Day 58 - Fearless Fun

So I will admit that as parents of a child with Leukemia we worry constantly.  Anna has little to no immune system right now so we are terrified of her catching a bug. It stinks because as much as we want to protect her from additional illness we also want her to be a regular kid. 

This day was no different. While she was excited to go off to the play ground, Stepdad was neurotic. "What if there are germs! Be careful, don't fall. Wash your hands. Disinfect." You get the point. As a parent its hard to let her be a "kid" right now, even though we want her to be. So when she is, it brings great joy....and her fearlessness helps us to be so too! 

What a beautiful smile! She's gorgeous <3

#821ForAnna

Day 56 - it's Christmas!!!

Today is Christmas! 

The past few weeks Anna has been amazing. Full of energy and plenty of laughs and giggles :). Today was no exception. 

To set the stage you should know that we DO have an elf on the shelf. Her name is Lovie. Lovie and Anna had been exchanging notes daily the last few days leading to Christmas. This really was so cute and added to the mystique of Christmas magic! What was most amazing was on of the notes (pre typed) from Lovie it said that she wished for a white Christmas. Well with not a flake in the forecast Lovie's wish was far fetched.  But as luck would have it suddenly started snowing here during Christmas Eve dinner. Anna was soooooo excited

That night we were off to bed, with 2 cookies and a glass if milk by the fire for the big guy. 

Christmas morning as expected! "Mommy Johnny He CAME! Santa Came!!!"

Priceless 

Her joy was our best gift!!

Yes we wore Christmas Jammie's!

Brush with Greatness - #BeBrave #821ForAnnna

As many of you know part of the #821ForAnna Journey is create awareness for Leukemia as well as an ask for your support to help Anna through this time.  It has been amazing how many of you; some of which we do not even know; have stepped up to support her. There has been such a great outpour of support and love.  Gifts, meals, presents, money, it is all amazing.  To date we have been fortunate to collect almost $4,000 that have been helping to pay Anna's Dr's bills. We are so thankful!

Through the power of social media some well known people spoke of Anna.  One of those amazing people is Sara Bareilles.  Hearing about #821ForAnna she posted this tweet to her +2.8 million followers

All we can say is WOW!  For an artist who doesn't even know her to extend herself in this way is Amazing!  She even follows Anna's Leukemia Rally.

Only days later we hear that she again opened her heart to another young child name Joshua who also is fighting Leukemia.  She brought him on stage to sing a duet of Brave.  It brings a happy tear to your eye!

Sara Bareilles thank you for being an amazing person with a huge heart.  You have helped Anna and us be even more Brave during this journey.

Thank you to all of you who continue to be there for Anna.  Anna you are so #Brave!!!!!!!!!

Day 39 - Family Rocks!

A few days into phase 2 of treatment and Anna is still feeling great! Aside for the occasional moodiness; which I attest to being 9 years old; she is fantastic. She has started taking her liquid meds all by her self and has conquered swallowing pills!  What an amazing child!

We are so very very proud of her!!!

Albeit not our best get up, we took a family picture in front of our tree today. 

I love my family!!

Note my crazy hair! I'm waiting for Anna to loose hers, then I'm shaving mine to match! 

#821ForAnna 

Day 37 - Chemo Phase 2

So its been a few days since we haw had anything to post. That is good news. We've been blessed that since her notice of remission our beautiful Anna has been feeling so good. No belly pain, no nuthin' 

It snowed 2 days ago and school was closed (although Anna has a tutor since she cannot attend school for the balance of this year) so she actually had a good old fashion "Snow Day!"  She played in the snow with her friend and even snuggled up at the neighbors during the storm to watch a movie. What an amazing gift! So glad she could have that time to feel like a regular kid ❤❤❤

She's posing with Dr's  :)

Now its time to keep on kicking Leukemia's A$$! Today Anna started her second round of Chemo. Now many people wonder why she still needs treatment if she is in remission. Well to put it simply, Anna has won the battle but not the war.....yet! This second round of so called "less intense" treatment is designed to make leukemia never come back. In better than 90% of the time that is the case. We pray everyday that she on the right side of the coin. 

So what does phase 2 consist of? Here is the short list

- 4 weeks of a daily chemo pill Mercaptopurine (this is the one that will likely giver her a baldy :( )

- weekly for 3 weeks she will get a spinal tap for injection of Chemo into her spinal track

- weekly for 4 weeks chemo through her port, which is the same as the first phase Vincristine en.wikipedia.org/wiki/Vincristine 

- at week 3 another bone marrow aspirate just to make sure none of that nasty leukemia came back. 

Yes, this is the less intense route. Yikes! 

Anna went through today's spinal tap procedure like a champ! 

Here are a few pics from the days shenanigans! 

Yup kids feeling good. A little #NOOK watching and eating a muffin :)

Day 29 - Christmas Come Early!!!!!

During the diagnosis the Dr's mentioned to us that they would expect Anna to be in remission by the 29th day of treatment.  So we are now sitting and waiting for the results of Anna's latest bone marrow aspiration. Of course how could I forget how amazing Anna did once again going into this procedure. Not a moment of worry in her eyes as she was getting ready to go in for this procedure. Amazing! Did I mention we had to wait for the results ? First, here is a small idea of what they do.

And we waited some more for the call. Those Dr's are amazing because they were right. On day 29 Anna is in REMISSION!!!!! Yay yay yay! What an amazing Christmas gift! 

What does it mean? Well a few things. First and foremost they cannot detect any cancer in her body! Wow! 😂

Second it means that before we start the next phase of this 821 day journey we need to celebrate. Anna went to see all her best besties at the Wilton Youth Football/Cheerleading banquet. She was sooooooo happy to be there. 

Look at this beautiful face of happiness. 

Anna had an uncontrollable laughing fit for  literally 25 minutes. She could not stop laughing. There was nothing funny going on at all. She just laughed, laughed and laughed some more. It was the sweetest sound. We told her what it meant to be in remission, maybe she was genuinely filled with such joy that she couldn't  control her laughter. No matter what brought on the laughing fit, it was magically to see her laugh and smile! ❤

I love this girl <3 

#821ForAnna

Day 28 - What's the C Diff?

Finally Dr's find out what's causing Anna's pain. As you may or may not know that when you are being treated with Chemo it not only kills all the cancer cells but also all the good stuff too. C Diff is an overgrowth of bacteria in the stomach which the body cannot regulate since the immune system is suppressed. What's it called? C Diff. Here is some light reading if you're interested. http://www.mayoclinic.com/health/c-difficile/DS00736

10 days of antibiotics and stomach pain will be gone! Now let's go home !!! 

Anna with her new cancer buddy Trevor. He just finished his 2+ year journey and has been amazing for Anna to speak too. This was the day we got home:-) 

Day 27 - Happy Thanksgiving!

November 28 Happy Thanksgiving

Now in our third day in a row Anna sits in bed. Good news is the pain which brought us seems to have gone. Yay! However we still do not know the root cause. Gosh Cancer is complicated. 

We spent the entire day with out a single test, bought of pain or anything overly concerning. It was like the doctors and leukemia took the day off. To keep some sense of normal we celebrated thanksgiving in the hospital, compliments of #WholeFoods. This thanksgiving has brought a new found appreciation of thanks. More then we could have ever imagined we are so thankful for our family, our friends, the Dr's and nurses and most of all thankful for life. A holiday spent with the ones you love is a great holiday regardless of where you spend it. Happy Thanksgiving!

What a great Thanksgiving smile. :-) 

Days 24-26- Have I mentioned we go to the hospital a lot?

November 26th. 

So Anna was not admitted till this morning. Doctors are puzzled by her pain. All points towards constipation still. So now what ? 

First lets get her relived of pain. Morphine please ! Next they clean her out with a mega dose of miralax. Then they order an X-ray of her belly, followed by a CAT scan. 

In almost every instance they use her medi port for everything. For this CAT scan they gave her a fresh large IV in her right arm for contrast. 

November 27

CAT scan result looking for blood clots are negative. Her bowels are clear. She is still in pain. Next up ultrasound. She's so scared at this point. It's enough to bring a year to your eye. 

Ready for her ultrasound

Great news! No blood clots!!!! Phew :) 

Day 23 - Hospital Bound at night again

So we spent 1 solid night home before Anna was screaming in pain again. At first we were in disbelief as the Doctors "fixed" this issues. But trusting our sleepless parental instincts we decided to make journey the hospital again. 

Little peanut passed out during the car ride

Felt so bad for her. She could barley keep her head up even as se was screaming in pain :( 

By know we are on a first name basis with wery Dr and Nurse. As always the staff was exceptional and made us feel as comforted as possible. For Anna's comfort it was back on Morphine ! :( 

Now we sit and wait for Anna to be admitted again. 

Day 22 - We're Home!.......again

So after collecting a lot of frequent flyer miles they discharged Anna. This time we had to keep to a strict plan of  MiraLax and Seena. To save you the googling, it makes you get you're #2 on! So we follow the plan and life is good. A couple of nights of solid sleeping for us all. 

Although Anna is so exhausted from the back and forth to the hospital, she is super happy to be home. There really is no place like home! 

First night home was great. We were back into our old routine of reading books in bed. 

It's book reading time in Anna's bed! Yeah I took and family selfie! 

#821ForAnna

Day 19, 20 21.... - Hospital Frequent flyer miles

So we left the hospital on Wednesday morning and then the pain returned that night so back we went.  I have never experienced a child with Leukemia but would expect that from the Chemo treatment would make her tired and sluggish, That we can handle!  See your child scream in pain like she was being tortured......That is the toughest thing in the world to watch.

We live about 40 minutes from Maria Fareri Children's Hospital in Valhalla NY.  When Anna is not in pain, this is an easy ride.  When she is screaming bloody murder :( it feel like an eternity.  She screams "Take me to the Hospital!!!!!!!!"  What child says that? :'(

Morphine knocked her and the pain out!

So for this visit at 10:30pm (yes it always happens at night) the Dr orders a whole lot of tests and drinking something called GoLYTELY...A LOT OF IT!  2 liters to be exact.  It came in a clear gallon jug and looked like Anti-Freeze...YUM?  No not really. It took 2 days to get the stuff to start working, but when it did start, there was no stopping :/ until you're empty that is (Sorry for the details, but you signed up to listen to the journey :) )

Guess what?  Pain gone and smiles back!  Off to home we go.............AGAIN.

 

You know the kid is feeling better when Ipad is in use!!!

 Oh yeah, and the appetite was back too (Notice the salad.  Salad = Fiber!)

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

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 

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! 

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:)

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! 

www.Rally.org/821ForAnna

Anna, Myself and Mom Thank you