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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

October - Vinny's birthday and Halloween

“When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.”  K. Gibran

** new pictures have been posted of Vinny's birthday months and Halloweens…" 

The month of October is upon us, and with it comes the memories of Vinny's favorite month.  His Birthday month, of course, and Halloween, and the yearly Pumpkin Patch, and Trick-or-Treating….so many memories of this month. 

 Today is the 25th year Anniversary of the day that Charlie's mother passed away from Colon Cancer.  A horrendous battle that she lost when she was at the young age of 60 years old.  When I met Charlie he was still grieving for his mother and grieved tremendously, as he still does… and he said that watching her go through chemo and the cancer treatment was so awful that he would never put up a fight or endure chemo if it ever happened to him.  And then it was his son… and his mind changed, and  we had no hesitation about going through that fight and enduring the horrendous treatments and chemo for 5+ years in order to try to save our son… only to end up in Heaven with Grandma June.  We have no regrets and we bought ourselves 5 more years with Vinny than we could have had.  My thoughts go out to my sister-in-law, Joan, and my brother-in-laws: Joe, George and Lou… and Charlie today.  And my own thoughts are also with Desiree and Vinny…

I have been overwhelmed with emotions lately.  We miss Vinny more than ever and his memories are everywhere.  The memories make us laugh and cry simultaneously.  The smallest thing in the world can bring it all back.  I see a blond boy around the age that Vinny was and I want to hug him.  I see a baby boy and I want to start all over again from the day I found out we were having a boy… an Italian Boy that we knew from before the pregnancy that we would name Vinny. (If he were a girl, we planned to call "her" Vanessa, so she could be "Vanny" for short… those Italian Dads always want a Vinny)… What we never expected was a child with so many health issues, and ultimately cancer that would steal him away probably 71 years before his normal time. 

Life is busy.  Charlie continues to love working at Wake Forest University.  I have started my new job at World Market on Hanes Blvd in Winston-Salem.  I love the store, and thoroughly enjoy getting to know my co-workers and I have a great time with the customers.  It is very good to be back in the work world.  I love my new volunteer position, still working with cancer kids, and our foundation (Kids of Childhood Cancer) is thriving despite my work schedule.  

Desiree LOVES High School.  She appears to be thriving as a Freshman at a new school, with new and old friends.  She is blossoming and maturing.  She had a Cross Country Track Meet today and came in 2nd place out of the Glenn High Girls!!! She ran 3.1 miles (5K) in 27 minutes, which is her best time yet. She had a wonderful surprise visit from Jeff, our counselor on our ward who came out to root her on… as well as an appearance at the meet from Dr. Ricketts,  our favorite Pediatrician who we credit for catching Vinny's cancer in time… 

 She talks about taking Driver's Ed in 3 months.  She loves her friends and social life. She loves the Friday night Football games.  She talks about wanting to try out for Girls Lacrosse Team in the spring. She talks about the Scouts at Cross Country that are already scouting for colleges.  She has decided that she really wants to go to Appalachain State University in Boone on a scholarship for Cross Country or LaCrosse… and it has the major of her choice:  a great program in Forensic Science, Crime Scene Investigation and Law Enforcement.  Her dream is to be a Crime Scene Investigator, that in some states requires a time period in Law Enforcement, which her father retired from.  All of this was decided on her own… I had no idea she had even contemplated college before announcing all of this to us at the beginning of the school year.  

What you don't see on the outside is the fistulas on the surface… or the deep cracks like craters in our hearts.  What people did not see today when we posted smiling pictures of Desi at her Track Meet on Facebook today is her red, crying eyes 1 1/2 hours prior because she realized that in 7 days Vinny would have been 11 years old.  They had plans together.  When he reached 12 yrs old, he would have joined Church Youth with her. When he turned 13, he was excited about being a TEENAGER,  when she got her driver's license, he was excited that she would be able to drive him all over without their Mommy.  And none of that is going to be.  

I have been deeply touched lately by a handful of friends and readers who have e-mailed me and told me their own stories of Vinny pranks or a few "dream visits" they have had from him.  He is still visiting, still surrounding us… and I hope so much that I will get another "visit" from him soon… I think at my saddest times, he is more distant…. It touches me greatly though to hear of his visits to others. 

October always sweeps us with emotions.  Fall was his (and my) favorite time of year… the leaves changing… the seasons… Halloween, his birthday, Thanksgiving, PRANKSGIVING and then Christmas.  His birthday is October 9th, and was his most cherished time of year.  Most of you who have followed us for years and years knew that Vinny would celebrate his birthday maybe 9 or 10 times a year during his cancer journey.  He started the habit of baking CAKES every 3 days after his first blood transfusion in 2008.  We said he got the blood of a baker.  50+ cake mixes had been donated to us in that first year, and I must admit I was SO tired of baking them with him… We would be exhausted, on our way to bed and suddenly a little voice would say "It my biwday".  And he would want to wake everyone up at midnight to bake a cake, frost the cake, sing to him, blow out the candles, and pretend he was one year older than he really was. Anything to escape his "4th year" since he thought that all 4 year olds got cancer… and when they turned 5, it would be gone… until his came back at age 6… and 7… and 8… and 9…. 

In the pictures posted,  there is one of his Toy Story Cake that our friend Claire V.  bought him when he insisted that it was his birthday in June or July… and that his name was ANDY.  Andy was his "fake name" in his "fake life" that was his escape from cancer.  And everyone, including Dr. McLean had to call him Andy, or else he would not answer… hence the Andy cake.  I still laugh when I re-read my caring bridge Journal from January 21, 2009: 

Vinny (age 5 yrs, b-day Oct. 9, 2003) then decided that he wanted to bake a cake! (Thank you Jordan Wilson and also the Manuel Bible Group- we still have 30 mixes left). He wanted to make his own "baby" cake, decided he wanted to be 44 yrs old, invite 44 friends, and have 44 presents. Well, we made the 44th b-day cake (see picture above) and are waiting for the others.... Vinny also said he wanted to have a costume party and be Luke Skywalker. 

At age 5, he wanted to be 44, only to escape his reality… 

So next Thursday, October 9th, will be Vinny's 11th birthday.  Several people have asked how we are celebrating or honoring our little guy.  Usually, we hold our Loop Pizza Grill Nights on the 4th Thursday of the month, however, for October we have rearranged the fundraiser night and will be holding the Loop night on Vinny's birthday.   Charlie has taken the day off of work, and will also be at the Loop.   At 6:30 PM we will hold a Balloon Release in Memory of Vinny in the parking lot of the Loop Restaurant in Kernersville on our fundraiser night.  We will start our usual "Loop" night from 5-9 PM where we can join friends for dinner and drinks, and a percentage of all proceeds will benefit the Kids of Childhood Cancer Foundation, supporting our local cancer kids…   But at 6:30 PM we will go to the parking lot and have our Balloon Release in honor of Vinny's 11th birthday.  Nurse Marcia (who has just shaved her head at St. Baldrick's!!)  will also be there and will have a few words to say, along with anyone else who would like to share some Vinny moments.   If you desire, you can bring a $10 gift or gift card to help stock our Vinny Toybox in clinic… or a can of food… or school supplies.  Our foundation is now stocking 75+ toys per month in our ToyBox, as well as continuing to stock the Microwave Room food for the in-patient families for the entire ward, as well as on-going year-long School Supply stocking that we were also asked to continue all year, permanently.  There are so many needs on the ward… and these are just a few, in addition to financial help.  PLEASE come celebrate Vinny's birthday at one of his favorite places!!!  1030 N. Main Street in Kernersville. 

So many other events that we GREATLY missed Vinny at have happened recently.  September was Childhood Cancer Awareness Month, which still, in no way ever has the awareness or zing that October has for Breast Cancer Awareness Month.  I fully support Breast Cancer.. it is one of my future fears… especially since new evidence has come about that points towards a future 
possibility that is higher than average for me: There was a significant excess of breast cancer in mothers overall (SIR=1.3, 95%CI=1.0–1.5) mainly due to mothers of children with rhabdomyosarcoma (RMS) (SIR=2.2, 95%CI=1.0–4.0), skin cancer (SIR=7.9, 95%CI=2.9–17.1) and central nervous system tumours (SIR=1.2, 95%CI=0.9–1.8). Maternal breast cancer risk was associated with late age at birth of the index child, and male sex and young age at diagnosis in the index child. Risk was highest in the ten years, following the birth of the index. The pattern was seen most strongly in mothers of children with embryonal RMS.
Evidence points at: 1) me having issues with both pregnancies 2) me having Vinny at a later age 3) him being male 4) his type being ERMS.  However,  knowledge and talk about Breast Cancer in no way, in my own private world, compares to childhood cancer.. for a child that has not had the chance to grow up, while I, as an adult have lived my life.   The Pink Ribbon took 10 years to finally get recognized as a household symbol… and now some types of breast cancer are 99% curable because of the awareness, media coverage and research funding… where Childhood Cancer is not.

During Childhood Cancer Awareness Month, I was invited to attend the Hyundai Hope of Wheels Event at our hospital, where Dr. Castellino accepted a grant for $250,000 for our own Childhood Cancer Research Team at Brenner Children's Hospital.   She talked about all of the children battling cancer, and specifically mentioned Vinny, with tears in her eyes and voice catching… as she stated how much she missed him… And we remembered how his handprints were in the Hope on Wheels video a few years ago… (I believe the 29 second mark below).  Vinny's memory was honored again at the ceremony this year.  

https://www.youtube.com/watch?v=x4V8uaQFAq8 

Last Saturday we held our St. Baldrick's Event at Finnigan's Wake in Winston-Salem.  It was my 7th year of Volunteering… I was anointed a "Knight of the Bald Table" by Evan Fitzsimmons (our survivor) along with Dr. McLean for my 7 years of volunteer service.  I was again in charge of the Honored Kids, helped by our foundation Member and fellow cancer Mom, Jennifer Kellner.  We had several cancer survivors and warriors go on stage to help shave our friends and Oncology Family.  Dr. McLean, Dr. Castellino, Dr. Russell, Dr. C's son, NURSE MARCIA and our great friend Stephen Comer and his brother Daniel all shaved their heads along with several other participants.   We raised over $50,0000 for Childhood Cancer Research Funding!!


And we missed Vinny…. we missed Vinny prancing around the stage with his bald head and his red socks that first year, not letting go of the microphone while he sang "Hold On" by Jonas Brothers, but due to his Velopharyngeal Insufficiency and cleft lip,  not many people could understand him, but we knew.   We missed the following years when he walked the crowds and stage with his red LEGO money bank asking for donations for the "Cuwe".  We missed him shaving all the heads along with our other warriors…. and Roger (our MCEE) asked for a long period of silence in memory of his little MCEE helper and buddy, this year… as it is not the same without him or the other Angels who we missed this year….  I missed having Evan there… and Vinny… and Jonah… and the other friends we have lost along the way who used to attend with us.  The list of Angels this year far exceeded the Survivors I read the names of… 

So many happy and sad memories race through my mind… a mind that I still have trouble shutting off at night time, when I was so used to sleeping next to him… I still feel him in the mornings when I wake up, reach over to kiss me or pull my hair, and to whisper "Mama, you the best Mom. You so beautiful inside and out."  And how I miss those little words coming from his little mouth… 

** This Saturday is another way to come out and celebrate the children battling cancer and to help support them through our foundation.  This Saturday is our 3rd Annual Fall Carnival for Kids of Childhood Cancer at Core Fitness and Karate!  

*We are raffling off our Safe Haven Beach Condo for a 4 night stay:  $2 per raffle ticket or 3 for $5. You do not need to live in-state, and do not have to be present.  Anyone can purchase tickets. Just e-mail me at support@kidsofchildhoodcancer.org to purchase tickets or donate!   The Carnival will be bigger and better than ever!!  Details are here:

Come join us for our 3rd Annual  "Knockout Childhood Cancer" Fall Carnival!

 This Saturday:   October 4th   10 AM - 2 PM

Location:  Core Fitness Karate Systems:   4300 Kernersville Rd,  Kernersville

$5 admission + extra for dunk tank, food, and raffles

 We will have:

·      Hot Dog Lunch  ($3 per plate for hot dog, drink and chips)

·      Cotton Candy

·      Bake Sale

·      Bouncy House and Inflatables

·      Clowns!

·      Carnival Games

·      Parties 2 Dye 4 Mobile Tie Die Bus

·      Face Painting

·      Board Breaking 

·      Brunswick Stew Pre-Sale  ($6 per delicious quart!)  

SILENT AUCTION with several awesome baskets including Restaurant Certificates, Salon Certificates, Mary Kay, Wreaths and more.

Raffle Tickets for a 4 night stay at our Safe Haven Beach Condo!!     Raffle tickets are $2 each or 3 for $5.  You do not have to be local or present to win a stay at our Beach Condo!!

 E-mail support@kidsofchildhoodcancer.org for details and raffles! 

Thank you all once again for continuing to read, follow, and to remember Vinny.  

We are also asking for the following prayers:

For the families of Justin Elam who earned his wings last week on our ward… the young man who accompanied us to the Safe Haven this past June… also known as the "big boy who loved legos" by Vinny:  www.caringbridge.org/visit/justinelam 

Also for the family of Ethan Hallmark,  a young boy treated in Boston who captured my heart after Vinny earned his wings:  http://www.caringbridge.org/visit/ethanhallmark

And also a newbie young adult at Levine Hospital who has just been diagnosed with Lymphoma… Who was recently referred to me by a close friend for emotional support.  If there are any other young adults who have fought Lymphoma, please reach out to Jennifer as she enters this new journey:  http://www.caringbridge.org/visit/jenniferjacques

My thoughts and prayers are with them all. 






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Comments

29 Comments

Marge Castee;
By Marge Casteel
We want you to know that we continue to hold you and your family in our prayers. - Family of Jameson Casteel (02/13/1997 - 10/21/2009)
Tracy Heiman
By Tracy Heiman
Happy Birthday Vinny and family! Just catching up to your post today--I think Vinny has been reaching out, all day long I was feeling like baking a cake with frosting---after reading this post--now I know why! Cake it will be--sweet cake in honor of our sweet Vinnie and family. Thank you for all you do Sarah… xoox to you all. xoxo This year we were able to get the capital building in Denver to go GOLD for Childhood Cancer Awareness--Sarah,, we are changing this---step by step,, for Vinnie and too many sweet angels like him. We love you all. xoxo
Lynnett Jankuski
By Lynnett Jankuski
Happy Birthday Vinny!!!! Thinking of you & your family today & sending love.
God Bless
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coleen parrish
By Coleen
HAPPY BIRTHDAY VINNY!!!!!
I'm wondering what age you have chosen to be this year, or maybe there is no "age" in Heaven?? I bet you have the best kitchen ever to bake however many different cakes you want....
Your favorite time of year is here and it makes us miss you even more, but I know you have the entire Heavens to orchestrate all the Pranksgivings your sweet little heart desires....Have fun sweet boy...

We Love You, We Miss You So
Coleen
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Margaret Vela
By Margaret Vela
Sarah, Thinking of you, Charlie, and Desi. Wishing Vinny has a fabulous birthday in heaven throwing a few hints at his family that he is nearby. Every time i see Legos, I think of Vinny. My thoughts and prayers are with you. Hugs!
Denise Marshall
By Denise Marshall
Will be wishing sweet Vinny a Happy Birthday in Heaven tomorrow, what a sweet son. I pray you receive a prank from him for his birthday! You are amazing in all you do, God Bless you and your family ....
Joyce Nosker
By Joyce Nosker
One of my first memories, when I began following Vinny's journey, was of his cake baking. I thought you must be a saint for baking cakes so often, that your family just loved cakes, or that you made them for special people. I wondered if Buddy of the "Cake Boss" would come to visit Vinny with a special cake.
I know these are special times of the year for your family, and also harder than ever times for the same reasons. I think of you often and will be lifting you in prayer.

Very interesting to know what Desiree wants to study in college. I've thought that forensic sciences would be an interesting career. Hope she continues to do so well with her cross country and lacrosse!

I too have read the stats that you included about the risk of breast cancer for mothers of children with cancer, especially ERMS. What a horrible double tragedy for all mothers included, as if all of you haven't been through enough. Frankly, I'm a little tired of some of the "pink festivities." In our area several communities turn their firetrucks pink, have pink fire fighting coats, pants, and hats. There are all sorts of parties for awareness. It seems to me that there can't be many more people who don't know about breast cancer. Maybe more money needs to be channeled towards research (I know that this is done to some extent), help women with financial needs, and all the needs that you know families with cancer need.

You continue to amaze me with all that you are able to accomplish for other children with cancer, and their families.

I've read Jennifer Jacques' site and will be following her and praying for her healing. I had been following both Ethan and Justin for awhile and have been praying for both boys' families.
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Barbara Whipple
By Barbara Whipple
Good thing I'm not close enough to come we could sit there and blubber together the 7th will mark 6 months with out the love of m life and I STILL MISS HIM TERRIBLY but at least I can let the tears flow he always had a problem wit crying because his mother used tears as a way to get what she wanted . it was only the last few ears after the Alzheimer's reared it's ugly head that he became more comfortable with my crying. I 'm working hard to just let them flow because if you keep them in I think I would explode and I don't need tears to do that!!!!
One of these Thursday nights I'm going to show up to check out the pizza since it's one thing I have a little knowledge of coming from RI where Pizza and Hot weiners rule along with lobster!
Hugs to all of you so proud of Desi love her sport choices one of my granddaughters runs cross country and place basketball the other plays lacrosse and soccer (her real love she is on a select and supreme league.) The are only in middle school, but growing up too fast
Hugs n Love
God Bless
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Dottie Jones
By The Jones Family, Kitty Hawk, NC
We will be thinking of Vinny on his birthday. You are such a special family.
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Kathy Shipstad
By Kathy Shipstad
I will ALWAYS remember your Vinny. I am so glad to hear Desi is managing thru life. I NEVER can say Happy Thanksgiving anymore - it's always Happy Pranksgiving! :)
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