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:
Nov 25, 2013 11:34pm
This is a knock-knock joke that a friend just sent to me that Vinny e-mailed her last year on Christmas day… the day he became paralyzed for good. Even though he was on Hospice, not walking, and in great pain, he never lost that sweet sense of humor. It still brings laughter to read some of the old e-mails and jokes he e-mailed during this time from his private account. He did have a great sense of humor!!
It is very hard for us to believe that it was exactly one year ago that we were not entirely sure what was causing Vinny's back pain, but we suspected a relapse. We went to Myrtle Beach to celebrate Thanksgiving, not knowing it would be his last. On the way down, the Blue Angel appeared in the picture of him in the car, with no explanation… it was a year ago that even when he was suffering with intense pain, he still built sandcastles and played on the beach… he enjoyed the Pirate Show, and learned how to dip his bread in gravy for the first time ever. Up until that Thanksgiving, he had refused to try sauce of any kind, including ketchup. He hated the smell of ketchup and anything "touching" his food was a horrendous thought… until he discovered that "dipping" is really very good after all! Just not ketchup. I do not know how many times I pulled full ketchup bottles out of our kitchen trash can after finding Vinny crawling up the refrigerator shelves to get it out and hide it from Desi… who loves ketchup. But gravy last year, was a different story.
It was a year ago that he started all of his "Happy Pranksgiving" tricks .. I am still updating them on his FB page!! But also a year ago that our world really started crumbling. It crumbled almost 6 years ago when we first heard that Vinny had "a mass". It crumbled again when we found out that the "mass" was a 7 cm tumor named Embryonal Rhabdomyosarcoma. We crumbled with each relapse or bad report… we crumbled when we were told he had short months to live… the 1st time, the 2nd time, the 3rd time, and the 4th time… all being false scares until last year.
And today I crumbled a little bit more when two men from Everlasting Monuments showed up at our house to install the first of two Memorial Benches we ordered for Vinny's Memorial Gardens. We have waited for the benches for a while… the planning of a "Memorial Garden" and the Vinny benches started before Vinny passed away, but after some difficulties, we changed venues and instead ordered two benches for two different locations. One location is at Union Cross Elementary School, with a memorial bench that will hopefully be installed next week, if the ground is not too frozen. Union Cross was Vinny's elementary school (and Desi's old school) and has always been so loving and supportive to our family. They have planted a Dogwood Tree for Vinny right in front of his school, with a Memorial Plaque, and his 2nd bench will also be there. But we also chose to buy a 2nd one for our own special garden…it was placed here today next to Grandma June's weeping willow tree, our Angel statue, our dog's grave, and the fire pit. We can sit there, under the tree and be with Vinny. We thank everyone who had donated after his funeral to make this possible.
Even though we waited for the benches, and got a little frustrated after another recent delay… the one thing we have waited for for so long, that we thought we were ready for, caused more tears and a sharp pain of sadness when it actually arrived. When the bench was actually being wheeled in, it broke my heart to think that THIS is the final result of a 5 year battle with cancer… THIS is what we now have of our little boy. The bench is beautiful.. they did an amazing job. One of the men (Juan) who delivered the bench was one of the nicest people I have met in a very long time. His compassionate attitude made a difference.
We will adjust, we will sit on the bench outside next to the fire pit, roasting marshmallows, and talking about Vinny. But it is one more reminder that this is so final… one more reminder that he is not here, where he should be.
School is on a 2 hour delay tomorrow due to an Icy Precipitation Alert, and the weather report also calls for SNOW on Wednesday, which is another reminder of Vinny this time of year and how he had prayed for one more snow last year… and it snowed for him several times. I will always think of Vinny when it snows…. How he loved this whole time of year! Our "firsts" are very, very hard and will continue to be so through February on his "Angel" date.
Everything reminds us of him.
Desiree did have a great trip with the Youth Group from our Church last weekend. Charlie and I did enjoy our weekend in Boone. We enjoyed getting away, we found great little wine shop with free tastings of wine and food, and then we followed that by meeting Wayne for dinner. Wayne's son also earned his wings 6 years ago, and he truly helped to put some of our grief into perspective.
Then this past Saturday, Charlie, Desi and I were able to go down to the LEGO Store at Concord Mills to meet Mark for lunch… and then had a shopping spree for the children at our hospital. Wells Fargo Bank in GA gave our foundation a $1,000 grant and asked us to spend it on our Vinny's ToyBox and Lego therapy for the children on our ward. We have been down to the LEGO store for years, several times. So this time, Charlie said he knew the way and we would not need the GPS. Somehow, we ended up on a different highway, "lost", stopping to ask directions from a man who told us the WRONG way again, and then had to call Mark for more directions. We said Vinny was pranking us because we were going without him!
On our way home, with all of our LEGO sets, we thought of how much Vinny would have loved the shopping… and how he would have wanted to keep all the LEGOs himself! it reminded me of the big LEGO Spill in West VA last year a few weeks after his funeral… and several friends sent me the link and swore it was Vinny's pranks giving!! The link from last year is here…
We do wish everyone a very HAPPY THANKSGIVING… and a Happy Pranksgiving!! We will write again with more news after that!!
We are thankful that we did have 9 wonderful years with Vinny… even the last 5 years that he suffered from cancer… he still made us beautiful memories. We are thankful that we have made it through our grieving this long… that Desiree is starting to thrive again even through her tears… that Charlie and I are "coping" as a family, and that we have had the best support system ever with the friends we have made along the way… We have been so thankful to all of the love our Church, Sedge Garden UMC has shown us over the years… for the friends and family we have made on our ward at "Camp Brenner".. for the Survivors we have known and the Angels we will never forget along our journey.. .I am thankful also to our counselor, Jeff, at the hospital, to my Hospice Counselor, Donna… for all of our family… to our schools, our Oncology Team, to Wake Forest University, and especially to you… our Caring Bridge readers who still listen when I write about Vinny. I do not like to think what the past 5 years could have been without you.
Happy Thanksgiving to all of you.. Cherish each day, each moment with your family and children. Make very special memories this Thursday!!
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