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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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Comments

20 Comments

Dee Heath
By Love and prayers, Dee
Vinny was truly a gift from God. He is always with you in spirit Sarah. That little prankster is all around us.
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1 person hearted this
Helen Botschka
By John, Helen and Pooja Botschka Newaygo, Mi
thanks for sharing and wish you the best
John,Helen and Pooja
Happy Spring
Vinny and his 12 friends all stop at our bird feeder daily.
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Angie Barron
By Angie Barron
Thanks so much for sharing. I love how you are able t see the signs Vinny sends you. I believe with all my heart.
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1 person hearted this
Beverly Reed
By
Gracious Heavenly Father,

Thank you for Charlie, Sarah, and Desi. Through our constant prayers, we lift them again to you for healing, strength, and grace. We have all been impacted in such huge ways by Precious Vinny. Not only did his life change his family forever, but he has changed us in ways we never expected. Thank you for sending Vinny to us and for continuing to speak through him the lessons you want us to know about love and sacrifice, tenacity, and our relationship to you in life and death. Thank you that he is safe in your arms, just waiting to be reunited with his family in celebration of your presence. Help us to be faithful to support Charlie, Sarah, and Desi in any way we can and we praise you for allowing us to be a part of their journey. b
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Barbara Whipple
By Barbara Whipple
So wonderful to hear of all the signs from Vinny have seen several butterfly's to which I always reply "Hi Vinny. didn't remember that you had an apt. but glad Vinny found you and continues to visit.
Understand the need for signs its been just over a year since I lost Danny and some days it feels like it just happened.
Can't believe Desi is going to be driving soon glad to hear she has teachers who care about those they teach.
Update is out to the prayer team prayers for a successful event and continued enjoyment of your new job.
God Bless
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Mary Fisher
By Mary Fisher — last edited
I'm new to your sweet boy's story...but once I started reading I literally stayed up ALL NIGHT reading your caring bridge. Vinny captured my heart that night and I find myself thinking of him every day. What a funny, courageous, beautiful boy he was! I absolutely loved the Vinny stories. One that makes me laugh often is the "I worry about you Vinny...I worry about myself too mommy! " that is just hilarious and captures his little spirit so well;) prayers for you and Desi as you continue to put one foot in front of the other and live this life without your precious Vinny HERE, where he belongs. You are an inspiration for all you do to help families fighting cancer. You are a wonderful person and MOM!

Sending love and prayers,

Mary
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Sarah Nixdorf
By Sarah Nixdorf
Thinking of you. Once I saw two robins sitting just so after my GPA passed on. It was so neat.
Www.caring bridge.org/visit/sarahnixdorf
Kayla Dickhoff
By Kayla Dickhoff — last edited
I so love it when you update!!! Your words have always been so inspiring! And I want to thank you immensely for sharing and being so open about your talks with vinny! That was soooooooo hard for us to do with Jocelyn! We had never done that before and didn't have a lot of time to do it before she passed. We did have a few conversations though. One such conversation happened late at night on the 3rd of July. She basically told me she wasn't scared and had a friend waiting to "take her home"! That was hard yet so comforting for me to hear! Now I know she's perfect and healthy in Heaven and probably having the best time! Away from needles and doctors and such! She still continues to have things her way!!! Sometimes when I need a little help with whatever, I'll say a little prayer to her. Everytime she's come through for me in a big way but sometimes there seems to be a catch! It's almost like she's telling me she's still in charge!!! Ha! ;-) We were given a surprising and very special gift before she passed! Her baby sister Harper will be 2 on may 8. She was born just two months before jocy passed. She had always wanted a baby sister as she had two baby bros already. ;-) We weren't planning on her but were blessed to find out we were expecting her. There was no wiping the smile off her face when we told her! Right away she told me it was gonna be a girl! That smile returned when i told jocy that Harper looked exactly like she did when she was born! I think God knew what he was doing when he gave us Harper! And I think jocy left her all of her attitude and smarts!!!! That baby of mine is growing and changing so fast! I remember Jocelyn in everything Harper does!!! And the boys too! So many things each of them do remind me of Jocelyn everyday!!! We are so blessed!

Sorry for rambling! I really didn't mean to! ;) you are just so easy to share thoughts and feelings with! Thank you for that and for always inspiring me!!! Good luck with your new job!!! So happy for you! And good luck to desi with all her new endeavors!!!

Love
Kayla

www.caringbridge.org/visit/jocelyndickhoff
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sue dunnell
By Sue
Thank you for sharing - Vinny and your family have touched our hearts and although we've never met, we miss Vinny as well. I hope you feel the love that so many have for your family, and the appreciation for letting us into your lives. xo
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Elise Brooks
By Elise
Take care of yourself, Sarah. You have a lot going on! I'm glad Vinny is there in spirit to give you support.
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