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Vinny’s Story

Vinny was born in October of 2003. He was born with a severe Cleft Lip, Cleft Palate, and Pulmonary Stenosis (heart defect). After many surgeries and a few complications, Vinny was diagnosed with Rhabdomyosarcoma on February 15, 2008.

On February 2, 2009 he was declared cancer free, and stayed cancer free for 9 months.    RELAPSED  11/6/09 in the lung.  RELAPSED for his 3rd battle in October 2011 in the orbit and sacrum.  Relapsed 12/11/12

After 4 years of several cleft-related surgeries, Vinny had a Velopharyngeal Flap surgery in October 2007 to help his speech. Two weeks ago Vinny developed what we thought was a sinus infection, ear infection, and severe Sleep Apnea, which we thought was a side effect from his last surgery. We made a few trips to the Pediatrician, ENT, and to our regular Craniofacial Team. After a scan test at the hospital and another surgery to take down the Velopharyngeal Flap, a tumor was found in the base of his skull, blocking his nasal passages. Part of the tumor was removed, and he was diagnosed with Rhabdomyosarcoma. On Friday he had surgery again to insert his Portacath, and they did a spinal tap and bone marrow test to see if the cancer has spread to other places. We should find out tomorrow afternoon what the results are and then we start Chemo in a few days. Please keep Vinny in your thoughts and prayers and we will update you all soon.

After 11 months of treatment, Vinny was Cancer Free for 9 months.  Vinny relapsed in his lungs on 11/5/09. Relapsed again in the Orbit and Sacrum in November of 2011.  He fought all 3 tumors, until August 2012, when after a false "end of life" scare, he was considered "stable" instead and was off of treatment, stable, for 4 months. 

Vinny relapsed for a 4th time, in December 2012, with 5 new tumors in the Spinal Column.  We have done our best to help him survive.  The Oncologists have done all they could do.  Vinny was sent home on Hospice on Dec. 21st, 2012.  He earned his wings Feb. 18, 2013.

During our "Cancer Free" months, we formed a 501c3 Non-Profit Org.  This Foundation is strictly for the other children on our Pediatric Oncology Ward at Brenner's Children's Hospital still fighting this battle.... not for Vinny.  To view our website and find out more:  www.kidsofchildhoodcancer.org 


 

Latest Journal Update

Easter and more


“It's so curious: one can resist tears and 'behave' very well in the hardest hours of grief. But then someone makes you a friendly sign behind a window, or one notices that a flower that was in bud only yesterday has suddenly blossomed, or a letter slips from a drawer... and everything collapses. ” 
― Colette

It is Easter. 5 new pictures have been added to the "pictures" One of Vinny's favorite holidays.  To him, Easter was about innocent child-like things… chocolate bunnies,  marshmallow peeps, BUNNY CAKE… we would volunteer at Church every Easter.. .we would help fill the Easter Eggs for the Easter Egg Hunt and the Church Festivities….. and some of the Church members still laugh as they remember Vinny sitting there, stuffing the Easter Eggs at Church, saying "one for them… one for me…" and for every easter egg he would stuff, he would eat a piece of the candy… 

We would go to Church every Easter and then we would come home to gifts, easter baskets left from the bunny, and then would have an outside easter egg hunt in the back yard. Vinny was so competitive that he had to get the same amount of eggs as Desiree… It was so much fun.  At my current job at World Market, we have a section of Easter candy, baskets, chocolate, decorations, and it breaks my heart when the children come in and grab the candy, knowing that Vinny is no longer participating in the Easter Egg Hunts.. that Desiree no longer believes. That Easter will never be the same again.  Desiree is singing in the Easter Cantata at Church tomorrow but does not wish to participate in other Easter festivities… and that innocent part of childhood is gone.  And maybe it only hurts me as a Mommy to see it over. Yes, Easter is symbolic for the Religious aspects, but still, I can't stop missing the Vinny part of it all.  He LOVED the cake, the candy, the hunts, the bunny ears… the fantasy. I remember one Easter when he insisted on the Best Bunny cake ever.  I, for the life of me, am helpless in the baking department.  My wonderful sister, Susan, came down from Maryland that year at the spur of the moment and helped Vinny bake an Easter Bunny Cake, at the same time that a caring bridge reader had one professionally designed and delivered to our doorstep.  He was thrilled and amazed. It is the littlest things in life that count at times.  

Those moments seems done. Tomorrow Desi is singing in Church and then I will take her to a movie and out to eat dinner… no hunt… no bunny… and I think I miss it more than anyone. If only Vinny was here.

Last week, I drove for my first time ever to our Safe Haven Beach Condo alone with Desiree.  Twice a year, it is mandatory that we deep clean for the season… we dry-clean the linens, we change the fire extinguisher, we repair the damages done throughout the season. It is work.. but happy work for the future families that are sent to our condo.  It was great to go down again, I have not been since last year.  I read the Guest Book messages from the cancer families we have sent and each and every one of them brought tears to my eyes and cheeks…… amazing stories from our cancer kids who go down for a respite vacation from their harsh treatments…. kids who escape from chemo, pokes, pricks, transfusions, radiation and can be KIDS for a week… or parents who go down after losing a child, who feel the Angels there, watching the birds, the dolphins, the crisp love that surrounds the condo.  It is truly a "Safe Haven".   Due to outside circumstances, I had not been comfortable driving on the highways for a number of years, and out of 3 years of owning the condo on Topsail Island, I had never driven there alone.  This time, I did, and was able to conquer the fear of driving.  It was amazing.   There was a lot of work to be done.. Bed Bed covers to replace, cleaning, the fire alarms, the extinguishers, the furniture, certain items replaced that were stolen or damaged.. but it was still an amazing trip.  Desi and I did some one-on-one bonding, spent one day at the beach, one night at our favorite restaurant, spent one day at our favorite coffee shop/ book store on Topsail, and the rest of the time preparing our condo.  I thank God for Tina and Bryan (Lola's parents) who also came down a few days later to repair the stove, fire extinguisher, and alarm, which I had problems with.   Thank you SO much for your help!!!

Right before our trip, our littlest cancer warrior, CC Houck (Sienna) passed away on our ward and we missed her services on Sunday…   Please send heartfelt love and sympathy to Tom and Michelle, as they face their hardest days ahead… CC was one of our favorites… I hate to say favorites… but one of the closest children to us… one we knew the best.. one who fought beside Vinny and relapsed after his death..  it breaks our heart each and every time we have another Angel…. and thank you to everyone who has donated in her memory to the Safe Haven Condo….

Last time I wrote a caring bridge, I asked if anyone locally knew of a full-time position as Administrative Assistant.  I had received several responses, applied at several positions and had not heard back…. I have not been in an administrative assistant position in 15 years and at times the job market depends on who you know, or what your degree is… I have spent 15 years as a stay-at-home Mom of two special-needs children with medical issues, 7 years in the cancer world, 6 in the non-profit world, and no complete college degree or legitimate career.  I am, foremost, a Mommy and Cancer Advocate. I had been working since September at World Market in Winston-Salem as Lead Gourmet Sales.  Hours were cut again and again, and I was forced to look for a full-time position…. I thank the friends and readers who sent suggestions and job market tips.   A few caring bridge readers tracked me down and called my old home phone number, and I did not receive the complete messages / details due to outside circumstances.   If you are trying to contact me,  please know that my phone number and address have now changed…. if you would like them, please contact me at support@kidsofchildhoodcancer.org 

I was able though, to accept a full-time position at the Loop Pizza Grill in Kernersville that fits every need I have!  After being in the restaurant business for 28 years, and being involved in the Loop Restaurant Kids of Childhood Cancer nights for 6 years, I have decided to accept a full-time position at the Loop!!!   I am very excited about this new job prospect!!  I gave a notice at World Market and will be working at both positions for the next few weeks before working my full-time position at the Loop Restaurant!! I have been blessed.

The truth is….. when Deisree was born at 29 weeks (almost 3 months premature with several medical issues), the night before they took her out of my belly in order to save my own life, the neonatologist came into my room the night before and told me Desi had a 60% chance of living… and that 70% of couples who give birth to a premature infant do not make it.  My reply, in my medically screwed up drug-induced state of mind was "I don't care. Get it out." and we all survived…  Desi lived and thrived… our marriage grew… we made it.
When Vinny was born 3 years later with a cleft lip, cleft palate, heart defect and other craniofacial issues, we were also told the same thing… his deformities were a shock and complete surprise to us as parents as well as the doctors.  We were told that Vinny was the 700th baby… every 700th baby is born with a cleft lip or palate… we fit the 700th mold….  we were told again that 70% of couples who have "deformed" children do not make it.  We did.

four years later when Vinny got cancer and start Radiation, Dr. McMullen (our Radiation Oncologist) pulled me aside and said that 80% of couples with children with cancer who endure radiation do not make it. We did. 

90% of couples who go through the death of a child, do not survive a marriage if they do not cope with grief, death, conflict together… and we haven't.  Out of 5 years of living at "Camp Brenner", I was the sole parent who spent the night at the hospital… ever… on 9 weeks of Hospice, I was the sole caregiver… and after Vinny's death, a divide was created.  

The truth is, we are separated. 
It is okay…. we are healing.. Please refer any comments or questions to support@kidsofchildhoodcancer.org

Speaking of the foundation,  our upcoming Walk 4 our Kids is going strong!! If you would like to donate, form a team, join a team, or SPONSOR, please refer to our site:  www.walk4ourkids.org  

We are having a VOLUNTEER MEETING on April 25th at the Loop… please e-mail for details and volunteer opportunities!! 
The Loop Pizza Grill fundraisers continue on the 4th Thursday of Every Month.
June 6th is our 4th Annual BIKE RUN!!

Please keep in your heart and prayers every child and adult we know battling cancer and other ailments….. 
Please keep our family in your prayers as we find our new way… our new future… 
Thank you again for reading!! 











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Comentarios

35 Comentarios

Sarah Nixdorf
By Sarah Nixdorf
Thinking of you.
Www.caring bridge.org/visit/sarahnixdorf
Debbie Boyd
By Debbie Boyd
Your strength is amazing!! Prayers are being sent to you as you travel the new future. God has blessed me with getting to know someone who is such a believer of all things possible even if only through your updates. So for that I am very thankful in the ways you have opened my eyes and heart.
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Kristie Campbell
By Kristie Campbell
You are inspirational to me. Praying for you!!!
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Nigel Burrell
By Nigel Burrell
You are all covered by my prayers for health and happiness. Sending happy vibes from the U.K. and never forgetting Vinny.

Nigel xxx
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1 person hearted this
marilyn bergagnini
By marilyn bergagnini
SO SORRY TO HEAR OF YOUR SEPARATION BUT KNOW THAT YOU ALL ARE IN MY PRAYERS.....I WILL NEVER FORGET YOUR BEAUTIFUL WITTY SON VINNY!!!! ..HE FOUGHT SOOO HARD ANDWAS SO COURAGEOUS...GOD BLESS YOU ALL AND HUGS..
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Barb Zarzycki
By Barb Z
Sorry to hear about you and Charlie not making it. You and Desi are in my prayers. I am sure you will make it as you are a strong lady. Desi is a great young lady and she too will make it.
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Becky Pulley
By Becky Pulley
thinking of you with love and prayers my friend. You have my email and phone if you should need me - I am here Becky
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julie mayle
By julie mayle
I love that you are honest about the "kid" part of holidays. WE all know the reason for EACH season....but the innocence of the child and the magic they bring is what memories are made of!!! My prayers continue daily for you, your family, and so many others.
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Angie Barron
By Angie Barron
Dear Sarah. Thank your for your update. That sweet boy. Vinny in rabbit ears. What a precious little boy. This is our fourth year without Skyyler. I soaked in the words that opened this share. So true.
I havnt been on Caring Bridge much lately. I came on today to update because its been a while and say you had posted. I don't know why I cant seem to get but a few notifications.
But so many children keep dying from cancer. I post everything that comes my way on my facebook page about childhood cancer to try to make others aware that childhood cancer is NOT rare. I so admire you for your fundraising and Having Safe Haven for families. I hope to help somehow someday. So far I am just trying to put one foot in front of the other.
Desiree is getting so grown up. My girls are 30 and almost 28 and my granddaughter is 8. Time flies weather you are having fun or not! I am so glad you had the weekend with her. And I send my best wishes for all the happiness you can find in all the changes that this journey brings.
I am wondering too if my girls and I would be able to take part in Safe Haven? I have read about this before in your posts but for the first time thought how wonderful and healing that place must be after reading your update. My email is angie.barron57@gmail.com
Thank you again for updating. I am always glad to hear from another mom who has lost a huge piece of their heart and knows how I feel.
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Teresa  Brotherton
By Teresa Brotherton
Sending love and prayers your way
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