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!
Monday, March 24, 2014
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 -
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.
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
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
Friday, February 7, 2014
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 -
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
Friday, December 6, 2013
MRI Results
So I received the results today from the Radiology Oncologist from the MRI done yesterday to follow up on the three weeks of radiation Ceil had after the surgery. I am glad to let you know that it came back CLEAR!! The two very small specs they were concerned about are gone and the area that surrounded the tumor are clear. This is the best news we could have received! We'll have to watch things over the coming months and years due to what popped up over the last year, but we'll take it.
So this weekend, raise a glass to toast the good news and say a prayer for Ceil that things will continue to get better for her.
Happy Holidays!
So this weekend, raise a glass to toast the good news and say a prayer for Ceil that things will continue to get better for her.
Happy Holidays!
Tuesday, October 22, 2013
October 22
Time for an update!
My mom, Karen T, was finally able to depart the state of CT to go down south to sunny Florida as Ceil continues to get better. To state that her help is what got us through a tough time is the understatement of the year. We couldn't have accomplished what we did without her and I will be forever grateful. We'll see her soon as Ed and Kar come back before Turkey Day and stay until Santa comes but I believe beat him back to Florida (it's a little known fact that Santa, in fact, does not stay in the North Pole during the winter anymore. With the price of heating and the Elves unionizing to get Obama-care, he's resorted to the possibility of shutting down the biz)
Like I said, Ceil is getting better. I think it is definitely taking more time than we both imagined but at least the small steps are in the right direction. She finished up radiation therapy last week so that ends her daily trip to Farmington.
Since then, she has had another scan neck-down to verify no other tumors or lesions have developed which we are elated to let you know came back 100% clear. In a couple of months they will do another MRI to check her head to see how the radiation therapy did.
Ceil is going to have another power port put in on Friday. This will be used to give her herseptin (you will notice alot of mispelled words in my blogs - I'm not a Doctor. Medicine names tend to get mispelled by me. I don't feel bad though, the darn spell checker hasn't figured them out either). The herseptin is used as a preventative drug to deter any cancer coming back in the future. Ceil will get a 1/2 hour bag thru the port every third week. The port just makes it easier due to Ceil's small, deep veins.
So all in all, a good post for you to go out and celebrate!
Thanks for checking in.
Vin
My mom, Karen T, was finally able to depart the state of CT to go down south to sunny Florida as Ceil continues to get better. To state that her help is what got us through a tough time is the understatement of the year. We couldn't have accomplished what we did without her and I will be forever grateful. We'll see her soon as Ed and Kar come back before Turkey Day and stay until Santa comes but I believe beat him back to Florida (it's a little known fact that Santa, in fact, does not stay in the North Pole during the winter anymore. With the price of heating and the Elves unionizing to get Obama-care, he's resorted to the possibility of shutting down the biz)
Like I said, Ceil is getting better. I think it is definitely taking more time than we both imagined but at least the small steps are in the right direction. She finished up radiation therapy last week so that ends her daily trip to Farmington.
Since then, she has had another scan neck-down to verify no other tumors or lesions have developed which we are elated to let you know came back 100% clear. In a couple of months they will do another MRI to check her head to see how the radiation therapy did.
Ceil is going to have another power port put in on Friday. This will be used to give her herseptin (you will notice alot of mispelled words in my blogs - I'm not a Doctor. Medicine names tend to get mispelled by me. I don't feel bad though, the darn spell checker hasn't figured them out either). The herseptin is used as a preventative drug to deter any cancer coming back in the future. Ceil will get a 1/2 hour bag thru the port every third week. The port just makes it easier due to Ceil's small, deep veins.
So all in all, a good post for you to go out and celebrate!
Thanks for checking in.
Vin
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