow tomatoes and peppers. It was just a great day for her to not be doing Dr stuff! Xoxo

Day 177 - More Chemo and Good News

Short and sweet post for this date. Got great news that Anna is Still in remission!!!  Huge relief that she's still responding well to all the meds. Back in on this Monday for more Erwinia. 

So thankful and blessed. 

Friday, April 25, 2014

Day 170 - Chemo Part 4

Today is April 14th and Anna is about to start her next round of chemo.  Plus we await the results of another bone Marrow Test to make sure she is still in remission. We left home at 6am and drove to NYC.

So today is a packed with a lovely cocktail of Chemo's.  Yeah Chemo's plural!!! 

2 - injections (one in each thigh) of Erwinia
1 - dose of cyterabine via spinal tap
1 - dose of cyterabine via IV
1 - dose of cyclophosohamide via IV
1 - dose of Thioguanine by pill

They day started like any other at the Memorial Sloan.  A quick check in with the Leukemia team.  They always like to make sure that Anna is well enough for her drug mix.  As always she's great and ready to go.  Anna went under anesthesia and did great.  While she was knocked received cyterabine and they drew her bone marrow to test.  1 down, 4 2 go!  All day she was happy as a clam even though she couldn't do much.  She was monitored all day as she was getting her meds. Each one had a different monitor period.  Some were 1 hour others were 2.  It was a very long day and there was little to no complaints at all from out favorite 9 year old. 

just a few bags of meds making there in through her port 
Caught an early morning smile.  My favorite thing in the world. 
Getting de-accessed.  Finishing up the day!!!  

Thursday, April 24, 2014

Day 176 - Hoppy Easter!

What can I say. Anna had a great Easter. It was her first holiday since being diagnosed that was NOT spent in the hospital. "The Easter Bunny" hid 45 eggs around the yard.

Anna and her buddy Freya had a blast hunting for eggs. So happy to see her happy.