During Childhood Cancer Awareness Month, we are sharing stories from the many families we’ve served over the past twenty years. Childhood cancer leaves a lasting impact on every family touched by the disease. This month we honor their many unique journeys through childhood cancer and ask you to stand with us by joining our monthly giving program.
We love to stay in touch with all of our families through and beyond cancer. Recently, we sat down with Julio’s mother, Melissa, to talk about her special boy. Julio’s story was originally featured on a #MissionMonday post last year. We are grateful to Melissa for the brave conversation about how she celebrates Julio’s memory and the long term financial impact of cancer on her family.
Family Reach: Tell us about Julio.
Melissa: Every time someone asks me this question, I answer that Julio was SPECIAL. He was special from the day he was born. I like to tell everyone the story of how the doctor told me I was having a girl and out came Julio!
Julio was wise beyond his years. Throughout the entire time he was fighting cancer he never complained about having to go through treatment. (Except when he had to get a shot. He did not like needles.) He never questioned why he was chosen to be sick. Only when he was near death did he start asking questions about what was happening to him. He was wise beyond his years.
Family Reach: Tell us how Julio’s treatment affected your ability to care for your family, financially.
Melissa: I got fired from my job the day we returned from our Make-a-Wish trip. My employer said that I had missed too much work due to Julio’s illness. I was able to collect unemployment for a period of time, but that was only a portion of my salary.
In the beginning it was so hard to get help. I really didn’t know where to turn or who to ask. It was so difficult because Julio kept getting denied Social Security benefits. I had to go through a review and appeal process. He ultimately did get approved for benefits but it was just two months before he died.
I was able to pay for all of Julio’s medical care through his Medicaid benefits, but I had limited income to pay for rent, car insurance, my cell phone bill and childcare costs. The travel costs we were incurring were astronomical.
To help make extra money during Julio’s treatment, I baked and sold cakes. Julio loved helping me do this. He was so proud that he was helping me to help our family.
Family Reach: What other financial impact did the treatment take on your family?
Melissa: The costs of our travel, what I was paying for gas and parking, were really high during the more difficult portions of Julio’s treatment. Also, because of all of the travel, my older car needed repairs, which were expensive.
Childcare costs for Julio’s younger sister were expensive. When Julio had long-term hospitalizations, which happened several times during his battle with cancer, the cost of childcare for his sister was very high. Children are not allowed to visit the PICU, and Julio spent months there.
Family Reach: Can you tell us more about Julio’s bracelet project?
Melissa: While he was in the hospital, Julio loved to do arts and crafts. He went through phases of what kind of craft he liked to do; origami, making bracelets, coloring, drawing, etc. When he was making bracelets his nurses started putting in requests for bracelets and paying for them in quarters (State quarters were Julio’s favorite. He wouldn’t let you pay with other coins or dollars, it had to be state quarters.) Nurses suggested he start to make bracelets to sell throughout the hospital. People would come to his room to ask him for a bracelet. He wouldn’t just make them right away or give the person a bracelet he already made; they had to put an order in. Everyone could chose 2 or 3 colors and then he would customize the bracelet.
Julio’s bracelets were a wonderful distraction for him. His favorite thing about the bracelets was seeing someone’s reaction when they came to pick up their bracelet.
Family Reach: How do you and your family celebrate Julio’s memory?
Melissa: We talk about Julio constantly. It is very hard for my daughter, she doesn’t understand where Julio is and she misses him so much.
Because I became pregnant shortly after Julio’s passing, we haven’t done anything formally to celebrate his life. I am planning on continuing with his bracelet program. I want to take them to the hospital and pass them out to other children and families with pediatric cancer and tell them how brave Julio was. That is what I want to make sure happens, that everyone remembers Julio and remembers how brave he was.
When I am feeling stronger, I also want to work to get more support for families who have a child with cancer. Families need more support when they are experiencing a long-term hospitalization. I want to increase awareness about what happens to a family financially when a child gets cancer. Families need access to more emotional and financial support. Also, I would like to work to establish programs that more easily provide support for siblings.
Family Reach: What advice would you give to a parent facing a cancer diagnosis of their child?
Melissa: I would say to take and use all the support that is offered to you. I was too proud. I would tell people that my family was ok…when I wasn’t. I would tell them, don’t be ashamed to ask for and accept help. You have done nothing wrong, your child has cancer and you need help.
We are proud to have stood by Julio when his family needed us most. Become a Key Holder today and double your impact with a matching gift from The Castle Group. With the help of our Key Holders, we can be there for the thousands of families who will hear the words “your child has cancer” this month.