In October 2008, 3 year old Lily was diagnosed with 2 types of Cancer. In 2012 her mom was diagnosed with 2 types of cancer. Here are the current updates on Lily's family, their tumors, treatment and living with Li Fraumeni Syndrome.
Sunday, January 25, 2009
Wishes, Hopes, and Dreams
Wishes are an interesting concept in the eyes of a 3 year old. Generally if you ask her what she wishes- she starts reciting "star light, star bright". Today we had a meeting with two very nice ladies from the Make a Wish Foundation. Lily has been asked to make a wish. Make a Wish grants wishes to kids who have life threatening illnesses. It was a big day in our house- Lily got dressed. It took a lot out of her.
A few weeks ago, when Ms. Julie asked Phillip who was having the hardest time with Lily's illness, he snorted and said "LILY". So she asked him, besides Lily, who was having the toughest time- "Still Lily" he replied. That wasn't one of our better days. She finally asked him what he missed the most. He said " getting to come home after school". Phil and I had a talk after that and decided we would do a family trip when we could- to Disney, to celebrate getting through this. The kids loved the idea and Phillip and Kiera take turns telling Bella and Lily the bits and pieces they remember. At one point or another dinner talk returns to "when we go to Disney- can I ride this ride?" Lily has learned that many of her favorite characters LIVE at Disney World. So naturally she too is starting to get excited. We point out that Spiderman and Dora and Shrek live nearby too at Universal. I start to get sucked into the dreaming. If we are gonna fly ALL that way- Really you need at least a week to do Disney with wiggle room for naps and such. A couple more days for Universal....Phil reigns me in. 6 people, 6 airplane tickets, that many nights in hotels - he shakes his head. And I'm usually the pragmatic one when it comes to budgeting...and then we got a call.
One of the Wish volunteers chats with Lily while the other has me sign paperwork. The ball is rolling. It's a strange feeling. Many associate Make a Wish with last, final wishes. She assures me that there is nothing they like to see more than kids growing up to lead healthy, happy lives. After they made the appointment to come see us, I was telling Phil about it. He tentatively asked- " so um, what if she, um doesn't , well you know"- well Wish policy states that upon the unlikely event that the wish grantee survives- all expenses must be reimbursed in full. Seriously- they throw a party and hope that the wish played a part in the recuperation. She tells me, many times the wishes are merely opportunities for families who have been bogged down by strict treatment regimens(what's THAT like?) to reconnect and relax. Sign me up. Therapeutic. Part of me wonders if there isn't someone out there who needs it more than us. It's so hard to accept unconditional gifts as just that- unconditional. It helps to know that a lot of the donations the Foundation are from corporations, but from personal experience I know that many donations are just that- personal. At the same time, I know that taking a family of 6 to Disney World isn't in our budget for the next 5 years-at least. I'm not sure what Lily wished for exactly. I heard bits and pieces about hugging Pooh and meeting Jasmine and Dora. We have time to plan since really we probably won't be done with treatment until after summer. I am just floored by the generosity of it all. And hopeful that this will be the perfect incentive to get us all through the next tough months.
A trip to Disney is only a small token of what your sweet family deserves!
ReplyDeleteHang in there!! You all are doing the best that you can for Lily at this moment. Thanks for all your sharing!!
Our wishes, hopes and dreams are for health and normalcy to return to your home, and a joyous, carefree vacation for all of you, too. Lord, hear our prayer. Love, Mom
ReplyDeleteDisney World rocks and so does the Make a Wish Foundation! We are surprising our kiddos with a trip in Feb. I am glad you have time to plan. That way you can continue having those fun dinner conversations about "when we go..." When you return, it will change to "remember when we were at Disney and..." A bright spot for your family when you so need it! Love you guys! Heidi
ReplyDeleteI love this idea (and we would love to see you if you were out West while we are still here). Your updates are so powerful and important -- you are doing amazing with all that is on your plate. A big hug for Lily and all of you. We miss you -- The Kents
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