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I Thought…… July 27, 2014

Posted by Waking Up With A Broken Heart in Family Fun Nights, Infinite Pain, Love & Grief, Uncategorized.
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I thought I would never walk into a hospital again……….let alone an oncology floor.

I thought I would never be able to bear seeing another child suffering cancer like my precious baby did.

I really never thought I could ever again touch or kiss the soft bald head of a child with cancer.

I absolutely never thought I could have a party with a room full of kids battling childhood cancer.

I WAS WRONG…….

Since Sal died I have dedicated my life to raising awareness & fundraising for Childhood Cancer Research. It is what I do every waking hour.

But, one year ago, while talking to Sal’s Dr @ Miami Childrens, we came up with the idea of having a weekly Family Fun Night for the inpatient kids. (Some of these kids are inpatient for weeks or months at a time) Sal had spent a lot of time at so many different hospitals and I knew in my heart he would really want me to do this, even though it was going to be immensely difficult for me.  Sal loved parties, he hated being bored, loved toys and he loved to sing & dance. So I decided to incorporate all these things into one night…….which is now our Mystic Force Family Fun Night on 3North at Miami Childrens Hospital.

For a few hours one night a month we help these kids forget where they are and just be kids having fun. We fill the playroom with tons of toys, circling colored lights and play party music. We do fun crafts, we paint, we color, make bracelets and we eat delicious food. Sometimes we have Superheroes join us, sometimes we have local celebrities.

All of this is possible because of the generosity of so many individuals & companies who donate their time, who donate awesome toys and who donate the dinner each month.

HOW DO I KNOW I WAS WRONG??

This past week a very special little boy from Miami Childrens passed away. Alejandro was a beautiful, spunky, witty, Lego loving little boy. He was at most of our Family Fun Nights through out the year, which sadly, meant he was inpatient…..a lot. I know I was wrong, because, I know that I, along with my entire team of amazing volunteers brought this boy happiness when we were there. (as you can see from the video below) He sang & danced & picked out as many toys as he wanted, did crafts, played, ate delicious (non-hospital) food and of course we always brought him Legos. My dear friend Mara brought him super special Legos which, sadly, he never got to enjoy as he was already in I.C.U.  He will be missed by each and every one of us.

THAT’S HOW I KNOW I WAS WRONG…….

Now, as I pack up for tomorrow’s Nike Family Fun Night (because Nike donated the most awesome balls, bags & backpacks) I know I can do this, I know it’s what I have to do, what I must do, WHAT I WANT & NEED TO DO…………….. I must bring smiles & happiness, even if it’s just for a little while to these kids who suffer the unimaginable like my baby did.

(If you would like to help in any way, please fill out the contact form below)

 

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FFN June 2

 

Is it Really Mother’s Day…….. May 11, 2014

Posted by Waking Up With A Broken Heart in Infinite Pain, Love & Grief, Uncategorized.
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This morning many will all wake up and think of and be thankful for the moms that gave us life.

We will thank God for all the blessings in our life,

For the beautiful children we have raised.

BUT………

Some of us will hesitantly wake up

We will somehow get out of bed and wash the tears from our face……

We will go thru the motions of the day……

Waiting impatiently for the day to end.

We will smile and pretend that we are okay.

We will laugh when we have to,

Cry when we need to.

 

We will remember every single second of every single Mother’s Day we have spent with our precious children.

Then will remember how many years, months, days, minutes……seconds…..it has been since we felt our baby’s touch. How much we yearn to hear our baby’s voice. How much it hurts to know they will not be here today.

Today is Mother’s Day……

 Hug your mom

Send prayers to your Mom if she is no longer here and be thankful for the time you had together…..

 

Hug your children, Kiss them, enjoy them, savor every second with them, remember every laugh, every smile, every funny comment……

Bask in the infinite love your children bring you. Feel glory in every trying time as you try to figure out what comes next, what is right and what is wrong.

Rejoice in knowing that your child is happy & healthy………..

Proclaim your love for them. Relax as you watch them play, etching every scene into your memory………..

Hug your children

Kiss your babies

Savor every second with them

Thank your God for your good blessings…..

Then remember those, like me, who long for what you have……………………..

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G R I E F May 4, 2014

Posted by Waking Up With A Broken Heart in Love & Grief, Uncategorized.
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GRIEF……

Per Merriam Webster, the definition of grief:

grief

noun \ˈgrēf\

: deep sadness caused especially by someone’s death

: a cause of deep sadness

: trouble or annoyance

 

Sadness?????  It is way beyond Sadness…….

I can honestly say that is not my definition of grief.  

But then again, how would one begin to describe the sheer, gut wrenching, knife stabbing, all encompassing pain of losing a child?

How do you put into words the never ending torment? The never ending torture? The never ending longing for someone that is still a part of you. How do you describe in words the physical pain?

YOU CAN’T………….

Because there are no words to describe the pain and suffering of a mother who has lost their child.

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Someone Asked Me How I Was Today…………….. June 2, 2013

Posted by Waking Up With A Broken Heart in Love & Grief.
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Someone asked me how I was today…….

 

 

 

Really????

 

You want to know how am I???

 

Do you really want to know how I am or do you want me to just say

 

 

“I’m great,

“I’m okay”,

“Not bad”

“Things are good”

 

 Or do you want to hear the truth???

 

 “Life is sheer torture”

“It’s hard to breath”

“Everyday things are nearly impossible”

“I am in constant physical pain”

“I wish life would go by faster”

“It’s excruciatingly painful to wake up”

“It’s excruciatingly painful to go to bed”

“I feel guilty with every smile and every laugh”

“I can’t stop crying”

“I wish I had died with my baby”

 

 But I do love you for asking……………………

 

 The truth is,  life is difficult,   life is complex,  but,  somehow,  life goes on………………….

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Why I Can’t Think of Anything But Childhood Cancer……. March 27, 2013

Posted by Waking Up With A Broken Heart in Love & Grief.
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Why I can’t think of anything BUT Childhood Cancer…………

 

Because once Childhood Cancer enters your life it NEVER goes away……

Because Childhood Cancer doesn’t care who you are…..

Because Childhood Cancer hurts everyone…..

Because Childhood Cancer is painful and makes kids suffer…..

Because Childhood Cancer keeps me awake at night……

Because Childhood Cancer keeps a constant river of tears flowing from my eyes…..

Because Childhood Cancer affects every aspect of my life……

Because Childhood Cancer tortured my baby……

Because Childhood Cancer killed my baby……

Because Childhood Cancer has ruined my life…….

Because Childhood Cancer is a beast that needs to be eradicated………

 

That’s why I can’t think of anything BUT Childhood Cancer………..
 
 

My Eternal Struggle Continues…… March 18, 2013

Posted by Waking Up With A Broken Heart in Dreams, Love & Grief.
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2 seconds….

2 weeks……..

2 months………

2 years………………

Is there really any difference? No….

Has the pain diminished at all?  No….

Has it lessened like a wound as it slowly heals?  No……

WHY???  That’s all I want to know……… Why were you taken from me??????………

Early this morning I had another dream, one I did not want to awaken from………
 
Sal came to visit me. I knew he was coming from Heaven as he has visited me so many times before in my dreams. We were laughing and singing and shopping and dancing and eating…………… All his favorite things.  It felt like it lasted for hours, yet not long enough.
 
I knew he was just visiting so I tried hard not to wake up, somehow, I knew I was just dreaming, but it was okay because he was here with me……..the only way I can have him now.  Is this my mind playing tricks on me? Or, is this really my baby visiting me every time he knows I am in total utter despair and feel like I can’t go on???  I wish I knew it was really him. He always worried about me, he always cared so much how I felt and did everything he could to keep me happy………. Can you imagine, thru all his pain and suffering he was always worried about me……..his mama…… always telling me he loved me more……….

The pain of losing my baby, my bestfriend, my true love………….. is not just emotionally but

excruciatingly physically painful.

SALVATORE ANTONIO VANNI

April 22, 2003 – March 19, 2011

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LOVE YOU FOREVER PAPO…….KEEP VISITING ME IN MY DREAMS………I NEED YOU STILL…….
 

 

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.

“Help Us Find A Cure”……. November 9, 2012

Posted by Waking Up With A Broken Heart in Love & Grief, Uncategorized.
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“To truly understand the depth of the plea “Help Us Find A Cure” your life must be touched by someone who has a disease for which there is no cure. Only then will you feel the anguish and desperation behind each syllable. Please Help Us Find A Cure for Childhood Cancer so no other parent of a child with this devastating disease will feel this pain.”

Silvia Vanni, Sal’s mommy forever

Please Help Us Find A Cure……

Every day people tell me they understand and they know how I feel. That my baby is in a better place and that I should be happy he is no longer in pain,  That “there is a reason for everything”, etc, etc………….

Unless you have watched your child suffer the unimaginable, heard him screaming in pain, seen him being humiliated time and time again, listened to his cries for help,  or found yourself begging God for mercy………………YOU HAVE NO IDEA…….

I write this blog because it is an outlet for me. Because it lets me express the sheer torture I have to live thru each and every day.  Because some people want to know what it’s like for some reason………. Because it helps me to cope……….. Because I love you all and want you to know that although I am dieing inside, I am still alive………………

To some Sal “passed away” 21 months ago. To me it was 2 seconds ago………….I long to hold him, to kiss him, to touch him, to rub his soft beautiful head………….. The pain is as much physical as it is emotional.

How do I describe the depth of my pain?? It is pure inexplicable torture.  To have to live the rest of my life without my baby is just unimaginable to me.  I wake up and he’s not there, I go to bed and he’s not there…… How could that possibly be??? How could God have taken away my most precious possession? How???????  Why?????

I believe in signs, I always have.  I get many signs from my baby. You have to truly believe to see them and accept them.  I long for them, I LIVE for them now.

The Holidays are here. Do you realize how difficult this time is for someone who has lost a child? Halloween…..Sal’s favorite time of the year……………….it came and went…..without him.  (how could that happen????)  I know he would have been Captain America this year. Did I walk thru the Halloween section of any store?……..NO.  Did I go to Party City like I have every year for the last 20 something years of my life????………….NO

Did I buy candy for the kids that came to my door……Yes, …but none of Sal’s favorites.  Did I personally answer the door and see all the smiling happy faces????……NO………   Did I buy my kids face paint and whatever else they needed to enjoy this night?………….Yes, but nothing Sal would have wanted to use.

Thanksgiving is next…………………….

Sal & I spent Thanksgiving 2007 at Sloan Kettering Cancer Center in NYC.  He had just undergone a 12 hour surgery to remove the massive tumor in his body after 5 grueling, painful & torturous cycles of chemotherapy. His incision had barely healed by Thanksgiving……spanning from the middle of his back across to the front of his body and down to his groin.  Can you imagine??? He was only 4 years old and his body had been split in half to remove a lethal foreign body that would eventually take his life.

Thanksgiving 2008  we highly celebrated with 40 family members his very short lived NED status (No Evidence of Disease). 2009 he was neutropenic,  (extremely low & fragile immune system) but thankfully home for a few days, we celebrated with only our immediate family, just my husband, myself, my sister,  and our 4 other kids.  I made every single thing he wanted.  He ate and drank to his hearts content…..then we shopped online for EVERYTHING he wanted…………. 2010, Home, happy & off/on pain………………..none of us knew this would be his final Thanksgiving. How could we have known? How could we have understood that? How could we have possibly accepted that?  

2011……………..no turkey, no celebrations, no thanking God for all the gifts he has given us……just anguish & tears, tears,  and more tears……….  2012???????

Not many can relate. Very few can understand. The death of a child by cancer is a life sentence to the parents of anguish and agony. 

A sentence which I wish upon no one……………..

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Our very last Thanksgiving together……….

I miss you Papo……..

Etched Into the Depths of My Soul August 21, 2012

Posted by Waking Up With A Broken Heart in Love & Grief.
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I eat, drink, smell, breathe and dream Childhood Cancer

It never goes away………….….EVER…………….not for a millisecond…….

This is exactly what I mean when I say it’s an eternal struggle to survive………..…

A suffocating……………..debilitating…….………..eternal struggle…………..

My baby had to die for people to start listening and truly understanding how

Childhood Cancer destroys lives……….

That’s why I can’t stop talking about it……………it destroyed my life

I don’t want it to destroy any one else’s………………….

Some will listen……………….actually, more will listen now…………….

Others will continue to simply turn away………………….

My desire to save these kids, to keep them from suffering like my baby did…………..to find a cure for these precious children ………..is Etched into the Depths of my Soul……………….. 

People ask if I ever think about anything else, well, the answer is simply……NO, Never……………………Not Ever………………

Every decision I make, Every choice I make, Every path I continue on, is somehow connected to Childhood Cancer…….the killer of my baby……..my true love………..my bestfriend………….

 

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