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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

New Beginnings

"If ever there is a tomorrow when we are not together, there is something you must always remember.  You are braver than you believe, stronger than you seem, and smarter than you think… But the most important thing is even if we are apart, I will always be with you…." ~ Winnie the Pooh

After several weeks of yucky winter, ice, and snow, it is finally SPRING!!  Even though we love the snow and it has beautiful memories…  even if Vinny was really sending it as he promised he would, even I was finally begging him to stop. No more Pranksgiving!! Today was a gorgeous day. I knew it was spring when the birds were chirping, and one splatted a Vinny gift on my car window.   I knew it was spring when I was opening my balcony door this morning, and saw a wasp… inside my home.  Normally, I would have freaked at the sight of it, but I took a breath and repeated Vinny's words on Hospice:  

"Mama, are Lady Bugs good or bad? 
They are good."  He promised to come back as the birds, the bird poop, the ladybugs, the rainbows… He then said he would come back as the Scorpion Whisperer.  "What is a Scorpion Whisperer?" I asked.  Vinny said "I will be a Scorpion Whisperer who protects you from the wasps, the bees, hornets, snakes and the scorpions."  

So, I opened my balcony door, and flicked the wasp outside, and then he slowly crawled away without a sting, without a fight.  Little signs are everywhere.  Desi and I had a great talk last night.  Not a sad talk, just a "wondering" talk.  Vinny would be turning 12 yrs old soon, Desi, 15 yrs.  She wondered aloud if he would have liked her new friend, Sam.  If Vinny would have been able to go bike riding with her friends in the neighborhood, gone to the creek, run through the mud  at the lake with them… if he would have finally been able to sit in the front seat of the van and fight over "shotgun" like normal kids. If he would have been cancer free and able to live the life he was supposed to have lived. 

Yes, we think of Vinny and not a day goes by that we don't remember him and long for his touch, his smell, his sweet soft kissable cheeks, and little voice.  But we are finding happiness in new beginnings.  
Today I was asked to attend the Wake Forest University "Wake N Shake", where we gave a speech on Vinny and his cancer journey 2 years ago. I was asked to come back today for the 10th year anniversary of the Wake N Shake that consists of a 12 hour dance marathon that raises money for Cancer Research in our local area, in Memory of Brian Picollo, a student at WFU who passed from cancer as well. I was told that 10 of the families who have spoken in the past at the event were asked to come back to be honored on stage.  I was asked to give a speech in front of 700+ students.  When I learned a few days later, it would be 1200+ attending this year, I was in full panic mode.  I was thankful today that Josh's Mom, Denna, from our ward and his sister, Jen, were also there. I was thankful that we were honored without the lengthy speeches… it was a beautiful day.  One of the Professors in charge told us that they expected to bring in $200,000 tonight for our very own Hospital's Comprehensive Cancer Center at Baptist Hospital!  
And as I drove through the campus for the first time ever by myself, I saw the "life", the beauty, the warm spring day, the students jogging, and I felt a rekindled HOPE. 
Life throws us all surprises that are outside the realm of our desires and control.  And they have thrown us many lately.   But when life is shattered into a million little pieces, you can either stare and break yourself, or pick up the pieces and glue them back together into whole new design. 

I have made some drastic lifestyle changes lately, that have been very hard… but will open up a future of possibilities and positive outcomes. Desi is at the age where she needs direction and positive influences.  She has been struggling with school and some decisions. But she has a wonderful support system. She has the greatest support through her Hospice Teen group, our Church Choir,  her School Chorus, her new Lacrosse Team, and some wonderful friends at school.  She started Lacrosse a few weeks ago and plays Attack.  If only you could all see her… when she came home with mouth guards, eye googles and a huge net, I was in panic mode… when she hurt her tendon during the 2nd practice and had to see the Sports Therapist and buy a leg brace, I was in panic mode.  When she basically told me to suck it up, that she would run with a broken leg if she had to, I let it all go and turned it over… and she has thrived.  In a few months she will be 15 yrs old, in a few years… 18… and then after that, she will make her own life, hopefully in college in Boone.  And we as parents will make our way, while letting go, once more. 

And in my "new life", since Vinny earned his wings, I am still working hard with all of my members on our foundation and helping the children battling cancer.  I had also picked up a part-time job in sales at World Market last September, and last month I was promoted to Head of the Gourmet Department with more pay and more hours.  I love the store, I love my co-workers, the job, the work… but hours were just cut for all employees, which was said to be due to the new Obamacare appropriations and the "Affordable Care Act" and is hurting the employees at many places.  With other changes in my life, I need to support myself more with a full-time job with benefits.  * I am now looking for a full-time position as Administrative Assistant or Secretary, or front desk clerk, or Doctor's office,  in a position with benefits, in the local triad area.  I love people and have 25+ years of experience in multiple positions:  retail, retail management, restaurants, restaurant mgt and ownership, customer service, accounting, but most of all Administrative Assistant and Secretarial positions are desired.  If anyone in our local area knows any position available in the field, please reach out to me. 

I am also thinking again of going back to Forsyth Tech and finally embarking on my Non-profit Leadership and Management degree to boost our foundation yet again.  There is so much to learn. 

Eight years ago Vinny and our family was blind-sided and thrown into this unknown, unfair, world of CANCER. I started my caring bridge site just to update friends and family on Vinny's cancer journey without repeating to a hundred people what happened at the hospital that week or how he was fairing with his cancer.  The community, especially our Church (Sedge Garden UMC) stepped up to shower us with love, support, and fundraising for our son. The journey also opened my eyes to the families in our very own backyard who were not getting the community support that we were.  It opened my life to cancer groups, my World-Wide Rhabdo List Serv, the life of Research and Oncologists, and death, and suffering… and HOPE.  It opened my life up to thousands,  LITERALLY THOUSANDS of supporters and new friends I had never heard of or dreamed of.  One such "new friend" reached out to me through a St. Baldrick''s connection, and asked me to do her a "favor".  She was training as  a Life-coach and asked me to write an essay about my "dream job".  I had no idea at the time what my dream job was.  I was happy being a simple housewife and mommy.   But then I walked into the Food Lion on Union Cross Road one September morning, and saw PINK advertised everywhere for Breast Cancer Awareness month, one month early.  It was really September - Childhood Cancer Awareness Month and the color for Childhood Cancer is GOLD.  And I realized about the lack of funding, the lack of awareness, and about the hundreds of children fighting for their lives on our own ward that had no support.  
So I went home and wrote a 3 page essay about a "dream foundation" that would support these children financially for my new friends' "homework".  After sending it to her, she passed it on to others, and everyone wrote to me and said it was a wonderful essay, and what was I going to do about it?  I said "Nothing.  It was just an essay."  When pushed and encouraged,  I was told I needed to start that dream foundation, so 6 years ago, I did.  Based on my essay which has thrived and turned into the Kids of Childhood Cancer Foundation we are today.  FOR all kids, ABOUT all cancers, not just Vinny's.   It was meant to help the other children battling cancer, and that is still where my passion and heart lies.  And now, even when Vinny is no longer here on Earth, we are helping hundreds of children, supporting them emotionally and financially, and helping build memories while they battle the biggest battle of their lives that no normal child should have to endure.  And we are still growing, still thriving, still helping, and still seeking all volunteers who would like to help.  


Speaking of our foundation, our Pizza Loop Fundraiser Night is this Thursday, March 26th at the Loop in Kernersville! 1030 S. Main Street, from 5-9 PM.  PLEASE come, have dinner with us and support our kids battling cancer!!
  We also  want to thank Glory Street Quartet for the wonderful concert they put on at Sedge Garden United Methodist Church a few weeks ago.  Money was raised for the Kids of Childhood Cancer Foundation, the Chris Holder Scholarship Fund, and Wilderness Trail.  The concert raised over $2100 to be shared with all 3 wonderful foundations.   Thank you to David Simmons,  Tommy Holder, Thomas Holland and Steve Holland from the bottom of our hearts.  Thank you also to our supporters and Church family who came out to attend the concert!! 
Thank you also to Smokin Harley Davidson and all of our supporters who attended our Chili Cook-off last Saturday!!!   It was held inside due to the rain,  and I think it was one of the best ones yet!!   The chili was amazing, the vibe was so positive, and we had some amazing supporters!! We raised $3,018 for the children on our ward currently battling cancer!! THANK YOU so much for all of your support!!

That brings me back to today, the glorious day, the spring air… I came home today after the Wake N Shake, and while walking up the stairs, I met a lady, wearing sweatpants, covered with color and glitter, with no shoes on.  She asked how I was, I asked how she was, and she said "Tired."  I asked if she was coming back from the gym.  It sure looked like it.  She said No, she was coming back from the Color Run.  We stopped and chatted for a long time and I ended up telling her about our foundation, our upcoming 5K on May 9th, and it turned out she is in Marketing and offered to help with our promotion and 5K! I started wondering how we can spice it up, maybe add some color… maybe add some spice this year!  If anyone knows about the workings of the Color Run, or adding some color and spice this year, please e-mail us with suggestions!  support@kidsofchildhoodcancer.og 

Our next big event that we are gearing up for is our "Walk 4 Our Kids" 5K on May 9th!  We are looking for Donors, Sponsors, and people to form Teams in honor or memory of the loved ones we know who have fought or are currently fighting cancer.   To register, donate, or Sponsor, view:  www.walk4ourkids.org or e-mail us at support@kidsofchildhoodcancer.org   It is again, as usual, the day before Mother's Day.  We would like to honor all SURVIVORS from our ward, all Mothers who have had a child battle cancer locally, all mothers who have lost a child.  Volunteer opportunities are open to everyone who wishes to help, starting now! Please do not wait too long to contact us!! 

Also with the approaching Beach Season, another way for the public to support our children is to consider renting out a summer week at our Condo on Topsail Beach! All throughout the year, we send the families battling cancer, or who have battled recently, or bereaved families down to our condo free of charge. However, to pay the $11,000+ annual condo overhead and the cost of sending families on these wish-like trips, we need to rent the condo out to the public during the peak summer months. If you are looking for a beautiful vacation this summer, please consider our Safe Haven Beach Condo at St. Regis  #3105. One rented week pays the cost of sending 2 families throughout the year.

  http://www.treasurerealty.com/vrmgr/rental/DetailPage.aspx?PropertyId=99&WebCode=all&ReturnPath=/vrmgr/search/WebGroupList.aspx#largerPics
Today I am grateful. I am grateful for new opportunities, new friends, a new life, new blessings, new doors, new windows that open on a daily basis… supporters, friends, and family.  Thank YOU all for continuing to read about our ongoing after-cancer journey.  We can not do it without your love and support.  



"When you come to the edge of all light that you know, and are about to drop off into the darkness of the Unknown,  Faith is knowing that one of two things will happen: there will be something solid to stand on, or you will be taught to fly."   ~ Patrick Overton

Prayers asked for:
Proud of our Survivors:
Johnny Van Kemp
Anna Kellner
Julia Scavo
Stevie Terry
Yasir Murillo 

Circle of prayers: 

CC Houck  - cancer
Sofie Zuluaga - cancer
Tyler Fisher - relapsed cancer
Jennifer Chickillo - cancer
Alexa Henson - heart
Elijah Clark - long term side effects
Sarah W. - long term side effects
Tara Alman - complications
Emily Elizabeth - complications
Chuck Edwards - crohn's disease
Mother of unspoken Church friend:  Memory Unit
Mother of unspoken  Church Mentor and Advisor:  unspoken




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Comments

28 Comments

Sarah Nixdorf
By Sarah Nixdorf
Have a Happy Passover.
Www.caring bridge.org/ visit/ sarahnixdorf
Ruth Warner
By Ruth Warner
I am thinking about Vinny and all the good that has developed because of your love and commitment to supporting others in crisis because of life changing illness. You are a blessing in the name of Vinny.
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emily welk
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God bless you all as you move forward in your lives...I like to think Vinny is right by your side, every step of the way. May you continue to feel his presence in the many signs he sends to you. His life was, and continues to be, such a blessing to all who knew him, near and far!
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Tracy Heiman
By Tracy Heiman
Hi Sarah and wonderful family of yours… your memories and steps moving forward in love, and hope and the belief of positive change….and sweet Vinnie. We love you all….you are as always inspiring!

xox Tracy (believing in all the signs!)
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Judy Hester
By Judy Hester
Wonderful post! You sound so upbeat and hopeful; With spring here, daylight lasting longer and Easter so near it's like a new awakening for many of us. The story about the impetus for "Kids of Childhood Cancer" was so interesting and wasn't Vinny smart to come up with "Scorpion Whisperer". Thank you for continuing to post on Caring Bridge and also for being the amazing person you are! Love and prayers for you and your family.
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Teresa Saul
By Teresa Saul
Sarah and family,
It is always good to read your updates. Recently after washing our mini van we had major bird poop. I always wonder if that is Vinny. Hopefully this summer I will be going to LEGOLAND with my grandson. I know Vinny's presence will be there, too. Desi is growing up way too fast. She sounds like a real joy. Do you all still keep up with Lola and how is she doing? The best to you all as you start new adventures and a new job search.
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Lisa Petrow
By Lisa Petrow
I am happy to hear Desi is getting the support she needs and i did sports for a while till they turned into travel league etc.
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Lisa Bisogne
By Lisa Bisogne
So happy to know that Desi is thriving in high school and involved in sports. She is such a strong, brave young lady. She is in our prayers as she goes through the wonderful years of high school. Making memories that will last a life time 🌈 Sincerely hope that Charlie is doing well. Praying for peace and comfort. Knowing that the right job will be available for Sarah & that Vinny & Jesus had a big hand in making it happen!! We miss you Vinny and think of you often. Please send Mom, Dad and Desi a huge double rainbow that stretches across the entire sky. Did you have anything to do with the one that was over Phoenix on March 20? It was incredible I saw it on the news Sunday evening. We love you Vinny, know you are smiling in heaven and having an awesome Lego party ☺ Sincerely, Lisa & Vanessa B.
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Barbara Whipple
By
Sarah the updates are out to the prayer chain, wish I lived closer, would rent the condo could use a little R N R.
I think my trip to RI where the family is will help.
One of these days I may make it to the pizza night that sounds like fun.
God Bless
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Joyce Nosker
By Joyce Nosker
Praying for you, Desi, and all those listed as in need for prayer.