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“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……………..

Image

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………….

 

Heard It Through The Grapevine………. August 8, 2012

Posted by Waking Up With A Broken Heart in Love & Grief.
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It’s just so hard to accept that you are no longer here……..

I look at your pictures and it’s like I can just reach out and touch you………….how could this be……………..how can this be real?????

I heard it thru the grapevine that someone thinks I need to “get over it already & get on with my life

Jeese, what does that mean…….. really???

Like a spilled glass of milk…………get over it, clean it up and get another one?????

Like getting a bad grade on your report card???  Just do better on the next one???

Or like losing a favorite glove, just go buy another one…………..

Or do you mean like losing your baby that your carried in your womb for 9 months, loved, nurtured, adored and cared for……… for 7 years, then he died after you watched him suffer and be tortured for half his life…………….., just get over it and forget it ever happened?????? 

Is that what you mean??

Okay, when….GOD FORBID…….this happens to you, then you can tell me to get over it and get on with my life……….

Until then…

I will continue to cry, suffer, scream, hide, mourn, sleep, avoid people, and do whatever it is I need to do to just survive………

Thank you, though, for you unwanted input………..

My Broken Heart……. July 20, 2012

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Have you ever woken up with a broken heart?

Have you ever felt as if all the blood has rushed out of your barely beating heart and your lungs are about to collapse due to the agonizing pressure?  Have you felt all the life leave your body and you lay there without an ounce of strength, barely able to breathe from the seething pain………….and hardly able to raise a limb?  You see people all around you, but no one seems to notice….. they go about their lives – oblivious to the dire state of your gravely broken heart. You somehow learn to live with this torment, this numbness, this acute sense of deprivation that very few understand. You live each day as you have to…….only partially conscious, going thru the motions as you have to until it is time to sleep……… you find yourself begging for sleep, that unconscious state where you feel no pain…………..

The world continues to revolve, the sun continues to rise, humanity continues to evolve…………….yet, for you, time has come to a halt…………..never to advance again.

Can you imagine living with this burning affliction day in and day out?

This is my life now……….

I was not shot in the heart as many of you may have assumed.

I am the victim of a broken heart from grief.

This blog is just a collection of random thoughts thru my eternal struggle to survive with out my true love, my amazing baby…………

Salvatore Antonio Vanni

Aprill 22, 2007 – March 19, 2011

Eternally 7

Those of you who know me, my husband or have followed my caringbridge site know of my agonizing plight over the last 5 years. For those who don’t I will recap…….

My baby was born full term & healthy, weighing 8lbs, 20in on April 22, 2003. He was a very happy healthy baby and toddler until one day in August 2007 when he suddenly said his leg hurt. We attributed it to a fall from a grocery cart a few days before. An xray revealed no abnormalities, or at least that is how the radiologist read it. Within a week my precious baby could no longer walk. Blood work ordered by his pediatrician thru my husband showed many abnormalities and I remember it seemed we were suddenly at Holtz Childrens Hospital, where he was sent for scans and a biopsy. My head was spinning, I didn’t understand, I was told to hope for Juvenile Arthritis but to pray for Leukemia. What? How could this be? He was fine a few days ago…….. He was running around with Sergio like a normal 4 year old……how could this be happening?????? I didn’t understand…… I still don’t understand……

On September 10, 2007 we were given the diagnosis of Stage IV Neuroblastoma cancer, with very little hope of survival. 20% chance to live 5 years they said…..can you imagine???? How could this be happening?????? The very next day my husband and I left our children with family and flew to New York City to Memorial Sloan Kettering Cancer Center, to the Neuroblastoma experts of the world. The rest, as they say…………….is history……

The following 3 & 1/2 years, in over 6 states, my baby went on to have 12 surgeries, over 55 cycles of chemotherapy, 50 rounds of radiation, and over 400 days of inpatient hospital stays. He went into renal failure several times and underwent numerous torturous toxic treatments. He had a scar from his original tumor resection surgery that reached from his mid back across to the front of his body down to his groin. Can you imagine your baby being split in half to remove something so lethal????? At only 4 years old????? 

He coded and died on the table at one point in 2010 after an extremely toxic experimental treatment in Philly, he was intubated for two weeks but somehow miraculously survived. I was then given an extra 6 months to say goodbye. I did not know that at the time. I was sure God had to give him the cure we so desperately seeked after all he had just gone thru. I was so wrong. The following 6 months were mixed with happiness, pain, joy, and more pain & suffering until finally his little body could take no more and he died a very slow and agonizing death on March 19, 2011 at 12:10 pm, laying on my lap in Holtz Childrens ICU surrounded by all the people he loved and loved him. I watched my baby take his last breath and wished with all my being I was taking mine at the same time.

This is why I have a broken heart………………

This is why each day is an eternal struggle to survive…………

In my baby’s short 7 years he taught me the true meaning of LOVE, COURAGE and HOPE.  We were never apart during his short time on earth. There were times I went 2 weeks without taking a shower so as not to leave his side. We slept together wrapped in each others love and comfort, whether it was in a hospital bed, his NY apartment, a hotel room near a hospital or our wonderful home, we spent every waking & sleeping moment TOGETHER. We fought this evil disease like noone has ever fought before.

Now I find my self alone, but not physically of course.  I have my family…..a husband and 4 other beautiful children that I adore…… but my heart is broken. There is no longer the joy and happiness that once dwelled within me. I may smile and laugh but the darkness and emptiness within is always there. The void in my heart is overwhelming  and will never ever be filled.  

I look forward to the day my precious baby and I will be reunited and I now live each day for the signs he so regularly sends me. I am mad at God for taking him from me…….how could he do that when I was such a good Christian??? How could he punish me this way????? I lived a perfect Christian life, I taught Sunday School, I sent my kids to Christian school for 11 years, I prayed to God every single day of my life…….. How could he have made my baby suffer so???? How could he make me suffer like this for the rest of my life?????? How?????? Someday I may know the answer………….someday that could not come soon  enough….

Until then……………I will forever…………….

Wake Up With A Broken Heart…….