Thursday, June 16, 2016

Just Part of It- the Giving side of Cancer

As a cancer family, we have lots of organizations that have helped us as a family. Some with very tangible gifts, the Hawaii Children's Cancer Foundation that helped us with some unexpected bills when Lily was first diagnosed or the Make A Wish Foundation, who sent our entire family to Disney World after Lily finished treatment. Other groups like HUGS here in Hawaii, offered respites, surf outings and fun with other families going through tough times.  They also helped us celebrate the lives of some of our dear friends in their annual Celebration of Life ceremonies and we could always look forward to wonderful Christmas Parties. It is humbling to be on the receiving end of charity. But it is also an important thing for families to be a part of it. For years I volunteered in many different ways, we always raised money for St. Jude's in grade school, I helped run a Christmas card campaign at the Children's Hospital in Denver when I wasn't spending time wiping down the play room, delivering books to patients or doing arts and crafts.

Hawaii doesn't have as many resources as some other states, but the ones they do have are very special. Somehow we seem to miss out on the sibling camp and cancer kid camp every year. I think it would help my kids, but then part of me is truly grateful we are not in clinic enough to be aware of or recommended for these resources and too busy with normal activities. As I've learned, adult cancering is very different than kid cancering. As it should be. Kids shouldn't get cancer. I've always walked the fine line between awareness and normalcy. I've known adult survivors of childhood cancer who let cancer be the very foundation of who they were. You can not go through something like cancer and not have it BE part of you, but I want more for my kids, I want them to have moments of normal in the world of LFS. It's a balance. I shy away from letting my kids be the spokesperson or poster child for events. I didn't want them to be known as the kid who has cancer, to be labelled. Yet let's face it- it is a big part of who we are. So this year, Lily is old enough to understand more about cancer, more about the organizations we support and why we do it. I gave her the guidance and let her make decisions. She loved being up on the stage and shaving her head for St. Baldrick's. Part of me wonders is it because of me, am I influencing her in some way. Which is silly- OF COURSE I am influencing her. By my actions, my guidance every day I influence her and her siblings. And this is one of those times when she took the reigns and I have to say I'm extremely proud of what she's learned, the awareness she took to school and how honestly happy it made her to be a part of the St. Baldrick's family.

A couple weeks ago they called and talked with us for a blog post. I was tentative but also decided that it helps me immensely to hear positive stories. Lily is a positive story. The 5 year survival for her tumor was poor. Throw Li-Fraumeni in there and well the odds are kinda stacked. BUT we make our odds. By making the best of our time and efforts. I am extremely proud of our family. It's not an easy balance and they all are doing amazing and cancer is just a part of it.

St. Baldrick's Blog- Lily's Story

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)