Tuesday, May 13, 2014

May 13 - First MRI Results

We are up at Dana Farber today for Ceil to start the second cycle of the clinical trial.  With this cycle, we will come to Boston only once per week for a treatment.  At the beginning of each cycle they will do an MRI to see how the treatments are working.  So today is the first big day to see if the trips and the hours invested in Boston are paying off. 

Based on the way Ceil has been the last couple of weeks with more energy, better memory and the ability to walk around with only some assistance to make sure she doesn't take any quick rights into a wall, my money was on it was working and getting better.  But even with these signs, the scan would be the actual confirmation that the drug is working. 

I am glad to let you know that the scans showed a positive improvement in both her head and spine.  While there is still work to be done and the continuation of the treatments will hopefully continue the depletion of any active cells, this is the best news we could get today. 

The advances they have made in cancer research over the past twenty years is what we owe this good news to!  And we got the good news the week of the Relay for Life, a cause that raises money for the American Cancer Society.  Whatever we need to do as a community and a society to keep the research going until NONE OF US needs to worry about cancer in the future is when we can stop fighting.  There's been great support of the Ava'sMom team and other teams in the Berlin Relay - let's keep it up!  Donate here

Thanks everyone!

Tonight, kiss your loved one, let them know you love them and raise a cocktail in honor of our great news!!!  Pictures of cocktails are welcomed at vbiscoglio@gmail.com or on my Facebook page.

Wednesday, April 30, 2014

Latest CT Scan

It's been a while since the last post and I wanted to share some good news!  Ceil had her latest CT scan today on her neck down, organs and such...and it came back clear!  That is a relief with the nausea that started a little bit.  We'll take it.  The trips to Dana Farber continue and the treatments continue to get easier for Ceil to handle.

The last two times up to DF Ceil has walked in instead of using a wheelchair which is really great to see.  Yesterday we had a few appointments on different floors so we had a lot more walking to do than normal and still was able to walk out instead of taking the easier way out with a ride.

A couple weeks ago the Berlin Lions and Lenny Tubbs held the Pasta Supper.  There were over 800 tickets sold and over 100 raffle prizes donated.  I cannot thank Lenny, the Lions and everyone that showed their support.  Remember 100% of the profits that we do from any of this go to the American Cancer Society.  We are doing our part to raise as much as possible to raise money to find a cure for Ceil and everyone else out there so we can end what a family goes through when a loved one is diagnosed with cancer.

Theres a few weeks left to the Berlin Relay for Life.  Let me know if you are interested in joining the squad.

Thanks for checking in!

Vin

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!