Wednesday, April 9, 2014

4 trips to Boston the past 4 days

We've been up to Boston the last four business days for appointments.  The last three were for a study to see how the flow of Ceil's spinal fluid is circulating.  This is what last week's surgery was for.  She had a couple of new valves put into the shunt in her head along with a new reservoir that will accept a needle that will deliver the treatments.


I was asked today if the Denali had auto-pilot to get us there and we've done it so many times now that I kind of lose track of driving the MA pike, so it has become part of my sub-conscious I suppose.  Ceil is able to sleep during the trips which is good based on what time we've been waking up to make the drive.  I also pointed out to Ceil that the valet guys seem to know us now and I've definitely got accustomed to city driving!


Ceil continues to be tired from all of this but we have got to do whatever it takes to get my girl better.


This weekend is the big Pasta Supper that the Berlin Lions are throwing to support the Ava'sMom Relay for Life team.  The support has been staggering!  We look forward to a great night of seeing everyone and to raising some money for the continued search for a cure for cancer. 


If you haven't got tickets yet, I would get them soon as the number of tickets sold is incredible.  There will be some sold at the door, but they will shut it down when they think they will run out of food.  Tickets can be bought thru Friday online at www.berlin-littleleague.com under the "association" tab - Berlin Lions Pasta Supper.


Also, a big shout out to Deb Carson, the Powerhouse Gym and those "Warriors" who showed up to the Warrior Ride this past Saturday.  A great event with a lot of people pushing it thinking of Ceil!


Treatments look like they start next week.  I'll let you know once I have a more concrete answer.

Thanks everyone.


Vin

Monday, March 31, 2014

Surgery complete

While everyone in Berlin, CT was enjoying the March 31st snow event that every news channel missed, including Mama Simeone's beloved Scot Haney, Ceil and I got out right as the flakes started to fly for Boston's Brigham and Women's Hospital.  We arrived on time and she was checked right in.  The only delay was the hospital not being able to find her small, deep veins.  She told them upfront, but it took an hour of probing to finally give up on the challenge of finding a vein.

She went into surgery and at about 1:33 the doctor came to see me to let me know that all went according to plan.  The rest of the areas of the shunt that were not replaced were working properly which made for the best possible results.

Ceil is in recovery and will be released tomorrow.  She'll be home recovering.  Please, lets give her a few days before the phone starts ringing off the hook.  Reminder, the Sarge is back in Berlin (Karen Lee Tomlinson)!

We'll be back up here next Monday for the pre-screening for the clinical trial and then the treatments will start the following Monday, Patriot's Day.  Red Sox game at 10:30.  Who's got some tix that won't be used?

Thanks for the prayers and the support.

Wednesday, March 26, 2014

And so Dana Farber begins

Just got a call that we will start up in Boston on Monday.  Ceil's scheduled for surgery at high noon and we are still waiting to hear how long we'll be up there as the first few days she's got to be monitored.  How long will be based on how long the shunt can be turned off.


We also will take the ride up tomorrow for her pre-opp appointments.  This is all good news and we're looking forward to taking part of this clinical trial.  With anything like this you can imagine that there is nervousness about the unknown, but we're doing what needs to be done to get Ceil better.


She had her blood transfusion yesterday and seems to have gotten a little more energy from this. 


Couple of items -


If you would like to take part in a Warrior Ride to raise money for the Relay for Life, Powerhouse Gym, the official gym of Ceil Biscoglio, they are holding one on Saturday, April 5th from 9 - 12.  They are looking for riders and teams to cover an hour or the full three hours.  $50/hr.  If we fill them up, the event will raise $3300 for the Ava'sMom team and you'll get a heck of a workout!  Please contact Deb Carson at Powerhouse to register 860 836-4613.


Thanks Powerhouse and Deb!!!!


Berlin Lion's Pasta Supper is Saturday, April 12th from 4:30 - 7:30.  HUGE TURNOUT EXPECTED.  Make sure to get your tickets from a Lion, Simeone's Mobil, Roger's Market, Kensington Auto or on the Berlin Little League website www.berlin-littleleague.com under the association tab.  If you can't make it and would like to donate some swag for the raffle, please let me know - vbiscoglio@gmail.com or on Facebook - go ahead friend me!


We'll keep you all updated next week.  Thanks to everyone that has helped out and thanks for the wonderful support.  I have said it before, but you really learn what community is all about when you face adversity.  While the weather still sucks, I wouldn't trade living here in Berlin, CT all because of each and every one of you.  A sincere, thank you.



Monday, March 24, 2014

March 24 2014

First off, thanks to everyone for sending birthday cards to Ava!  It made the little girls birthday to get a lot of birthday wishes like her older sister.


Ceil and I went in for her normal treatment today.  She has been feeling weak again, having trouble getting up the stairs at home and developed a cough and had some nausea which continues.  We let the Doc know in the appointment about the symptoms and she ordered a blood test which we needed regardless after being off of the radiation. 


The good news is her white blood count is back up.  The bad news is her red blood count is down which requires a blood transfusion tomorrow.  It's an all day affair at Hartford Hospital.  We'll be there first thing in the AM and out by quitting time.


It just another obstacle that life has thrown at us.  My hope is that after the transfusion, Ceil gets some needed energy back and loses the low-grade nausea feeling  I'll let you know when she's out and that everything is better.


Prayers please - Thanks!

Friday, March 14, 2014

Consults at Dana Farber

Happy Friday!

Ceil and I spent Tuesday and Wednesday making the trek to Dana Farber and Brigham & Women's Hospitals for consults this week.  It gave me an idea that I think would work out well for consults with Doctors, mortgage people and others.

This would be in cases where it's a somewhat intermediate drive or over state lines.  Imagine if you could sit in front of your camera equipped computer monitor or IPad or smart phone and have the person you are consulting with on the same type of device and talk through a video type service.  It would be like you are meeting in person, yet you are at your home or office.  I even thought of a name, we could call it a web meeting or dare I say...facetime!  Think of the good it would do the environment from the gas and CO2 not burned by big Yukon Denali's, think of the traffic it could cut down on the roads, etc...  I need to seriously look into creating something like this.  I kid around, but it would make a heck of a lot of sense!

Regardless, we met with the Docs that gave us the head's up.  It looks like next week we will be back up to Boston for pre-screening followed by the start of the clinical trial the following week.  The schedule hasn't been set in stone but this is the estimated timeline.  Also next week is Ava's 8th birthday.  To think that half of Ava's life has been watching her Mom deal with the effects of cancer is heartbreaking.  But she and the rest of the kids seem to be handling everything in stride.  It shows the resiliency and the strength they get from Ceil from within.  She is the toughest fighter I know.  She's still tired from the radiation but this past Wednesday seemed to get some energy back.  If you do stop by for a visit, please make sure to keep it quick.  Ceil is the master of the Italian Goodbye and will not kick you out no matter how tired she's feeling.  Please be aware of this.

Auntie Carla wrote a request and wanted me to post it on here -

Hi Family and Friends;

As promised another birthday request for the very sweet  Ava Biscolgio.  Her 8th birthday is coming up on March 20th.  Ava is a sweet and sparkly and looking forward to her own special day! Please help me fill her mailbox with birthday wishes and let's spread the word!  Let's let Ava know she is in our thoughts, especially on her big birthday! 

PLEASE NO GIFTS; only a sweet wish for a sweet girl for a Happy Birthday!
Feel free to make the card from scratch, as big or as special as you want. 
You  can mail her card to 102 Devonshire way, Kensington, CT 06037
I have also set up an email address for virtual birthday wishes at avasbirthdaywish@gmail.com
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 Ava, don't forget to forward to others that may want to send birthday wishes too!

P.S. As you're sending your birthday wish to Ava, also send an extra stay-strong thought for Ceil.

THANK YOU!

Saturday, March 8, 2014

Olivia Wins March Madness Essay for Donation

Update on Ceil - we are done with radiation and expect to start up at Dana Farber in two weeks for the clinical trial.  Where we thought we needed to get an MRI showing that there was still disease, they drug company did not require this and we are doing the trial.  We will be in Boston on Wednesday for a consult with the neuro surgeon who will place the port and change out the shunt.  Ceil is very tired from the amount of radiation they gave her over the past month.  Please understand that she needs her rest, so if you call and she doesn't pick up or call back, she's resting.

At the middle school, they have their own March Madness each year and it's for the kids to raise money and have some fun playing basketball.  I received a call from the teacher who handles March Madness Friday morning to let me know that they had picked Olivia's essay as the winner!  Each student that wants to, writes an essay as to why they want the donation to be made to a specific charity.  I'm going to share it here for you all to read.

Also, it's Olivia's 12th birthday today.  A huge thanks to all that sent birthday cards to her.  Especially the aunt that put it together - Carla RN.  She has been walking around the house with a smile from ear to ear.  Through our three plus years of dealing with Ceil being sick, the amount of love and support that the community that surrounds us has provided is staggering.  I always complain that I want to move away from the cold winters, but I know the reason we all stick around in this miserable part of the country - it's because of the community we all belong and it's because we know spring is right around the corner.

Here's Olivia's essay that will be donated to Ava'sMom for the Relay for Life.  If you would like to donate to the cause after reading Olivia's essay - click here

There is also a big pasta dinner being put on by the Lion's Club of Berlin on Saturday, April 12th from 4:30 - 7:30 at McGee School.  The event is to raise money in Ceil's name to donate.  Ceil and I would love to see you all there.  For more information or to buy tickets with a debit or credit card through the Berlin Little League website by clicking here.

2/10/14



Dear March Madness Committee,
I really would love if you could donate some money to Ava's Mom Army. It’s a Relay for Life team that’s run by me and my father.  All the money that the team and any other teams collect is all donated to the American Cancer Society.
I participate in the Relay for Life, because when I was about nine my mother was diagnosed with breast cancer. She was in the hospital for a long time having surgery done and recovering. I missed her so, so much and cried a lot at night. I missed having her with me and her sweet voice always asking me if I had done my homework or cleaned my room, even to tell me to stop asking her questions. I only had my dad for a long time. About a year after she fully recovered I thought it was over.  I thought that I would still have her with me all the time, in August in 2013, we went on a vacation to Myrtle Beach. My mom was starting to feel sick and had terrible headaches. At night I would be able to hear her throwing up in the bathroom. So we decided to go home. My dad had dropped me off at my cousins house, along with my brothers and sister. He had said that he was taking my mom to the doctor to get checked out. That night I didn’t sleep a wink. I knew it was happening again. I was scared. The next morning my dad picked us up and said we were going to see mom. She was in the hospital. When I saw her I cried. It wasn’t fair that my mom had to do this twice. I felt so bad. My mom had a tumor in her head and needed brain surgery. She could have died at anytime during the surgery and I wasn’t there to say I loved her, I was really scared. She was in the hospital for three months and had to go to rehab for physical therapy for another month or two. My Nana had to fly down from florida to take care of my family. I still felt awful for her and this is how I can help her.
If you guys pick the Ava’s mom army it would mean the world to me and especially to my mom. She would be so proud of me if I could win money to donate to the relay for life! I really want to win this because the more money that the American Cancer Society gets, the more scientist can research and find a cure. I just don’t want someone else to go through what my mom had to go through, or anyone not having a relative or a friend at home with them. It really hurts to see people in pain so pick the ava’s mom team so no one will go through this again. We could have a healthier, happier world. Let’s celebrate more birthdays and a longer life.

Sincerely,
Olivia Biscoglio



Ava’s Mom Army
 

Friday, February 28, 2014

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