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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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My Broken Heart……. July 20, 2012

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