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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

2 years

"I said "Vinny, if God is calling you home, it is okay to go."  Vinny:  "No Mama. It not time. I love my life and I just want to spend more time with you." 

Two years ago, tonight, Vinny earned his wings at 11:10 PM.  This day brings back such a surge of emotions and memories.  Yes, we knew it was coming, but does that make a difference when it actually happens?  No. Easier in a way?  No.  I had spent 5 whole years in the hospital, in the cancer world with Vinny, giving him life, helping him fight, defying all statistics, predictions, and "laughing in the face of danger" as he used to say.  He was "fearless".  During our 9 weeks of Hospice, I spent every moment I could in the "LEGO Room" with Vinny where we both slept.  I spent countless hours on my knees on the floor furiously building Legos that he could no longer build so I could finish the sets before he died, and we spent day after day watching Dog with a Blog, Austin and Ally and Good Luck Charlie on Disney channel. Every morning at 7 AM he would wake me up and say "What time is it? Give me the remote" and our day would start.  Kim from Hospice would come at 10 AM, and would check his morphine pump only after he would breathe in her face and ask what he smelled like that day.  Sometimes he would say we could only check his vitals and morphine pump after we made him Dirt or Non-Bake Reeses Dessert and Kim and I would furiously throw the ingredients together (not in her job description) so we could change his bedsore dressing, his morphine pump and his little diapers.  

A few nights before he passed, he started incessantly talking to God, to Angels, and hallucinating.  He would ask me for Preacher Kin-Wah's eye patch who had also passed away from cancer, and whose family presented me with his eye patch at his funeral.  He asked me to "stop the 3 little girls" (his Guardian Angels) who were trying to take him away on the train.  I would stop the train at 2 AM so he could spend more time with us.  One night he was shaking his hands and demanding "I know! I know! Not yet!" as if he were bargaining with God.  I was exhausted.  I had our Healing Touch professional, Pat, come to the house to transition him, I had Dr. McLean come to talk to Vinny and pray over him as he does the other children passing in the hospital.  Our counselor, Jeff, came to have a Light Saber Fight. Wayne came to build Legos.   Nurse Nancy came to visit and helped me change his diapers, and as we did, we flipped him over into his upright position, and Vinny said "Pull me down."  We pulled him down.  He said "Now pull me up." We pulled him up.  He said "Now re-position me."  17 times over and over until I was exhausted.  Nancy asked me why he was doing that, so I asked Vinny.  Vinny said "It is my game. It is the only way I can play with you.  It feels like I can walk again."   By this time, I was at wit's end and the hospice nurse helped me call Dr. McLean to prescribe some anti-anxiety medication to help him rest, so I could rest.  9 weeks is a very long time, but not as long as others have done it.  Vinny had been refusing for weeks to let me bathe him.  His dry skin was flaking.  He would hold up his little hands and say "But look at these" as they were peeling but still refused lotion.  His teeth had not been brushed because they hurt (huge pet peeve of mine) and his ears constantly were picked as they itched (another sign of morphine reactions).    

Even as he refused it, I force-fed him the Ativan to calm him down around 6 PM.  And he fell into a peaceful sleep.  While sleeping, I quietly sponge-bathed him, washed his hair, cut his nails, brushed his teeth, rubbed Lugi Shea Cocoa Butter all over his body, kissed him and went downstairs, knowing he would yell "MA!!!" as soon as he woke up as he always did if I left the room to use the bathroom, eat or shower.  I went downstairs and sat on the catch, pouring a glass of wine and picking up my book. I said to Charlie "This is the first time in 9 weeks that I can sit and have a glass of wine with you!"  I listened, I read, and at 11:10 PM, Charlie went upstairs to find him already transitioned to Heaven.  We had made a deal that Vinny and I would be together when he passed, that I would be there… that he would wait for me.   But the Hospice Counselor has said, as others have said, sometimes they wait for you to leave the room so you won't have to remember that moment of passing forever.   One friend said that it was exactly as it was supposed to be.  Me giving him the medication was a gift so he could pass peacefully… that he left this earth exactly how he was created:   I was with Charlie, Desi was sleeping, and Vinny was with God.  But still I have the "What If's".  What if I had been there… what if I hadn't given him the medication… Would he have waited a few more days? Would I have spent more time with him? 

Today,  the moments, the visions are recycling through my mind… at this time I…. at this time….. at this time we found him gone.  
And I had poured out his journey and my heart through caring bridge and you caring bridge readers are and were our top support team.  You read every word, you laughed at his pranks, you cried at our pain, you loved him. We could not have done it without you and still can't.  When I posted today on Facebook,  I received hundreds of messages, some from strangers who I never knew were quietly reading my entries. The outpouring of love and remembering is still there. I once said that watching his hospice journey, his death, was intriguing, horrific, and beautiful all at once.  We got to talk about Heaven and Angels, about the Invisible String that we would pull that attached to our hearts whenever we needed each other while he was in Heaven and we would come.  He talked about what signs he would show us and what he would come back as… his favorite two:  Bird Poop and Snow.  Hundreds of people still write or e-mail when globs of poop hit their cars and windshields.  

And today he sent snow. Not only here in NC, but in TN, in Arkansas AND in San Diego, CA.  The messages have been hysterical.  It snowed on the 16th (day after his anniversary of dx) and today, his Angel-versary.  Last night a great friend and old nurse of ours on the ward had an incredible Dream Vision of Vinny. He came back to earth for his birthday, which she said might be his "birthday in Heaven" (i.e.  Today).  He was happy and laughing and came back for white cake which he smeared all over his face. He then cuddled with her on his lap… she felt him in reality…. and he told her he LOVED his "new home". She said "Heaven?"  And he said yes. He loves it. And his speech was perfect… he had no Imperfect Velpharyngeal insufficiency due to his cleft. And at the end of the dream, two people rolled him away on a red wagon, back to Heaven.   It was a gift that she called me tonight.  

Today I had lunch with a very close friend from my For Mom's Only Bereaved Mom's Group who also lost her son 4 years ago.  We had an amazing talk about both boys, about grief, about life as it changes… And although neither one of us usually quote the Bible,  she said she read a quote in the newspaper the other day, which made her think of me, and Vinny and the life I have led.  It said:

What does true faith look like?
Pure and genuine religion in the sight of God the Father means caring for orphans, widows,
and the distressed and refusing to let the world corrupt you.
  James 1:27   New Living Translation

She said the most powerful words… that after all of this, I still care for others, take care of the other cancer families, and I have not let the world corrupt us. A 2nd friend sent another quote and it said "The reality is that you will grieve forever. You will not 'get over' the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again, but you will never be the same. Nor should you be the same, nor would you want to be."

And it is so true….  Nor are we the same, nor would I want us to be.  

On the 15th of February was the 7th year anniversary of Vinny's cancer dx.  The very first day that we ever heard the words "We found a mass".  And those 4 little words can shatter your world as you know it, and life was never the same.  But it changed, somewhat for the better. We learned to appreciate life, to appreciate the little moments, to count each day as a blessing. We made the best friends that we could have possibly made, fulfilled our bucket list, and made Vinny's life incredibly happy.  He loved life and appreciated everything everyone did for him during his 5 years of cancer, and 4 intense battles.  He laughed, he loved, we all learned. 

One of the greatest things he taught me about was unconditional love.  He was my soulmate, my little boy,  my love of my life.  He taught me to accept those who are "different",  to be tolerant of those less understanding or educated, he taught me acceptance… and that Angels are real, that God talks, that Heaven is very real. 
And 4 years ago, he had asked one night before Valentine's Day to list 10 reasons why I love him.  As I "rocked" him to sleep, I gave him my reasons, and he gave me 10 of his own. The next day, my friend Katy and I went to Starbucks and I challenged her at the game.  It turned into a hysterical game of 56 crazy, goofy reasons why she loved me and I threw just as many back at her… and we were in tears laughing… and I then challenged all of our supporters and readers to tell their spouses, if they loved them, the 10 reasons why they do… and I received hundreds of messages of why people loved our family, and why they loved others. He opened this game, that has been on-going on-line for 4 years now… just because he had the heart the size of the world.

This month, these past several months have been truly hard for our family.  Because of our missing Vinny and for several other reasons. Please pray for our healing and moving forward towards a happier future… for all of us.  Desiree especially. 

And my thoughts and prayers are also with several others…  too many to count actually, but immediate prayers are asked for our Camp Brenner kids:
CC Houck: http://www.caringbridge.org/visit/siennahouck
Sofie Zuluaga: http://www.caringbridge.org/visit/sofiezuluaga
and Will Zimmerman: http://www.caringbridge.org/visit/willzimmerman
All have faced relapses and are currently under hospital care and good friends who also fought side by side with Vinny.

Also please send prayers to my closet childhood friend who lives here… one of the reasons we moved to this area was my lifetime friendship with her…. who has just been diagnosed with Breast Cancer.  After hearing the news, she was driving home on the 16th, and it started to snow… and she knew it was Vinny saying she would be okay.  Hoping and praying for her while she goes back for more tests on Weds. It was the last piece of news I expected when she called me yesterday and my world temporarily shut down again… as did hers.  But today we fight again.

** This Saturday is supposed to be our 4th Annual Chili Cook-off. We are watching the weather and if it snows, we will reschedule hopefully for March 14th, but if more snow holds out WE ARE STILL ON!!    All details are on our FB page: https://www.facebook.com/KidsOfChildhoodCancer?ref=hl  our event page: https://www.facebook.com/events/728934750548097/  and www.chili4ourkids.org   It is $20 to register your chili to win cash prizes, trophies and "Best Chili in the Triad".   It is $10 to come eat, judge and for up to 3 votes.   PLEASE come out to support our Kids currently battling cancer financially, and to help send them on Wish-Like trips to our Safe Haven Beach Condo!!! We had an incredible turnout last year!!   

* On March 7th,  Glory Street Quartet from Sedge Garden United Methodist Church in Kernersville will host a concert, 4 years in a row to help benefit Kids of Childhood Cancer,  Wilderness Trail and at the Chris Holder Scholarship Foundation! Chris Holder was also a very special member of our Church who also earned his wings and is also giving back through scholarship funding.   The concert is free, and a love offering will be held for all 3 foundations.  The concert is at:
SGUMC:  794 Sedge Garden Road in Kernersville.  
Saturday, March 7th at 7 PM.
For more details, please e-mail me at support@kidsofchildhoodcancer.org or call Sedge Garden UMC!!
The quartet consists of 4 amazing men whose music is widely loved. 

And finally our 5th Annual "Walk 4 Our Kids" is up and running coming on May 9th, the day before Mothers Day! Honoring all of our Survivors, our Angels, and our Moms who have had their children fight.  Let's make this the most amazing year!!  www.walk4ourkids.org   It is not too soon to sign up, form a team or JOIN TEAM VINNY!!  We are looking for walkers, runners, Sponsors and Donors! 100% of all proceeds help the local families financially.  

Thank you to ALL of you for your love and support and for continuing our healing journey with us.  

We love and miss you Vinny!!!! 



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Comments

60 Comments

Marcie Abdellaoui
By Marcie Abdellaoui
I still read all your updates, always with tears falling down my face, a laugh in between when you remember something funny Vinny said:) Just something about that little boy that hooked me right away. Your a beautiful writer, thank you. Blessings to you and your family.
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Debbie Brookover
By Debbie Brookover
I miss Vinny. What a Prankster!! The other day when I came out from work (in not such a great mood), there was bird poop on my car door. I looked up and said, "Thanks Vinny that is exactly what I needed. Thanks for making me smile." The snow always reminds me of Vinny. I remember being so excited when it snowed at your house after he had been wishing for it. He was and is quite the special little guy. Thanks for sharing him with me.
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Rhonda Murphy
By Rhonda Murphy
Sarah, your post inspire me. I'm still in tears as I read this and remember reading all these post from when you posted when Vinny was with you. I cry, laugh, and remember all the pranks. He was an amazing little boy who touched so many lives and still doing so today. He was an inspiration to me and touched my life in so many ways. I can't imagine how you feel but please know that you and your family are in my thoughts and prayers. Sending love and (((Hugs))) from TN
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Linda Nelson
By Linda Nelson
Sweet boy. We all love and miss Vinny.
Preston Bowden
By Preston B. (Brett's dad)
We do love and miss you Vinny. I'm sorry Sarah. I know how difficult life is when we have to continue in it even after the loss of a child. I know how long each day is and how hard it is sometimes just to make yourself get out of bed. But that's why we have to pull together and make each day count. God bless you for what you do to make life a little easier for those families who are still in this fight for the life of their child. Hugs and smiles today.
Dee Heath
By Dee Heath
Sarah, I love your posts. I laugh, I cry. I know some of what you feel . I didn't lose a child though, I lost my spouse of 25 years and I really liked the quotes you gave. Its so true. I think Vinny is coming to visit me again late this afternoon and tonigh5 (snow). I'll be looking for him again. He was here earlier this week too. I think of you and your family often.
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June Junko
By June Junko
I'm saying some prayers for the Lord to comfort you and all your family and surround you with His amazing love. Many hugs, june ~ send love today~
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Sandy McIntyre
By Sandy McIntyre
Prayers for your family as you go through grief and missing Vinny. May the Lord strengthen you all.
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Ian Hoorneman
By
Beautiful, Wonney. I love you, and am always thinking of the Sweet Little Guy.
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Joyce Nosker
By Joyce Nosker
Sarah,

This is a beautiful post. When I got up this morning I wondered if you were thinking....2yrs ago at this time....., and I've wondered this about every birthday, date of diagnosis and each relapse. You couldn't have done anything more to be the best mother that God could give Vinny. God also created Vinny to be your perfect son. A prankster, but perfect.

So thankful that you and your family have a good support system. May the Lord see you through this night and every day and night.

Thanks for mentioning the other children who are suffering.
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