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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

Christmas Coming and LIFE in depth


**   Several new pictures have been posted! Even oneof Vinny after his 1st Cleft Lip surgery as a baby… when we thought that theCleft Lip and Heart Defect were the worst things in the world… Before Cancer.

Life is busy, messy and amazing all wrapped into one lately. I have been working almost daily, double shifts at the Loop Restaurant, now temporarily transferred to the Loop in Winston-Salem to help out there for 6 weeks. Because of the long hours, the longer drive, and issues at home, I have been so behind in everything but am slowly catching up!  Christmas is next weekend and I have honestly not had much time to think of it. Because of a huge mix up with address changes at the Post Office, 3 items I have ordered or mailed have been caught up in the system and temporarily lost, which have led to meetings with the Supervisors at the Post Office trying to work out issues.  This has included $182 worth of 140 Christmas Cards with Desi's and Vinny's pictures on them that have yet to show up.  Therefore, Christmas cards will be late this year, but will be coming.  Many friends have e-mailed me or called, and my responses are very delayed and I apologize. 

Vinny

This season also brings back a million memories of Vinny and tears our hearts to pieces, but Vinny is still all around us, sending messages through people all of the time. A few weeks ago,  Desi, Charlie and I helped out at the Pediatric Oncology Christmas party for our ward and I talked to several old friends from our ward who I have not seen for ages.  100+ families, past and present were there.  I noticed that the families who have been in remission for years, or have lost children 13+ years ago came. WE are all still family, we are still coming to our cancer parties and events because once we enter this "club", we become family and there is no way out.  These friends are still supporting each other, still "family", and still involved in the HOPE of a one-day cure.  I had several conversations with mothers of teen survivors and teen siblings that have been through this cancer world, and have learned that many of them (especially siblings) have shown signs of anxiety, depression, belated emotional affects of the cancer world or losing a sibling, and it has helped me realize that some of the issues Desi has been experiencing lately are trauma-based due to the years of Vinny's cancer, and ultimately his loss, and we are not alone in the recent developments in our life.  This will be further explained in a minute.

A few days after we helped at our Peds Oncology Christmas party,our foundation held it's 6th Annual Polar Express Night on our ward, and had 74 people, 30 children present.  It was one of the best Polar Express nights ever!  I am SO glad we had so many volunteers, members, and families help out with the celebration. Unfortunately, we missed our usual Santa and Mrs. Claus because of health issues our "real" Santa has this year… but a wonderful new one stepped in to come and deliver our gifts that were donated by several of my supporters to all of the children… and to give them a Christmas Celebration that many would  not experience without us. Desiree came to help me out as well and volunteered for the party, playing with our little friends    She later told me that she still feels "normal" only really when we are back at our 2nd home "Camp Brenner".  That she misses the ward, and would go there every day to visit if she could.  The hospital is still our home… we miss it… the children and families and our foundation is truly where my heart lies, and through our helping others, we heal ourselves. 

  The party brings back several memories of Vinny though.  He LOVED Polar Express night.  His last Polar Express night in 2012 was when he had excruciating unexplainable pain in this shoulder blade, and Dr. McLean pulled him into the clinic at 6 PM at the beginning of the party and saw that his little shoulder was a bit "deformed" and a few days later we were admitted to the ward, for pain control and testing.  Three days later, we found that Vinny had relapsed for the last time with 5 new tumors in the spinal column and a few days later, on December 21st,  2012, I walked through the ward for the last time with him, wheeling him out in his stroller after being sent home on Hospice and hearing that he may not live through the weekend… that he would not survive until Christmas.  Vinny sat in his stroller yelling"Good-bye! Good-bye forever, and Merry Christmas to ALL the nurses EXCEPT MARCIA!!"  And Marcia was not even working that day.  Vinny was sent home and had his famous "Good-bye" party at the Loop Restaurant where 200+ friends showed up to stand in line, while he was in his wheelchair, half-conscious, selling stale Christmas Cookies for $10 each to still fund his "Vinny Lego World" account to buy Legos before he died.  Friends brought him fake snow because he wanted to see snow one last time… and then it truly snowed for days, and he got to experience the "Blue Thunder Snow", and our great friends from NJ came down to visit and say good-bye….and Vinny still lived 9 more weeks, through Christmas, through New Year's, through Valentine's Day, and through his 5th Year Anniversary of DX.  

Vinny had an AMAZING life and was very happy,  and in a way those cancer years were the best years of our life.  We got to experience a life we never would have had if he had not had cancer.  We met new friends like all of you who followed his journey for 8 years, we had the best vacations, we spent weeks with famous people like Bowzer from Sha Na Na, and Kirk and Chelsea Cameron, and skyped Austin from Austin and Ally show, and had a visit from the LEGO Corporate Marketing Team, and the animator from Pixar a week before Toy Story 3 came out… Amazing people who never would have heard of Vinny's story if not for the amazing connections we made through our cancer world and Caring Bridge. 

 

I constantly come across new people who come into the Loop and talk about Vinny… strangers I have not remembered, who "know" his story or came to the funeral without my knowledge.  I met 3 different strangers at work who all came upto me, separately and talked about Vinny. For example: 

1)   A lady from the Summit Church came to the restaurant and said she recognized me as Vinny's mom, but had never met me. Every year the Summit Church plays our LEGO Video that they filmed of me talking about Legos for the Vinny LEGO Drive for our foundation and recognized me from the video. Vinny had touched her heart.

 

2) Another lady said she hadn't met me officially that she had followed caring bridge forbears and came to Vinny's funeral. She says she still has the gold LEGO that we handed out at Vinny's funeral 2 1/2 years ago sitting on her windowsill in the kitchen. She says that they clean all of the time and put things away, but not once could they ever remove the LEGO from the kitchen because he made such an impact on her because he LOVED HIS LIFE. The Lego is a reminder of the love hehad of life.

3) Another lady was sitting at a big table at lunch with papers spread out all over. She was creating piles and walking around the table organizing. She said she was organizing them at the loop instead of at home. I laughed and said "They look just like my piles of foundation paperwork all over the office at home." She asked what foundation… I told her about our Kids of Childhood Cancer foundation and Vinny, and it turns out that she had helped out 7 years ago at our "Cowboys for Vinny" fundraiser when he was just diagnosed. She said she is forming a foundation with her horses for special children to have horse therapy and when she does, she wants to work with our foundation so our kids can come have that special time on her horse farm, and do another fundraiser!

 

4) Last week a customer came in wearing a clay BIRD necklace that I could not take my eyes off of.  Later, in the middle of her meal, I approached her and asked where she got the necklace and explained about Vinny dying and his promise to come back as a bird and his silly-ness about his promise to send messages through bird poop… It turned out that the lady and her boyfriend have invented special website on-line that will soon be featured that will show-case picture stories of loved ones who have passed away to help families share and heal. They want to have a meeting and see how they can help our foundation, andwe can help them with families who have experienced loss. 

 

5) Little children come in all of the time that I don't know, that are drawn to me, drawn to Vinny's fingerprint necklace, and somehow give me the feeling that he is there, sending signs through them.  One little girl came in with her father and was acting silly.  He said "You are so crazy". She stared right at me and said "I'm not crazy!" in exactly the same way that Vinny yelled "I am not crazy!" during a News Interview from WXII years ago that featured me, Vinny and Mrs. Falgout from Union Cross. 

 

6)  I had been thinking 2 nights ago about Vinny's special Vantage Light machine that was given to us by the Speech Therapist, Ginger, years ago to help him "talk" when he could not talk normally.  I know it is sitting under our bed and wondered what to do with it. I thought of Ginger who I have literally not been in touch with since before Vinny's death and wondered if she still worked at the school system and how I could return the machine to the Speech department for another child to use.  Yesterday for the first time in years,  Ginger walked into the Loop in W-S and asked if I remembered her.  Case solved about the machine!!

 

7) A little boy, around age 7,  came in to the Loop also yesterday, and was drawn right to me.  He looked just like Vinny's best friend, Carter Scavo and when he spoke and moved his head, he had Vinny's facial expressions and head movements.  He showed me a Pokeman toy from McDonalds that is now out tha the had just gotten, and said it was the best toy ever.  He showed me how it transforms ands squirts water, and went on and on about it being the best toy.  Vinny used to collect Pokeman cards with Desi and it pulled my heartstrings.  I said "Wow! That is a cool toy! My little boy would have loved that!"  The young boy stopped, stared at me and said "Well, you can take your little boy to McDonald's and buy him a Happy Meal and get him this toy."  Then he stopped, looked directly into my eyes, and said "Never mind.  I will come see you again before Christmas.  I will buy this toy for your little boy and you can give it to him."  I had to walk to the bathroom to stop the tears. If only it was that easy.  If only I could take Vinny to McDonalds to buy that Happy Meal.  If only he were still alive, had never experienced cancer, had never earned his wings…. It should be that simple.  The little boy got to my core, my heartstrings, my soul…. but I also felt Vinny through him. One more gift and sign from Vinny. I could go on for ages….  He IS still with us.  Still coming through the experiences we have today.

 

Life and family: 

Most of you know that Charlie and I separated last February.  I left, and obtained an apartment, a new job full-time, and struggled through a very tough separation, a mediation and pending divorce that was put on hold in June when we decided to try to be "friends" again, solve some issues, and work together to see where life leads.  When I left, not only because of the loss of Vinny but because of several past differences,  I never thought I would go back… that we would have a new separate future… however, life takes a course in it's own direction and circumstances lead to new opportunities, and sometimes shows you the strength and complications of what a true FAMILY really means.  The separation had led me to taking Charlie off the Board of my foundation, of Desi living in two separate homes, which she started to love because of the lack of parental fighting, and more freedom and time alone thatshe thrived on.  I need to work double shifts and long hours to get my needed full-time hours and pay the bills that have accumulated during the separation… I come home exhausted and need to unwind and got behind on the foundation, on thank-yous, on receipts, on events, and I thank goodness that my members and volunteers quickly stepped in to keep the foundation going, and to support me emotionally in my time of need.  Charlie is also working long hours and has severe back pain due to an old back injury and arthritis in his back that have also left him drained.   

 

Desi had her unfortunate experience in Cross Country Track that led to her knee blowing out, preventing her from continuing her one passion: Running, that is also astress-relief.  The pain continues to worsen, even through PT. PT is NOT helping, it is making it much worse, leading to new back, leg, and neck pain.We need to take her in for a 2nd opinion now at the hospital.  Because of our long hours,  Desi's Church Choir and her Youth Group at Church was also put on hold… things we loved in the past are missing.  Desi was put on new medication because of her "Inattentive Disorder" and a slight learning disability in processing that recently was diagnosed.  This new medication has turned her grades and schooling around 150%.  For the firs time ever, she has focused on homework and tests… She is now getting STRAIGHT A's in ALL Classes, including Math under the guidance of a new math teacher since last week!  She has never, ever received higher than a D in math,and now she has an A!!  She is flourishing in her new Women's Varsity and Concert Choir at school, and does have a tight-knit very small group of close friends who not only help her emotionally there, but also write to me and keep me abreast of situations at school.

 

Despite this "good news"…. it comes with bad.  Because of the lack of supervision and parental guidance that was more controlled when I stayed at home with her,and when I did not work, because of dabbling in "normal" teen behaviors, and also some that are not the norm… because of a few "undesirable" friends who have found her at school this year, life for us has also "crumbled" and needs to be fixed. All of you know how raw and open I have been in the past. I feel that sometimes sharing a tiny bit of our experience good or bad can help maybe one person who is facing the same thing… or that I will find that one person whocan help me. So we will share a little but not all of what we have faced. A group of kids at her school at the beginning of the year, got involved in the complex world of electronics, social media, the new fake text apps and sites that are now on-line, which led to a few of them making a fake Face Book Account, with a fake boy from school named "Jesse Jones".  Jesse was said to be a 11th grade football player who had a crush on Desi and friended me promising to be a great friend and watch over her this year. After several unusual messages or posts on his page, I e-mailed a few teachers to find out that Jesse was not on the Glenn High School roster and never was. I got into the account and changed the password to find multiple messages and dishonest activity from multiple friends who shared the password and were CAT-FISHING.  These behaviors on electronics by the young teens today can lead to very dangerous behaviors, and to a ring of underground Cat-Fishing groups that prey on unsuspecting teens that can lead to life-threatening circumstances. It is no joke.  I busted the ring and had a 2 hour meeting with the Principal, IT Director, SRO, teachers, and Desiree. Electronics were taken away and were watched, yet I do not always understand the complex world of electronics and cell phones and at the black internet that is present today.  

 

To make a very long story short, this world of electronic behavior that can be at times addicting went a bit too far and two particular girls at school that were involved in this behavior, led to a very traumatic experience for Desiree.  This event has led to a big investigation that is still underway, that has also led me to take days off work to spend hours and hundreds of dollars at multiple doctor's offices, the social workers at school, and police investigators. It has also caused Desi to have anxiety, depression and flashbacks. She is now under the care of a wonderful social worker at school, her counselors, some wonderful supportive teachers, and a psychologist at the health center connected to our hospital.  She is healing.  She has the strength, determination, and resilience to pull through this.  It has also been determined that much of this is also Trauma-Based CognitiveBehavior based on the hardships of Vinny's cancer years and his ultimate loss. Desi was 7 years old when he was dx, and for years was falsely told that he would die, and then would bounce back…. She was not allowed to have friends over because of germs and Vinny's immune systems…. When Charlie was working, I "lived" at the hospital with Vinny and she was passed around at times to friends, neighbors, and a special teacher who would care for her and let her spend the night at times when Charlie could not take her to school, and I was at the hospital with Vinny.  She was also sent to Maryland to stay for 3 weeks at a time with my sister during Vinny's radiation days in 3 different summers.  Desiree's needs were sometimes pushed aside, as all cancer siblings are, when they are overshadowed by the SICK sibling as we as parents try to fight for their lives.  It could not be helped and we did what we needed to do to get through the cancer world.  But Desi lost her childhood during those years, and faced the biggest loss ever:  the loss of her only sibling and best friend.  As I said before, after talking to my other cancer families at the party,  I found this is sometimes "the norm" in the psychological after-affects of the cancer world.

Desi is going through intensive therapy and WILL improve quickly.

  

Which leads to the next….  Charlie and I have been working together more on keeping Desiree more supervised and protected now.  We are co-parenting together and have had meetings with her new psychologist, multiple doctors and investigators.   They all have said that it is best to have Desiree under one roof, where she can spend more time with two parents instead of a broken home. It is important to push our past issues aside, to learn to love and heal as a family again, to mend our broken hearts from the loss of Vinny, and to support each other. 

 

Desiree is our priority, our life, our only child left.  The professionals we see reiterate what we now feel is the best move for our family and our healing. I am moving back in with Charlie and working on our marriage again. We are starting over as a family, and when my lease is up in February, Iwill be back in my old home.  Several friends have asked for my "new address", and because of the post office issues, and address changes, I have changed the address back to our house on Biloxi.  Please e-mail me privately for the full address if needed.

 

Through all of this, we have continued to support the families on our ward through our foundation financially the past several months and weeks, including paying 2 rents, 2 car payments through referred through our Oncology Staff… providing food gift cards for 2 families who have had issues with food stamp processing, provided toys for our Christmas families and Polar Express Night, and lining up more families who will be staying at our Beach Condo through the spring and upcoming year. 

 

I am very late on the Thank You’s announcements, and receipts this year because of Life .More information can be found on our Kids of Childhood Cancer FB page including PICTURES of our party!  (please LIKE the page to join): https://www.facebook.com/KidsOfChildhoodCancer/?ref=hl

 our website: www.kidsofchildhoodcancer.org

 

along with cute postings and Vinny memories and pictures on our Vinny Defies the Odds and Kicks Cancer in the Fanny page  supported and run by our great friend Cindy Shultz. https://www.facebook.com/groups/176446051758/

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 Along with mine:  Sarah Hoorneman DiGerolamo. 

 

Some immediate Thank You’s go out to our members and volunteers who have continued to help our foundation thrive during this time.

Thank you to the following supporters for the recent help, checks and grants:

 

Candy Lockwood and her Book Group who have provided the 30+ Polar Express stockings  for the 5th year in a row.  I FINALLY got a chance todine with these women and watch them fill the stockings before our party.  Pictures are posted on the KOCC FB page!

 

Thank you to Linda Starkey and the Kernersville Senior Center Charity Brigade who hand- made Quilts and soft hats for our children this year.

 

Thank you to Jeff U, who continues to be my rock and help with all events at the hospital.

 

Thank you to the LEGO Corporate Office, BB&T, theTJ  Rasnick Foundation, the W-S Foundation and Smokin Harley HOG Group for the GRANTS and checks that were just donated!

 

Thank you to a special little girl in the Ferrese Family who made JuneBug Jewelry in memory of “CC” Sienna Houck who recently earned her wings on our ward, and raised $400 in jewelry sales for our foundation in Memory of CC.

Our  thank yous are not limited to the above mentioned.  More are due and coming soon!

 

Also, last night I started our new 2016 KOCC Calendar that will be here soon! If you are a family on our ward and would like your child featured with pictures during and after treatments, please e-mail them to me as soon as possible at:  support@kidsofchildhoodcancer.org or sdigerolamo@gmail.com 

 

Our Chili Cook-off is scheduled for March 12th, 2016.

Our 5K is the day before Mother’s Day.

Our Bike Run is the first Saturday in June!  Please mark the dates!!

Thank you to ALL of you who stand by our side, continue reading, continue loving and supporting us through all of the years we have known you!! 

MORE SOON!! 




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Comments

36 Comments

Beth Fruechtl
By Beth Fruechtl
God's blessings, peace and comfort as you and Charlie and Desi enter 2016.
krisanna's mom laura
By krisanna's mom laura [www.caringbridge.org/visit/krisanna]
Happy New Year! Prayers continue for all ~
Michele Chase
By Michele C
praying for all of you.
coleen parrish
By Coleen
Hi Sarah!! So good to hear from you!!!
I had to reread this post a couple times and it reminded me of an email from you awhile ago where my response was Wow Wow Wow!! So much going on in your life....It is clear Vinny has chosen to come to you in other forms than a bird, these children who are drawn to you are clearly sent from Him, even if they make you crumble at your core. Your connection to Vinny is so strong, he's definitely using that invisible string to reach you. I picture a healthy, happy boy who is letting his Momma know he's ok & is always with her. 💙💙 I still have my "I LOVE MY LIFE" quote on my wall in my office, it's a daily reminder of a very special little boy who touched so many lives through his earthly trials.
I'm so sorry for Desis' troubles, kids are so cruel & social media opens up a whole new world of disaster. Sounds like some other parents could take a lesson from you & Charlie in keeping track of their kids' online activity.
I wish you all the best as you put your family back together & heal Desi. You are one of the best moms I "know" & I'm sure you can overcome this.
Keeping you all in my thoughts & prayers every single day.

Much Love & Big Hugs,
Coleen
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Joyce Nosker
By Joyce Nosker
No wonder you don't have much time for updates here. Not that you really need to update all of us any longer, but I'm thankful for all news. The good news is wonderful and I can give thanks for that, and the other news gives me an idea of what I can be praying about for you and your family.

May you, Charlie, and Desi have a blessed and Merry Christmas. May 2016 bring healing in all the ways needed for your family.
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Kris Dillenbeck
By
Thank you so much for taking the time from your busy life to post an update. I followed Vinny's journey for many years and you all became important people that I cared and prayed for daily. When I see a Caring Bridge notice from you, it's like getting a letter from a friend. Life has so many twists and turns and sometimes it's hard to understand why things happen, but I believe we can do everything through Christ, who gives us Strength. I'm happy for all of the positive things that have been going on for Desi and for all of the work that you do for your foundation. I hope that you have a truly beautiful Christmas and that the New Year is filled with God's Blessings.
Pamela Finch
By Mrs. Pam
May God be "your strength and your song" as you embrace being a loving family.
Sue Lea
By Sue from Minnesota
We have never met, but I have followed your family's story, and I'm amazed at all you do. I wish you and Charlie and Desi nothing but the best. I understand how difficult losing a child is; I myself have not, but my brother and sister-in-law lost their daughter almost 40 years ago now to brain cancer (no new treatment protocols in that many years - it's appalling, but anyway). They are still together and have lived thru the most awful thing, I have hope you can do the same! May you find peace and joy this holiday season...
marilyn bergagnini
By marilyn bergagnini
PRAYING FOR YOU SARAH WITH ALL YOU AND YOUR FAMILY HAS BEEN THRU THE MANY YEARS WITH VINNY'S CANCER.....I HAVE HEARD OF OTHER PARENTS BREAKING UP WHEN A CHILD HAS CANCER AS IM SURE ITS SOO HARD ON THEM ALL.....IM SOO HAPPY THAT YOU AND CAHRLIE ARE GETING BACK TOGETHER AND THAT DESI WILL HAVE MORE COMFORT TOO......GOD BLESS YOU AND CHARLIE AS YOU ARE THE BEST PARENTS BUT CANCER CAN BREAK UP FAMILIES....GOD BLESS AND PRAYING FOR DESI ALSO THAT SHE HEALS FAST AND HAS COMFORT.....HUGS AND LOVES AND TONS OF PRAYERS.........P.S. I ALWAYS THINK OF PRANKSTER VINNY WHEN I GET BIRD POOP ON MY CAR WINDOWS...LOL
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1 person hearted this
Linda Thomas
By
God bless you Sarah and your family. You have been through so much, and I pray that together, you can rebuild and become a strong family once again. You are all in my prayers!
Hugs & Love, Linda Thomas- Send Love Today