Our Visit to Dana Farber February 28th

The last day of February already.  Time definitely goes faster the older you get!  You'd think by now the weather would be breaking but Mother Nature is obviously disagreeing with Al Gore.

We went up to Dana Farber to meet with some doctors about a clinical trial they are doing for patients that have had Ceil's type of breast cancer that has moved on to the brain and spine.  It's known that the drug she is on - herceptin - is great at going after HER 2 Positive cancer cells and wiping them out.  This is the drug she was on upfront with her original diagnosis in 2010.  The issue is that the herceptin molecules have a tough time getting thru the protective membrane that protects our brain and spine from toxins and other elements.  This protective "plastic wrap" doesn't know that the herceptin is there to help and will not let it in to combat the HER 2 Pos cells.

This clinical trial will present the herceptin directly into the spinal fluid through a port that will be inserted into Ceil's head.  This will be accessed for treatments just like the one she has now that is direct to her jugular vein.  The thought is the herceptin drug being introduced right into the spinal fluid will allow the drug to do what it's meant to do.  Wipe out the cancer cells that exist.

In order to do this, Ceil would have surgery in Boston to insert the port and to swap out the shunt so that it's programmable.  Believe it or not, this type of brain surgery is outpatient, where you go in and are checked out the same day.

If we go this route, we'll need to go up twice a week for the first month, once a week for the second month and every other there forward.  A lot of time in the car listening to NASCAR radio - Ceil's favorite!

To be eligible, Ceil will need another MRI and have her spinal fluid checked to verify that cancer cells still exist.  If there isn't evidence of them, she will not participate in the trial.  Prayers that God finally decides that she's been put through enough and smiled all the way through it and it is gone and never comes back!

She's been doing radiation for the past three weeks and is coming down to her last week on Friday.  The treatments are making her tired but she seems to be getting a bot better with the walking.  I've been working out of the house for the past three weeks quite a bit just as a precaution and I have to say, it's pretty good!  I'm able to do everything I need to to keep my clients happy and my company makes things very efficient which is great.  Hold on one sec for a shameless plug - who do you know that can use my help buying or refinancing their home in CT or MA right now or in the coming months?  Please call me to introduce me so I can make sure to help them out 860 305-1609.  There that wasn't too painful, but someones got to pay for the blog!

Kids are doing great.  They've been through a bunch but are resilient.

We'll keep you updated here over the next few weeks as we know more.  Thanks for checking in and a HUGE thank you to all that have dropped Ceil cards, messages, dinners, etc...

One last thing - The Berlin Lions is having a pasta dinner on April 12th to raise money in Ceil's name for the Relay for Life and American Cancer Society.  It should be a ton of fun and 100% of the proceeds will be donated as everything has been donated.  More info on tickets will be posted here once the flyer is completed.  We are in need of donations for the raffle.  If your company or you would like to help out and throw some swag our way, we'll take care of raising money with it!

Tell someone you love them, choose a positive attitude and enjoy your blessings!

Vin

The Battle Continues

I just wanted to update everyone with what is going on with Ceil.  Due to her getting week in the legs and having a tingling sensation in her legs, the doctor suggested that we get an MRI done on Ceil's lower back.  We did this last week and were called to let us know that she has some disease that spread to her lower spine.  We started radiation again this Wednesday and she'll be going for the next month over to UConn.  We worked it into the schedule where we are able to get the kids off on the school bus and head over there.  What I have found is when you have something going on like this, structure is the key to keeping your sanity.


We are also going to meeting with Ceil's Doc to look at a clinical trial up at Dana Farber in Boston.  With Hartford Hospital now being part of the Sloan Kettering system, we are also seeing what they have available.


The kids are doing good.  From our first bout three years ago, I was told that kids are resilient - there isn't a question in my mind that this is true!


Everyone always asks me if there is anything they can do for us so I will put this out there - the Ava's Mom team for the Relay for Life will be on the Relay website  today.  Please help support the team so we can raise money for the fight against Cancer.  The Relay for Life is the non-profit that Ceil loves being a part of.  This year, Olivia has asked that she be the captain of the team.  Like I said, kid's are resilient and Olivia wants to make this year's Relay the best ever so she wants to get involved in support of her Mom.


Here's the link - you can donate, join, buy a luminaria to remember or celebrate someone special.  Support or Join Ava'sMom 2014 link


One other request - and this idea came from Auntie Carla -

Hello Family and Friends,

I am reaching out to you today to let you know of a very special day coming up; Olivia's 12th Birthday on March 8th.  I have a simple request to fill her mailbox with birthday wishes.  Let's let her know she is in our thoughts, especially on her Birthday!  Can we spread the word about a special girls' special day? I think we can!

  PLEASE NO GIFTS; just a sincere wish for a Happy Birthday!

Feel free to make the card from scratch, as big or little or as sparkly as you want, as we all know Olivia is a Sparkly young lady!

You can mail her card to her home address...

I have set up an email address to send her virtual birthday wishes at oliviasbirthdaywish@gmail.com

or there will be a "mailbox" at Simeone's Mobil, 21 Chamberlain Hwy, Berlin to drop cards off as well.

Please take a few minutes to send a birthday wish to Olivia. 

P. S.  Ava's birthday is coming up too at the end of March, so stay tuned for another birthday wish request :)

With that, your prayers are appreciated and we'll keep fighting the fight on our end.  Remember, only you get to decide if it's going to be a Positive or Negative day - Choose Positive!

Vin