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Mommy : "When you become an Angel, Vinny, maybe you can help the doctors find the Cure for the rest of our little friends". 
Vinny:   "That going to be very hard, but I will twy."   ` (while on Hospice)

(a few new picture have been posted, with more left to come!)

It has been so long since I have written. I have wanted to multiple times, but then I sit down with so much to say, and I freeze at times.  Life is rushing by and time goes so quickly, and I often feel that I can not keep up… but at the same time stands still.  I am so overwhelmed at so much to do at times, that I can not do anything at all.  Our life, our minds, our hearts at times have just been "stuck" or "frozen" since the loss of Vinny and even though 16 months have gone by, the pain, the sadness, the utter hole he has left in our world, our life, our hearts, our marriage… our family is gaping.  Every day people still check this caring bridge site.  Every day someone likes his page, or writes a memory on the Vinny Facebook page ("Vinny Defies the Odds and Kicks Cancer in the Fanny" on FB), or e-mails me to ask me to write here again because they have not heard from me lately and they are worried.  It touches me so deeply.   Thank you. 

So much has happened since I wrote last.  Desiree has grown up so quickly and turned into a beautiful lady.  She graduated from 8th grade and is starting High School at the end of August!!   She runs 2 miles every morning preparing for Cross Country Track that she has already signed up for.  She received acknowledgement at the Athletic Awards Ceremony the last week of school!!!   She loves her Hospice Teen Support Group and her counselor, and is surrounded by a good group of neighborhood friends, and one long-time crush. She is talking more to me, sharing more, growing, blossoming into a young lady before our eyes.  She desperately misses her brother and shares his pictures and memories all of the time.  She has grown up so quickly and is truly looking forward to her High School years, but a huge part of her is still crushed, still a damaged sibling in the wake of the cancer years.  It has changed all of us.  

We still feel Vinny all around us and he sends so many signs.  One of my great friends who I have not seen since Halloween, who I had been thinking of so much lately, e-mailed out of the blue, telling me about a Dream Visit she had of Vinny last month while at  Oak Island (the last place I had a Dream Visit as well). It was so real, she woke up looking for him, not being able to go back to sleep for 3 more hours… and in the dream visit was a private message to me… something Vinny said that only I could interpret for her… and that was my sign that it was real… something I needed to hear. We still hear and see him strongly especially in things pertaining to birds, butterflies and the nature he said he would come to us through.   

I have been slack in updates, in foundation news, in Thank You's.  I am trying my hardest to find a "new normal" in a world that is never as safe or normal as it once was or ever will be again.  Where I feel most "safe" is still in the cancer world… at the hospital, talking to the other cancer families or the Bereaved parents in my circle, in the people who are not afraid to mention Vinny's name, who are happy to remember him in laughter, with his pranks, and his funny signs he sends from Heaven.

After school ended,  Charlie, Desi and I rented a week for Father's Day week at our Safe Haven Beach Condo.  Holidays are not easy and memories (good and bad) sometimes overshadow the days and make us laugh.. and cry. It is easier to get away on the Holidays now rather than sit at home and soak up the memories that make us miss him more. 
  We spent a wonderful week at the beach… and our little Sparrow who came to visit us every day last year on our balcony was there again this year.  Everyone who went last year after our visit, got visits from "Vinny" and they also  nicknamed him "Vinny" and continued feeding the sparrow on our balcony.  The tradition continues this year as "Vinny" came back.  The beach was INCREDIBLE.  The resort is amazing, the beach was Heavenly, and it was the respite that we badly needed.  This time, more than any other time, it was harder to leave there. It is such a special place for all of us. 


We had already rented out the week for ourselves, when I got a message from another fellow cancer Mom from our ward saying that her son was put on a break from chemo, not doing well at all, and needed to get away… asking if our condo was free.  We were already ready to go, but I knew in my heart that I would feel horrible if anything were to happen to this young man on our ward… and he was not able to make it to the beach because of us.   So our foundation was able to get them another condo on the floor above us, and we went to the beach together.  It was an amazing trip for both of our families.  Our foundation has been able to send 14 families,  from 6 different hospitals now in 3 different locations to our Safe Haven as a "Wish-like" trip this year since Spring.  Our foundation has done amazingly well… but the more money we  raise, the more families come, more families who need desperate financial help or are referred for a trip to the condo. It never slows down.  We raised $44,000 at our 5K this year!  We honored 30 Survivors and 59 Angels, and raised the $44,000 in increments throughout the course of the year on the 5K website…Our Bike Run (one month later) raised a few thousand more dollars,  CRTS (another wonderful sponsor) had a 3rd Annual Mulligan Sale, raising $6,000 more!  We have had several successful fundraisers, but more and more families are being referred through the hospital and the financial help is doled out as fast as it comes in… which is our mission. The funding is cycled right out again to help the families in need, as well as the families we send on Wish Trips to our condo, the overhead, the upkeep, etc.   Since the beginning of June alone we have paid 2 family's mortgage payments (there is a limit),  2 car payments,  a big phone bill, a pest control company for spraying of a home, made 2 big repairs at our Safe Haven on our Dryer and our Kitchen Lighting, and I have 5 phone calls to return tomorrow for new referrals and requests for assistance.   I wish at times there were two of me… I wish at times that there was no need for any Childhood Cancer Foundation… that there was not Childhood Cancer or the havoc it wrecks on each family. 

The foundation keeps me extremely busy, but it is my passion… my own respite from the grief and missing of Vinny.  We thank EVERYONE who has supported our foundation, come to our events, volunteered, become Members over the years, and been there for us throughout our journey. 

After our week at the Beach,  the day after we returned, Desiree left again on a Church Youth Mission Trip to Washington, DC to spend a week feeding the Homeless. She LOVED it.  She loved DC (where I was raised) and had several exciting adventures.  She fed and talked to the Homeless.  She cleaned an elderly lady's house who reminded her of Vinny because of  her "diapers and mattress pad on the bed".  Her stories were sometimes hysterical.  She loved it.  She witnessed a SWAT Team lockdown at a local drug house in the ghetto, which fascinated her because of her desire to be a Crime Scene Investigator in Law Enforcement.  She had two young men vying for her attention, buying her necklaces and flowers from other state youth groups… and was able to deflect the attention and hold her own.  She grew, she learned, she changed as well.

At the same time, I was also in Washington, DC for the first time back to my "home" in 18 years.  I was finally able to  join the Childhood Cancer Action Days through the Alliance for Childhood Cancer with two of my local NC friends!!   Nicole Woodward and Debi Greer (Angel Devan's Mama) were able to go with me to attend the meetings in DC with Keynote Oncology Speakers and Researchers who trained us last Monday on the laws, the stats, and the necessary bills pertaining to Childhood Cancer Research Funding.  The Government has slashed the Childhood Cancer Research Funding once again.  1,000 positions at my own hospital have been cut due to lack of funding,  several friends have lost their jobs on my ward and in my hospital alone… and several of them were the Childhood Cancer Researchers from our own floor.  Without funding, without the researchers, more children will die just like Vinny.  There are over 100 different types of Childhood Cancer that are different from Adult cancers… and the treatments and chemo has not improved in the last 25 years.  And without funding there will be no clinical trials that may one day lead to a Cure.  

On the 2nd day of our Alliance of Childhood Cancer,  the 240 people who attended our conference split up by States, and 8 of us from NC started out as a group to speak to a few of  the Senators and Representatives of NC about the necessary funding and the Bills we wanted them to Co-sponsor and pass in order to maintain the funding for NIH (National Institute of Health in MD that funds the cancer trials for adults and children). 

Our group then split up further… and one other lady from the Children's Brain Tumor Foundation in Asheville and I were able to go alone to visit our own District's Senators and Reps to discuss not only the need for funding, the statistics, but also about VINNY…. about Vinny's personal story, about his first clinical trial, about the lack of clinical trials for relapsed Rhabdo, about him being the first child to try the IGRT at Brenner's.  About him having the fake bladder pseudo tumor, the brain Cavernoma, the experiments we fell back on to try to bide our time… and about the other friends we know on our ward who have been impacted by this journey.  We were the voices of NC and I think we made  a difference to most of them… not all… but most. 

 This is an article from Capitol Hill's newspaper about our trip and the new childhood cancer statistics: http://thehill.com/blogs/congress-blog/healthcare/210091-thirty-percent-cuts-to-childrens-cancer-res…
   
It was an amazing trip.  I grew a lot, I learned a lot… and most importantly I had two friends with me from home who also grew and changed and learned in the presence of each other… and the presence of the new friends we made on Capitol Hill.  We plan to go again next year, and the next year, and the next year until our voices are heard… and until the funding is found to find our one-day Cure.  

I was also able to meet my long-time caring bridge friend Lisa Binkley from NY, from my Rhabdo group who lost Aiden 3 1/2 years ago…. and we have been "on-line friends" through e-mail and our Rhabdo Kids group for 5 years but never met in person until we had drinks in DC after the conference!!!!!   www.caringbridge.org/visit/aidenbinkley 

And since our return, my heart weighs heavily on several people who have asked us for prayers… adults and children… but especially for 3 of the teens / kids on our ward that face the unknown, who continue to relapse or suffer.  I HATE this cancer world, and love the people in it.

Please send prayers and thoughts to:

Elijiah Clark, 16 year old friend who undergoes testing tomorrow for pain and answers.

Justin Elam who started a new chemo for relapsed Ewing's Sarcoma www.caringbridge.org/visit/justinelam


And little CC who just relapsed with ALL and is undergoing a harsh induction to get her back into remission before a necessary Bone Marrow Transplant:   http://www.caringbridge.org/visit/siennahouck

There are several others, mentioned to me in confidence  will respect their privacy until they announce themselves.

I will write again soon. I will post more pictures of our beach trip, our DC trip, our 5K, our Bike Run, and everything else soon.  

On July 5th, we are having a new fundraiser:   A CRUISE-IN, Cook-out, and TOY DRIVE for our foundation  at Black Clover Tattoo Parlor BLACK CLOVER TATTOOS
4685 Reidsville Rd, Winston-Salem, North Carolina 27101

Families and Children are welcome! 

Saturday, July 5th
12-5 PM - Come and go as you like!

Please bring a $10 toy, Target Gift Card, Walmart Gift Card, or I-tunes cards when you come! Kids of Childhood Cancer stocks the ToyBox in clinic with 75 new toys per month for the children and teens with cancer.

We will be raffling $40 Tattoo Certificates and Free Piercings!


We will post more soon!!
Thank you, again and again for still reading, still following, still loving our kids. 


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Comments

28 Comments

Erika Reboucas
By Erika Reboucas
Dear Sarah,

I continue to think of you and your family. Some days it's a rainbow, ladybug or bird......some days it's something Olivia says. You have become a part of my heart and I'll forever be glad to "check in" on this page and see how you are all doing. You are always in our family's thoughts, ALWAYS. Write when it feels right, your heart knows best ;)
Cyber hugs
www.caringbridge.org/visit/oliviahardiman
Teresa Baker
By Teresa Baker
Thinking of you all. I understand how you feel about the freezing up when you go to post something. I haven't posted on Nate's caringbidge in quite a while. I can't seem to find the words to express where I'm at emotionally right now. I have felt a bit lost and stagnant for awhile now. You continue to be such a huge inspiration to me. I am always so moved by your kindness and dedication to help so many in need of love and support. <3 much love, thoughts and prayers for you and your family.
Ruth Warner
By Ruth Warner
Thank you for the post. Your continued support for other families is truly an awesome blessing. Prayers for continued healing will be said.
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Kathy Shipstad
By Kathy Shipstad
You are awesome. I will never forget Vinny! How could we?! :)
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DOUG WESTLAKE
By Doug Westlake
Continue to pray for Vinny's family. No bird "events" lately; thanks for the temporary reprieve, Vinny!! I'm sure I'll "see" you soon!!
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Kathy Bunn
By Kathy Bunn
HI Sarah, Charlie, and Desi, I am so glad to read the update about Desi. I think about you and your fam often. You are an amazing family with an abundance of love for others. Blessings upon blessings to each of you. Prayers and hugs, Kathy
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Gail F.
By Gail F.
Always love reading your updates. Go Desi!
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Christine DeLuca
By
Thanks for the update. It is nice to hear the latest on your family. Continued good luck with the foundation.
What wonderful support for patients and families. You give support in so many areas and this is so important to the families. God bless you and yours. All the little bird poop comments brought me a smile. Love that the sparrow continues to visit. Remembering your special Vinnie.

Christine DeLuca
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Kim Prokop
By Kim Prokop
Thanks for taking the time to post to let us all know how you're doing. We care about Vinny and we also care about all of you.

Love from NY
Kim and team Hannah
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Octavia Jewell
By The Jewell's - Marty, Octavia and Nicolas
I think of Vinny all the time. I even had a bird poop on my windshield yesterday reminding me of Vinny. I recently found out that my little cousin Megan Price has cancer. She is undergoing such intense chemo after 3 treatments she has lost her hair. You may have met her if you haven't I'm sure you will. She is very upbeat and determined to beat "Karl, the British tumor" as it's been named. Please keep her and her family in your prayers. She has a caring bridge page as well. God bless and happy fourth of July.
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