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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

Seasons and time

I know several months have passed, and I have not been able to write.  We got through Halloween… and then celebrated Vinny's 11th birthday at the Loop in Kernersville with 100 supporters who came to participate in a Balloon Release in Vinny's memory.   100 supporters who love Vinny wrote messages on balloons that sailed to Heaven telling Vinny how much we miss and love him… GP (daddy on our ward) started the birthday song for us, and I knew that Vinny was smiling down, dancing and clapping, knowing that he is missed by so many.  Thank you to all of you who came out to celebrate his 11th birthday. 

A few days later, Desi, Charlie and I made an overnight trip to Asheville in the mountains where we stayed at a hotel we had stayed in on Vinny's 7th birthday, ate at the restaurant we ate at with him… and then made a trip to Toys R Us to look for Legos.  When Vinny was on Hospice, I spent hours and hours on my knees on the floor, building Lego sets for Vinny when he could no longer build.  He lay in the bed, watching me, building through me, and  emailing me hundreds of Lego links and lego instructions teaching me how to build the legos I had questions about, and sending links to all the legos he wanted me to build when he was gone… and I still am.  Years ago he had Lego Agent Sets that had been discontinued… and when they fell apart, we would put them into "Lego Agents" buckets saying that we would one day re-build them.  While on Hospice, he asked me to pull out all of the buckets, find the instructions, and separate the agent bricks by each set.  And I spent hours painstakingly doing so.   He kept telling me that the Agents would return… the sets would come back.  And during our trip to Toys R Us,  I found the new "Special Agents" Lego sets.  THEY ARE BACK!!!!    So guess what I bought me for his birthday? 

Thanksgiving was also very hard. We took a trip to Myrtle Beach to go to several of our old stomping grounds that we used to go when Vinny was here. We reminisced about our times at the Pirate Voyage Dinner Theater, at Captain George's Seafood, Shopping at Broadway by the Sea, and swimming with the stingray at the Aquarium… It was not the same though at all.   Being at the places we used to visit without him is just too different and too hard for us at times.  Desiree made the trip enjoyable for me though.  She has really gotten into exercise and weight-lighting, training for LaCrosse in February, and telling me that working out is one of her biggest coping mechanisms to help deal with grief.  So every night for 4 nights, I went with Desi to the hotel gym facilities and she trained me in the gym and weight-lifting as well, and it was the best part of our entire vacation.  Mother /daughter time together, working out, laughing, and bonding.  I feel so blessed that Desi has opened up to me more and more, and has continued to blossom during this period of time. She is now my main focus. 

Desiree has blossomed into a beautiful teenager who has a very strong support system, great friends at school who I have gotten to know, an amazing Teen Support Group at Hospice, and a new tutor to help her in the subject she has been behind in most. She is singing in the Church Choir, the School Women's Choir, finished her Cross Country Season with an Academic Letter at the awards ceremony,  is signing up for the written part of the Driver's Ed class already and has already had one college campus visit to Appalachian State University in Boone, where she hopes to apply in 3 more years. I do not know where the time is going.

I, myself, have started a new part-time job 3 days a week at World Market in Winston-Salem.  I have not had a "weel job" (as Vinny used to say) in 15 years because of the children and medical issues.  I do like to be back in the work-force, meeting new people, and contributing to household finances.  I am also volunteering once a week on our ward which leaves one day off to cram in as much foundation stuff as I possibly can.  I have been behind in so much, but am working on the time-management… It has just been a big Lifestyle change for me to adjust to. 

But losing Vinny, even 22 months later is still also a huge lifestyle change.
During my time at Myrtle Beach, I spent the nights up late, reading a lot of the old caring bridge posts and working on my one-day book.  To read some of the things I wrote that I would have forgotten by now if not captured here was eye-opening, sometimes funny, but more often than not, very sad, hard memories.  Looking back, I can not believe Vinny went through what he had gone through and fought so hard, and survived for 5 whole years.  I would not have been the brave little fighter that he was for so long…. the brave strong little fighters that all of the children I know with cancer are still today. 

This Tuesday night was our 5th Annual Polar Express night on the ward. Our foundation puts on a big Christmas Polar Express Party where we wear pajamas, invite the kids, have hot cocoa, refreshments, watch the movie, and then after the movie our Mr. and Mrs. Claus comes in with gifts for each child, in-patient and out-patient.  For some of the children on our ward it is the only Christmas Party they can attend due to germs and neutropenia.  For some of the kids, who are not so fortunate,  the presents that we give, along with presents the staff give out,  as well as the ones the other foundations give… are the only gifts they will receive for Christmas.  We make a huge difference in the lives of the children and my heart and passion still lies in the children battling on… and there are so many… and they keep on coming.  A few newbies came to the party,  and it is very hard to realize that they have just entered our world, while others are ending theirs.  We try to make special memories and moments for the children during their time there.   The night was wonderful for the children, and I am very, very grateful to all of our volunteers, our Board Members, and the supporters who donated all of the toys,  Thank you to Candy Lockwood and her book club for donating 20 filled stockings to hand out to the kids.  The night would not have been possible without the help from  Amber, Jerry, Judy, Carrie, Nicole, Jennifer, Chris, Julie, Stephen and Jeff, and Doug and Beverly. THANK YOU all so much for being there and making the night so successful and fun.  

And Polar Express is always bittersweet for Desi and me because 2 years ago on Polar Express Night, Vinny was in tremendous pain, very determined to stay at the party though. It is the night that Dr. McLean walked into the party, pulled us into the clinic room at 6:30 PM to look at Vinny's back and told us to come back in a few days (on Monday) to be admitted for pain control… I had insisted on the CT Scan that Monday… and next day found out about the 5 new tumors in the Spinal Column  and he was put on Hospice on Dec. 21st.  The party was the last party Vinny would ever attend, before losing the ability to ever  walk again just 5 days later. 

Christmas is approaching and multiple memories of how much Vinny loved Christmas and the season and the SNOW keep flooding back to us.   I had lunch with my good friend, Diane today, as I do once a month. She is another Bereaved Mom, and we have been meeting for lunches once a month for the past 1 1/2 years.  She did not know Vinny in person, she is not in the cancer world… but she knows him and all about him through our talks.  Last year,  three times during our lunches, we got snowed in at El Palenque when we we eating… Three times  the snow was blizzard-like while not expecting it, and we would get stuck there, watching the snow and talking.  So today for Christmas, she gave me the most beautiful earrings shaped like Snowflakes in memory of Vinny and or our lunches.  One tiny gesture like that can call forth a flood of memories.  

I have to admit that this Christmas I have focused on the children at the hospital, I have helped with the Pediatric Oncology Party and the Polar Express party, we are making it special for Desiree… but I am not in the Christmas spirit this year. The day will come and go for me.  We miss Vinny.  Losing a child changes the dynamics of a family, the dynamics of a married couple… as a person in general.  It changes who you are, and molds you into someone else, sometimes completely…   We have been through many changes lately, some very hard drastic changes… and we try to find our new paths towards healing as a whole. We appreciate all of the messages, the thoughts, the e-mails the cards, and the prayers during this season.  
 

This season our foundation has supplied the presents for the Pediatric Oncology Party,  has supplied the gifts for Polar Express night, and has adopted 3 families with the help of 3 Corporate Businesses.  We have paid 4 big utility bills and a Mortgage this week for 3 different families and have recently sent 16 families to our beach condo… and sending more through the next upcoming months. Even during the winter months, it is an amazing getaway.  For last minute gift ideas and to continue with the support of our children, please remember that our Amazon Smile link gives a percentage of all Amazon.com Purchases  made through the link back to our foundation:  https://smile.amazon.com/ch/27-0304893 

and our new 2015 KOCC Calendars, Shirts,  Tote Bags and Hoodies are available on Shopify: http://kids-of-childhood-cancer.myshopify.com/
I will post pictures as soon as I can, I will catch up on things more soon…

We love and appreciate all of you who continue reading and have supported us for the past 6 years.  You have made a difference in our lives and in the lives of the children we know fighting this awful disease.  
I hope you all have a very Merry Christmas season. 








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Comments

27 Comments

Tina Lovings
By Tina Lovings
Sarah, seems like you all have been really busy. Desi is amazing. High school appears to be a great adventure for her. Happy that she is doing well and being involved in so many activities. Thanks for writing an update. Thinking of you often. Love you! Tina
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john & carol giovinco
By john & carol giovinco
Thank you, Sarah, for the note and update. Vinny and all of you remain in our PRAYERS.....Little Vinny touched our hearts forever and will remain there. We want to wish our Angel Vinny and his beautiful Family a BLESSED CHRISTMAS.......GOD BLESS all!
Carol & John G.
Az.
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Susan Schmidly
By Susan Schmidly
I love you all, and think of you and keep you in my daily prayers as usual...you know that you have been in my thoughts and prayers even more since the holiday season began...Vinny and each one if you have taught me so much...
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Barbara Whipple
By Barbara Whipple
You always are not far from my thoughts & prayers.
I understand better this year the difficulty of the holidays
Jennifer Waters
By Jennifer Waters
It pleases me at how well Desiree has done and has learned how to cope. Children are so strong, they amaze me. I am glad you have good times and laughter with her. My thoughts and prayers are with you as you celebrate the season without your Vinny in person. (((hugs)))
Sandy McIntyre
By Sandy McIntyre
Prayers for your comfort as you grieve and for success in all your endeavors. May you be blessed for what you do and may God encompass you in His loving arms.
Kate Harper
By
Thank you for your heartfelt and moving journal entry. I'm so happy to hear how well Desiree is doing. She is such a strong and beautiful young woman, you and Charlie must be so proud of her. My wish for you and your family is a peaceful and loving Christmas. Vinny will always be in our hearts and memories.
Love,
Kate
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Sharon Franklin
By Sharon Franklin
You are richly blessed with your family and memories of Vinny. He taught us all how to live and enjoy life. What a great lesson!
Wishing you and your family a peaceful and blessed Christmas!
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Ruth Warner
By Ruth Warner
Thank you for blessing so many others through the heartache of losing Vinny. May your family be especially blessed this CHRISTmas season.
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Lisa Petrow
By Lisa Petrow
I know what it feels like to loose someone you love! I have been down that path countless times!!
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1 person hearted this