Daniella’s Wish February 27, 2015
Posted by Waking Up With A Broken Heart in Wishes.Tags: Ahmad Hassan, Ahmed Hassan, Childhood Cancer, Cure Childhood Cancer, Daniell's Wish, Dr Guillermo DeAngulo, Duane Draughon, Happiness, Imagine, love, Mystic Force Foundation, Neuroblastoma, Salvatore Vanni
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Daniella’s Wish
What it means to me………
Sal taught me how important it is to live life and be happy every moment possible. To never take a day for granted, to never dwell on the unhappy parts of life. He taught me how important it is to celebrate each and every day on this earth. His love of life, his love of parties, of food, of music and of dancing inspire me to do all the things for others that he loved to do himself.
Daniella is a precious 2-year-old girl battling High Risk Stage III Neuroblastoma cancer. When Daniella was going thru her stem cell transplant, as she lay in her hospital bed for weeks, unable to eat or drink due to the ulcers in her mouth and going down her esophagus (and more); side effects from the harsh chemo, her mom, trying desperately to think of the better days to come, told me she wanted to fix up the yard & get a swing set so Daniella could go outside when her counts permitted. (At that moment I saw myself in her eyes, wanting to take away my baby’s pain and wanting to make my baby happy, any way I could. It was all that mattered to me) As Dania and I were discussing this “playground”, Dania was thinking a backyard swing set with a Barbeque grill. I, on the other hand, was thinking a wood deck with a wooden swing set over soft pliable turf so that if she falls she doesn’t get hurt. (Very important when your platelets are always low due to cancer treatments.) I pictured a play area free of dirt and grass that harbor germs, (very important when you are continuously immunocompromised) a place that no matter what she was going through she can walk outside and have what every child should have……..a place to play and be a child. A place to get away from the every day torment of the cancer world.
THAT WAS MY VISION……..
I will never forget the time Sal & I were away for treatment for a few months and when we came home his daddy had put up a wooden swing set with a slide for him, he was overjoyed with happiness. The look on his face is something I will never forget. For the next few years, when we were home from whatever state he was being treated in at the time, he would spend hours outside. When he didn’t feel good we would just swing. When he did feel good you would see him climbing the little rock climbing wall, sliding down his slide or having lunch with his BFF Chase in his little clubhouse, which also served as his hiding place when he was playing Nerf gun wars with his brothers & sister.
Sal’s last gunfight 2 months before he died.
Home from 3f8 treatment at Sloan Kettering in NY. One year into active treatment Fall 2008
Happiness……
I knew just buying or getting a swing set donated for Daniella was not enough. So, as usual, I thought big, I thought who could do this for me? For Daniella? I knew whom I wanted to ask. After several emails & Twitter direct messages Ahmed Hassan, Celebrity Landscaper answered me. I’m sure he thought I was crazy, this woman from Florida he did not know, from Mystic Force Foundation, a charity he had never heard of, asking him to fly across the country, build what I described as a germ free backyard playground oasis & do it free of charge, solely thru donations. All for this very special little girl that he had never met……. But, I asked & sent pictures and when he replied, I knew. I knew Ahmed Hassan was going to do this. Because I knew, somehow, he would love Daniella & would want this for her as I do, just by looking at her picture and feeling the love & need to do this. We went back & forth several times, trying to figure out how to accomplish this, with urgency. I know from experience that there are a lot of wonderful people in this world, many, who could help us grant this Wish. I know this because it is what I do……EVERY DAY………ask people to help me make others happy.
Ahmed Hassan, Celebrity Landscaper
We started a Thoughtful.org page for Daniella and within hours we had thousands of dollars donated from people wanting to help. The amazing Southwest Airlines agreed to help with Daniella’s Wish and are donating the tickets for Ahmed and his designer, Duane Draughon to fly in this coming week to look at and start to design Daniella’s back yard play space. Miami Springs Mayor Zavier Garcia has worked out the hotel stay being donated by the beautiful EB Hotel and car rental has been provided at a discount from Hertz. Dr. Guillermo, DeAngulo, Daniella’s oncologist (& Sal’s!) will be meeting with us so that Ahmed can better understand Daniella’s disease and needs around the space. I will also take him up to 3North so he can see where our kids spend so much time……so much time having life saving poisons infused into their little bodies. Where they spend weeks to months at a time recovering from these torturous treatments.
THE FLOOR WHERE REAL LIFE HEROES CAN BE FOUND.
As I sit here typing this with tears streaming down my face, I know my baby is next to me telling me “don’t be such a baby” (what he always said when I would cry) and telling me to be smile because we are about to make Daniella VERY HAPPY….
So that is what Daniella’s Wish means to me…..HAPPINESS…….because Daniella’s Wish won’t last for a week or two, no, it will bring her continued joy and a lifetime of happy memories. It will bring happiness to Daniella’s mom, Dania, my friend, such joy & happiness to see her baby happy. And, I know how important that is………..
Anyone wanting to help grant Daniella’s Wish, either through *monetary donations, volunteering the days of installation, donating items or anything else, please feel free to contact me. Silvia@MysticForceFoundation.com
You can follow Daniella’s story @ www.TeamDaniella.org
*Monetary Donations on Thoughtful.org for Daniella’s Wish will not be issued a tax receipt as this money is being used for expenses for anything not donated to build the playground. Any monies remaining in the account will be donated to the Mystic Force Foundation for Childhood Cancer Research.
Seconds in the actual realm of my reality…… March 10, 2013
Posted by Waking Up With A Broken Heart in Uncategorized.Tags: Childhood Cancer, grief, love, Mystic Force Foundation, Sal, Salvatore Vanni, Silvia Vanni
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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?
What Does “Rare” Really Mean??? September 19, 2012
Posted by Waking Up With A Broken Heart in National Childhood Cancer Awareness Month.Tags: broken heart, Childhood Cancer, Children, Education, Family, health, medicine, Mystic Force Foundation, pain, research, Salvatore Vanni, science
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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!
My Broken Heart……. July 20, 2012
Posted by Waking Up With A Broken Heart in Love & Grief.Tags: broken heart, Childhood Cancer, grief, love, Mystic Force Foundation, pain, Sal, Salvatore Vanni, Silvia Vanni
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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…….
Waking Up With A Broken Heart 