Thursday, February 27, 2014

A bloggers note

February 18.  Typically this is a very symbolic day to me.  14 years ago on this day I was diagnosed with Multiple Sclerosis. I battled blindness, numb legs and A long nasty list of issues for 6 years. Since then I have been doing as much as possible to better my health, my life and provide inspiration and support for others dealing with their own battles.

Each year on that day I do all I can to thank people for their love and support but it is impossible to ever repay those who have supported me. This year that day has come and gone with out mention from me until now and it is simply because I unconsciously have put my worries aside so that I can pour my love and support into efforts of a helping a beautiful 9 year old girl. I simply forgot about me! I actually am delighted that I did forget. It means that the life of the 9 year old that I've been apart of for the past 7+ years is more important than any worry about myself. Some may call that being a parent, I call it unconditional love. 

I'm blessed to be apart of her life. I've never asked for anything in return for my love and support because it's not important. What's important to me is the safety and health of my family, however unconventional it may be.

Through these now 100 + days of Anna's journey, she has tought me so much about being brave. I learn from her example everyday and it is the catalyst for doing anything that I can to help her. Simply doing what's needed to help save her life. 

Some of you have heard me say this before, "I would comb the earth for that beautiful little girl if it is needed" I love you Anna and Always will no matter how you feel about me. 

#821ForAnna #BeatLeukemia

Tuesday, February 25, 2014

Day 110 - Insurance Says NO to Bone Marrow transplant!

In  the US today, Health Care has become extremely complicated.  Even more so, the logic of decisions that insurance companies make are, well, illogical!  Let me paint you a brief picture.

If you are reading this, you probably have spent some time on the blog and know that Anna has been getting her treatment at Maria Fareri Children's Hospital in Valhalla NY.  You also know that a 9 year old battling Leukemia is braver than any adult could be.  Now while Anna is the bravest little girl you could ever meet, she also is still only 9 and has become accustom to the "New Normal".  She is used to the frequent friendly faces at MFCH and the Clinic.  In fact I know how comfortable she is based on a statement the night of her seizure, while at Norwalk Hospital.  Anna said "I want to go to my hospital."  I applaud all of the health care professionals that have made our little girl feel as if their hospital was her home away from home.

Ok, so here is where modern insurance makes no sense.  Just in the past few days Anthem Blue Cross Blue Shield has advised that they are "Denying" Anna's bone marrow transplant. Why you ask?

Perhaps it's because Anna is on some experimental treatment plan?......NO, she isn't
Perhaps it's because we have exceeded our yearly expenditure?.............NO we haven't
Perhaps it's because all of the Dr's Anna has seen since her diagnosis are not covered by the insurance?.....NO that's not it either.

It is because Anthem BCBS has a list.  And on that list it doesn't not have MFChildren's Hospital as an "Approved Transplant Location"

So what does that mean?  it means we can choose a hospital and a team of doctors, who do not know Anna, who have not been administering Anna's treatment, who do not understand how to relate to her, who look at her as patient ABC123, where Anna knows no one, where our family has to spend a 6-8 week time period away from home and work in a location that is more inconvenient and add additional stress to our lives during an already extremely stressful time.  But I guess that's just the way to rules are now written.

Well we are not standing for this. Anthem BCBS needs to now, that not only are we going to Appeal the decision, but we are Also in touch with The Leukemia & Lymphoma Society, Connecticut Department of Insurance, Patient Advocate Foundation and Cancer Legal Resource Center to help them understand that this is not ok.  
It is absurd that a health insurance company wants to dictate who can do this procedure.  Especially for a 9 year old.  How can ask parents to pick up there child and take them to a new place with new people, who you know nothing about who will perform a procedure that is to save your child's life.  I don't get it!  I hope they reconsider.  HELP NEEDED. Please post a link to this blog on BCBS FB and Twitter Page and ask them to reconsider.


Friday, February 21, 2014

Day 109 - Testing testing 1,2,3

Anna underwent a couple of tests to make sure that her seizure was not signs of a neurological disorder. First up was an EEG
To make sure her brain waves were working ok. I'm blown away by the available technology in this world. 

It looks much scarier than it is. Anna actually slept through most of it. Results were all good! She's got excellent brain waves :-) 

For this she was taken to the radiology wing of the hospital and had to wait a while before she went in. So yours truly had some fun with Anna's favorite stuffed animal "Peanut Butter" 

So the MRI was over a hour and none of us could be in the room or even walk in with her. With not even a glimmer of fear Anna went at it all alone. We played the waiting game and checked out clocks over and over. Waiting, waiting, waiting - you see the theme ;)
 When she can out d the exam room we asked how she was doing and she said "That test was really loud! I couldn't move but I had an itch so bad. The man told me to stop moving!" Moral off that quote....the kid wasn't even phased. She's amazing! 

Oh and incase you were wondering the MRI results were Aces! 


Wednesday, February 19, 2014

Day 108 - Seizure !

Tonight Anna had a seizure. It was completely terrifying. So lucky the paramedics showed up so quickly. Anna came out of it all on her own. This kid is so strong and amazing. We spend the first part of the night in Norwalk Hospital. The staff there was phenomenal.  They made Anna feel so comforted. It brought a tear to my eye when Anna said " I want to go to my hospital" :( 

So they checked all her labs and then a CAT scan. Good news is everything was normal. Now her oncologist from Maria Fareri coordinated a transport from Norwalk to Valhalla NY. Anna loved it. They sent the STAT team. And they even let he watch gator boys during the ride. 

Now at Maria Fareri we wait for more test to take place. MRI & EEG. Oh yeah. We are all felling a bit silly on 0 sleep. 

PS sorry for the typos. This post is on zero sleep :) 

Xoxo to all 

Day 102 - 106 - More Chemo Please?

Back Anna went for some more chemo. No complaints, no whinning. This kid is amazing! 

Big ugly bag of chemo MethoTrexate. This drip lasted 24 hours! 

Just chillin' on the best pillow pet EVER

Hospital silliness 

Some blood in her urine this day. Off to ultrasound 

All clear! We went home Sunday February 16. 


Wednesday, February 12, 2014

Day 99 - Wigs, friends, candy, buffalos and bears.

So it took some time, but our beautiful girl went from full head of hair to none in 5 days. She didn't get upset, took it like a champ! I know I might be biased, but she's so beautiful no mater what. So now a little light up top Anna asked for a wig. Off to NYC we went. She invited her friend Daniella to share the experience. 

So we arrive at HairPlaceNYC and within 5 minutes Anna realized that being natural was more her game so we skipped out and headed to Imagine Candy in Scarsdale,NY for some sweets! She found gummies, jaw breakers and lollipops...Oh and more friends too. (ps notice the size of the candy bags! Um, hello dentist!) 

You might say to your self, "Hmmm, what goes great with candy?" Answer the best buffalo wing of course! By request from Anna, we now headed to The Candlelight Inn for their world famous unhealthy but uber delish menu. The extra special treat for Anna was sitting next to a few of Yonkers Finest. After Anna said hello, she looked at the officers waist and said "hey you have a tazer gun! Do you use that and bring kids to Juvi? " Really i can't make this stuff up. The cops were laughing hysterically. The YPD left and pulled their Paddy Wagon out front for her with the lights flashing and siren screaming. She loved it! 

So with 20 buffalo wings, nachos, burgers and French fries behind us we headed off to "The Westchester" to Build a Bear Workshop of course. Anna and Daniela had the best time ever! It's a complex process and you certainly cannot rush perfection. But how stinking cute is the result!

As this was our last stop of the day on the fun train, the girls walked the mall for a bit. It was both adorable and a scary preview of the future, but we loved seeing her so happy and filled with joy. 

This post if filled with happy thoughts and memorable moments. I'm delighted to capture this as who knows what lies ahead. Anna is so strong and in almost 100 days of chemo therapy treatment, she has really not lost any of her energy. She's amazing and I love her to pieces! 


Thursday, February 6, 2014

Day 95 - SNOW DAY!!!!

What kid doesn't love a snow. Not sure why, but as kids we all seem to be pre wired to love it. For Anna today was no exception. 

I had the luxury of spending this snow day home with her. What a day full of Joy for us both. Her smile and energy is contagious. I strive to be as brave as her.

Oh yeah, did I mention she loves snow? #821ForAnna 

Tuesday, February 4, 2014

Day 92 - The day 272 lives could be saved!

Today was the day that Anna's School hosted a Bone Marrow drive in her honor. This was a day of pure joy for Anna, as she saw her entire community Rally just before her eyes. The turn out and support is something I will never forget for the rest of my life. Over 500 people came out to not only support her but to offer a gift to save her life.  Couple this with all of the generous donations that people extended to us for Anna's health care expenses leaves me kind of speechless. 

When a family member/ close friend or stranger offers to get thier cheek swabbed to see if they are a match to potentially save your step-daughters life.... it is overwhelming.  How do you even begin to start expressing your thanks?  This is the reason that this post is coming days after the event.  I do not know how to express my deepest thank you to all!  What makes it even more overwhelming for me is that I cannot get swabbed, I could potentially be a perfect match but since I have Multiple Sclerosis, I am not a viable potential candidate. :( Now a little a more bout the event.

The donor drive was from 10-2 Saturday February 1st.  At 9:35 there were already 15+ lining up ready to offer up their marrow! Anna's cheerleading buddies showed up to support by selling "Wilton Cheers for Anna" car magnets who raised over $1400! Another Young girl Alexa Steckel was there to support Anna with her Help Change Cancer cause. She raised over $400! Last a group of young ladies also sold hair bows at their "The Bow Flow" table selling over $150 of their bows for Anna.

Now half past 10am and the Cider Mill cafeteria was chock full of supporters filling out their forms prior to getting their swab on! There was a non stop flow like this until the end of the drive.  Parents, teachers, old friends we hadn't seen for over 20 + years, strangers who just want to help and so many more showed up.  in the midst of all of this Anna showed up at about 10:45 and she was smiling ear to ear.  Feeing quite like a celebrity for the day!  It was so amazing to see her there.  So So So happy, playing with her friends, running up and down the halls of her school, cheering with her cheer squad....just priceless.  It could not make this step parent any more happy than to see her like this.

Mean while hard at work was the Be The Match foundation, swabbing away.  It was pretty amazing that 2 representatives handles a crowd of hundreds!  While the support of the town was amazing, these 2 individuals from BeTheMatch were doing the deed of collecting life saving DNA.  It gives me chills just to think about it.
At 2:17 pm The counts were now in........272 donors now added to the Bone Marrow registry!!  Wow!!! Amazing, to think that in 4 hours we could have saved 272 lives...and hopefully one of those lives is Anna's  <3


Here is a link to the Good Morning Wilton story about the day.

Pretty girl with her cheer buds!

Heather getting her swab on!!!!