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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

Signs and Events

"Are moths good or bad Mommy?""
"They are good"
"Then I will come back as….. " 

Spring is in full bloom here and the signs Vinny continues to send me on my hardest days are just amazing. As all of you know by now, Vinny and I had many, many talks about the signs and messages he would come back as during his days on Hospice.  He would ask lots of questions about Heaven and if there were Robbers in Heaven, what age he would be, what age he could marry Lola in Heaven… whether there were storms or rainbows and Legos… And he would then tell me what he would come back as…
He once asked that simple question "Are moths good or bad, Mommy?" And I said they were good.  He said he would come back as the moths, the butterflies, the birds (of course proving it was him through pooping on various people or things), the ladybugs, the rainbows, the Scorpion Whisperer who would protect me from the bees, hornets, wasps, snakes and scorpions.

We have had our fair share of signs when well-needed lately. I often do get sad and miss our little boy… everything about him…kisses, his laughter, his pranks, our talk, his unconditional love for me.  And when I am sad or having a hard moment, he appears.  I have a gorgeous balcony at my new apartment with a tree I call "My tree", and I often sit out there at night now and have a glass of wine and read my books.  Sometimes for hours.  And sometimes I sit and cry.  And when I do, he appears.  In one such moment this week, a huge yellow butterfly kept circling around me, and I said "I see you, sweetie"… and two days ago, I was sitting there, reading my book, missing him… and when I looked next to me, there was the pink and yellow Rosy Maple Moth that we have only found once before (see picture posted below).  The rosy maple moth appears for a few months per year, and is considered a "social creature".  It is beautiful, and rare to see. As I sat reading, I glanced over and saw him right next to me.  I took picture after picture, and he remained for close to the 3 hours I was reading my book on the balcony.  I felt comfort, peace, and Vinny. 

I am also terrified of bees and wasps.  Vinny though, never was,  while Desiree ran screaming into the house at the very sight of one, Vinny would laugh heartily, pull out his light saber, and whack them when they flew inside his  bouncy house or bothered us at the pool in a single stroke.  In the corner of my balcony, I noticed a wasp building a nest that looked like an old nest from last year.  I was not scared though, knowing that Vinny would surely protect me from stings as promised… and instead of calling the maintenance man I often rely on, I took care of it myself.  While cutting lettuce for salads twice this week, little ladybugs would appear on the lettuce I was washing and I would smile… and the day I posted in Facebook that I was starting my job at the Loop and was finally going to get the paycheck there that Vinny always wanted,  I went out to my van to find the windshield COVERED in bird poop. I don't think he was thrilled about the paycheck thing.  

Today I went to the foundation PO Box, and found that Joyce Nosker, a faithful caring bridge reader and friend, had mailed us the gorgeous figurine of an Angel in a Blue Dress, holding a sign that said "comfort", and holding 3 little birds.  A perfect gift, a perfect capture of Vinny.  Thank you SO much to Joyce and Larry.  A picture is posted below.
The signs and messages are so comforting.  We were very, very fortunate to be as open as we had been… to be able to talk to Vinny about death, dying, Heaven, Angels, and God.  I had never done that before and was not completely sure about the viewpoints I believed in about any of those before Vinny's cancer.  And Vinny taught me all about them through his visions, his angel-visits, through his conversations before death.  I recently found an e-mail from December 2012 BEFORE he relapsed for the last time,  BEFORE we knew about Hospice… it was from Vinny to Mark Harmon (the GM of the LEGO Store).  It simply said "Mark, we need to have a Lego Therapy Night before February 2013."   We didn't. We did not have time after the pain started in his shoulder blades… but the exact dates were right there. He earned his wings on February 18, 2103.  I think he knew in his heart the date of his death… he simply e-mailed Mark and said it had to be before February 2013…. and in that,  is comfort. 

I recently had a 2 hour conversation with a Mommy who just lost her little girl here.  While asking questions about Vinny and his signs and the messages, and the talks we had… I think it gave her comfort to know that our children are much more aware in this cancer world, and much closer to that openness than we could ever know… 

Life has been a hectic whirlwind for me.  I started working at the Loop Pizza Grill Restaurant full-time, working mostly double-shifts now.  I love it there, but am adjusting to the doubles and working  full-time… and coping with Desiree's schedule of Lacrosse, Driver's Ed, and holding meetings at her school to pull up her low grades.  With one meeting behind me and one in the near future with a wonderful, caring teacher, Desi has pulled up her grades to an A in 3 out of 5 classes for the first time ever!! The teachers have been very understanding, and have given me the tools to be able to help her.  She just completed Driver's Ed and is now starting to drive, to my detriment.  It is very scary when your little girl grows up and ventures into cars, boyfriends, a PROM coming up, and life one step removed from her mommy's hip.  I do miss the days when the kids were both here, both safe, both little, spending 100% of their time with us.  She is venturing into her own life, and in 3 years will be gone to college and we must find our way on our own… so hard to let that go.  

Besides working at the Loop, I have my hands full with foundation work, e-mails and phone calls about the upcoming 5K and other events.  I have been behind on catching up but try to, as usual, at night.  If you have left me a message or e-mail that I have not responded to, please know I have received them and will promise to respond as soon as possible. Please don't take it personally…I LOVE e-mails, so please continue… but know that if I don't respond yet it is only because of my work schedule and at the end of the day, I am sometimes too exhausted to respond just yet.  It is nothing anyone has said or done to offend me… several people have asked. Just know I am touched by all of your messages and will respond as soon as I can.  

Tonight was our Loop Fundraiser night and I thank everyone, especially our Church Family and Debi Greer's family for coming out to show your support as usual!!  We do appreciate each and every one of our supporters!!   

Our upcoming 5th Annual "Walk 4 our Kids" 5K is just 2 weeks away and our foundation is scrambling to tie up ends.  We are having a Volunteer Meeting this Saturday at the Loop in Kernersville at 11:30 AM.  If ANYONE can volunteer, please e-mail us at support@kidsofchildhoodcancer.org   We have an amazing group of Volunteers right now, but we are always looking for new ones as well to grow and help at our upcoming events!   
If you would still like to sign up, form a team, join a team, sponsor or donate, the link is:  www.walk4ourkids.org  The Walk is May 9th and we are honoring all Survivors, All Angels, and all mothers who have had a child fight!!  We are very excited about this wonderful annual event, and that we have been able to continue for the past 5 years!!

Team Vinny is: http://www.walk4ourkids.org/faf/search/searchTeamPart.asp?ievent=1123515&lis=1&kntae1123515=70FBB353…

100% of the proceeds help our families in the local area financially, and multiple families are able to go down to our Safe Haven Beach Condo this season because of our donations and supporters!!  

For those who ride, not walk, our 4th Annual Ride 4 Our kids is JUNE 6th at Smokin Harley Davidson!!!   It is a beautiful 2 hour ride through Pilot Mountain with an after-party on the grounds! The site and more details to follow!!

Thank you all again for reaching out to us, for reading, for loving and for supporting! 




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Comentarios

20 Comentarios

Colleen Jachcinski
By Colleen Jachcinski
Just a note to let you know that I think of you often and continue to pray for your family. I remember Vinny always. ♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥
Susan Kittles
By Susan Kittles
I know Vinny is proud of you for what yall have accomplished. Just wanted to let you know I see and feel the signs that my Lauren sends me too. The butterflies and dimes and taps on the back when I am so sad for not having her with me. She also told me in a dream that she was my special angel! I love when we hear from our children. Thank you for all that you do!
Mandy Newell-Reynolds
By Mandy Newell-Reynolds
Love and Prayers my dear friend
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1 person hearted this
marilyn bergagnini
By marilyn bergagnini
DEAR SARAH, I ALWAYS THINK OF VINNY WHEN I HAVE BIRD POOP ON MY CAR WINDOWS OR HOME WINDOWS.....THAT LIL STINKER IS HITTING ME TOO..LOL VINNY WAS SOO PRECIOUS AND I LOVED HIM SOO MUCH WITH HIS LIL VOICE....GOD BLESS YOU AND THINK OF YOU AND DESI.....HUGS AND LOVES..
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Jan Menary
By Jan Menary
Sarah, you continue to amaze me! Good for Desi raising her grades!!
Nigel Burrell
By Nigel Burrell
I'm glad to read that Vinny is sending signs that he is always watching over you all and is always nearby. He was such a very special little boy on earth, and is surely a bright light of pure joy in the afterlife/Heaven. You are all covered by my prayers for health and happiness. Thinking of you all from the U.K.

Nigel xxx
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Pamela Finch
By Mrs. Pam
how beautiful that you are receiving so many signs from Vinny
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Joyce Nosker
By Joyce Nosker
What a blessing it is that you are still connected to Vinny in so many of the ways that he promised. I'm thankful that you have these reminders and protectors.

Desi and the prom?! Oh well, they do grow up too fast.

Congratulations Desi on your hard work to earn 3 A's.
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Marcie Abdellaoui
By Marcie
:)
Ruth Warner
By Ruth Warner
Thank you for the update. You are learning how to make sunshine from the clouds in your life with love and support from Vinny.
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