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

Lily's Second Shave for the Brave- St. Baldrick's Event April 24

Lily's 1st St. Baldrick's 2014

Remember 2 years ago when Lily wanted to shave her head? It was an amazing experience for her  and in the process raised almost $5000 for childhood cancer research through St. Baldrick's. I had recently lost my hair due to treatment and many of the emotions were overwhelming.  She said at the time she was going to wait a year and then do it again. Not every year, maybe every other year. I nodded and said Ok because we were very deep in the uncertainty of my cancer treatment. Secretly I just hoped to be around in 2 years.

Well here we are. And not only am I here- Lily is no longer the only one in the family with fabulous curls. She is very proud to tell people that I have HER curls. In January she started reminding me she was going to shave her head.  Phil and I had just made plans to be off island and wouldn't be here for the event. Lily says- it's OK mom- I want to do this. You were there last time. I have so many mixed feelings, but the dominant one is pride. And to see her take the lead and do this for her is beautiful. We started talking about a fundraising plan. Part of me wanted to see if I made it more her responsibility, maybe the novelty would wear off. Silly Jen. I'll say one thing- that kid is mine. She sets her mind on something and good luck changing it.

This is what I say to cancer. 

In a world where I spend an inordinate amount of time trying to talk my children through situations where adults are behaving badly, children behaving badly and over all nonsense- there is this beacon of hope. As the dishes sit unattended in the sink, Phillip is composing songs and teaching himself to play the guitar. Kiera is supporting classmates who are having a tough time adjusting and fitting in while dealing with bullying and poor leadership. Bella soaks everything up like a sponge and then wrings it out and does shit her own way anyhow. And Lily, she feels intensely and struggles to fit in because in her almost 11 years, she's been through a lot. I look how well they are dealing with the past 3 years of my being sick and in constant treatment and although it hasn't been easy, they are remarkable. We are not perfect, but I try very hard to give them tools for happiness and to try and be the best they can be. So when she says she wants to shave off her beautiful curls to help people, we make a plan.

Lily's St. Baldrick's Page

I told her I would post on Facebook for her, but that I wanted her to write the info for her St. Baldrick's page and write the email thank you's. We again were flabbergasted that within a couple of weeks she had already made it half way to her goal of $5000. We know so many generous, caring people. At times I feel like all we do is ask for our causes, so Lily and I had conversations about other ways she could raise money outside of just asking friends.  She decided on Kool-ade stands and making invitations for her friends at school to attend the event. We talked about awareness and how although action is really important, so many people are not aware of St. Baldrick's and what it is about. Then it occurred to me- the 6th graders do IB exhibition projects. It's a self-directed inquiry that is largely based in a community service project. The kids identify a problem, research it, and work towards a solution. I started asking around at school if as a 5th grader, Lily might be able to do an exhibition project about St. Baldrick's.  Lily finally had to be the one to make a formal request. We sat down and I let her write her request, guiding only to help her clarity and format. We talked about which IB attitudes she was using, she even drew a mock up of her posterboard. We came up with a shamrock and gold cancer awareness ribbon.

Dealing with administrative red tape on the school level is not new for us. I try to be as active in the kids' education as possible. It was much easier years ago when I was not employed as a full time cancer fighter. Many parents work very hard during school hours and cannot actively participate, I always felt like it was a privilege to be present and involved at school. We have been lucky to have some sincerely supportive teachers in our time. Many I now call friends. It is a really nice side effect of helping at school, you get to spend time with quality educators who are very passionate, because otherwise I have no idea how they deal with all the added nonsense.

I also know it is not a common occurrence for a lower grade child to ask to do an extra project, but that really is what the exhibition and International Baccalaureate attitudes and learner profiles are all about. Unfortunately I fully expected for Lily to be told no, just not for the reasons that were given. I expected her to be told that she missed the Exhibition deadline and that it is a process therefore it would be too late for her to set up a presentation at the 6th grade Exhibition night. Personally- I feel it's like a curriculum fair and her presence would neither help nor detract from the other students' efforts- it is more of a community venue for Lily to independently discuss her experience with childhood cancer, the lack of funding and a present a call to action. It wouldn't undermine the efforts of the 6th graders and as she was not being graded or given any credit for the project, what is the harm? She would not be asking for donations. That is not what her presentation would be about. It is about getting others involved and letting them know about a local event.

The reason given was that the DOE guidelines would not allow it. Also that if Lily was allowed to do it, they would have to allow other students to do it as well. It was made very clear they could not endorse Lily or her cause in any way, but she would be allowed to speak about it during non instructional time. In a week where there was a gun threat at my teen's high school and a subsequent bomb threat today, I think our efforts would be better spent celebrating and highlighting community service efforts of children. To live in a community where the kids clamor to their teachers requesting special permission to make the world a better place and solve problems with big impacts, that's the community I am trying to foster.

Lily will be 11 on Monday March 14th. Monday is also the day of 6th grade exhibition. She wanted to spend her birthday honoring the cause she has chosen and spreading awareness. She is not asking for presents or a party this year which is ultimately ironic. Instead she is asking for donations to St. Baldrick's, so other kids can be as lucky as her.  None of us are guaranteed birthdays, yet here she when so many forces have stacked against her.  I cringe as adults celebrate entire birth months with extravagance and here we are- so grateful for each bonus birthday we are given and her willingness to use it to help others makes me proud beyond measure. She is allowed to present information to her grade level and we are trying to coordinate that with teachers as it has to be on non instructional time. She is also allowed to hand out ribbons before they leave for break.

Please consider sharing about the event, Lily's St. Baldrick's page or just commenting below with a Happy Birthday message for Lily, it would mean a lot to me. If you feel inspired to donate, that is also really appreciated. Lily's St. Baldrick's Page Thank you for taking time to read this.