Smiles from Sean believes that there is always a reason to smile, and together we can create more smiles.
1. Smiles from Sean’s mission is to create real smiles for children with an underlying medical in the US. Smiles from Sean currently has two create smiles projects: a. the smiley care package or stress relief kit that we sent all year round to the children/teens with an underlying medical condition throughout the continental US states; and b. the Easter project where we create and deliver Easter baskets for children and teens with health issues and their siblings in the Metro Pittsburgh region.
Sean, as a pediatric cancer patient himself, knows how it’s like fighting an illness and being isolated from everybody. On October 22, 2017, Sean went to the hospital for an MRI and it was discovered that he had a tumor on the lining of his brain. Due to the urgent need for surgery to remove the tumor and basic recovery, Sean was unable to leave the hospital for 2 weeks. In March 2018, his follow-up MRI revealed that the tumor had recurred. As a result, he needed second brain surgery, in April 2018, followed by another long stay in the hospital and follow-up radiation treatment. Therefore, Sean knows exactly what it feels like to be in the hospital hooked up to machines, scared, poked with needles multiple times a day, and isolated from everyone you love and everything you like. Smiles from Sean is Sean’s way of letting other kids know that they are not alone and there are people that think of them too.
2. To raise money for families in need of help with incidentals while they are caring for their child in the hospital.
Only a few days prior to Sean being diagnosed with a rare brain tumor, his father had become newly unemployed and the family was gravely concerned about how they would make ends meet as they cared for Sean and his 3 younger siblings, the youngest only 2 months old. At that time, the only family member who was able to help us was Sean’s paternal grandmother. Unfortunately, the tasks and responsibilities of caring for Sean and trying to maintain some sense of security for his siblings in this difficult time were extensive and led to our family humbly needing to accept the support, care, and kindness of our friends, our community, and even strangers. With the support of many, we were able to struggle through. Now we want to pay it forward and we want to be there for other families the way our friends and community were there for us.
3. To raise awareness about the importance of annual well-child visits and advocating for your child.
Sean’s case is unique. When we went in for Sean’s annual well-child appointment, in April 2017, there was no obvious indication of a life-threatening illness. There were none of the typical indications that he had a brain tumor. However, there was a sign that something was wrong, and it was only discovered because we were able to compare Sean’s current weight to his numbers from his previous well-child appointment. Instead of his numbers showing steady growth, Sean’s numbers indicated that he had drastically lost weight. Not seriously concerned, but aware that we needed to address this issue Sean, a picky eater, was referred to a nutritionist. But after a few months of working with the nutritionist, Sean had hardly gained any weight. A parent’s instincts kicked in that there was something else going on and we returned to see Sean’s pediatrician and asked for blood work. Blood work revealed that Sean was severely anemic, and these results set us on our path of consulting a series of specialists until we finally discovered Sean’s brain tumor.
Having gone through this situation, we have come to truly understand the importance of well-child visits. Had we not gone for his annual appointment, it could have been many more months or possibly even years before we realized something was wrong; further delaying his treatment and his chances of a positive outcome. There are so many diseases out there that tend to mimic one another or that initially only show subtle symptoms that a parent might miss. Additionally, there are many rare types of pediatric cancers and brain tumors that have no known or no common signs. Parents need to take their children for their annual checkups and they need to trust their instincts and advocate for themselves, their loved ones, and most especially their children.
4. To raise awareness about pediatric brain tumors, childhood cancer, and pediatric sarcomas and support research for pediatric cancers.
Ten days after Sean’s first surgery, his pathology report came back that he had a Sarcoma. His type of cancer is a central nervous system sarcoma with an aggressive clinical course. This type of cancer usually starts on the other part of the body, however, for Sean it originated in the lining of his brain. Sean is the fourth and youngest patient record to have been diagnosed with his specific type of sarcoma. And, because of its rarity, there is not much information about it. With our Smiles From Sean effort, we are hopeful that we can partake in being a part of a change in childhood cancer care treatment. Aside from Sean’s specific type of cancer, it’s Smiles From Sean’s mission as well to bring awareness about the pediatric brain tumor, and childhood cancer as a whole. Many of the kids we know in this cancer journey lost their battle to childhood cancer, and we’re hoping that our initiatives can lead to greater hope for a cure and better treatment for childhood cancer.