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!!!  

#821ForAnna

#BeatLeukemia

#Love

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.

#821ForAnna

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 http://www.mayoclinic.org/tests-procedures/eeg/basics/definition/prc-20014093

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 :-) 

Next up MRI http://www.m.webmd.com/a-to-z-guides/magnetic-resonance-imaging-mri

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! 

#821ForAnna