Kids With a Brave Heart
Speech given by Baldo Minaudo at the 2005 first annual fundraiser for Kids With A Brave Heart
Maria Luisa and her husband Vince had just bought their first home in a small community near Toronto. It was safe and quiet – the perfect home to raise their two young children, four-year old Anthony and two-year old Alexia. After years of work, Maria Luisa and Vince’s childhood dream of a loving marriage and children had come true.
On April 1st, 2002, just two weeks after Anthony’s 4th birthday, Maria Luisa noticed a small patch of purplish-reddish pinpoints – very tiny broken blood vessels on her son’s neck. It was barely noticeable. Anthony had not been himself for three days; he’d vomited once, and he had similar patches on his arms, as well as a fever that came and went. But now his mother noticed more broken blood vessels, and his skin colouring wasn’t as rosy as usual. Being a health care professional, she realized there had to be a problem with his blood platelets. Deep inside, her motherly intuition told her something was terribly wrong, and she suddenly found herself crying. It had only been a few years since her father had died a very painful death from a blood disorder.
It was Easter Monday and Maria Luisa was anxious to get her son in to see their paediatrician. But the office was closed, so Maria Luisa prayed on the spot to her deceased father.
Eight p.m. the following evening. Maria Luisa and Vince watch anxiously as the doctor examines little Anthony. After a few minutes he turns to them and says, “I need you to do two things. First I need a blood test. Secondly, I need you to take Anthony to Sick Kids Hospital, tonight!”
When Maria Luisa heard those words she lost her breath, her knees buckled under her and she fell over the examining table.Â As her husband rushed to support her, she managed to say, “you’re telling me he has cancer?” In her healthcare career she had learned to know which actions are significant. A doctor demanding you take your son to Sick Kids Hospital immediately – is one of those events that’s significant.
Realizing the devastation his words had created, the doctor replied, “Well, we haven’t done any blood tests so we don’t know yet.”
“Please”, she cried, “You can’t leave me like this. Just tell me what it is!”
“He has an enlarged liver, and an enlarged spleen,” explained the doctor cautiously. “Plus there are the bruising and broken blood vessels. Based on these symptoms, I think he has leukemia.”
Maria Luisa gasped in horror, but knew she had to get herself together so she could rush from this office in Thornhill to Sick Kids Hospital in downtown Toronto.
“Mommy are you okay?” Little Anthony was too young to realize what was happening or the implications it would have on his life and the lives of those who loved him. His father Vince was as devastated as his mother, but knew he had to stay strong. Vince picked up his son and said, “It’s okay Anthony, every thing is okay.” But, even while he showed great courage, his fear showed in his eyes.
Minutes later they were on their way to downtown. Maria Luisa called her mother who was babysitting Alexia, their two-year old daughter. “Mom, we’re taking Anthony to the hospital, and we need you to take care of Alexia for the rest of the night.”
“To the hospital?” she queried, “What’s wrong?”
Not wanting to worry her mom, she replied simply, “The doctor just wants to run some tests.”
But her mother was not to be put off. “Maria Luisa,” she persisted, “I know something is wrong, I can hear it in your voice. What is it?”
As Maria Luisa struggled to keep back her tears, she blurted out, “Mom, they think he has Leukemia.”
“O Dio Mio” cried her mother, as she burst into hysterical tears. A very religious woman, as soon as she got off the phone she began to pray.
Both Maria Luisa and Vince were in a state of shock as they entered downtown Toronto. Although they knew the city very well and had been to Sick Kids several times before, they were confused and disoriented they could not find it. Finally Vince stopped a cab driver, saying, “Please tell me how to get to Sick Kids Hospital, my son is sick”
In the emergency department, the triage nurse took one look at Anthony and began asking him questions about his bruises. When his mother tried to explain, the nurse said, “I’m talking to your son, please wait over there.” Maria Luisa could tell the nurse suspected child abuse, and then classified Anthony’s case as non-urgent. Again Maria tried to explain, and again he would not listen. Finally, she demanded that he read the letter that their paediatrician had faxed to the hospital while they were en route. When the nurse returned after reading the letter, his face had totally changed, now realizing what was at stake.
By 10:00 pm the tests were done, but the results would not be back until 2:00 in the morning. Vince and Maria Luisa had watched while their little son had been repeatedly poked and probed everywhere. It was the first time in his young life that he had gone through blood tests, and he was very frightened. It had been the longest two hours in the couple’s life and now they had to wait another four hours for the results.
The oncology fellow finally returned, “I’m sorry,” he began, “it looks like Leukemia. I’m 99% sure, but to be totally sure, we need to do a bone marrow test.”
Maria Luisa felt like someone had just reached into her chest and ripped out her heart; like she had nothing left to live for. Vince was very, very quiet. His head was down and his hands covered his eyes. They were both completely distraught, unable to absorb what was happening. “Okay, this is just a nightmare,” hoped Maria Luisa, “and we’re going to wake up from it.”
The next day the bone marrow and lumbar puncture tests were done, and they confirmed that Anthony had Leukemia. Without hesitation, the doctor started him on Chemotherapy the same day. Anthony’s devastated parents realized that this was a nightmare all right, but there would be no waking up from it.
During the first two weeks, both parents stayed at their son’s side. Maria Luisa had to stop working in order to take her son to his daily treatments. After the first two weeks, she would then travel 90 minutes in each direction to the hospital, every day. Vince had to return to work to in order to keep the money flowing.
Maria Luisa’s mother did her best to help, spending lots of time at the hospital and taking care of Alexia. One day she said to her daughter, “Maria Luisa, you have to leave it in God’s hands. He’ll take care of everything.”
But Maria was furious, and would have none of it. “God?!” she cried. “First of all, if there IS a God, this wouldn’t have happened to my Anthony.” Maria was doubting her life-long faith.
For the first little while, the relationship between Maria Luisa and Vince was strained.Â Vince was very quiet.Â Soon they realized this wasnâ€™t something that was just going to go away, and they were going to have to learn to live with it.Â Things became very stressful.Â Yet, something kept them close, and without having to say much to each other, they stayed connected.Â
Prior to this, little Anthony couldnâ€™t even take the smallest tablet without gagging.Â Now he had to take medication by mouth.Â He was on steroids and he was not acting like himself.Â Sometimes he would grab his parents by the neck and swear at them.
â€œI promise Iâ€™ll be a good boyâ€, he would say, because he thought he was being punished.Â When he first entered the hospital he had IV tubes in both arms, so he was unable to use either of them. Two days later they surgically inserted a Portacath into his chest in order to administer the chemotherapy without collapsing his arteries, and with less discomfort to him.
Maria Luisa had entered her own little world. No one knew how she felt. “Why are we being punished?” she would ask God, and why is Anthony being punished?” She cried every day. Often, when her son was asleep, Maria Luisa would go into his room, lay on the floor and just weep. It was the way she found to release the stress of not knowing.
Maria Luisa had grown up close to the church. But after her children were born she hadn’t attended mass as often. They didn’t want to go and they cried and made noise when she took them. But now she felt alone and lost and she turned once again to God, asking for help, praying the Rosary for her son. She found herself bargaining – “God help me, God have mercy on me. Have mercy on Anthony.” She began going to church alone during the day when no one was around, and just talking to the Eucharist box and weeping.
She also went to healing masses. The denomination didn’t matter, she went to as many as she could find. Wherever there was someone with the healing gift she would be there. Sometimes she couldn’t understand what they were saying, but it didn’t matter, it was now all about faith for Maria Luisa.
Six months later, Maria Luisa became unexpectedly pregnant, and quickly realized this was a good thing. It made Anthony feel better knowing a new baby was coming. There was something else to think about besides Leukemia, cancer or death, and she felt her pregnancy was a gift from God. But, in November she miscarried, lost the baby, and required surgery. Little Anthony could not understand what had happened. “Mommy,” he asked, “where is the baby? But, where did the baby go?”
Now she felt like she had lost something, so she and Vince decided to try and get pregnant again.Â They were successful, and to their great happiness, in October of 2003, little Giulia was born.
Although Anthony had been considered in remission on day 28 of his treatment, the ordeal would not be over for years. Leukemia can hide in the liquid surrounding the spinal column. Like most cancers, it is a game of wait and see. It is a tremendous weight to live with – for anyone that has been touched by cancer.
Two and a half years after his treatments began, it was time to repeat the bone marrow and lumbar puncture tests. To every one’s horror, some white blood cells were found in Anthony’s spinal fluid, possibly indicating that he was out of remission, and the leukemia was back. To be sure this wasn’t caused by an infection, they had to wait a week, and then repeat the tests. That day at a healing mass, the healer told Maria Luisa not to worry, that nothing was wrong, and Anthony was fine. Yet, for Anthony’s parents, it was another week from Hell.
On November 18th 2004, the results from the tests came back. The doctor called them at home and told them there were no blasts and therefore no indication of cancer in the bone marrow. The family was hugely relieved. Even so, it takes five years to be considered cancer free, and a lot of kids don’t make it through the chemotherapy.
Yet, this courageous little boy, with the love and faith of his parents – has survived, and is here with us today.
Anthony Raponi missed what most children experience between the ages of four and six. His illness has totally changed his life, as well as the lives of his parents, his grandparents, and Alexia and Giulia forever. They live their lives differently now. If Anthony is having a good day, then they go and do things. Even though their lives are not as restricted as they have been over the last three years, they are still afraid deep inside. How can they not be after an experience like this?
This is the second time that Sick Kids Hospital has saved Anthony’s life. When he was born at Markham-Stouffville Hospital he had Meconium Aspiration Syndrome. Immediately, the Hospital For Sick Children sent a helicopter to pick up the newborn and transport him downtown for the lifesaving care he needed, and only they could give.
On the night of November 18 when Maria Luisa received the test results, she was jubilant, and so inspired that she vowed to do whatever she could to support the Hospital For Sick Children. And so it is that we are here tonight at Kids With A Brave Heart in honour of Anthony Raponi, and to celebrate and thank the Hospital for Sick Children for the wonderful, lifesaving work they do.
Of all the gifts that we can possibly have, there is none so valuable as life itself.Â And when a new life is saved, no one knows what it will lead to. What is in store for Anthony? Will he one day father his own children? Will he become a firefighter? Or perhaps even discover the cure for cancer? We don’t know what the future will bring, but we do know that every single person touched by cancer, every single child saved from cancer by The Hospital For Sick Children has a part to play in our world and will affect our future. And for every child lost to cancer, there is a piece of our communal legacy that is lost forever.
So, to all you here this evening thank you for caring and supporting those, which support us, for caring not just about little Anthony Raponi, but also for caring for The Hospital for Sick Children and for caring about our community. It is because of you being here tonight that another child’s life may be saved.
Thank You again.
Baldo Baldassare Minaudo, B.A., B.A. (Hons.), M.B.A., C.E.O. of MetroActive Lifestyle Network.Â Minaudo is a keynote speaker, leadership coach and author of the soon to be released ‘The Banker Who Saved His Soul’. He is also Anthony Raponi’s second cousin and is a member of the Kids With A Brave Heart Committee.
MetroActive Lifestyle Network www.metroactive.org is an organization supporting individuals in succeeding in all areas of their lives and among its programs provides fundraising, promotional and administrative assistance to charities.
This event was sponsored by MetroActive Lifestyle Network