Saturday, October 2, 2010

Giving Kids the World

It's been a year since we had our Make a Wish trip to Disney. We spent an amazing week at a fun filled village called Give Kids the World. The village was the life long project of Henri Landwirth, a hotelier who heard the story of a young girl named Amy who was dying of Leukemia. Her dying wish was to go to Disney World, yet there were problems lining up accomodations and she passed away before an opening came up. Henri decided he would ensure that this would not happen again, that no other child's dying wish would be left unfulfilled. After all, Henri himself had lost his own childhood to the concentration camps. It began as a building and now is a Village of quaint fairytale houses, A gingerbread house, a theatre, an arcade and my kids' favorite- the carousel next to the Castle of Wishes.

It has been 2 years since we started this journey.  It's been almost 2 years exactly when I got the news that changed our lives forever. I remember when Lily was nominated for a Make A Wish trip. I spent an afternoon in her hospital room hiding tears because it's never a good sign when your child is granted a dying wish. The Make A Wish people were kind enough to rearrange my thinking- they are no longer considered dying wishes- they are incentives, silver linings for amazing lil people who have to face something average kids don't.  I remember having a specific conversation with Lily's doctor and then our good friend(and child life specialist) about timing the trip. I didn't want to take her when she was sick. Could we wait until she finished treatment and was feeling better. They both were reeling from 2 recent deaths- one child passed before she was well enough to have her wish, they other's wish completed only weeks before she passed. Both said the same thing, Don't wait. I had read up on the very few cases like Lily's, the signs weren't good. Usually there is recurrence between 2-5 years. We're there. This week we have her scans. I cross my fingers and hope. Phil is again gone, a bad omen according to our track record. But I take it a day at a time and tentatively make plans. Plans for conferences, plans for holidays, and each time I write something on the calendar I pray it's not something I'm going to have to rearrange.

Lily's surgeon again invited me to speak with some new residents a couple weeks ago. I hadn't made the early morning commute to the hospital in many months, and I was grateful. Grateful for where we are now and the good care she has. I am grateful for the family and friends who helped us through one of the worst times a parent can have and grateful for the organizations who helped us navigate the tricky waters of the disease. As we wrapped up, Lily's surgeon and I chatted about her and how she is doing. I have to say I dread each scan. She mentioned she is so happy to hear that Lily is good, that she is surprised Lily is doing so well despite such an advanced stage tumor. I know what she means, but it still scares me to hear. Because in my world- science speaks. Scientifically speaking according to the statistics- Lily might not be here in 5 years. But she could be in the  small % that is. And that is what we are working towards. So every few months I encourage the kids to give back. We had our lemonade stand to support cancer research, Last week we volunteered at a Make A Wish fundraiser at Cold Stone and just this week I signed Lily up to be a virtual runner in A 5K Fun Run at Give Kids the World. I have also encouraged my husband to drive the 8 hours over there and run his hiney off- but the Air Force might have other plans so we'll just wait and see.  Phillip and Kiera have agreed to give their allowance for the month of October(which is pretty convenient for me- I generally forget to give it to them.)

This week we learned that one of Phil's good friend's from the Academy is battling cancer and cancer has returned to haunt a sweet 16 year old who has been battling it for over half her life. Once touched by cancer, it is part of you. It is a shadow that threatens to overtake you. You turn towards the sun and sometimes the only light left is the one at the end of tunnel. It taught me to cherish the little things, fight the battles that are important and look at the big picture. The big picture is that cancer is something our family is going to have to deal with. The battles that are important are the ones that make a difference if not for us, someone who walks the same road after us. And the little things are the smiles, the laughs and the crazy memories that crowd our minds and hearts.

We were excited to get Lily's G-tube out right before we went on her wish trip. She spent months referring to the strange sensations in her belly as "the frog". On our last night before we left Give Kids the world- a shiny green frog hopped up on the wall- scaring the bejeezus out of Bella. Lily started Laughing hysterically and suddenly declared it was the frog from her belly. We all agreed it couldn't have picked a better place to live.


  1. I would just like to offer your beautiful Lily lots of prayers and kudos for her courage and strength (and yours). My daughter, 5, has been diagnosed with Plexiform Fibrohistiocytic Tumor and we are only just beginning our difficult journey. Best wishes to you and your family.

  2. ...I too am overwhelmed right now with numerous tests, appointments, questions from friends/family. We still aren't sure if it has metastasized. I have some questions for you if u have the time or energy. It would be so helpful to us if u could. My email address is Thank you.


Lily Kay Monkey

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