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
To donate to the Prayer Garden in his Memory:
Valentines and Anniversaries
Feb 14, 2014 12:43am
*** new pictures have been added from the past and present. Please look at the above "photo" link to see them.
This pink background, ironically was our very first background Vinny choose when we started his caring bridge 6 years ago. It was right after Valentines Day, and pink was his favorite color.
Six years ago, on February 15th, Vinny had his very first MRI that showed a 7 cm mass in his nasal passages, spreading from the base of the tongue, behind the nose, the eye, and into the Left Temporal Lobe of his brain. We heard the words "We found a mass" and our world changed from that point on forever. When the radiology reports came back as Embryonal Rhabdomyosarcoma with anaplastic cells on top, we were told that if Vinny fights the cancer, he would most probably relapse again, and was given a 50% chance of living only 5 more years.
A few days before this diagnosis, while we waited to see what was wrong with our son, our Reverend Ellis came to make a house call to pray for the doctors to find answers, whatever they may be. It was a warm February night and was raining, with no snow in the forecast. Vinny kept giggling and saying it was going to snow. We kept saying it was not. He would laugh and say "YES! It is!!" When we opened the door to let Reverend Ellis out, snow was falling all over the yard… the mailbox, Ellis's hair and camel-colored coat. It was the first prediction of many that Vinny would make, and the first impact that snow would have on us.
Last year, while on Hospice, Vinny wanted snow so badly that friends were bringing fake snow or real snow from the mountains just so he could have one more snow before he died. Then it snowed… a lot.. and kept on snowing. We had snow and more snow, and Blue Lightening Snow. Lola came over for multiple date nights, including Valentine's Day, when Vinny gave her a dozen roses, and again confessed his true love for her. It started snowing and Desi and Lola were able to play in the snow and bring snowballs to Vinny. Charlie was able to lift Vinny, gently for a few minutes so he could see the snow outside. Our friends from NJ also came to visit when it snowed again.
Now tomorrow is Valentines Day, one year later… and it has been snowing here for the past 2 days… 9 inches!! The most snow that NC has seen in the past 17 years (?). A few pictures were added also of Desi jumping in the snow on her trampoline. In one of the pictures, you can see the Vinny bench… and if you look carefully you can notice that a "Vinny" bird also sent some bird poop, that not even the snow could wash off!! The day before the snow, Charlie fixed our leaning mailbox. He straightened it, he freshly painted it black, and then cemented the base in concrete.. and in the concrete he placed Vinny's name in Legos. The concrete had not even dried before the Vinny bird pooped on the "letter i " in Vinny. See pictures. They are signs to us.. poop and snow telling us that Vinny is still here… and he is okay in Heaven.
He has been also sending me several signs in the number "44" signs. Ironically, a few days before I started getting number 44 signs, which is too much to get into right now, I had re-read some of my old caring bridge posts to catch up on my writing. I came across this journal about his "44" kick:
Journal: January 21st, 2009
Vinny (age 5 yrs, b-day Oct. 9, 2003) then decided that he wanted to bake a cake! 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 and are waiting for the others.... Vinny also said he wanted to have a costume party and be Luke Skywalker
A few days later I had written about the "44 reasons why I love you" game that we made up and still play every year on Valentines Day.
journal: Jan. 29, 2009
Last night Vinny was falling asleep in my arms on the couch. He looked so peaceful and just plain cute. I said "Vinny, what are 3 reasons why I love you." He said "Cuz you love me, cuz I am cute, cuz you love me." Then he looked at me, smiled, and whispered "Mama, what are 44 reasonswhy you love me?" He is still on the 44 kick from the fake 44th b-day party and cake we made a few days ago..... So I did. I named 44 reasons why I love him... and it struck something in me. We often say "I love you" but we don't say why and we often don't tell someone that we even do, and sometimes you lose the chance before the words are even said. So I went to Star Bucks today with my greatest friend, Katy, and I made her play my game. I told her to list 44 reasons why she loves me. It turned into a hysterical game of her naming 56 reasons in 15 minutes, why she loves me and me naming 51 for her... and counting. I have never laughed so hard, and I remembered what true friends really are. They play stupid games with you that you make up and they tell you every reason why you are loved. (Even if they are dumb, Katy.) So I challenge each of you to hug your spouse, your child or best friend and tell them those 44 reasons….
That was 5 years ago, and I challenged all of our caring bridge readers and friends to tell their loved ones 44 reasons why they are loved. That turned into a hysterical viral game on FB and in our guestbook with people telling us hundreds of reasons why they loved me, Vinny, Desi and Charlie. We try to play it every year now, and I challenge you all again to think of 44 reasons why you love the ones you do.
Tomorrow will be our 1st Valentines' Day without Vinny. The next day will be the 6th year anniversary of him being originally diagnosed on the 15th. And of course, on Tuesday, the 18th it will be the 1st year Anniversary of him earning his wings and flying to Heaven. He lived through Valentines Day for Lola and us, he made it those 5 years from diagnosis, and he died peacefully in his favorite Lego Room with the family he loved so much all at home together. Charlie took the day off from work that day, knowing that it would be one of our hardest days. Desiree wants to go to school that day, but says she will not be able to take tests or keep her mind focused. After school, we are all going with Lola's family to see the new LEGO Movie in his Memory that just came out. He had wanted to see it.
I do not have to repeat how hard this year has been for us, how it just feels like yesterday, how we still cry and wish we could do anything to have him back again. At the same time, we feel him. I felt him very, very strongly the other day. I felt he was on his knees playing Legos in the old Lego room which is now Desi's room. I felt him, and have been "okay" since then.
We are focused now on Desiree and her school work and some issues. I know that she is still having a hard time focusing and will often ask me what would have happened if she was the one who found Vinny dead.. what would have been different if we had all been in the room as he was passing. We talk gently about her questions, and she is still in counseling, but only she knows that sibling pain in her little heart.
She is also growing up so quickly. Last week we had her "rising 9th grade" night at her new High School. She is very excited to be going to a new school, to High School and the possibility of joining several clubs and joining Cross Country Track and Swim Team. She is looking forward to stopping French and taking Latin instead (her choice). I took 4 years in High School as well as Spanish… She will be great at it, and has the possibility of traveling to Greece and Rome in 2017 if she sticks with it. She is excited to be growing up, making new friends, and possibly starting Drivers Ed (not going to happen yet though). I can not believe in a blink of my eye, I suddenly have a child in Heaven, and another moving on to High School. On Feb. 20th it will be the 15th year Anniversary of meeting Charlie in Las Vegas for the first time ever… and in my mind I am still that young 20-something girl who intended to have a girl night in Vegas, and ran into a future husband (who by the way told me his name was Tony… like Tony Danza… not realizing that he would be confessing his name was REALLY Charlie 20 minutes later when he started having a true personal interest in his future wife….) Back then we had no clue we would marry… no clue we would have two children thrown into a medical world that even Doctors don't fully understand.
We have had a full life with true love and true friends and the best two children we could have ever asked for. We have also had the best support system during our craziness: YOU.
We are also so grateful and blessed that we have been able to give back to the children still battling cancer, and sharing the path of several new families who are just starting out on their journey. We are grateful that Vinny, even though he did not turn out to be an Earthly Cancer Survivor again, is still the inspiration to so many people. I love the e-mails and cards and stories that so many people, even strangers have shared. I gave a speech last week at the Harley Davidson HOG Meeting about our foundation and our upcoming Chili Cook-off and upcoming Bike Run. And it was amazing that so many people there had "Vinny" stories of their own. One was the husband of one of Vinny's teachers' assistants… one friend there told me that each time we help a child with cancer, it is Vinny fulfilling his legacy. A few days later, I went to the hospital to visit Desi's friend, Savanna, and ran into two other families that we bonded with. One is a new little 2 year old newly diagnosed. The other is Brandon, who was put on Hospice the very next day at the Hospice Home… a boy we will be Honoring and financially helping with our next Loop Night on Feb. 27th. The whole community is invited.
Also at the hospital, I met a very special volunteer who wanted to give me a hug. I had not met her yet, but she knew me, and she knew Vinny… she has been reading our caring bridge for years through our mutual friend Holly Adams whose son Benjamin is our survivor. She told me how much Vinny had touched her life and how much she loves still coming to this page to see his pictures. It was beyond touching. Thank you so much for giving me such a special message!
And in his memory, we continue helping and loving and reaching more kids. We have 5 families now from 3 different hospitals who are lined up to go to our Safe Haven Beach condo this summer!!! With you help and the donations directed towards Safe Haven, you have made this possible to send them on a wish-like trip to the beach!
Last week also I was asked to talk on 98.7 Simon radio about our foundation, Vinny and upcoming events. I hope to have a downloadable link on here very soon, when I hear from them. I was also tearfully surprised to see that Vinny's Make-a-Wish Grantor from when he was 4 years ago was the Secretary there!!! It was GREAT to see you Connie!! Joe and Connie were the best Grantors ever!
Before announcing our upcoming Foundation events, Desiree is involved also in our Church's Annual PINE NEEDLE SALE! Desi is taking 2 trips this summer with her youth group. One is in June to Washington, DC to help feed the homeless in the Soup Kitchens. The 2nd is Wilderness Trail in August. The Pine Needle Sale will help Desi and her youth group to be able to afford these trips. I am actually in charge of the phone lines this month for pre-orders!! My way of helping the youth and the church we love so much.
Pine Needle Bales are $4.50 for pick up yourself
$5.50 per bale delivered in March
$6.50 per bale to be delivered and spread in March by the youth.. (within 15 mile radius from our Church in Kernersville). And LANDSCAPERS who order over 200+ bales the cost is $4. If you would like to order and have Desi be recognized as the youth sales person, please e-mail me at email@example.com. If you have another youth member who you would like recognized or want it to be credited to the youth in general, you can call our google number and pre-order at 336-448-3794.
We do have several upcoming events, that are listed on our www.kidsofchildhoodcancer.org website and also on our FB page: Kids of Childhood Cancer
But to re-cap them and SAVE the dates:
Right now, there is an on-going on-line fundraiser that ANY of you can order from: Jennifer has graciously offered her proceeds from her Pampered Chef sales to our foundation through Feb. 26th. Order here: Visit the following link: http://new.pamperedchef.com/pws/jenniferscooking/guest-landing/8858994392219 to place an order online. Look for Kids of Childhood Cancer as host.
On February 22nd we are having our 3rd Annual Chili 4 our Kids Cook-off!! All information is on our websites, and also our the Chili Cook-off page: www.chili4ourkids.org at SMOKIN HARLEY DAVIDSON!!!
On Feb. 27th we are having a "In Honor of Brandon Ingram" Fundraiser night for Brandon (Brandon's Warriors on FB) and all of our proceeds and donations from Loop Night will be given to his family to help with the financial burden of the cancer world. Feb. 27th, 5-9 PM at the Kernersville location (1030 S. Main Street in K-ville).
on March 1st is our 3rd Annual Glory Street Quartet Concert at 7 PM at Sedge Garden UMC. 794 Sedge Garden Rd in Kernersville. This concert starring Glory Street Quartet and Squire Parsons will be FREE admission with a Love Offering supporting our Kids.
April 12th is our SPAGHETTI DINNER at Sedge Garden UMC again! We will have a Silent Auction, and will have Jerry Hamilton and Charlie cooking!! We are looking for help and Volunteers!! Please e-mail me if you are able to volunteer or have questions!
4th Thursday of each month is the Loop Night.
Our 4th Annual Walk 4 our Kids will be on May 10th!!! Volunteers are needed and a meeting will be announced soon! To sign up on your own team donate, sponsor or JOIN our team visit: www.walk4ourkids.org
Our 3rd Annual Bike Run is on June 7th. www.ride4ourkids.org
Thank you all again for your love and support. HAPPY VALENTINES DAY!!!
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