Wednesday, November 27, 2013

Day 16 - Put me in coach!

Anna is a cheerleader for the Wilton Youth Football team and it is one of her favorite things to do. All her best friends were made cheering for the past few years. It is super cute to watch them cheer! Needless to say after her diagnosis her cheerleader season ended.

Shortly after we arrived home we were contacted by the coach of the Wilton Football team. He and the boys invited Anna to the game because they wanted to make Anna the honorary team captain. So excited to see her cheer buddies and get out of the house so we went. 

We met the team before the game. They invited us into the locker room where they all presented Anna with a ball signed by the entire team. They then asked Anna to bring the team on the field. I'm not going to lie, I was so proud of her and so touched that they would do this for her that I cried like a baby. 

Coach kept a tight eye on the players that day :) 

Coach Anna getting the team ball

Coach Anna on the sidelines with her game face on!

Finally Anna got some time with her cheer pals. 

Keep fighting the fight Anna! We love you #821ForAnna

Monday, November 25, 2013

Day 15 - Home Nervous and Hungry!

After 2 glorious weeks in the hospital today we came home! Ok so we are super excited and nervous to be home. 

Nervous? Yes. When you are at the hospital you have the luxury of having a team of doctors and nurses at the ready. You don't have that at home! Oh well, we'll see what happens. 

We made it through the night with minimal issue. Aside from Anna getting up to eat so often it was great. To give you an idea of how the decadron (steroid) alters the appetite here is what she ate through the night. 

8pm - frozen burrito
11pm - cereal
1am - cinnamon raisin bagel with cream cheese
3:30 am - ANOTHER cinnamon raisin bagel with cream cheese
5am - 2 eggs scrambled with toast 

And then breakfast! 

Maggie the chef! What? You don't have a stuffed giraffe chef in your kitchen? 

Ok so maybe I'm a little excited about being home too!

Day 10 - Super Smiles

Usually after a few cocktails any adult would give you a smile. Today Anna didn't have any fun adult cocktails but rather her daily dose of Rx cocktails. Decadron, Nystatin and Zantac. Oh wait she also got a pint of blood too!  and for that she gave us a gift of a super smile today. What a gift!  We love you sweetheart thanks for the smiles. You are so brave and amazing. Keep fighting the fight! 😁 xoxo #821ForAnna 

Friday, November 22, 2013

Day 8 - Friends are the best medicine

So you're 9 years old and your world has just been turned upside down. You've missed Halloween, your birthday happened in the hospital, your trip to Italy was cancelled and all you're fun activities are on hold till you don't know when. Luckily we ordered the best medicine to help lift her spirits. FRIENDS!  

Anna had a visit from some of her besties! In short time there was laughing, giggling, rainbow looming and more. She even gave them rides up and down on the hospital bed. It was kind of like a hospital amusement park! 

Best friends will always make you fell great at any age ! 

Some serious gaming happening! 

Tuesday, November 19, 2013

Day 18 - Our first mid-night visit to the ER

So by now we have gotten into the rhythm of being awake almost all night with Anna as the steroid she takes keeps her up and very very hungry. Tonight was different. With excruciating stomach pains we rushed to the hospital.  The nurses literally sucked. They didn't know how to use simple equipment. Yeah slightly concerning. To manage her pain they ordered 400 ml of Tylenol to be administered by IV. We noticed the bottle was 1000ml she got the whole thing !

Anna was taken for ex-rays of her tummy     Which tuned out to be ok. Kid just needs to get some movement going on in her belly if you know what I mean. 

So I checked with the day crew about the dosage and they said she should not have gotten that much. Guess what? What was really nothing more than a need for some fiber in her diet turned into a toxicity test. Poor kid :( 

Luckily she's fine as far as that's concerned. 

Getting X-rays of her stomach. 

Day 5 - Hey shorty, its ya birthday!!!

So you're 8 turning 9 and you're in the hospital. Not ideal that's for sure. 

Feeling down and out, the Hospital threw Anna a surprise birthday party with all the trimmings!  The entire floor sang happy birthday and grandma scored with a Carvel ice cream cake. 

i think her best birthday present was a visit from her teacher Mr. Schwartz.  It was great to see Anna smile!!!

Happy Birthday beautiful girl. You rock! 

P.S. Princess Renard attended the glorious event !  

Anna opening a birthday present from Mr Schwartz. She loves that guy!!!
Princess Renard attending the birthday party of the decade!  Super cute cutie:)

Monday, November 18, 2013

Day 3 - The port

So if you've ever had an IV put in your arm you probably didn't like it. I actually can even look at it even after its in. Yuk! Well for chemo they take it to another level. The surgically implant an access port in your chest which is connected directly to your heart. The day before Anna's birthday she went in for this surgery like champ! Her favorite part was that there would not be any more poking around looking for a vein any more ! 

Here is the pre op game face! Heather (mom) went in with her until the anesthesia kicked in. Apparently just before Anna passed out she said with a tired voice and her eyes closed "I don't think this stuff is working!" The Dr's and nurses laughed ! 

The day that changed a 8 year olds life for ever.

November 1, 2013 my beautiful 8 year old Step-Daughter Anna was diagnosed with ALL-Leukemia.  It was and still is the most heart wrenching thing any parent (or step parent) could ever imagine.

We arrived at the Maria Fareri Children's Hospital on October 31 approximately 1:30 pm after getting an urgent call the night before from her pediatrician telling us "I don't like what I see in Anna's Blood work"  Stripped from her day and not having a chance to celebrate Halloween was already a tough day for Anna.  Dr's did all the test needed before coming to us and telling us what they thought and that they needed to schedule a bone marrow aspirate to rule out Leukemia!! WOW!

The following day she was put under general anesthesia for the test.  With little fear and not really understanding why she was going to "take a nap" she did a fantastic job! Now we all wait for the results.  We waited, waited and waited some more which seemed like an eternity.  Finally a huge team of Dr's and nurses came to speak to us.  It was terrifying to hear the words from the Dr's mouth.  "Anna has Leukemia"  Without hesitation and before we even really had time to cry our eyes out the Dr said "If you had to hear this terrible news and get a Leukemia diagnosis, the type of Leukemia that Anna has is the most curable." They then took action!

Monday November 4th, the day before her 9th birthday Anna had surgery to place a Port in her chest so that treatment could begin.  Every day seems to just meld into the next, we all had sleepless nights in the hospital, became intimately familiar with giving Anna medications every 12 hours and vital signs being taken every 4.  This new normal was.....well...hmmm.. It sucked, but we feel very confident in what the Dr's are doing.

What is 821ForAnna ?

Dr's have said that Anna's Leukemia diagnosis calls for a treatment of 2 years and 3 months or 821 days of treatment to work to CURE her of this cancer.  A glorious cocktail of drugs. Chemotherapy, Steroids and a laundry list of others.  In the short time we have seen how difficult this is for her and the tough times that she will need to endure.  This journey will be painful and draining for Anna, both physically and emotionally.  She will need tremendous support from us (her parents), friends and the community to help aid her along.
Anna Summer 2013
To help bring awareness to this disease and inspire Anna to "fight the fight!" we started 821ForAnna.Org

#821ForAnna is a way to do something to help raise awareness for Leukemia and take on a challenge to support here.  I have pledged that in the 821 days of Anna fight, that I will cycle 821 miles per month till she completes her treatment.  Hopefully all will goes as planned and I will have cycled 22,167 miles, helped inspire Anna on her journey and create awareness for the Leukemia & Lymphoma Society

Join Anna and I, embark on your own #821ForAnna journey.  

- Cycle like me
- Walk or Run 82.1 miles per month
- Swim 8.21 miles per month
- Read 82 pages of a book per day
- What ever you want or can do is appreciated

Every time you do something for this cause, post it somewhere in the world of social media and be sure to add #821ForAnna in your post.  

If you are Cycling, Walking, Running download the Charity Miles App to your smartphone and they will donate $.10-$.25 per mile for all you do.....FOR FREE!

Or if you want to support Anna directly and be part of her Rally, go here! 

Anna, Myself and Mom Thank you