1. To provide stress relief kits to patients staying in the hospital. 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 a 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 outside of the hospital that are thinking 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 that Sean’s latest scan, one year after his radiation treatment ended, has come back clear, we want to pay it forward. We want to be there for other families the way our friends and community was here 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 indication 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 parents 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 or consulting a series of specialist 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 and support research for rare pediatric cancers, pediatric brain tumors and sarcomas.
Ten days after Sean’s first surgery, his pathology report came back that he had a Sarcoma. Sarcoma has the nickname of being the “forgotten cancer”, because it is a rare type of cancer. It usually starts on the lower part of the body, or in the bone, but with Sean’s case it started on the lining of his brain. The challenge of this is that Sean is the first case of this type in our area and there are not many cases even around the whole country. Sean is now almost 2 years into his cancer journey, and we still have little information about the type of cancer he has. We may or may not get the answer we want for Sean, but, given the chance, we would like to reach a point where we can contribute funds towards raising awareness and support research towards finding a cure or better treatment for rare pediatric cancers, pediatric brain tumors, and sarcomas in order to help others.