Day 365 - What did you do this past year?

So you may be wondering where the journey has been going since June.  For those of you just tuning in we are one year in to a 2+ year treatment plan to #BeatLeukemia.

As this post is being written, I recall where we were a year ago.  I also reflect on the 364 days that followed.  As you know Anna's Journey has been filled with ups and downs to say the least.

I think of a then 8 year old who sat bravely in the hospital on Halloween and the following day when under anethesia for a bone marrow test.  Who then broke down screaming and crying in our arms when she heard that she had Leukemia.  Once past the tears she prepared for the battle of her life and handled it like I never could.

This horrific moment one year ago however brought us love and compassion in ways we never could have imagined.  From our families and friends to the overwhelming support of a community. You all followed and supported us in ways we could never express enough gratitude for.

So what's happened since June?

Anna ......... 

Went to Prom @ Sloan

Prom with Queen Dr Kobos & Leukemia Team

Got A Pool!!!!

Did Some Rock Climbing (AKA Physical Therapy)

Planted A garden

Took some selfies!

Went on a huge construction site in NYC!

Got her port removed!

Went to a Yankee Game!

 

Went to MAINE!!!!!!

Ran in the Ocean for the first time in a year!!

Lobster YUMMMMMMM

WENT BACK TO SCHOOL!!!! 

Met LUKE BRYAN !!!

During all of this Anna has been a real Warrior.  She has spent many days and nights in and out of the hospital, experienced multiple seizures, received many chemo treatments and so much more.  We are so proud of her and Thrilled for the exceptional care she is receiving at Memorial Sloan Cancer Center.  MoreScienceLessFear  She is still  in REMISSION! and we are hopeful it stays that way!!

Thank you will never be enough to all who continue to support her....But Thank you !

Day 225 - The Race

Leading into this day Anna has been feeling great and really hasn't seen all if her friends in months, so she was really looking forward to the race! 

She helped the night before to stuff all of the race day bags. Then got up and to Merwin Meadows park by 6:45am. Not before long cars started filling up the parking lot and all of the amazing volunteers went into action. It was spectacular to see it all come together. 

Anna was beyond excited to be spending time with her friends that she has not seen in months. They laughed, ran, screamed, danced and sang! It was the best pre-stepfathers day gift ever! I loved seeing Anna just be a kid! 

Now 5 minutes to race start we play the national anthem and got a great surprise when Anna and a few friends started to sign it live. And they sang it very very well! 

Now 8:15 sharp Anna starts the race with the sound of an air horn! She was beyond excited to see how many people were racing on this day for her. He smile as always was infectious. 

After 19 minutes the winning runner made it back across the finish line. Amazing how fast he is. Then our first ace female less than 1 minute behind. One by one Anna and her buds gave high 5's to every runner that crossed the finish line. 

It was an amazing day! As I've said many times before, "thank you" will never be enough to express our gratitude for all of the support. 

Day 181 - Seeds of change

Today Anna had a great time with one of her best buddies. They planted some seed to grow tomatoes and peppers. It was just a great day for her to not be doing Dr stuff! Xoxo

Day 177 - More Chemo and Good News

Short and sweet post for this date. Got great news that Anna is Still in remission!!!  Huge relief that she's still responding well to all the meds. Back in on this Monday for more Erwinia. 

So thankful and blessed. 

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 176 - Hoppy Easter!

What can I say. Anna had a great Easter. It was her first holiday since being diagnosed that was NOT spent in the hospital. "The Easter Bunny" hid 45 eggs around the yard.

Anna and her buddy Freya had a blast hunting for eggs. So happy to see her happy. 

Day 160 - Update

The past 3.5 weeks on Anna's joirney have been filled with ups and downs. Now being treated at Memorial Sloan Kettering cancer center in NYC. 

We are clearly very impressed with thier team and treatment approach. While it's the same as far as drugs is all out patient. Think of it as a chemo drive through. It really makes you have to be be even more aware if everything as a a parent. Talk about needing to be responsible. This kicks it up quite a few notches. 

Each Monday and Thursday for these past weeks have started with a 5:30 wake up so we can drive to NYC for 8am appointments. Monday is the chemo day and Thursday is the day to check her labs. Anna's been phenomenal these days. She just gets up and goes. No questions asked, never once saying "I don't want to go!" A real warrior. So proud of her. 

The first week started as planned with her drive by chemo. It went off with our a hitch. She was doing arts and crafts almost the entire time. Gotta love it. That week Anna was feeling good but by Tuesday at noon she was started to show signs of exhaustion. However she still was up for hanging with her friends a little each day. Now, the first Thursday was a lab day but in addition she was to receive another chemo only this one time. It's called Pegaspargase http://m.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/pegaspargase

It was a drug that Anna reviewed in the very beginning on day 8. We were told then and now that there is a chance for an allergic reaction. What's interesting is that there is a higher risk of having a reaction the second time you receive the drug rather than the first. The nurses prepped for the worst case scenario just incase. Kind of prepping for the worst but hoping for the best. As she began the treatment with the "Peg" (as it's called) I watched her like a hawk for hives, itching and signs of difficultly breathing. Now 10 minutes in to a 60 minute drip and all is good. All that changed at 11 minutes. She suddenly started getting itchy and showed a few hives. After calling the staff they were on it and by 12 minutes Anna was having a tough time breathing. At this point they were all hands on deck taking care of Anna. She was so brave I cannot believe it. A 9 year old was now surrounded by a team of 9 Dr's and nurses. All shouting different things TK each other. They stopped the drip and had her some oxygen then followed by a nebulizer to help her lungs to clear up. In all of this craziness which all lasted 20+ minutes she never even she's a tear. It's amazing however strength she has. Good news is she was feeling better but we needed to stay at the hospital for observation for the next few hours. It went off with out a hitch and 10 hours later from when we arrived , we headed home. Wow what a day! 

The following week was much less nutso! 😜. Like clock work Tuesday chemo and Thursday labs. But then came Saturday. At about 2pm Anna had another seizure while in the car. After being rushed to Norwalk hospital she seemed stable and by 5pm the dr's at Sloan said they wanted us to bring her down for some more testing. While getting some things from home for our trip (since we had a feeling this would be an overnight journey) Mom called me at 6 to tell me she just had another seizure. This continued to be a horrific nightmare. quickly they have her a CAT scan which came back clear! Phew!!  

By the time I return to Norwalk hospital there was a transport team from Sloan ready to take her. Anna was wiped out from the meds they have her to stop the seizure. She also couldn't speak. :( 

Of we went to NYC at around 9:30pm. Arrived at Sloan. Now barely awake Anna was speaking well and no more issues. All of us barley sleeping trough the night woke up the next day for Anna to be set up for another EEG exam. Great news! No issues with her brain. Not so great news, they can not really figure out why she's having seizures, so they increased her anti seizures medications in hopes that would help! 

One more night at Sloan brought us to Monday. Anna is still feeling great, is seizure free and ready to go home but a lumbar puncture is on order to check for any infection. 'Side note. When you are admitted over the weekend and they want to do a test on Monday mornings they "fit you in". Which means they give you time guesses just like the cable company. "Anytime today between 8-4pm. ' Now about 2:30 with Anna so hungry since she hasn't been able to each from the previous night Anna's isder anesthesia getting her LP. Once she wakes up she's sooooooo happy to eat! 

Now Tuesday and still at Sloan we get the tentative results that's she's clear of infection. Great news! But still concerning that there is no real answer to seizure. So next up is to get her chemo, now a day late. Quick and easy, chemo done and we head home around 6pm. 

The rest of that third week was pretty low key minus some decadron fits but Anna did great. 

Week 4 was a rest week. No chemo and Anna simply just had a happy week. :-) 
 

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

Our sponsors