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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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Everything Reminds Me Of Something…. May 5, 2013

Posted by Waking Up With A Broken Heart in Uncategorized.
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Everything reminds me of something…………………………..

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It doesn’t matter what we are taking about, it doesn’t matter what it has to do with…..

 

EVERYTHING reminds me of something that has to do with Sal…..EVERYTHING.

Say a word, any word…………………… A memory instantly pops into my head….

 

RED,   One day he wore a red sport suit to the hospital (he never ever wore anything but blue)  the nurses went crazy and told him how awesome he looked, how sexy, how handsome….. I am telling you, everyone had something to say. He just thought he was the coolest thing on earth (and he was!)

 

Snake,  One day leaving Miami Children’s Hospital there was a snake in the middle of the street. He made me stop & get out of the car to shew it into the bushes so it wouldn’t get run over by another car.

 

Party, Every day was a party for Sal. It didn’t matter what we were celebrating, we would have a cake and celebrate.

 

Police, Sal loved his policeman friends, He loved wearing a police badge and hat and one day he thought it was so cool, he rode in Pete’s police car looking for a “bad kid”.

 

Asparagus, That was one of Sal’s all time favorite vegetables.  He loved every vegetable, he ate peppers and onions like most people eat apples, but asparagus was his favorite..

 

Boat,  Sal loved the boat.  There were 2 things he wanted to do when we were allowed to come back for the first time after 3 months of treatment in New York on Dec 31, 2007, one was go to Costco, the other was go out on the boat.

Snow,  Sal just finished a very tough round of ultra high dose chemo in NYC. We walked out of the hospital and it was snowing. We walked across the street to the park and he had a blast playing in the snow, going down the slide at 100mph. He was soaking wet. I was terrified he would get sick. We literally finished chemo an hour ago and he was soaking wet in 20 degree weather. I had to put him in the cab screaming and kicking cause he wanted to continue playing………….

Just say a word, any word and I will give you a memory………………………………..

 

My entire life now revolves around memories. Sal & I will never make new memories.  I realize now, that I will forever live in the past. I will forever live in my memories of my precious baby.  There’s no way to go on, there’s no way to change the present. I will forever live in the world of 2010/2011.  My last of everything…….

 

I follow so many cancer kids stories. My life revolves around them now. I want to help them, I want to save them. I want to keep their parents from feeling like I do right now.

 

But, honestly, I would give anything to still be fighting right now. To still be looking for the next new treatment, to still be getting a blood transfusion, to still be scheduling scans, to still be waiting for results, to still be inpatient, to be booking our flight to the next new state, …..……… to still be any part of it…………….

 

Is that selfish of me?????   I never wanted him to suffer, but I still want to be able to hug him, to kiss him, to still have hope for tomorrow……………………………….….  Reallly……………….how is it possible that he’s not here?  How is it possible that I am downstairs in my office just typing aimlessly and he’s not here????????

How do I start to really understand?????   When will I start to understand???????

 

Life goes on around me…… Everyone continues as they were……………

No one seems to notice the emptiness………..……no one seems to understand the depth of the pain in my heart………well,………. not no one………..some do…………  the ones that laugh and cry at the same time with me. The ones that say his name when they know I need to hear it. The ones that hold my hand when they see me struggling.  The ones that tell me a memory when I need to know someone remembers………  But how long will that last…………… How long will they really remember??????

 

I haven’t gotten past the first few seconds of his death. I haven’t accepted it. I haven’t learned to live with it. I haven’t acknowledged the whole enormity of it………..

 

I had a terrible experience at my pediatrician’s office the other day, such that I do not want to relive by telling you.  But, I was then reminded of how people forget…….…

 

To everyone else it was 2 years ago………………………………..

To me, it will forever be 2 seconds ago………………………………………………………….

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Easter & God & Miracles March 30, 2013

Posted by Waking Up With A Broken Heart in Uncategorized.
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Easter is a time to reflect & be thankful, right???

 

I believe in God…..

 

I believe Jesus is the son of God……..

 

I was baptized as a Catholic…….raised as a Christian.

 

I taught Sunday School…..

I went to church regularly…….

I grew up with the fear of God….

 I knew that if I did anything wrong, God would not like it…

 

So…..

I never lied.

I never disrespected my parents.

I never did drugs.

I never smoked pot.

I never purposely did anything that I thought would go against God’s rules.

I sent my kids to Christian School, Stevie for 11 years, Sammy & Adrian thru 1st grade, Sergio pre k 3 & 4 & Catholic summer camp with Sal who was 4 and then had just started pre-k 4 when he was diagnosed.

 

I know the bible inside and out. I was as close to a perfect Christian as any human could possibly be.

 

I have probably prayed more in my lifetime than any of you reading this right now.

 

Do I think God abandoned me? Do I think he purposely chose my baby to torture? Do I think he decided not to save my baby purposely? Do I think he ignored my pleas for help?  Do I think he could have saved my baby if he wanted to, but just chose not to? Do I think he wants me to live in pain the rest of my life? Do I think it was his grand plan in life for my baby to get cancer and die to prove something??? Do I think he would choose to save another child over mine???????

 

My answer is NO…………………. to all of the above.

 

I still believe in God, but differently.

 

Do I think if you pray hard enough he will listen? (obviously not).  Do I believe if I begged him enough he would listen?…..….

No, for I could not have begged & pleaded more than I did. 

 

I believe what happens in our lives is beyond his control. But, I don’t know why. I do know he would never purposely hurt any of us. He would never purposely hurt a child. He would never purposely make anyone, especially a child, suffer.  He would never grant one person a miracle and not another.  We are all equal to him, he loves us all the same.

 

In other words,………….. whatever is going to happen in our lives, is going to happen. That is what I believe.

 

We have to learn to save ourselves. Yes, we must be good, follow God’s laws, etc to get to Heaven. But miracles?  Definitely No,………………if anyone in this world deserved a miracle, it was my baby, it was Liam & Julian & Sam& Derek, Gus, Sydney, Melina, Ryan, Eric, Nick, Isabella, Ronan, Teddy and all the others who suffered the unimaginable. 

I know God loves me and I know I will go to Heaven…..whatever/wherever that may be. I know my baby is there, I know he is free of pain & I know he visits me frequently and is constantly somehow with me.  But, the God saving only those who believe, is 100% absolutely not true…………because NOBODY ever believed more than me.

 

God didn’t find a cure for over 80% of all breast cancers…………..…RESEARCHERS DID.

You know what that means………………

Happy Easter my friends………..  

I hope to dream of my baby coming to me for his Easter eggs and my very much needed hugs……

 

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

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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…….
 

 

Seconds in the actual realm of my reality…… March 10, 2013

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Next week, March 19th will make 2 years that you are gone….. that’s  24 months, 730 days, 17,520 hours, ….. no matter how you look at it, its a long time. An eternity really,   but,  just seconds in the actual realm of my reality. I hear your voice calling me from across the house……

“mooooooooommmmmmmmm”……. I look up, anxious, then realize it’s not really you.

I’m cooking dinner, I glance and see you sitting at the bar playing on your iPad…then you are suddenly gone…………….

I go to your room, I lay in your bed, I hug your Build-a-bears…….. I go in your closet, my fingers caress your shirts that hang so neatly, waiting to be worn……………

I look at your toys, your most prized possessions that Sergio guards for you…..but you will never return to play with them will you?????  What will happen to them when Sergio grows up?????????????

What will I do with your “stuff” ?????? I know I will keep it all………. but when will you be back???? When will you come play again??????? When will we cuddle in bed and watch midnight movies??????? When will we have midnight snacks at 4am???????

Can it really be that this will never happen again…….REALLY????????

That’s so hard to accept.

I walk past your pictures, kissing each one as I pass, my lipstick stains on every frame……………..it’s just not the right…….

I talk to you as I drive…………. punch buggy blue, yellow or white…………. did you see it?

“Mom, what did you say?”….. “Oh, nothing,…..I was talking to Sal”………………..

Do my kids think I’m crazy? Do they understand?

Will they remember their baby brother 10 or 20 years from now? Will they remember his laughter? His fighting spirit? How much he loved Club Penguin? His love of music? How much he loved Pitbull? How much he loved to dance? How he always wanted to go out to a Chinese buffet? Will they remember his favorite color was blue, or that he loved to watch Spongebob & iCarly? Will they remember he was the blue Power Ranger? Or that he was Captain America? Will they remember his 80 birthday celebrations? Will they remember his love of swimming and pina coladas in the pool? Will they remember his voice as he sang I am Blue………………..

What will they remember???????????

How do I keep them…………..or anyone……………… from forgetting……………

How do I get people to think of you every day? How do I get people to understand how devastating Childhood Cancer is?

How do I go on living without you?

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LIFE WILL NEVER BE THE SAME…….. February 21, 2013

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NO………………

LIFE WILL NEVER BE THE SAME…………………..

EVER……..

 

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Un-Valentines Day February 13, 2013

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How could tomorrow be Valentine’s Day and you are not here????    It’s just not possible.    I spent the entire day crying and trying to logically understand it. Yesterday I went with Shari to buy decorations for Chase’s desk at school. I should have known better. It’s just not fair………………

You should be in Chase’s class. I should be decorating your desk and you should be in the basketball game tomorrow night with him. We should all be together.   I should be waking up to hugs and kisses and pretending that I didn’t know you bought me a card and chocolates………… You & Chase should be “secretly”  trying to steal our champagne tomorrow night………….

What will I do tomorrow morning……….. How will I possibly get up and survive the day without you?????

How will I continue to breathe tomorrow??

How??????????????????????????????????

How can this be. I still don’t not only, understand this, but I have yet to accept it. How could I??????

We always celebrate Valentine’s Day together. You are always my Valentine and I am one of yours……. along with Stephanie and all the nurses at the hospital. How can it be that we are not delivering chocolate hearts this year? How is it that you are not being too shy to hand over the carefully selected boxes of chocolates for all you “girlfriends” and making me do it????????

How is it that we are not snuggling in bed at this very moment awaiting the arrival of Valentine’s Day…….. One of our favorite holidays…… how???????……………..

It’s just so unfathomably unfair and so debilitatingly painful…………

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How I wish I could hold you and kiss you one more time…………..but that wouldn’t be enough,   would it my beautiful baby????………………… 

Nothing could ever be enough…………………..

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.