Day 136 - Back on the regular plan

Today was Anna's first day of getting chemo at Memorial Sloan Kettering Cancer Center (MSKCC). Anna received a new drug called Doxorubicin http://m.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/doxorubicin

It was not pretty look at considering it was gonna in her body. She made it through like a champ! 

Also on todays menu was good ole' Vincristine! King of constipation. http://m.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/vincristine

Very different experience at MSKCC. All of this was done while Anna was hanging in the play room. It was refreshing vs having to sit and lay in a bed all day. 

Anna continued to just go through the motions and dealt with it all with such grace. It was hilarious when she finished going to the bathroom and said "My Pee is orange.... cool! " Ahhh the innocence of being a child. Gotta love it. 

Thankfully the day went off without a hitch! 

Days 131 - NYC here we come!

JSo we have been referred to Memorial Sloan Kettering by the head of Transplant at Cincinatti. So off we went to meet the team ! 

In one day Anna got a chance to meet her new oncologist, new neurologist, new nurses, new radiologist and of course a new kick ass child life play room! 

From room to room we met them all. Anna had an exray to see her port was in good sanding. An EKG to look at her heart since in of the drugs she will take can have a damaging effect on the heart. We pray that doesn't happen. 

The neurologist saw Anna literally jump up in the exam table and he said " Well I guess there are no concerns of weekness and agility! I really don't need to examine her now." ( FYI he still examined her. Thank goodness. I would have felt he was not doing his job and kicked his butt) 

We left with a clean bill on her heart and central nervous system. Plus we now have the road map for the next 8 weeks. As usual Anna took it all in stride and was nothing less than a gem for this first trip to NYC. 

Anna, Julie and I took a #selfie in the waiting room. 

Anna checking out the neurologist checking her out! 

Post doctor visit Calamari at the famous Augie's in larchmont NY. As you can see Anna was in awe! 

#821ForAnna

Rally.org/821ForAnna

Day 116 - 118 Continued - THE CINCINNATI Effect

Arriving at Cincinnati Children's Hospital after 14 glorious hours in the car, we were greeted by Dr. Stella Davies & Dr. Christine Phillips.  In our first meeting they explained why they were concerned with the results from Maria Ferari.  They expressed that they were not convinced that Anna had any cancer in her body at all.  In fact they were suspecting that what MFCH was seeing were something called Hermatogones.  These are normal cells that grow in the bone marrow and can become present after a round of Chemo, but they wanted to make sure.  So the following day, 6:30 am Thursday - Anna saddled up for ANOTHER bone marrow test.  As usual she was fantastic!

The CCH team that morning was amazing.  It showed us how much more advanced this facility was VS MFCH.  The cleanliness was over the top positive, and how they cared for the patient was extraordinary.  It was becoming more and more clear that perhaps we were not in the best place for Anna back home.  There was a reason they were # 1 Cincinnati Children's

So the procedure was over and now we wait 24 hours for the results.  What's the best thing to do while you wait for results? Go to the Newport Kentucky Aquarium of course.

Now the following morning we eagerly await the results. They say with and as told us thy Anna is in Remission and does not need a bone marrow transplant. At first we were taken back as we now have trust issues. But after they reassures us that there is an additional data point telling them the same things we were relieved, ecstatic, elated.... Ok ok we were happy! In addition to telling us that, they also shared that they dug back to the beginning of Anna's treatment and reviewed images and actual slides. What this allowed them to tell us is "Anna has been in remission since day 29" The team at Maria Ferrari was WRONG since then. 

So now what? Clearly we were no longer comfortable at MFCH and moving to Cincinnatti for the next 2 years is not ideal. So Dr. Davies suggested Memerial Sloan Kettering in NYC. She's is friends with the head of transplant there. We concurred and she then put the wheels in motion to connect us with that team. 

Off to celebrate now! Where too? The Cincinatti Zoo. It was awesome. 

#AnnaIsAWarrior

Day 116-118 State of Confusion

So we've spent some time battling insurance companies to find out if we could have Anna's bone marrow transplant performed at Maria Fareri Children's Hospital.  The answer was a consistent NO!  However insurance never said she they would not pay for a transplant, but they just would not pay for it there.  That left us wondering why?  The more we dug the more we learned that often insurance companies will not pay for a bone marrow transplant because of the FACILITY not being a FACT accredited facility.  It has nothing to do with Dr's accepting insurance at all.

Learning more about the FACT accreditation it seemed almost as good thing that we were denied the transplant there as it opened up a world of other options.  Now knowing where insurance would cover the procedure, we started to explore and found out the #1 hospital for children's cancer care is Cincinnati Children's Hospital and insurance would cover Anna there.  We figured if now left with having to choose a location, why not go for the best available!  Quickly we engaged with the head of their Bone Marrow transplant team who immediately was concerned about Anna's case. I prepped Dr. Stella Davies about Anna's case from start to finish and prior to getting all of Anna's files she stated the she was "very anxious" about Anna's case.  This was on a friday, the same day Anna had gone in for another bone marrow test at Maria Fareri.  At this point we had made the decision to visit CCH to meet Dr. Davies and her team, so we could make sure that we were comfortable getting her transplant there.

The weekend passed and we awaited the results from MFCH bone marrow test.  Mid monday morning March 3rd, we get the news that Anna is presenting more cancer than she had previously.  This was so heart breaking to hear.  I now re-enaged with Dr. Davies right away.  She now again expressed her concern and recommended we get to them ASAP to retest Anna, since CCH was not convinced as to what MFCH was seeing, nor did they feel that we should be hinging a major life altering decision like Bone Marrow Transplant, based only on one set of eyes reviewing Anna's results.  After a few minutes of discussion we discussed driving all the way to Cincinnati to get Anna retested.......Just to be sure

To be Continued.....

5k For Anna

This event will benefit the Anna Getner Fund as she continues her 821 day battle with Leukemia. Her journey has been filled with ups and downs, but she is an amazing inspirational 9 year old. We all can learn a lot from her bravery and determination.

Come run this FAST & Fun USATF Sanctioned CLOSED Loop 5K. A great mix of road, trail and cross country. This run is great for all levels of runners. New, Old, Seasoned, UnSeasoned, etc.

This will be a timed event and there will be awards for the top finishers in each age group.

If running is not your thing join us for the 1k Walk.
 
REGISTER HERE http://www.active.com/wilton-ct/running/races/a-leukemia-journey-5k-run-walk-2014

CAN'T ATTEND THIS EVENT BUT WANT TO SUPPORT ANNA DIRECTLY? 
Go to www.Rally.org/821ForAnna

Thank you

The team at www.821ForAnna.org

June 14, 2014
Merwin Meadows
Lovers Lane
Wilton, CT

- 5k run Starts at 8:15am
- 1k walk starts at 8:17 am

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