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!)