It is a pet peeve of mine - survivors who see themselves as victims...still playing the "cancer card" left and right. I guess this really can apply to any type of hardship, whether from childhood or adulthood. Crap happens. It is what we do afterwards that matters the most. How do we utilize our sorrows and tragedies? Do we file them into our "I would rather not remember this" memory cabinet or do we try and help others?
I guess this is a shameless promotion for the not-for-profit that my husband and I started back in 2008 - HeartBoxed. It is related to my above ramblings, though - using something that could be seen as negative and using it instead for good.
According to our website (www.heartboxed.org):
HeartBoxed is an organization whose goal is to tangibly encourage children from financially strained families who require extended stays in the hospital. When families are incapable of providing their ill children the adequate diversions and support they require, HeartBoxed's desire is to help alleviate some of the pain of these difficult times. The hope of HeartBoxed is to raise the spirits and motivate these children during their fights against these serious illnesses.
That is the "why" part of things, but there is a much longer backstory to how HeartBoxed was birthed.
Back while I was on chemotherapy, I knew that if I were to ever relapse, I would need to have a bone marrow transplant. It was the dirty-worded last ditch attempts for saving a life - an option that no one wanted to take. Then again, who would want cancer to start with, but still... Last ditch, "please God, don't let it happen to me," type treatment. I was lucky to never have needed one - but more than a few friends had to take that journey. When one of my closest cancer friends relapsed and had to have a bone marrow transplant, I was horrified. I was scared for her and was upset at how incredibly powerless to help that I would be. Visiting her wasn't even allowed!
In general, bone marrow transplants require around a 3 month stay in the hospital, with at least that long of daily hospital/clinic trips, while living within a mile radius of it. (Read: Get an apartment, because you aren't going home!) The way it was explained to me: The patient is brought as close to death as possible, killing off their own bone marrow with high doses of chemotherapy and intense fully body radiation during the weeks leading up to the actual "transplant." Then, afterward that, all attempts are made to bring them back to life - hoping that the new marrow "takes" and their aren't adverse effects of the body rejecting the marrow or unforeseen complications from the match.
I wanted to take my friend's place. I knew how to do the chemo patient thing - I was a pro at playing that part. But the bystander? That was not a role I was either used to or comfortable with...there had to be MORE. What I did do was make her a couple of months of things to do - a letter to read each day, little presents to open, activities and challenges - anything to pass the time. It did serve as the encouragement in which I had hoped.
A few years later, there was a neighbor of a friend, another young girl, who was going to have a bone marrow transplant. I was asked if I could do something like what I had done for my friend, so I did that. A few years after that, a family friend's daughter had to have a bone marrow transplant and I did the same again. A few years later, two adult friends had to have bone marrow transplants within a year of each other. With one I did a modified version of similar encouragement and the other was more "traditional" to what I had done in the past. It was after that last one that my mother suggested patenting the idea or something of the likes...which made me start thinking...
I knew I could never create some type of template for people to purchase or custom make for any monetary gain. However, it was something I was good at and had decades of practice doing by that point. It had always received positive feedback of encouragement, as well as the welcomed distraction from being sick. It was then that we began praying and were given the clear direction to start a ministry - a not-for-profit that could put these gifts to better use.
In May 2008, we became a 501(c)3 non profit and, by the following May, we were partnered with Duke's Pediatric Bone Marrow Transplant Unit's Family Support team. (Since I get asked this often - No, we do not profit. By not-for-profit, every donation that is made - whether cash, needed items, or time - is donated and used 100% for the kids we help. No kick backs.)
Again, from the website, "What we do:"
HeartBoxed creates age and gender appropriate packages that are catered to the personalities and interests of the children referred to the organization. Each package includes a book that serves as a calendar for his/her stay and is made specifically for the child, with themes that will engage them. On each page, there are tabs to peek under instructing a numbered gift to open, challenges to perform, and activities to fill the child’s day. Crafts, activities, and gifts are wrapped to open in coordination with these tabs.
For the past five years, we have had the privilege to be apart of this ministry. It is not something that always comes easy, though. I know that with every kiddo I "get to know" via their intake sheets (full of information on likes and dislikes), that there are many who will never leave the transplant unit. I grieve whenever I hear about one of those sweet souls who did not make it through to the other side of the transplant. I also rejoice when I hear of those who do! I have learned how to be the "support person" in the cancer scenario, whether making the books/boxes for kids or visiting a teen and talking about times when I was bald or sick with them. I am the one on the other side - grown into an adult with three miracle babies (that I wasn't supposed to be able to have), alive and well, and....with HAIR! Never underestimate the encouragement of a veteran bald kid who now has hair! I wanna grow up, I wanna grow HAIR, and I want to go to...maybe not Boise. ;)
