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Last Night I Did Not Have A Dream……. December 27, 2012

Posted by Waking Up With A Broken Heart in Dreams, Love & Grief, National Childhood Cancer Awareness Month.
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Last night I did not have a dream…..

It was real…..

I was laying in bed, as usual in the middle of the night, playing Words With Friends………..

Steven was asleep…..

I looked up and my entire room was foggy…………….I mean completely filled with fog. My first thought was OMG, my house is on fire. But it did not smell like smoke. I got up and turned on all the lights and the “fog” was still there, My bedroom is completely surrounded by huge windows and there was no fog outside, I opened my bedroom door and went downstairs, no smoke or “fog” anywhere and no smell of fire. I came back upstairs, my room was still “foggy” I turned my lights back off and said “Sal, you are here aren’t you.??……………, no reply.   But,  I did not need one. I just knew at that moment that it was him.  I didn’t think to take a picture, I didn’t think to wake up Steven………… I just knew………. I was enveloped in his presence.

Many will think I am crazy, but those who believe will understand.  The past few weeks have been so overpoweringly difficult for me. Each breath has been an overwhelming struggle. The times that I have smiled or laughed have later been overshadowed by guilt . How can I be evenly remotely happy for a split second without my baby here? It’s not right, it’s not fair………. How can I smile or laugh when he cannot?  It’s excruciatingly difficult to live life like this.

Stevie, my oldest baby turned 21 this week. We had a party to celebrate.   I am so very proud of who he has become. I wanted to celebrate, I wanted to be happy, I wanted to sing and tell the world……….. then again, I thought how unfair that Sal is not here to celebrate his brothers birthday…….how unfair that he, himself, will never celebrate, not only 21, but every other milestone in his life. How can I be happy? How can I celebrate?   But then again, how can I not…… for Stevie??????????  Birthdays are so important, especially in our family.  Sal celebrated over 90 birthdays in his short life……

EVERY day was worthy of a celebration and we all knew that……………..

Such turmoil……………such pain, not just emotional but so very physical.  How does one go on living you ask, after your child was viciously  taken from you???? Honestly, I have yet to figure that out.   You take it day by day, moment by moment, second by second.  You sleep some days away, you spend time with friends who understand, you cry 90% of the day, you smile, you ache, you laugh, you smile again, you look for answers that you know you will never get. You do whatever you have to do to get through each day, praying the days will be short and the years will swiftly go by, all the while feeling guilty for any ounce of happiness you are actually able to feel.

I have never believed in ”mediums”……but….…… A cousin told me not too long ago that Sal came to her and amongst other things, said to her the phrase “socks in the drawer” she didn’t know what that meant and I told her I have Sal’s socks and all his other belongings in my drawers and everywhere else he left them. All his stuff remains untouched, so it really didn’t mean much to me.  A few days later I was looking for a frame to put one of his pictures. I opened one of my special “drawers”, and his favorite blue socks were on top (I didn’t remember them being there), right underneath was the frame I had been looking for.  I almost, literally, fainted when I unwrapped the frame and it said “ Wish you were here” ……………  You see, since the very day Sal died , every single night…………… I say (out loud because I’m not sure if he can read my mind) ………….”I love you Papo, I miss you, I Wish You Were Here”    EVERY single night for the last 21 months, before I close my eyes, that’s what I say.

Life is so very unfair……………….  I don’t know when the time will come where I feel no guilt with a smile, where I feel no remorse for laughing. I know that my baby would want me to be happy, as he always was, but it is so very difficult to achieve any type of true contentment.

Maybe some day I will understand……………

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2012 Accomplishments & More November 28, 2012

Posted by Waking Up With A Broken Heart in Love & Grief, National Childhood Cancer Awareness Month, Uncategorized.
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2012 Accomplishments

  • Get out of bed & dressed EVERY morning  (85% accomplished)
  • Walk For A Cure 2012 @ Oleta River State Park
  • Fit For A Cure @ Fitsource Club for Women
  • Mix, Mingle & Mangia for a Cure / Meet & Greet the Mayor & First Lady of North Miami Beach @ Racks Soprano Bistro & Cafe
  • Pizza, Pasta & More for a Cure @ Anthony’s Coal Fired Pizza
  •  PicturesOnGold.com developed a line of Childhood Cancer Awareness jewelry and partnered with the Mystic Force Foundation to donate a portion of all profits from this line to our foundation
  • Nominated & accepted to NAC Contracts For A Cause
  • WSVN 7 (FOX affiliate) News Special entitled Mothers Mission which aired during the 5:00 news and then again during the Stand Up 2 Cancer National Telethon
  • City of North Miami Beach proclaimed October 16, 2012 the official Salvatore Vanni Day, presented with the Proclamation and plaques at the city hall meeting by the Mayor and Commissioners
  • Superintendant of Miami Dade County Public Schools, Alberto Carvalho (the nations 3rd largest school district) passed Resolution No. 12-155 honoring the life of Salvatore Antonio Vanni and promoting Childhood Cancer Awareness whereby adding lessons on Childhood Cancer to schools curriculum so all children will learn of the prevalence of Childhood Cancer along with other instructional lessons
  • Accepted The Ancient Spanish Monastery Foundation’s nomination honoring my husband & myself for “distinguished achievements and contributions providing a legacy for exceptional leadership in S Florida.”   Black tie affair takes place April 13th 2013

Some of these things were very difficult to achieve, such as getting out of bed EVERY single morning. It would be much easier to just sleep my life away because during sleep you feel no pain, physical or emotional.  But, I know I have 4 kids that rely on me every day as well as thousands of others who count on me for Hope for their future. I can’t let any of them down. I also know Sal would not want me laying in bed crying for him.

He never wanted to see me cry.

The article in the Miami Herald was another great feat. I wrote to every single journalist whose email I could find. My only reply was from Joan Chrissos, the Health Editor. This was her reply to me:

Dear Silvia,

Thank you for your email. We know this an important subject – in fact, childhood cancer was the front page story in our Special Health Reports on cancer, which was published on July 15, 2012:. http://www.miamiherald.com/2012/07/16/2897761/hope-on-the-horizon.html Given that we just published a large story on this subject, we would not be inclined to publish another story so soon. That said, we will look to see if there are any other developments that warrant another story.

 Sincerely,
 Joan Chrissos
Those of you who know me, know that that was just NOT an acceptable reply by any means, I emailed her back,
Dear Joan,
Thank you so much for responding to my email. I did see that article which was wonderful coverage for a disease that most people think of as taboo to speak of. And although you did a story in July, are these kids not worthy of another story during the most important month for childhood cancer? 
Next month will be breast cancer awareness month and you will see pink everywhere, you will read stories every day about breast cancer survivors, those still fighting and those that lost their battle to this disease. But because of so much awareness thru out the last years with the Susan G Komen foundation there is now over an 80% cure rate for breast cancer. That is wonderful and outstanding. Why can’t we do this for all the children? Are they not worthy of this type of awareness? Have you personally ever been touched by a child with cancer? Has your child ever begged you for help from the pain and suffering they were feeling? Have you ever held the hand of your dying child?
I would not wish those things on any parent. That is my mission…..to keep ALL children from suffering like my baby did and ALL parents from feeling this knife stabbing pain that NEVER fades. EVERY day is a day to raise awareness which is why I do not understand your statement “That said, we will look to see if there are any other developments that warrant another story.” 
Why does Childhood Cancer Awareness Month not warrant another story??? Can you explain that to me please???
Do you know that before my baby was diagnosed I was told to pray for leukemia? Do you know why? Because there is an over 70% cure rate now for childhood leukemia. My child wasn’t so “lucky” he had a very aggressive, very common form of childhood cancer called Neuroblastoma for which there is no cure. Another cancer that has very dismal survival rates is Rhabdomyosarcoma. Do we just forget about these kids and only report on the ones that are doing well?? I don’t think so.
“With that being said”,…….. I will continue on my mission and continue to search for people that care.
Sincerely,
Silvia Dominguez Vanni
I forwarded both emails to the CEO of the Miami Herald with this reply:
Dear Mr Landsberg,
 
I sincerely hope that the the following reply from Joan Chrissos is not the opinion of yourself and others at the Herald. Your paper is one of the largest in the country and to say that Childhood Cancer Awareness Month does not warrant a story is absolutely appalling and unforgivable. 
I sincerely look forward to hearing from you,
Silvia Dominguez Vanni
He instantly emailed me back telling me that one of his senior newsroom editors would contact me.  That along with the barrage of phone calls & emails that Joan Chrissos received from all of my facebook friends accomplished my task of getting a story written……finally.

As for the Channel 7 news report…..well I sent out over 200 emails to every single reporter whose email I could find including all the sports and weather newscasters. I received only 2 replies. The first was from Carmel Caffero (Carmel on the Case), the second from Patrick Frasier (Help Me Howard); both from WSVN 7. Both conveyed their sincere condolences regarding my baby and both said they would forward my email to their health producer, Angela Carraway.  Angela, whom is a beautiful soul both inside and out contacted me immediately and set up an interview.

It’s so sad that it takes so much to get people to listen and to want to help. But it does not keep me from trying…..I keep forging on. My motto is ‘the worst that can happen is that it doesn’t happen’.  So I continue to tell my baby’s story, to ask for help, to pass out flyers & postcards, to ask for sponsorship, to ask for donations, to set up fundraisers, to do anything and everything in my power to raise awareness for these kids I so desperately want to save…..for all their parents I so desperately want to keep from feeling the pain I am feeling……for all the kids of the world…..even the healthy ones, because remember,  my baby was perfectly healthy, until the day he was diagnosed.

I know 2013 will bring many great things for our kids. I know 2013 will bring continued Hope for so many. I know I will continue my work, my eternal mission in life.

Please save the dates & join us for

Cycle/Walk of Hope for Childhood Cancer

June 9th 2013

A 60 mile bike ride thru beautiful Miami along with a 5k Walk and a Family Fun Day

Cocktails For A Cure

New York City / March 2013

(More details coming soon!!)

Please know that none of this could have been accomplished without the help of so many wonderful

friends, family members and volunteers.

 I love you all and will continue to fight for all ‘our’ kids.

I so very desperately wanted to save my dear friend’s beautiful baby. Derek & Sal were friends, treated at Miami Childrens Hospital, both with the same favorite oncologist, Dr. Guillermo DeAngulo. Derek never knew that Sal had passed away because we did not want him to be scared of having the same fate. We tried to save him, we did everything we could, both physically and spiritually but to our great sadness Derek Marcos passed away in October. His mom Enyd, my very dear friend is now on this mission with me.

What Does “Rare” Really Mean??? September 19, 2012

Posted by Waking Up With A Broken Heart in National Childhood Cancer Awareness Month.
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You have heard that Childhood Cancer is rare.

But, is it really????    NO…………..

Have you ever taken your child into an oncology clinic and had to wait 3 or more hours to be seen because there were so many patients ahead of your child?

Have you ever had to wait hours for your baby’s chemo to come up from the pharmacy because the pharmacist had so many other kids chemo orders to fill?

Have you ever had to wait 12 hours in the day hospital with your child feverish and crying in pain before your child could be admitted to the oncology floor because there were no empty beds??

Childhood Cancer is NOT rare, the reason you see very few children with cancer out in the general public is because they are either at a clinic or hospital receiving toxic chemotherapy treatments to try and save their lives, they are inpatient in a hospital fighting to recover from the devastating effects of those chemos and surgeries, or they must remain indoors to avoid contact with germs due to their immunosuppressed state caused by these treatments. Others may be in remission (or no evidence of disease which is the term used for the more aggressive cancers which have a high likelihood of recurring) or may be receiving an experimental treatment and may not look like they have cancer. You may have walked by a child with cancer today and not even known it.

The first set of pictures below show my baby Salvatore, during a time where he was undergoing an intensely painful treatment called 3f8 at Sloan Kettering Cancer Center in NYC. The treatment itself was torturous, but would you think there was anything wrong with him if you saw him in the street??   The second set of pictures are just a few short weeks after the first, when he was found to have relapsed and had to start high dose chemotherapy…..again.

Raise Awareness! 
Let people know Childhood Cancer is NOT rare, it is painful, often times fatal, and it can happen to ANY child at ANY time.

September is National Childhood Cancer Awareness Month!

Please help raise Awareness any way you can!

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