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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

Vinny's 12th Birthday and Life Now

**  New pictures of Vinny's previous birthdays are posted!! 

I have not written for ages partially due to the lack of knowledge of what I should say, partially due to the complete sadness it takes to remember… partially due to the lack of time my schedule holds. But I miss writing, I love the readers who have written to ask me to update, and this has always been my release. I am back.

Vinny's 12th Birthday is approaching on Friday (Oct. 9th) and it holds extreme memories and emotions:  from his 3rd birthday that we celebrated at a Rest Stop in NC with a Capri Sun and Cupcake on our move the day before we arrived in North Carolina… to his 5th birthday that we celebrated at the hospital with Spider Man and his Oncology Staff (pictures posted), to his last birthday celebrated at our Church, when he had been cancer free.  Vinny LOVED birthdays and celebrated about 12 fake birthdays a year.  Sometimes during his treatments, he was known to suddenly exclaim that it was his BIRTHDAY and we were forced to bake cakes and sing Happy Birthday at midnight on days that fell months before or after his "weel" birthday.  He loved birthdays and LOVED cake even more!!  More birthday pictures are posted on his FB post: Vinny Defies the Odds and kicks cancer in the fanny:  https://www.facebook.com/search/str/Vinny%2Bdefies%2Bthe%2Bodds%2B%2526%2Bkicks%2Bcancer%2Bin%2Bthe%...

I often run into Vinny's friends from school who are now in 6th grade.. he would have been in Middle School with them, and it hurts that he is not.  
Halloween is approaching and it was his favorite Holiday…. Halloween costumes are covering the sales floor at Walmart and Target, his favorite stores.. and I wonder what he would have been this year… probably still a Star Wars Character.  

After that is Thanksgiving, another favorite, followed by December which brings back memories of our favorite Christmases, his Hospice Days, and his death… followed by New Years, Valentines Day that he always spent with Lola, and finally his Anniversary of Earning his Wings.  The season continues without him. 

Last week, I was asked to be the Keynote Speaker for the "Because We Care" CareNet conference at our hospital.  Out of 3 parents who were supposed to speak about the life our of child and the days at our hospital, and what we loved and what they could improve on…. I was at the only parent who could emotionally show up.  I wrote a 14 page speech on Vinny's life, his care, his hospital world, and death, and delivered it over a 3 hour period in front of caregivers who did and did not know his story.  There was not a dry eye in the room… and I was grateful for the opportunity to come back and share.  The hospital and our caregivers at Brenner Children's Hospital is still where my heart lies. 

We miss him. We still feel him. We have so many happy and sad memories… his story was absolutely amazing, terrifying, horrific, yet such a complete blessing to all of us who experienced life through his eyes.  

Desi is our main focus now, besides my foundation… Desi is healing in a way that only she can.  It has not been easy.  She has fallen victim to many issues that are normal to the teenage high school years, and some that are not.  She has thrived so far with various help during this current school year.  She is under the care of 3 doctors, including our beloved Pediatrician, Dr. Ricketts, Jeff U from our ward, and a new psychiatrist that is amazing in coping with life issues and grief.  Unfortunately, her knee blew out during a Cross Country Track meet and is now under the care of PT hoping it heals in it's entirety so she can run again next year.  She has the strength and wisdom to come through just fine with the wonderful care of her doctors.  Running is her outlet and one of the main favorite things to do in her life, and I hope and pray she will soon be able to continue. 

My Life
Life has been very hard for all of us.  I have always been very raw with my emotions for 8 years, and with 14,000 caring bridge readers. I strive for honesty, love, faith, and healing with and through my support system.  Many have asked questions, many rumors are swirling… and I hope to set things semi-straight.  80% of couples who have lost a child do not whither the storm in the aftermath. However, there were many issues we faced before, during and after Vinny's death.  Vinny's death did not cause our separation, ultimately.  There were private issues before and after, that were irreconcilable… yet there is HOPE. I needed to set the record straight because of my raw writing and honesty and faith during my 8 years of Caring Bridge support. Last February, I decided it was best for my future, and my daughter's to separate and although it was not a complete surprise due to previous talks, I did leave for multiple reasons during the day without notice due to multiple circumstances.  I took 3 pieces of furniture, and privately obtained an apartment and lawyer. It had not been easy with failed Grief and Marriage counseling months prior. All of our worlds were upturned. 
I have been working double shifts at the Loop Pizza Grill in Kernersville for 7 months who has shown our foundation support for the past 6 years, and me support for the past 7 months.  They are amazing and still work around Desi's schedule.  Because of the hard separation and lack of mediation and financial support, things in life were put on hold and revolved around my work schedule and Desiree.  
Around Father's Day week,  Charlie and I became "friends" again, and he said that Vinny came to him and told us to reconcile.  I have several months of my lease left and with much hesitancy, we chose to become "friends" again and see where life leads. We talk daily and have seen each other as a family on several occasions seeing where life takes us.  That is the best explanation that I can explain at the moment. God knows and Vinny knows what direction we shall take from here. We are the only ones who together completely understand life during and after Vinny.  We are the only ones who really understand our Vinny family memories together… we share that and it is hard to let go.

I am still very involved in the other children with cancer, with our Oncology ward at "Camp Brenner" and with my foundation: Kids of Childhood Cancer www.kidsofchildhoodcancer.org . In the last several months we have had our 5k in May, raising over $28,000.  We held our Bike Run at Smokin Harley raising $3,000,  I have been in charge of the Honored Kids table last weekend at St. Baldricks in W-S, raising $50,000 for Childhood Cancer Research Funding.. and more. BB&T had adopted us and held a Food, School Supply Drive, and Toy Drive to help us out! LEGO company is in the works again for a new grant, and more donors have donated.  We are completely grateful that this continues.  My heart is still 100% involved.   Although I am exhausted working mostly double shifts, I do my foundation work between and after shifts, with much reliance on my Vice President, Shannon Melton, and my other Board Members of our foundation.  The foundation was formed almost 8 years ago FOR the other children battling cancer at our hospital,  ABOUT all of the children and will always continue to be so.  The foundation is thriving, and still giving back to hundreds of children.  We have sent multiple families to the Safe Haven Beach Condo this year, it is booked with kids through the end of October.  We still stock the Microwave Room, Help pay the financial bills, help buy the school supplies, stock our ToyBox in clinic and hold multiple events.  

This Weds, October 7th is our LEGO Therapy Night for the kids on our ward. Mark from the LEGO store is coming up with 70 lbs of brick to free play with the children!

On Saturday, Oct. 10th, we are holding our 5th Annual Fall Carnival at Core Fitness.  We are raffling off our Beach Condo for a 4 night stay for $1 per ticket or 3 for $5.  This is open to EVERYONE, local or not, no need to be present to win.  Please e-mail support@kidsofchildhoodcancer.org for details!  I work doubles most days, but have a break from 2-5 PM and after 10 PM for replies by e-mail.https://www.facebook.com/events/1508099259508693/

We are also holding our Brunswick Stew Sale currently through Oct. 30th:  - $6 per quart at Core Fitness!
Our FB page:  Kids of Childhood Cancer has all details!!

I will update again soon… very soon… and I thank every reader who still follows, who still cares, who still writes, who still asks.  

During Hospice Vinny and I had several long talks… which always ended in "I will be okay".  And we all will… 

Please send prayers to the several families on our ward who have faced relapse… and especially to those we have recently lost their children.
Please e-mail me at support@kidsofchildhoodcancer.org with any questions…
I need to run to bed, and promise to update soon!! 

THANK YOU AGAIN to all who have been there to support us, love us, and continue to remember Vinny and all of the other children battling childhood cancer. I promise to update more often, and very soon! THANK you to all of you who have reached out to us and asked us to write and share.  You have been our backbone throughout Vinny's short life and the almost 3-years since he entered Heaven.  My thoughts are also with you.   

204 people hearted this


68 Comentarios

Tracy Heiman
By Tracy Heiman
Dear Sarah,

Sending you the biggest love and hug that can come from Colorado… You are an amazing mother, person, wife, advocate, inspiration, caring, loving woman I know. I will continue to pray for strength and peace in your lives… one step by step….Love to you each and every day.. Thank you for sharing… xoxo
2 people hearted this
amber lawson
By amber lawson
sending hugs and prayers
1 person hearted this
Tina Lovings
By Tina Lovings — last edited
Happy Birthday Vinnie🎂 Love you Sarah! Keeping you and your family in my prayers always ❤️
1 person hearted this
Stacy Wolfe
By Stacy Wolfe — last edited
There is ALWAYS hope :)

Much love and prayers sent your way (((BIG HUG)))
1 person hearted this
lisa olin
By lisa olin
Prayers for all of you.
1 person hearted this
Catherine Madsen
By Catherine Madsen
God's Peace to all of you.
1 person hearted this
Jan Menary
Oh Sarah, how I hope and pray that things work out for you as a family. Good luck to Desi in her recovery and the Happiest Heavenly Birthday to sweet Vinny 🙏🙏🙏🙏🙏🙏🙏🙏 love your friend Jan
2 people hearted this
By Doug Westlake
HAPPY, HAPPY BIRTHDAY, Vinnie!!! Prayers for your family.
1 person hearted this
Amber W. Eng
By Amber Eng
Love you Sarah 💖
Kim Walton
By Kim Walton
So glad to read the update! I think of you and Desi often.