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

Go mom go!

.

Well, Mike is in Tennessee having a great time and I'm trying to get through the last two weeks of teacher training before I start teaching on August 20. It is hard to believe that the summer is already coming to an end.

About a week ago I was at a high school, observing a teacher, getting ready to do a one day lesson. The teacher decided that I should take his 9th grade Health and Wellness class for a day and then proceeds to check what lesson material will need to be covered that day--turns out the lesson was Grief and it's 5 stages... so I just chuckled to myself and thought it was just another thing to roll with. I prepared the PowerPoint presentation as I was instructed, and went on to lead group discussion with the 40 14-year olds about grief the following day. As we were concluding our discussion and reviewing the key points we had to cover (the 5 stages of grief, losing a loved one, coping mechanisms, funerals, wakes, viewings, cremation, etc), the teacher brings up the topic of cremation jewelry. The kids were curious, and he brought up a website on the TV in the front of the room that sells diamonds made from the ashes of someone who has been cremated. Now really I am totally okay with discussing these kinds of things--and I was completely prepared to talk about grief and losing someone without specifically saying that I am going through it myself. But the website had a picture of a diamond ring and right next to it a school picture of a little girl, probably about 7 years old, bald, and thin... obviously (to me) suffering from cancer. The diamond in the ring was made from her ashes. I was floored--because all I could see was Elizabeth in that little girl's picture, and I just wasn't expecting to be hit with something like that. I still don't know why the sequence of events happened the way it did, but I feel like someone is trying to tell me something! Needless to say, just when I think I'm okay and doing well, something hits me out of the blue like that. I know that these kind of things will continue to happen, but I just wish it wouldn't be so sudden and unexpected. It seems that every time I let my guard down, I get hit.

Of course, I am still missing Elizabeth all the time. It's hard to put on nailpolish without crying because I miss doing her nails for her. I can't shop in toy aisles any more lately because there are new Barbies out promoting the newest Barbie Princess movie coming out in the fall--and it breaks my heart that this is the first one that Elizabeth won't get to see. Not everything gets to me, but I see that there are a few specific things that really do (and it seems to vary from month to month what reopens the wounds worse). This whole new way of life just really sucks.

That said, I'm really excited about starting to teach. I know that nothing can ever take away the pain of losing Elizabeth and that there is nothing I can do to replace how important taking care of her was, but I also know that I need to get out and do something new and challenging to remember that I am still alive and still have to keep moving. The training is getting a little tedious, but having some good people to endure the boredom with helps immensely. Thankfully, full time training ends soon. Of course, then there are 3 more years of weekly night classes to get through...

Today I ran into one of Elizabeth's classmates as I was leaving my doctor's office (TB test for the school district--nothing major). It was so incredible to see him and it made me so happy when he hugged me! Elizabeth loved those kids so much, and this little guy was particularly special. I didn't even realize how much I've been missing them! It was such a nice bonus for the day.

I'm still working up to ordering Elizabeth's marker. This month (August 19th) will mark 6 months since she died. It really is time for me to do this, and I'm starting to get really annoyed with myself that it hasn't been done sooner. I just don't know that I can yet. It seems so silly that I am having such a hard time with it--I mean, she is already dead, and getting a marker isn't going to make it any worse! It's already as bad as it gets! My own hang-up... I just wish I understood it better so I could make some progress with it!