My brother, Matt, would’ve been 30 today.
Just 18 days after his 14th birthday, he passed away on February 21, 2000, in a hospital bed from complications due to Wegener’s Granulomatosis (now Granulomatosis with polyangiitis or GPA), a form of Vasculitis which annihilated his lungs and kidneys beyond any control of doctors. [I wrote about this extensively here: http://jimvaragona.com/2014/02/03/14-years/] He had only been diagnosed in the previous 2 weeks in the hospital while in an induced coma. His pediatrician blew off Matt’s symptoms of fevers and a heavy cough that produced lots of bloody phlegm as a bad flu. So there wasn’t much warning that things were so dire. Looking back, he had other symptoms of this disease in the year prior, but by themselves no one pieced it together. His bloody noses, periodic aches and pains, and weight loss were treated individually and not given much concern.
When he passed, my family was angry, sure, but I’m not sure how much blame you can put on any one individual when dealing with a rare condition. When diagnosed in a timely fashion though, “more than 80% of treated patients are alive at least eight years later. For many people with GPA, long term survival has been seen with many also being able to lead relatively normal lives.” While he was in the hospital, they said if he were to make it out, it would be a long road back to overcome the failing organs, involving transplants, and chemotherapy type treatments to overcome the GPA.
I had a dark year following this. [I wrote about that in depth here: http://jimvaragona.com/2014/02/21/redirect-dealing-with-loss/] Everyone deals with grief differently. I came out of that dark time by redirecting those feelings towards something positive.
We had a wonderful benefit a year after Matt passed and raised $19,000 for the Vasculitis Foundation to go towards research of the disease that killed him. We capped off the event with me shaving my massive fro in front of the attendees to get some extra donations. It raked in another $300. In the next 10 years, through 2 golf tournaments and various annual appeals through social media by me on his birthday and mine, my family and I raised additional funds putting our grand total at right under $30k by my calculations. Part of this is very selfish but necessary. There is definitely a feel good aspect of this, which helps overcome the negative thoughts of anger, sadness, and guilt, but only because we were putting so much into raising money to do good and creating awareness, all in Matt’s name.
I met my wife, Shannon, shortly after the benefit. My wife had tried to get me to fund raise for Diabetes, which I have had Type 1 since the age of 13, but there’s something that feels strange about fund raising to benefit your own condition. And my Diabetes, while it is a complete pain in the ass, is manageable. It is nothing that puts me at risk of death in the near future.
In 2008, Shannon was trying to talk me into cutting my hair. I always went to extremes with it. I either grew it out to fluff it or cut it really short by myself at home. It’s much cheaper that way. It wasn’t even very long at the time, but she convinced my to go bald for St. Baldrick’s that year. I had done it before for charity, so why not? She is a nurse at a children’s hospital and knew of others that had participated in the St. Baldrick’s events, as well as being aware of many children affected by this disease. The St. Baldrick’s Foundation puts on events at which people have their heads shaved in front of folks in solidarity with kids with cancer, but more importantly to raise money to fund research. It was kind of a last minute decision. I think I started raising funds 2 weeks before the event and got to a total of $285. I was so confused and awkward at the event that I went to by myself, that I didn’t make it on stage to have my head shaved. I was moved by the enthusiasm of the crowd as heads were shaved and additional money was raised as guys were prodded to also shed their facial hair. Shavees would tell why they were participating. I remember a grandfather, with a Duck Dynasty look to him, get his head shaved and explain that he was doing it for his granddaughter currently in treatment. He began to tear up and they raised another couple hundred for him to get rid of his massive beard.
Some years went by. I was still raising money for Vasculitis until around late 2013. I was letting my hair grow out again, but I have a very conservative job, so I wanted to have a reason to keep it that way. Through Facebook, I had watched a grade school classmate’s daughter go through treatments for Neuroblastoma (a cancer that is commonly found in the adrenal glands) for 2 years and pass away at the age of 6 in 2012. That stuck with me, considering I watched my parents bury a child, and I knew loss of a young person. Another grade school classmate’s nephew was going through treatments for Wilms tumor at that time in 2013. I thought of those two kids and went back to the St. Baldrick’s web site. I read that “More children are lost to cancer in the U.S. than any other disease — in fact, more than many other childhood diseases combined.” I made a connection at that point that it made more sense to go for the bigger killer, because no child should have to go through horrendous medical conditions and treatments and no family should have to watch their child endure the treatments and sometimes helplessly watch them die. I registered for my 2nd St. Baldrick’s shave, which took place in March of 2014.
During that event, I saw people shaving for kids in treatment, families showing up to shave years after a child had died, and kids with cancer shaving their parents. It’s an incredibly moving experience and shows how much people support the mission of the St. Baldrick’s Foundation. The event I shaved at was one of the tops in the nation in money raised ($580,000 that year) and how many people went bald, and continues to perform that way.
I was moved to the point of knowing that I would continue doing this. Prior to my shave last year, a co-worker brought to my attention the story of Jonny Wade, a then 7 year old from Jerseyville, IL, who had been diagnosed with Medullobalstoma, a rare brain cancer, the day after Christmas, 2014, and it had spread to his spine. His mother, Kimberly, wrote entries on a Facebook page to tell of his fight. His courage and words plus her writing garnered the Project Team Jonny page quite a following (69,000+ likes to date) who were inspired by the sweet, young boy and hoping and praying for the best. Jonny has a twin brother, Jacky, who I felt for. I wasn’t that young when my brother was sick, but I had an inkling of what he was going through. Sadly, Jonny passed away at the age of 8 on Christmas eve, 2015.
Kimberly Wade bravely conveyed both the sweet moments with her son, but also the ugliness of the disease. In the small amount of time since Jonny’s death, the Wade family has done quite a bit for the cause of childhood cancer, which their boy had once said during his fight, “I don’t want any other kid to have cancer.” They even attended President Obama’s State of the Union address on January 12, 2016, at the invitation of Illinois Congressman Rodney Davis. Their Team Jonny wristbands were given to members of Congress to support increased federal funding for childhood cancer research, and many members wore them proudly.
I have learned and I believe that one of the best ways to handle grief is to find or make the positive, as the Wades are doing. You remember the loved one and talk about them, but doing some good helps others, possibly in a similar situation, and gives a focus on improving the world and the lives of others that the person no longer around physically would surely be proud of. This year, I shave in memory of Jonny.
St. Baldrick’s Foundation fights to conquer childhood cancers. They are the largest private (non-government) funder of childhood cancer research grants. Only 4% of federal funding for cancer research is solely dedicated for childhood cancers, yet before they turn 20, about 1 in 285 children in the U.S. will have cancer. It seems like there’d be more of a focus on these lives, that could go on to do great things in this world, but are held back or snuffed out by this beast of a disease.
Charity Navigator, which scores non-profits on their financials, accountability, and transparency, gives St. Baldrick’s an overall score of 89.17 out of 100. I take pride in raising funds for this organization, over $12,000 through 3 shaves, which is doing it’s best to combat the disease that kills more kids in our country than any other. It’s not what killed my brother, but it helps other kids and families have hope to not endure the same fate. I think my brother could appreciate that, and it’s a suitable gift for the month he entered and left here.
You can give to this mission here: https://www.stbaldricks.org/participants/jvaragona
No donation is too small. Thanks for reading, sharing, and giving.
