When neuroblastoma hit a family so close to ours, I just could not believe the devastation it caused. As this disease took the life of Ben Towne it made me want to help in any way I could so that others would not have to go through what Carin, Jeff and their families were put through. Shortly after Ben’s death, neuroblastoma struck my own family as my cousin’s son Carter was diagnosed. I couldn’t believe that this disease I had never even heard of was hitting so close to home, repeatedly. It is hard to know what exactly you can do to help those that have been through or are going through this, and I trust that Ben Towne foundation is the right place to focus my efforts in order to fight this disease and offer support.
As we reached the final stages of planning our recent wedding we decided the best way to honor our guests that had traveled to Sun Valley, to be with us and celebrate, was to make a donation to the foundation in their names. On January 15, 2011, in memory of Ben Towne and Carter Kronmal, we were able to make a donation to Ben Towne Foundation which was also matched by Google. Each guest received a card at their place setting that told them a donation had been made in their honor. We were lucky enough to have Carter’s parents, Ben’s Grandparents and Ben’s Aunt in attendance at the wedding. They did not know about the donation prior and it was nice to see the appreciation and emotion from all of them. They are so special to us, and it was nice to be able to add this touch to an already magical evening. Thank you to Bruce and Gail Richards for your generous support of this idea.
There has been tremendous support for the foundation throughout the Seattle area. The word has spread about the different ways people have gotten involved. I am not in the medical field and know that I will not be able to solve this problem without the help of others. If our donation can help those that do have the knowledge to work towards a cure, then I want to continue to think of ways to raise money and donate. It was a destination wedding and our guests had done so much to be with us. I wanted to give back, but in a way that is meaningful. Nothing against personalized M&Ms, but it just wasn’t fitting the bill.
By raising awareness at large events like this, my hope is that those that learn of the foundation will want to continue to provide support.
Thank you Susie and Brian for honoring Carter and Ben this way. For using your amazing celebration as a time to think of others. We are grateful for your support and wish you much joy in your future together. Congratulations!
Ryan’s imagination has exploded over the past couple months. Games, stories, and make believe seem to pour out of his mind and mouth continuously. Space helicopters that fly to the moon, dunk tanks in our basement, and pirate ships are common destinations in Ryan’s world. It has been highly entertaining for us. Having spent a portion of my life getting degrees in “pretend” and being paid to make things up, when it first starting happening I took great pride in it. And then it slowly dawned on me – this is not a product of his biology, this is normal. That this is developmentally appropriate. This realization was startling, for in looking back we realized that Ben seldom made anything up. He loved movies and books, but his imagination never took shape. I hadn’t really noticed that before.
Ben’s basic form of make believe came in telling Tigger what procedure was about to be done on him. “Tigger, you are going to get a poke right now.” Or, “Tigger, I am going to change your dressing and clean your tubes.” But can that really constitute as an imagination? Or just a copping mechanism to not feel so alone and tortured? Was it because his life was too real? Or that there wasn’t time? Or that he never had any freedom, for his course of treatment was too intense? I don’t know. But even as Ryan approaches the same age as Ben was, he seems so much younger. Ben was forced to grow up. That probably sounds strange, as he only lived to be three and a half. But there was a wisdom about him that defied his age. While Ryan flies around the house wearing Buzz Lightyear wings, Ben knew how to administer Heparin. He knew how to clean his Hickman line with alcohol pads. I suppose the only solace is that he didn’t know any differently. That’s what happens when you are diagnosed at the age of two – you don’t know what your life was supposed to be like.
Cancer ultimately took Ben’s life – but along the way, it took so many other things. It took his childhood and his freedom. There are so many losses – and I seem to be still discovering them anew as we grow with Ryan. For as first time parents even we didn’t know just how much Ben was missing, until now. Some days as my own coping mechanism I try to pretend that this didn’t really happen to us – to him. That Ben will be back soon. That his room will once again be occupied. That I won’t have to live here for the next sixty years without my firstborn. But then, that little train that took me like Lady Elaine Fairchilde into the land of make believe returns me wearily to the station of reality. Denial is smashed to pieces once again and sorrow overwhelms me. Luckily in those moments Ryan usually flies in and says something like, “Look mom! I am a big scary lion and my penis is really big!” Yah. We can all pretend right? Or at least most of us can.
For those of you in Seattle and those who have been tracking with us for quite some time, you know that we have been advocates for the Seattle Children’s Hospital expansion. A much needed, delayed because of legalities, expansion. We live only a few blocks, ironically, from the hospital – so when I finally saw the land being cleared I literally offered up my thanksgiving out loud, by myself, on the street. As you can see from this picture, the site is pretty much cleared debris at this point.
I have watched the demolition with great excitement and sadness. Excitement because of how badly needed the new individual rooms and beds are. Sadness because Ben will never receive treatment there and for the families that are currently sharing rooms with strangers while they attempt to save their child’s life. They cannot build fast enough.
But a lot has to happen before those rooms are ready for occupancy. It will take time to build a new structure from a pile of wreckage. Similarly, we have been tasked with rebuilding our life from the rubble – a life without Ben. And it is hard – much harder than fighting the Laurelhurst Community Club. Oh how I wish we could just hire a legal team and work out some kind of agreement. Negotiations would be very quick – for we would agree to anything to have our son back. But death is not like that. It is non-negotiable.
But we are getting up. We are going to work, like the hundreds of Sellen employees tasked with the expansion. We are being forced to construct a new life. It is clear to me though that even after we have passed Ben’s second anniversary that it is going to take a long time. And I suspect we will never finish the building process. Let’s hope Sellen Construction is more successful than us. But more than anything, I hope our foundation will play a role in the way kids are treated and cured from cancer. And then one day far into the future the two floors that will soon be devoted solely to cancer patients will no longer be needed. Wouldn’t that be a fun demolition?