Today is Elizabeth's 12th birthday.  Mike is graduating high school tonight.  It is what it is, I guess.  We still miss you, Princess.  Every single day.

Raising $ for CHLA's Oncology Department & Training for a Triathlon

Last Monday, we celebrated Elizabeth's 10th birthday (the 4th one since she died). It was a hard day, knowing how excited she would have been to hit double digits and realizing how grown up she would have been by now. She always was more mature than her age (what an old soul!), and I am so curious to see how she would have managed the tween years. Would she be into Twilight? Would she still insist on wearing mis-matched socks? Would she still stack bracelets up her arms? She was always quite the funky fashionista!

We brought beautiful flowers, all pinks, purples, and shades of white (I think she would still be partial to those colors even at 10 years old), and the boys picked out a birthday balloon pick to include. They also got a sparkly glitter heart pick to stick in the ground.

The boys each wanted a latex balloon to send to Elizabeth, so they each picked one out (Danny got purple w/ purple ribbon, Mike got pink w/ pink ribbon, and Matt got purple w/ pink ribbon). Danny and Matt had notes to tie on as well. When we got to the cemetery, we all unloaded from the car with flowers and balloons. Danny somehow got the balloon untied from his wrist and let it go too soon, as we were walking to Elizabeth's grave. But we still had two balloons, so it was okay.

Then, when we were placing the flowers and cleaning things up, Mike was sitting on the grass and his balloon touched the grass... and promptly popped. But we still had one balloon, so it was okay.

We tied both Danny's note and Matt's note to Matt's one remaining balloon. The boys excitedly let go of the balloon and watched as it moved up, then just sideways... sideways and a little up... right into a tall neighboring tree... notes dangling from a very high branch, balloon nestled in between branches and leaves. Three balloons down, none of them reaching Elizabeth. Not that any of them ever actually do reach her, right? But sometimes it is just the thought that they might that is enough to lighten the burden of knowing every second of every day that I am just killing time until we are together again.

On September 12th, 2010, I will be participating in my first triathlon--the Nautica Malibu Sprint distance triathlon. It is a fundraiser for CHLA's oncology department, and I have signed up to fundraise. Any $ amount is greatly appreciated--even a $5 donation instead of picking up a Starbuck's latte makes a difference! Every year thousands and thousands of dollars are raised through this event specifically for Children's Hospital Los Angeles. This is the place that gave Elizabeth 2 more years when UCLA said we were done with treatment. When I was in my 20's, I always swore I would do a triathlon before I was 35 years old. This summer is it! Almost 35, and it is time. I am starting my intense training now so that I don't embarass myself... help out with any donation you can spare.

Here is the link to a page with more information: http://www.nauticamalibutri.com/
Here is the link to my fundraising page (also with information about Elizabeth): http://nauticamalibutriathlon.kintera.org/faf/donorReg/donorPledge.asp?ievent=345244&lis=0&kntae345244=6BC673A9A95F4C83A7ED2D5FE312AD44

Unfair Liver Transplant

Steve Jobs just received a liver transplant, after being diagnosed with (and receiving treatment for) pancreatic cancer in 2004. It is generally considered unethical to treat metastatic cancers with organ transplants because once cancer has metasticized, it can recur in newly transplanted organs--cheating non-cancer patients with better odds of long term survival out of organs. I want to know when that hospital in Tennessee will be receiving their Steve Jobs wing.

We wanted a liver transplant for Elizabeth. I volunteered to be a living donor. They wouldn't do it because once cancer is metastatic (meaning it is no longer confined to the original organ--which it sounds like Jobs' cancer spread to his liver causing his need for a transplant) it will undoubtedly crop back up in another organ. Mr. Jobs somehow was able to get approval for a surgery that we couldn't get approval for--with a much younger, healthier (at the time) patient, and a living donor. We wouldn't have needed to be on a list waiting for someone to die to use donated organs. And every doctor we asked (at both CHLA and UCLA) refused saying it just isn't done. Metastatic cancer patients DO NOT receive organ transplants. It is unethical in the medical community. I guess it is unethical unless you are Steve Jobs. I am furious. I guess money does buy everything. If only I had the money to have bought Elizabeth a liver transplant.

I never liked apple anyway. Macs suck.

Happy Birthday, Princess

Today Elizabeth should be turning 9 years old. We visited the cemetery and brought the requisite flowers and a heart pick and a butterfly pick with ribbons. Danny made a drawing for her on pink construction paper. He picked out a pick balloon to send the letter to her. I'm not sure if it was funny or sad that his letter was too heavy to float away tied to the balloon. It just sank and sat hovering over the ground, bobbing a little up and down. Not flying to heaven like it was supposed to. We ended up tying only a 1/4 of the page to the balloon. Then it rose high in the sky. The rest of Danny's note is folded, wedged between a gladiolus stalk and daisies at Elizabeth's grave. Matt and Mike didn't make notes this year. Perhaps they have realized that those notes don't actually fly to heaven and that Elizabeth doesn't ever get to hold them. Whatever the reason, it is just one more way that things don't get better as time goes on. Danny wants to shop for presents to leave at the cemetery so Elizabeth can get them when she goes there. At 4, he apparently doesn't have a firm grip on what death is, and although we've tried to explain it, there comes a time when there are no more words. Who knows, maybe she does visit the cemetery grounds in her own way--Danny pointed out today that she likes it there because there are a lot of flowers and she told him before that she really likes flowers.

Elizabeth was six when she died. Just three months short of seven. Elizabeth Edwards includes this poem in her book "Resilience." It is written by a man who lost his daughter to leukemia when she was just six. It seems fitting on Elizabeth's 9th birthday.

Death Plus Time
by Phil Lister

how old is she
I don't know what to say
don't know how to add
six years alive and one year dead
six plus one
is usually seven but not now
six maybe
six plus one is six
in a year six plus two will be six
or six plus one is none

Happy Fancy Rainbow Day!!

We miss you so much, Princess!!

Everyday we had with you was a gift. Thank you for leaving us something to celebrate in your honor every year with your holiday, Fancy Rainbow Day!

Remembering Elizabeth

Today is the 2nd anniversary of Elizabeth's death. I wish I could say it gets easier. It doesn't.

While we were on our way to pick up Matt from his school early to go to the cemetery, we saw a car with a license plate frame that says "Enjoy this wonderful day, courtesy of God" and I thought how very ironic. Today is far from wonderful, and I still wonder every day why God let Elizabeth die, in spite of all of the prayers.

Take a few moments to visit and remember Elizabeth.

http://www.mem.com/Story.aspx?ID=1731653

There is a movie that you can watch (more of a slide show) that highlights Elizabeth's bright spots. I still talk to her in my head (out loud sometimes, but far less frequently). Sometimes it seems like she is still so very close. Other times the space between us seems infinite. Those are the dark times. But we put one foot in front of the other (because, really, what choice do we have?) and move through the days. She is still so very missed. And she is still so very loved.

Butterflies visit me almost every day. I know it is Elizabeth's way of saying hi.

Thank you for still visiting and thinking of Princess Elizabeth. Post a message and let me know how Elizabeth impacted you. I love to think that her presence is still felt, even though she isn't here anymore.

Hanging on...

The holidays are difficult--but we are doing our best to get through it all. It's been a really long and tough 9 months without Elizabeth. I just haven't felt like posting here because, really, what's the point? The whole reason we even started the blog was to keep friends and family updated about Elizabeth... and well... you know how that's going by now.

I do want to say thank you again to everyone who contributed to Elizabeth's memorial fund. We have not spent any of the money yet since I am still working on a project in Elizabeth's name, and I think there is even a batch of checks we never deposited--just more stuff that reminds us Elizabeth is dead and it is just so frustrating and sad. I have been in contact with the hospice service that took care of us, and we plan to use the money on some project with them.

Anyone who needs an end-of-year tax write off should look at donating to some of our favorite groups that really do help the cancer kids:

• Children's Hospital Los Angeles
• Michael Hoefflin Foundation
• Camp Ronald McDonald for Good Times
• Trinity Kids Care Hospice Los Angeles