Elizabeth's Story

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

2010-06-01T10:46:00.000-07:00

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

2009-06-25T19:56:00.000-07:00

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

2009-05-24T15:45:00.000-07:00

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

2009-03-25T18:19:00.000-07:00

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

2009-02-19T14:46:00.000-08:00

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...

2007-12-03T14:50:00.000-08:00

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:

Go mom go!

2007-09-03T09:15:00.001-07:00

2007-08-08T19:03:00.000-07:00

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!

Elizabeth's brick at Disneyland.

2007-08-05T11:40:00.001-07:00

This is Elizabeth's brick at Disneyland. It is on the side closest to downtown disney and a little closer to Disneyland. Thank you uncle Dave, Aunt Tammie, Patricia, and Sandra!

2007-07-29T08:46:00.000-07:00

Mike got home from Camp Ronald McDonald for Good Times yesterday afternoon. He was there for a week, and had a great time (as always). It was difficult at times, between all the memories of being at Family Camp there with Elizabeth, and the inevitable questions that come with being at a camp for cancer fighters and their siblings ("Are you a survivor or a sibling?" "Oh, how old is your sister?" "How is she now?"). As an added layer, there was a sweet little 9 year old girl there, still on treatment, that reminded Mike of Elizabeth. At one point, he even showed her the picture of Elizabeth he carried in his pocket while he was there. Ever the sensitive one, he never even hinted that Elizabeth died, for fear that he would scare her or make her feel uncomfortable. He is so concientious about how other people will feel about his sister being dead, that sometimes I wonder if he worries half as much about his own feelings. Anyway, it is really good to have him home. I missed him.

Mike will be leaving (yet again!) to go to Tennessee on Wednesday night. He will be visiting his grandparents, cousins, aunt, and uncle and is staying for what seems like an eternity--just over three weeks. Mike will be flying alone (he is almost 13) with help from flight attendants to switch planes at a layover. I am going to be a nervous wreck until I know he is off the plane and safe with Grandpa Terry!!

The other boys are doing well--getting bigger by the day. Danny is getting really tall, but still not talking much. It is time to get a speech specialist involved. We should be able to get some help through the school district in the fall. We had been really concerned a few months ago that there was something more going on (hearing issues or autism), but Danny does try to communicate (although it is using mainly sounds and not discernable words) and he hears and understands everything we tell him. Hopefully with a little help from a speech therapist we can get him on track. He is now officially 2 1/2 years old, and needs to be able to talk.

Matt is jealous that his big brother both got to go to Camp and now is going to Tennessee. Matt will be six in September, so he really is still too young, but that doesn't change how he feels about it. And I can't say I blame him, either... He is starting to take on a lot of the characteristics of the typical middle child. We'll have to find something fun for him to help occupy the rest of the summer.

I've been pretty weepy this past week. Everything reminds me of Elizabeth, and of how much I miss her. She really was incredible--so much older than her years, so much wiser than I ever will be. I miss her silly made up jokes and the way she would write "I love you Mom" on all of her pictures (even the ones she gave to other people). I miss her little girly self, asking for glittery nail polish on her nails and sparkley lip gloss. We had a lot of fun girly time together and taking her to Club Libby Lu for makeovers every now and then was so much fun for both of us. She is simply irreplaceable and I guess I am starting to realize that nothing is going to make this empty feeling any better. It is always going to be there. I guess it is just how we learn to live with it that makes this experience different for every family dealing with losing a child. Believe me, there are still plenty of days that I am really angry, too. We're okay, but we'd be better if Elizabeth were still alive.

I'll start teaching on August 20, but I'm in training still full time until then. There is a lot of prep work involved and I keep hearing that the first year of teaching is "the hardest thing you'll ever do"--while I can dispute that it is the hardest thing I'll ever do (I think holding Elizabeth in my arms as she died tops anything else by miles), I'm sure it won't be a cake-walk. So even when I'm home, I'm doing a lot of prep-work. I have the unique situation of taking over classes 6 weeks into the school year, so that will be its own challenge. Not that I'm complaining--"challenge" is such a relative term and honestly I am rather sure that I can face anything head on, with the exception of anything bad happening to the boys. That said, if anyone out there has found great science resources (books, websites), please email me with the info. I'm trying to build my library of ideas and I'm taking suggestions...

Enjoy the rest of the summer! Elizabeth loved the beach in summertime. I'm sad that we aren't sharing our love for everything oceanic together, but I hope that in time her brothers will happily remember beach times with her when we go and that it won't be as sad. Hug your kids and remember to tell them how much you love them. We had the gift of knowing we were losing Elizabeth and we got to tell her what we wanted--not everyone has that chance.

News...

2007-07-18T19:25:00.000-07:00

First off, I need to apologize for taking so long to update here. It has been some time, but I do truly appreciate that there are still so many people checking in on us and remembering Elizabeth. Thank you for the encouraging messages. Really--every hit that this web page still gets brings me so much pride, knowing that there are still so many people who take the time to remember Elizabeth and how her life has changed theirs. It is truly humbling.

The last two months have been very very full, in spite of being so empty. Any of the fellow parents out there who have lost their sick child know exactly what I mean by that statement. All the medical requirements are gone, time is freed up, and there are no more new memories being created with Elizabeth. As I had briefly mentioned back in May, I was thinking about teaching. I took my CSETs in May (and passed all 3--yay!), my CBEST in June (and again passed--woo hoo!), and scrambled to get my transcripts and paper work in order to apply for the LAUSD district intern program. I was accepted (good thing after all that $$ paying off Pepperdine to get my transcript and taking tests!) and started my intern training the second week of July. I will be teaching chemistry and integrated science at Marshall High School as soon as I finish the training in August.

As fate would have it, Marshall High is about 3 minutes away from Children's Hospital Los Angeles. I even take the same freeway exit and head up the road just as if I was on my way to CHLA. When I visited the school to see if I would accept the job offer, it just felt right. The campus is actually a national historic landmark and is a beautiful brick building with sculpted concrete. My classroom is huge, complete with desk area AND lab area, and the stockrooms are well supplied. The science department seems to work pretty collaboratively, and I am really happy with my decision to accept their offer. And the fact that it is SOOOOO close to the hospital will hopefully allow me to find some time to volunteer there after work, even if it is just once in a while.

Right now most of my time is consumed with training. I drive to and from the USC campus every day, and we are in class 8am to 5pm. With drive time included, it is pretty much a 12 hour day for me. UGH! Michael is staying home with the boys, making the transition to stay-at-home Dad (without Mom always around) pretty smoothly. I must admit, it does feel pretty good when all 3 of the boys run up and hug me, yelling "Mom's home!" when I arrive. There are a lot of really good people training to be teachers with me and I'm getting excited to get to my classes on August 20 (I'm teaching on Track C of a 3 track system, which means I have all of November and December then May and June off). An off track chemistry teacher has already started teaching my classes until I'm done with training, so I know that my students are in really good hands until I get them myself.

I'm training to run in the Disneyland Half Marathon--yes, that is 13.1 miles--on Labor Day. I'm on track with my training, although now that I am in teacher training every waking moment during the week, it has been tough to get in as much time running as I had been before the intern program started. I do like having a training goal, though. Mikey is going to run the 5K the day before I do the half-marathon, and Matt and Danny get to do mini age-appropriate races as well.

Elizabeth's birthday was a wonderful celebration (May 24). We spent the afternoon with her class and had cake and a balloon release. Our dear friend Pun (Mr. Magic Fun Extraordinaire!!) came to the class and made Elizabeth's friends laugh and smile. It was really just the perfect birthday present! I know Elizabeth must have been participating in her little part of Heaven. I still have not ordered the memorial stone. It is actually starting to bother me that it isn't there, so that will have to be the next big hurdle in the next month. I just hate having this last thing hanging over me, and yet it is one last thing that I am probably still holding onto because I'm not ready to be done with it. Oh, the constant contradictions of feelings! I guess I'm getting used to the new normal. At least it's not knocking me over the head unexpectedly quite as often, anyway.

As far as news about my dad... he was released on May 31 and is still getting outpatient treatment for a heart condition. He is on disability and waiting for his consultation at UCLA in another month or two. Hopefully they can find the problem (he will have an electrophysiological test) and correct it without too much complication. But he is on the mend, and I appreciate all the thought and concern we received. Thank you.

Elizabeth is still very much alive in our everyday lives. It is awful to not be able to touch her and hold her, but she is still all around us. Pictures of her, her endless collection of drawings and notes to us, her toys, and the Build-a-Bears with her voice that she made for her brothers, keep her very present to us. I can remember happy times with her without crying at times, and I find myself wanting to talk about her all the time. How honored am I to be her mom! The boys are making new memories together, but always talk about her and remember the things they did with her and what she liked and who she really was. It still sucks, but we're okay.

I think that covers most of the "catch-up." I have more pictures I will gladly post once my desktop computer is back up and running. The boys are getting bigger and look like little men with their new haircuts (well, not Mikey--he's not trimming his long locks yet). I still love all of you ChemoAngels (if you don't know who they are, visit http://www.chemoangels.net and consider becoming an angel yourself) and everyone at Canterbury and CHLA and Love on 4 Paws and MHF and Camp Ronald McDonald for Good Times and Make A Wish and Girl Scout troop 144 and Centerstage Dance LA and everyone else I'm accidentally leaving off the list... I have every confidence that Elizabeth really did enjoy each day to its fullest (as that was just her way) with the help of everyone who reached out to us during the past three years.

2007-05-21T11:40:00.000-07:00

No real news on my dad... he's still inpatient (as anybody who has experienced the glory of hospitalization knows, Friday nights are perhaps the worst times to be admitted--nobody knows anything until late Monday once the facility is up and running again during the week) and we still don't have a diagnosis. They have run every conceivable blood panel, every tumor marker, even ultrasounds and a CT and chest x-ray, and I almost forgot to mention the EKG. He is off antibiotics now, but is being treated for his presenting symptoms just not the underlying cause since we still don't know what that is. Ugh, the frustration all comes back and slaps me in the face. In some ways it feels like reliving part of the nightmare, just in a different way. It all just reminds me of all the crap with Elizabeth and how hard some of those days were--yet I'd do anything just to have even one of the worst days back again. I just miss her so much. She would have turned seven on Thursday. We should be planning her Disney Cruise or a Disneyworld trip, not trying to finalize her memorial headstone marker. I think I'm finally starting to feel some anger about how much she went through and how crappy and unfair it all is. It just sucks because there is no one to be angry at, nothing to really focus the anger at or blame the circumstances on. So many feelings and no real purpose or direction for them. I'm okay, I'm not about to blow--I don't want anyone reading this to worry about me, I'm coping with it and dealing with it appropriately. I just can understand now how readily people who have experienced tragedy (in any sort) get so angry and want to start lawsuits or try to hold other people or entities responsible--it gives their anger direction. Sometimes things happen that we (nor anyone else) have any control over and it's not fair and it makes us angry and there is still noone responsible for it and nobody to hold accountable. And we are left feeling hurt, angry, and utterly helpless because we can't change it. Pretty similar to how we feel once our children are diagnosed with cancer--the tragedy which is the precursor to bigger tragedy.

Please say an extra prayer for two of Elizabeth's cancer fighting friends. One is in remission and off treatment, but she has been in my heart for the past couple of days and I really really feel like she could use some extra prayers. The other is still in treatment but doing well, but he is far from done and he has been on my heart, too.

Thanks for checking in. Oh, and if anyone has any corporate or personal connections with people high up in the Build A Bear Workshop company, please contact me. I have a potential project I think Elizabeth's Memorial Fund could develop in conjunction with them.

Take care.

Prayer Request

2007-05-19T11:18:00.000-07:00

As if we haven't already had our fair share of hospitals... my dad was rushed to emergency last night. The docs have narrowed it down to a major infection of some sort (still waiting for cultures), but have him on ceftriaxone in the meantime. Things got pretty hairy in emergency, but it appears that he is stable now (was doing better when I left at 3am and sounded okay this morning when I called). He isn't in ICU, but he is on the medically monitored critical floor (which is just one step up from ICU), so it is pretty serious. Please keep him in your prayers. We just lost Elizabeth and I'm just not ready to deal with anymore death.

I am still taking my CSET today (yikes--just one more hour before I need to leave). My dad actually seemed proud when I told him about it yesterday, so I'm not missing that test on his behalf. For five hours I'll just have to concentrate on science and put the rest out of my mind... so much easier said than done! Please pray that they can figure out whatever the problem is, and that it is fixable. Thanks.

It's May...

2007-05-17T15:30:00.000-07:00

and that means Elizabeth's 7th birthday is coming up. This is not easy. Elizabeth wanted a 10-day Disney cruise for her 7th birthday... I sure hope God is giving her something way better up there, because she sure deserves it!

Matt wanted to have a big birthday party for Elizabeth here at the house, complete with bouncer and cake and a huge balloon release. I considered it for awhile, and thought that we could even have a toy drive for Children's Hospital in Elizabeth's honor to celebrate her birthday. I think it's just too much for us right now, though. What an emotional rollercoaster... fine one day, a wreck the next--so hard to predict. We just miss her so much.

Elizabeth's classmates have already decided that they want to have a birthday party for her in class, so I think I'd like to be there for that. Maybe even bring balloons for them to attach notes for Elizabeth to and release. I think I'd like to do a toy drive, too, sometime later down the road. We still have most of Elizabeth's Christmas presents still packaged (unwrapped, just never opened up to play with--she was just too tired to play any more--I know she plays a lot now!) waiting to be donated to CHLA. Elizabeth likes that idea and wouldn't have it any other way.

After a lot of thought and discussion, we've decided for me to pursue teaching through LAUSD. I just registered last LAST minute for the CSET exam that I will be taking this Saturday. It is the 19th, which marks 3 months since Elizabeth died. I don't miss her any less, but I am happy knowing that she is happy. I feel her so many times around me. Now when I cry, it's less about being sad about everything she endured the last few months or about everything she never got to do. It's more about just missing her and wishing I could watch her grow up. She was my only daughter, my special little girl. I know she misses us, too, but every time I get really really sad I can almost hear her telling me what I told her as she died in my arms--I love you and we'll all be together again really soon. Oh, how I miss her!

So the test is Saturday--all five hours of it. I'm taking two general science tests covering everything from astronomy to geology to physics to optics to magnetism to enviromental science to biology to cells, and more... and one subject specific test for Chemistry. It will be a joy--to have it done with. As long as I pass, I have a decent shot at getting into the district's credential program--assuming I can get Pepperdine to release my degree... ah, but that's another story which involves me giving them lots of money to finally pay off my tuition. Just more hurdles... feels like they just keep coming. Anyway, I hope this is the right path. The health insurance alone is worth a ton. Please pray for wisdom in this area. We are so at a crossroads.

Please keep all the kids still fighting for their lives in your prayers. I am so thankful for everyone who helped us keep Elizabeth alive, medically, emotionally, and spiritually. And we are thankful for everyone who still checks in on us and the boys. I want to do something that helps pay back in some way... I'm still so so so thankful to Trinity Kids LA hospice. They helped us cope during the worst times we ever faced. I feel like they are a huge part of our family, and yet we only knew them in the last weeks. Big hugs to all of you who still love Elizabeth and pray for the rest of the cancer kids!

Thyroid biopsy results...

2007-04-24T20:15:00.000-07:00

...are in, and I have a benign condition that will be treated with synthroid (synthetic thyroid hormone). We are now moving from a state of unknown and possibly facing more cancer in our family, to a state of moving on with living. Every day without Elizabeth here brings us a little closer to when we'll all be reunited in Heaven, so when I look at it like that things are more tolerable. We are finding ways to pick ourselves off the floor and have family fun time together, always including Elizabeth in our everyday conversations as we remember what she liked and what she did. It is so nice to finally think more about the good times and remember Princess Elizabeth rather than just being able to remember the deterioration and the terribly difficult and painful last two months--of course those two months were the most precious of all because we had to find ways of saying good-bye and giving Elizabeth a lifetime of love, but they were just so painful. I like being at Disneyland now and seeing other little girls and remembering Elizabeth being playful and princess-y, skipping down Main Street. It makes me happy more than melancholy, and I can smile more than tear-up for now.

I'm still focusing on finding work, but I'm finding that everything that I really really want to do (like patient advocate work, case managing, or even staff education training in patient relations, stuff like that) requires an RN... my little chemistry degree doesn't qualify me to take the RN certification test, but I have been investigating different accelerated nursing AA programs that would allow me to test--just to have the information. Looks like my dream job will have to wait and I will probably have to take something else to support us in the meantime...

Now that we have no immediate threat of cancer, we will be trying to decide what we can do in Elizabeth's name with the donations her fund received. Thank you everybody.

Thyroid biopsied

2007-04-18T19:50:00.000-07:00

This morning I had the pleasant experience of needles shoved into my thyroid so cell samples could be collected. I use the term "pleasant" very loosely, though I'm not one to complain about much of anything after witnessing everything Elizabeth endured so bravely. The pathologist seemed rather confident that there were enough cells gathered to do a full and complete analysis. The results should be available to my endocrinologist by Friday or Monday, and I imagine I will hear from her office immediately if there is good news. If I haven't heard anything by Monday, I'll call myself to ask if biopsy results are in. Odds are very much in my favor that I have an enlarged and nodular thyroid due to hypothyroidism and NOT cancer, but with Elizabeth having had an endocrine cancer we aren't leaving anything to chance. Thyroid cancer is VERY treatable -- virtually the complete opposite of pancreatic cancer -- so even if a malignancy is found, it is very minor in the grand scheme of life. Certainly nothing can compare to losing a child, so that's that.

After a very very good few days after the breast surgery, seeing Elizabeth while I was under and finally feeling like she really is happy and okay, and getting the good breast biopsy news, I had a very very bad few days. It just keeps coming back around and slapping me in the face. I just miss her so very much. Our home is still so full with the three boys, yet it is so so empty without her. Her smile and sweet giggle just lit our lives so and I'm still having a very hard time trying to find a way to go on with living without her. I think we all are. It is just so sad and wrong and it is never going to be okay that she is gone. That said, we can't just throw ourselves into despair and waste the time we have left to be here before we can be with her again. I'm looking for work, applying for jobs, and sending out resumes. Of course, everywhere I'm looking has something to do with either helping cancer patients or working with parents or at the hospital. I just feel such a need to use what we learned to reach out and help where it's needed.

Other than that, things are still pretty much dragging on. Mike has drama performances coming up for school early May, so he's at school late almost everyday for rehearsal. It has been good for him to have that outlet. Matt and I are still visiting the cemetery a couple times a week. Our roses are starting to bloom like crazy, so we are able to take some of the flowers that Elizabeth so appreciated at home to her grave. I thought that I liked to go because maybe I felt closer to her there, but I don't really feel any closer to her at the cemetery than home. I think I like going because every time it reminds me that we aren't the only people who have lost someone. There is a weird kind of comfort I feel being there -- that death really is such an integral part of living -- and that this life really is just a bump on the road in the whole grand scheme of things. Danny has started sleeping in Elizabeth's bed every now and then. A few nights ago I had to keep putting him back in his bed, he just kept coming out. He finally stopped coming out, so I assumed he must have settled in bed. When I went to get in my bed, I found him in Elizabeth's bed sleeping. He had brought in his pillow and his Build-A-Bear monkey Elizabeth made him, and was snuggled up in her bed. He's done that once again since the first time. I guess he misses her and wants to be close to her, too.

Michael and I still need to order the memorial stone. It's just so permanent and I want it to be just right. Hopefully we can take care of that this week some time. I want it installed before her birthday.

I'm off to the store to get ice cream. My throat is still bothering me from the biopsy and I've had a craving for rainbow sherbert ever since seeing a room painted with orange and lime green on the Home and Garden channel today. We have a friend (a cancer survivor) who also was having a thyroid biopsy this morning and another friend having a thyroid biopsy on Friday. Please keep both of them in your prayers for good results.

Biopsy results...

2007-04-11T18:20:00.000-07:00

Finally some good news. On Monday I had the "suspicious breast lesion" removed successfully. Dr. Marks told my husband that everything was "perfect" when describing how the procedure went. Today Dr. Marks called to give me the good news that the source of bleeding had been isolated and was multiple intraductal papillomas--a benign process. So my breast cancer scare is officially OVER for now.

I will be having a fine needle aspiration (guided by ultrasound) of my thyroid nodules done at Northridge Hospital's Women's Center (they have got to be as sick of me as I am of them by now) on Wednesday, April 18th. We are looking for confirmation of common nodular goiter (probably caused by hypothyroidism), but biopsy will be done to rule out thyroid cancer. I have a friend who is having the same thing done two days later, so please keep her in your prayers, too.

The best part about the breast surgery--certainly NOT the throbbing boob pain I experienced the day after once the local anesthetic wore off--was being under general anesthesia. They used propaphol, which we recognized immediately as Elizabeth's "milky sleepy medicine." While I was under, I saw Elizabeth. She was in the distance running and playing in ways she never could while she was alive with cancer. She looked completely healthy and restored, so much so that she almost didn't look like herself, but it was clearly her. She was happy! I don't know that she "visited" me, because I didn't have any direct communication with her, but I believe that I was given this sweet gift of seeing her. I felt like someone was telling me that she was okay and that I could stop worrying about her. I really believe that this experience was a most precious gift from God, at a time I needed it most. I tried to get closer to her once I saw her, but couldn't. When I was coming out of the anesthesia, I remember asking for Michael, and apparently once he was there I told him SEVERAL times about Elizabeth... I was still pretty loopy from the medication I guess. Even if the icky complications from this surgery happen, this experience was WELL worth it. I finally feel like Elizabeth is okay.

We are starting to pick up the pieces and find ways to move forward with life. I'm looking for work. Matt likes to go to the cemetery, so lately we've been going about 2 or 3 times a week. It's nice to remember Elizabeth through his eyes sometimes, and to see how much he still thinks about her and loves her. Elizabeth's brothers are going to keep her memory alive in so many amazing ways... I am excited to see what they continue to come up with.

2007-04-05T10:45:00.000-07:00

We are getting ready to go to the Aquarium of the Pacific today. Matt loves the aquarium and it was one of his and Elizabeth's favorite places to go, other than Disneyland. Seeing the rays will be hard. Elizabeth loved the rays. She loved spending a long time at the touch tanks with Matt, petting and playing with the rays.

I had my pre-op on Tuesday. I am not excited about getting this biopsy surgery. It turns out that there is a pretty high percentage of certainty (upwards of 70%) that I will suffer some pretty icky complications based on the location of the lesion. And these complications are regardless of the outcome of the biopsy--they are simply a result of having the surgery at all. But there is no way to tell if the lesion is cancerous without doing the biopsy surgery, so if I didn't do the surgery I would run the risk that I do in fact have breast cancer and we don't catch it now. Obviously, I am going ahead with the surgery--but I'm not very enthusiastic about it. Surgery is on Monday, April 9th, the day after Easter. I have to be at the hospital (Northridge Hospital, the same place both Matt and Danny were born) at 7:30am, which is good because I can't eat. Impending breast surgery (which will require radiologically guided wires to be placed in my breast first) AND no food--I will be a very cranky person on Monday morning. I'm guessing I'll be pretty cranky after surgery, too...

We visited the cemetery again yesterday. Matt and I went on Monday, too. It's always nice to see that other people have visited Elizabeth and left flowers for her. I like knowing other people are thinking about her and missing her, too.

Happy Easter! We will be spending Easter alone at home. It's just too hard to even think about being with other people on the holidays right now. Last Easter was our last trip to Tennessee (the only trip after Elizabeth was diagnosed) and our last Easter holiday with Elizabeth. She was so worried that the Easter Bunny may not be able to find her so far away from home. Matt asked the other day if the Easter Bunny visits Heaven. I assured him that I am very sure that Easter is a very big party up in Heaven!!

I'm still waiting to schedule the fine-needle aspiration of my thyroid. We'll keep you posted.

Mom's surgery scheduled

2007-03-28T10:58:00.000-07:00

On Monday we made the big leap and went to our first Michael Hoefflin Foundation grief group meeting. We were regular attendees of the family support groups, one of Elizabeth's and her brothers' favorite things to go to. (Elizabeth wanted to go to family group on February 12th so badly, but she was so so weak that we dared not take her. She loved the pictures and notes everyone sent home with her brother Mike for her.) Going to grief group was not easy. It was funny, though, because Matthew said as people started to arrive "Mom there's some new people!" I had to tell him that they weren't new... WE were the new people! I explained the difference between the groups and he totally understood. I said that the other group meets on the second Monday and that this group meets on the fourth Monday. The old group was for families with a kid who was living with cancer and this other group is for families when that kid with cancer died. He looked at me and said, "Okay, because Elizabethie died so this is our group," and went back in the kids' room to do his thing. He is so funny that way. I like that he can talk about her without crying every time any more.

Last night was hard. We couldn't sleep. I have been taking benedryl at night so I can sleep ever since a friend mentioned it to me. It has helped immensely. Last night I forgot to take it and when 11:30pm rolled around and I was still knitting, it clicked that I needed my benedryl! It took a long time to finally kick in, and I was just miserable. The late night hours are the worst because I remember being awake all the time with Elizabeth. Even when we were sleeping cuddled up in her bed, I would only sleep lightly, always afraid she would die when I was asleep--and I so didn't want that. I wanted to be there for her. I didn't want her to die feeling alone. So when I'm lying in bed alone, awake, and without her to hold... it's just the most empty terrible feeling.

I'm still working on all the thank you notes. We have so many thank you's to get caught up on. So many people did so many things for us both before Elizabeth died and after. I'm still getting notes here and there from ChemoAngels--Elizabeth so loved her Angels! She claimed you all as her own. I am so honored that they send me cards every now and then still. I can see why Elizabeth felt so special when Angel Mail came! I want the thank you's to be personal (Elizabeth always always was very adament about personalizing notes and writing or drawing very specific things for specific people.), so they are taking longer than I wanted, but hopefully in the next couple months they will trickle into the mail system. Please know that we are so so grateful.

So my "removal of breast lesion" surgery is scheduled. I am really not happy with my insurance right now since they did not and will not approve UCLA, but I can live with it (I hope!). I will have the biopsy done at Northridge Hospital (where both Matt and Danny were born) on Monday, April 9th, the day after Easter. I am awaiting insurance approval for fine needle aspiration of my thyroid nodules (under ultrasound guidance). The endocrinologist I saw on Monday, Dr. Barakat (whom I really really like), thought the thyroid problem was certainly NOT thyroid cancer, but could be a hormonal reaction sometimes associated with breast cancer. She was very much in favor for an aggressive breast biopsy ASAP. So that is the status with me. It is all very annoying, but I really can't complain.

Please remember that there are plenty of kids still fighting and too many families hurting. Keep them in your prayers. Thank you for the generous donations to the Elizabeth Hill Memorial Fund. We will be doing something in Elizabeth's name to benefit other kids still fighting, most likely through the hospital, but we are taking our time because we want it to be RIGHT. Of course, we will keep you all posted. Thank you.

Happy Fancy Rainbow Day!

2007-03-25T12:30:00.000-07:00

Happy Fancy Rainbow Day!!
Now go have fun with your families. We are going to the cemetery with rainbow flowers for Elizabeth (Matt's request) and rainbow ribbon streamers on a stick to leave for her. We will also watch Magic of the Rainbow later today and eat dinner at the Burbank Elephant Bar, in honor of Princess Elizabeth. We just miss her so much and I wish she was here to see that we kept Fancy Rainbow Day going.

Fancy Rainbow Day

2007-03-23T19:14:00.000-07:00

Well, Monday came and went and we are still breathing. It is hard to believe that Monday marked the first month without Elizabeth here for us to hold and touch and talk to. In a way, it seems like it has been forever without her. I can't begin to express how hard it is and how much we miss her.

Sunday, March 25th is Fancy Rainbow Day. I'm so sorry that Elizabeth isn't here to share it with us. She created Fancy Rainbow Day last year, and this year was to be our second annual celebrating of her self-designed holiday.

Fancy Rainbow Day came about last year in reaction to St. Patrick's Day. Elizabeth had major surgery on March 8th last year, and was hospitalized until St. Patrick's Day (which happened to be a Friday... I remember it clear as day). I was with her in the garden at Children's Hospital Los Angeles waiting for Dad to finish something in the hospital before going home. Her surgeon, Dr. Stein, happened through and stopped to say hi to her. Elizabeth was wearing something with green (I am pretty sure it had either Ariel's tail or flower greens or something like that... I'm hoping the finer details come to me eventually as my brain fills in those kinds of little things) and I was wearing mostly brown, but my t-shirt had a little shamrock on it. Dr. Stein teased that he wouldn't pinch Elizabeth because she was wearing enough green, but that Mom probably wasn't. Elizabeth thought that was so funny! She got such a big kick out of the requirement of wearing green for St. Patrick's Day. It made quite an impression on her.

Later during the following week, Elizabeth said that pretty soon it was going to be "fancy rainbow day." I, of course, asked her what that was to which she responded "on Fancy Rainbow Day everyone in the whole family has to wear their favorite color." Then she pondered that a few seconds and added, "well, maybe not their favorite color, but at least something very color-full." I asked her when it was and she said "Saturday" which happened to be March 25th. She had me mark the calendar and added that we had to go out for dinner in our fancy rainbow colors on that night. I asked her if it was always supposed to be on March 25th like a birthday is always the same date (and Halloween and Christmas...) or if it was always supposed to be the third Saturday (like Easter and Thanksgiving change dates) of March. She said that it was always March 25th (which I found out happens to be a friend's birthday--happy birthday, Amanda!). And that is how Fancy Rainbow Day was born. It was important to Elizabeth to wear fancy clothes in pretty colors and spend family time together at our favorite restaurant (which is, for those uninitiated, the Elephant Bar in Burbank--although any Elephant Bar would do in a pinch, even the one in Anaheim)... so important that creating a holiday just for that purpose suited her. It was a guarantee that we would spend every March 25th doing just that. I am just so sad that she won't be here with us to see her holiday celebrated again.

If Elizabeth so inspires you, wear colors for her on Sunday. Go out and celebrate living and loving with your families.

Elizabeth's teacher, Mrs. Preis, came by today and she told me that the class is having a celebration on Monday in honor of Fancy Rainbow Day. How incredibly awesome is that?! I popped in on the class this morning just to see them for the first time since Elizabeth died. I could only stay for a few seconds because I was so on the verge of tears, but it was good and hopefully next time I'll be able to hold it together for a little longer. Mrs. Preis also brought me a book that the class had written and illustrated all about Princess Elizabeth. I will have to scan it in and post it up on her Everlasting Memories tribute website. It is so amazing and is the best present I've received (along with the Magic of the Rainbow book that Caitlinn brought me to read to Elizabeth when I visit her at the cemetery) that isn't from my own kids. Kids are just wonderful. It is only through these kids (Elizabeth's fellow cancer survivors and Brownies and classmates) and the boys that I am able to find some relief--some way of healing and relieving the hurt. I just feel such a tie to them because they loved her so much and made Elizabeth's life so full. Sometimes I still can't believe that she is gone.

As for me...
well, I have no real news. My breast surgery is in the process of being scheduled ASAP. An aggressive sample (meaning bigger than necessary is how I am interpreting that) will be taken and biopsied. The surgeon I've decided on (not my first choice since my insurance has denied every appeal to be treated at UCLA's breast center) seems to think it is more likely to be cancer than not, but he also tends to err on the side of caution (assume the worst, be grateful if it's not). I won't know for sure until the surgery if it is or is not cancer. Wouldn't it be nice if that were the only problem?

Unfortunately, I also have thyroid nodules. I found a lump at the base of my neck (also on my right side, same as the breast) the day after Elizabeth died. I thought maybe it was from crying or a physical manifestation of the grief and mourning. It didn't go away. I finally had an ultrasound of my thyroid two weeks ago, which showed a large (2 cm diameter) nodule on the right side and two smaller (0.6 and 0.7 cm diameter) nodules on the left within my thyroid gland. They are complex nodules, meaning both fluid filled and solid, so it is not simply cystic. I am seeing an endocrinologist (gland specialist) this coming Monday who will give me her recommendations. I am expecting a fine-needle aspiration to be scheduled so that cellular samples can be drawn and pathology can determine if it is possibly thyroid cancer. Thankfully, thyroid cancer when caught early (much like breast cancer) is typically cureable... as long as it's not the ultra-rare shouldn't be occurring kind. Funny, I don't find it comforting that as long as it isn't rare it is cureable, because frankly, rare actually does happen to some people and I don't like our track record.

Regardless, I am simply praying that the two incidents, breast and thyroid, are NOT related. I wouldn't even be scared so much if both are different kinds of treatable cancer. I would be very very very scared for my family if it is linked because I know what systemically spreading cancer looks like, what it smells like, what it does and what it steals.

Tomorrow I am starting on Elizabeth's leftover cancer fighting supplements. I have a whole box, untouched. A couple of close friends told me to take them before when all I was facing was possible breast cancer. I couldn't. They were meant for Elizabeth. How could I take them? Part of me resented the supplements--they failed us. They didn't save Elizabeth. She died anyway. And besides, I didn't have cancer as far as I knew. I probably didn't need them. It would be admitting it was possible. Admitting cancer could be right back in our daily lives spitting in our faces. Well, I'm not going down without a fight, and I am afraid a fight is coming, so I'm taking the supplements. I hope it is unneccessary, but I am going to cover my bases and do what I can right now. Maybe I'll start eating bio-organically, too, but only after I finish the last bag of Ruffles in the house. I'm craving some salt...

I love you, Elizabeth.

Watch ABC World News tonight

2007-03-08T13:20:00.000-08:00

There is going to be a piece on ABC World News with Charles Gibson about Adult vs. Child therapies. A news crew was over to film an interview about Elizabeth. Mom did wonderful.
It is part of a larger segment, but there is supposed to be some of the footage from the interview they did at the house.
UPDATE: The portion on Elizabeth got cut from the larger story. It may be on Good Morning America tomorrow.

Missing Elizabeth

2007-03-01T16:29:00.000-08:00

I miss her so much.

There is a huge hole that just won't go away. Every time I leave my bedroom I have to pass through Elizabeth's room to get to the rest of the house (terrible set-up now, but it was always nice before to have our rooms adjoining). I'm finding myself either holing up in my room or staying in the living room to avoid walking through. I just keep wanting her to be back in her bed, telling me to rub her tummy or scratch her back or put lotion on her. I am miserable with loneliness missing her, no matter how many people are around. I would give or do anything just to hold her again.

I already knew she wouldn't outlive me. Her diabetes alone was severe enough that to make it to early adulthood would have been challenging. I knew she could never be pregnant and that I'd never experience that. I had already grieved on some level for all that I knew she'd never do or have as an adult, but I still thought she'd at least have her childhood. We knew she was dying, and yet it is still a shock.

She gave me so much. I wish there was more I could have done for her. Everything we did, all the treatment and the research and switching hospitals and just everything, all of it couldn't save her. It should have been enough and it wasn't.

How many more kids? How many more families?

I am so thankful that I was her mommy. As much as it hurts, I still feel so blessed. Is it possible to feel cursed and blessed at the same time? I think that describes it pretty well.

The boys want to go to Disneyland. We are taking them tomorrow and staying in one of the Disney hotels tomorrow night. We won't be back until probably late Saturday, so don't think we're ignoring any phone calls!

Remembering Elizabeth

2007-02-25T10:07:00.000-08:00

Thanks to Marie Beavers at Bastien & Perrott, we have an Everlasting Memorial online for Elizabeth. It will be available forever, and we invite anyone with stories or memories of Elizabeth to please submit a Tribute online. Once we have approved it for release, it will be posted online for everyone who visits Elizabeth's Everlasting Memorial page to read. We hope that over time as people start remembering more stories the page will grow and will remind us, her immediate family, that there really were more good times than bad. The movie we made from photos and drawings that played at Elizabeth's viewing is also available for viewing online at the Everlasting Memorial page. The link is: http://www.mem.com/display/biography.asp?ID=1731653

Elizabeth's obituary is also available for viewing online. There is a guestbook there that people can sign, and it will be available online for one year. Rest assured, we are printing everything to go in a remembrance book so that we will have it forever. Feel free to sign at the obituary guestbook or the caringbridge guestbook. Believe me, we read everything over and over. The link to Elizabeth's obituary online: http://www.legacy.com/LADailyNews/Obituaries.asp?Page=LifeStory&PersonID=86577430

Thank you to everyone who came on Friday and/or Saturday, and those who couldn't come but were with us in spirit. It amazed us to be surrounded by so many friends and family. I wish everyone could have seen the view from the podium on Saturday. As I spoke about Elizabeth and looked out at so many faces, I was overwhelmed with joy and sadness, knowing she touched everyone so deeply and will leave an empty space that can't be filled. I will get it together soon and will be posting more details at a later time... although probably sooner rather than much later because I can't seem to keep myself from wanting to post here even still.

I would like to ask everyone who spoke on Friday night if they would please please please just take a few minutes in the next couple weeks or so and jot down a little of what you said. We treasure each word that our friends so generously shared about Elizabeth and what she means. It helps.

Thank you all so much for your prayers and messages of encouragement. Not one goes unnoticed. The emails and countless guestbook entries amaze us still. Thank you.

Services update

2007-02-22T13:30:00.000-08:00

Elizabeth's obituary will be published in the Valley edition of the Daily News tomorrow, Friday February 23.

Donations to be used to honor Elizabeth's memory can be made to
The Elizabeth Hill Memorial Fund
c/o the Bank of Santa Clarita
27433 Tourney Road, Suite 150
Santa Clarita, CA 91355

Friday, February 23:
Viewing at 5pm at Bastian & Perrott Oswald Mortuary
18728 Parthenia St, Northridge CA
818-886-8600
Rosary at 7pm at the mortuary
Opportunities to speak about Elizabeth immediately following the rosary (open to all attendees)

Saturday, February 24:
Funeral Mass at 1pm at St. Genevieve Parish
14061 Roscoe Blvd, Panorama City, CA 91402
Procession to San Fernando Cemetery immediately following for graveside service

Reception following graveside service

Services

2007-02-21T11:41:00.000-08:00

Elizabeth’s funeral will be 1:00 pm Saturday, February 24, 2007, followed by a procession to San Fernando Mission Cemetery for a grave site service. We are asking everyone to wear some of their favorite color in honor of Elizabeth’s self proclaimed holiday, “Fancy Rainbow Day”.

We will also be having a Viewing and Rosary on Friday, February 23, 2007 at **correction viewing begins at 5:00 pm** and Rosary is at 7:00 pm in the chapel at Bastian & Perrott. For those of you looking to make a donation somewhere in honor of Elizabeth, we are working to coordinate that. We will update this post once we have a place for it.

Everyone is welcome at the services. We wish to share this with everyone who was touched by Elizabeth.

Arrangements and Viewing:
Bastian & Perrott Oswald Mortuary
818-886-8600
18728 Parthenia St, Northridge CA

Funeral Mass at 1:00 PM
St. Genevieve Parish
14061 Roscoe Boulevard
Panorama City, CA 91402-4214

2007-02-20T19:36:00.000-08:00

Thank you everyone who has been signing and praying still. This just doesn't get any better as time goes on. I miss her... I started missing her the second after she died, and it just hurts everywhere.

We are still working on getting final details scheduled--primarily the biggest thing holding us up is scheduling the church. I won't rant about that right now, but hopefully things will work themselves out and we'll get Saturday morning at a church for mass. Preliminarily, we are planning a Friday night vigil/rosary at the mortuary, Saturday morning mass, followed by procession to the graveside. There will be a reception following nearby--those details (like location) we are still working on as well. There is just so much to do right now. I guess it's good because it's keeping us busy, but I can't imagine the lack of usefulness I'm going to feel once the services are over.

Bastian & Perrott Oswald Mortuary
818-886-8600
18728 Parthenia St
Northridge CA

Once we have times confirmed tomorrow, we will post all the details here. We are planning to keep the services open to any who want to be there, so please come if you like--we'd be so happy to see everyone Elizabeth loved and who loved her who want to come. And don't go buying any new black clothes because we are asking everyone to wear some COLOR--Elizabeth would appreciate that. Last year she declared it to be "Fancy Rainbow Day" on March 25 when everyone should wear their favorite colors. She always did like holidays, so of course she had to make one up of her own. So let's make her service a celebration of Fancy Rainbow Day.

We are working on the everlasting memorial page, so PLEASE start thinking of any great Elizabeth stories you could share with us. Right now it is so hard for us to remember Elizabeth before the past two months when she's been really sick, and we will need your memories of Elizabeth to help us out. I can't stop thinking about her passing and how one moment my arms were full of Elizabeth and the next they were just empty, even though I was still holding her body. I just miss her. There will also be a time for stories at the vigil on Friday night and we invite you to think about if there is anything you want to share then.

Those are the early things... we'll post again more concrete plans tomorrow as soon as we've nailed down a church. Thank you everyone.

Princess Elizabeth earned her wings

2007-02-19T02:15:00.000-08:00

Our angel Elizabeth has her wings to fly to heaven.
She had a good couple days after Valentines Day, but then the last 24 hours turned quickly. Our sweet fighter was talking and fighting right to the end when she passed away at 2:15 in the morning on February 19, 2007.

Happy Valentine's Day

2007-02-14T16:44:00.000-08:00

Elizabeth is on the couch for the first time in almost a week. She is in and out, but she wanted to go out there and watch Monsters Inc. (which is DVR'ed and can only be viewed in the living room or my bedroom--she chose the couch over my bed). She was munching on some of the Valentine's Day candy that her classmates sent with her teacher to bring her for a few minutes, but quickly tired. She has been fighting pain all afternoon, though she doesn't want to admit it to us until it is visible on her face. She is just so brave... sometimes I think too brave, trying to tough it all out herself.

We love her so much, and are so blessed to have one more Valentine's Day to celebrate with her. Even the boys have really embraced the idea of telling us all how much they love us and each other. It has been a really nice day.

Thank you to everyone who stops by and sits with Elizabeth. She feels love from all around and coupled with the prayers it is giving her strength.

Special Valentine's Day thank you's to Mrs. Preis for bringing the class valentines to Elizabeth right after school so she could feel part of the class celebration and to Teri, MacKenzie's mom from Mac's Project (www.macsproject.com), for bringing over a huge bunch of heart balloons and valentine's treats for all of the kids. Even better, Teri spent some time with Elizabeth making special decorations for her wall that I will treasure forever. A personal thank you to Teri's family, Peggy and everybody, for my special Valentine's Day present--The American Girl Doll Samantha (which I have wanted since I was little) so that Elizabeth's doll Isabelle has a friend.

Elizabeth had me in bed with her snuggling for a couple hours this afternoon--the perfect way to spend Valentine's Day. She still pulls me close even when she is in so much pain. She never stops giving and always seems to know how much I need to be close to her now. I can't even imagine how much we will miss her if she doesn't get better.

Please keep praying. Remember that too many families have to face this, and too many kids are suffering. Please pray for us all.

Almost Valentine's Day

2007-02-13T09:22:00.000-08:00

Sunday night was extremely tough. Elizabeth had a really bad episode where her eyes were open and she was non-responsive. Her pupils were fixed and dialated for 1-2 minutes, and she seemed to be gasping for breath. Her heartrate continued to be low (40s) and erratic for a couple of hours. Again, we were closer than we have ever been to losing her.

All Monday morning Michael and I spent with her, holding her and reading to her and talking to her. She wasn't really conscious most of the time, but during one period of alertness we were able to talk to her about what she is worried about. It turns out she doesn't want to go to heaven without us. There's not a whole lot we can say that will make that okay with her. But we did talk about how wonderful heaven is and how time there is different from time here. If she gets to heaven before we do, she won't even have time to miss us before we'll all be together again there. I told her it is like when the kids in Narnia go through the wardrobe and they are in Narnia for years and years, but when they go back home through the wardrobe again they have only been gone for a day. She understood that, but I'm not sure how much she believes it. She just doesn't want to leave us, and I can't blame her. I can't imagine being a little kid (even one as wise as she) and enduring so much pain, knowing that I may die and lose my parents and the only life I've ever known. Please pray for peace for her through this.

I'm getting better, and thanks to tons and tons of Sudafed I'm actually feeling alright. Hopefully the rest of the family stays well.

We think that Elizabeth's recent episodes may have been triggered by the increase in methadone. Looking back on the last time she was having similar symptoms (although she's never been fixed and dialated with non-responsive pupils like that--simply awful and scarey), it seemed to coincide with the last methadone increase. So this may just be another risk to increasing her pain meds to keep her as comfortable as possible. I don't know how many more increases her body can take if this is how it reacts every time, yet we certainly can't allow her to suffer in pain either. These just don't seem like "choices". I don't want to choose any of this. I hate cancer.

Elizabeth seemed to rest pretty comfortably over night. Of course, I was up constantly checking her vitals and blood sugars trying to stay sane. She was stable all night, heartrate back to 80s-90s and steady. She slept with the oxygen on and was at 99-100 saturation levels all night, which hopefully helps to refresh her body.

Tomorrow is Valentine's Day. Who would have ever guessed that we would make it this far? Please pray that it is a happy time for us and gives us another chance to share our love with Elizabeth and the boys. Pray that we have happy memories of Valentine's Day so that future Valentine's days can be somewhat happy.

Happy Valentine's Day.

Rough Day

2007-02-10T18:33:00.000-08:00

We went up on Elizabeth's methadone dose this afternoon. Hopefully after a day of the higher dose (changed from 15mg/6 hours to 20mg/6 hours) she will start to have a little relief. She wasn't complaining about any breakthrough pain, but rather she was having constant pain that the methadone just wasn't seeming to help. Her pain has been mainly in her back (both upper and lower) for the last couple of days, but today she was complaining more of chest pain when we asked. She doesn't complain about much on her own... we really have to work at getting her to tell us what is wrong. She is trying to tough it out herself--I just can't imagine how she does it.

I was asking what was wrong earlier today--she has been visibly bothered and upset, but doesn't really volunteer any information. She finally told me, "I'm afraid I won't make it." I know what I would mean if I said that, but I wanted to be sure what she was meaning... so I asked if she meant she wouldn't make it back to school or to go on her Disney Cruise celebration or exactly what she meant. She was quite annoyed that I was asking for clarification (because I think she thought it should be quite evident what she meant) and said "to be alive" which was quickly followed by her "duh, mom" look that she gives me. So she finally talked about it. We talked about heaven and about miracles. I told her that sometimes kids die from cancer and sometimes they don't and that we are doing everything that we can to help her live. She is really worried about dying. There is nothing peaceful or calm about when she talks about it--she doesn't want to stop living and she doesn't want to stop fighting. She is not experiencing the peace that a lot of kids do at this point. I don't know if that means her time isn't up, or if it just means that she will stay determined to live until the cancer finally takes her. I just don't know what to think any more. I just keep praying for a miracle.

Please keep spreading the word about Elizabeth's incredible will to live. Keep praying and thanks for still checking in on us.

Also, I am starting to get sick. Hopefully it's just a cold and nothing worse, but even a cold could be devastating to Elizabeth right now. I have been so extra careful to wash my hands well and try to keep my germs away from her. It is so hard because all I want to do is be with her. Please pray that whatever I have, Elizabeth doesn't catch it, and that it passes quickly so I can get back to covering her in kisses.

Still praying for improvement...

2007-02-09T19:10:00.000-08:00

Elizabeth has been pretty tired today. It seems like her methadone dose may need to be increased, as we can tell by her facial expressions (and her complaints) that she is starting to have increased pain. It is never encouraging to have to increase pain meds... just another sign of what turmoil her little body is going through.

She is still having awake time, though, and still pretty interactive with us for a good part of the day even when she is lying down and appears to be asleep.

Please keep praying for her miracle. Every day I wish I could post that everything is better and that we have our cure, but I know the reality of what we are facing. Sometimes families just don't get their miracle cure. I sure am thankful for all we have gotten, though, even if we don't see a cure.

I am so thankful to be Elizabeth's mom. Even with all the heartbreak and misery that has come along with it, I have been truly blessed to share every day of her life with her. She told me a few days ago: "You brighten my life." I only hope she knows how much she has changed and brightened mine and the rest of her family's.

Thank you for your prayers. Things seem to have gotten a little worse today, but hopefully once we up her methadone she will feel more comfortable again.

Another day, another miracle

2007-02-08T15:11:00.000-08:00

Even though the weather is quite gloomy outside today, I can't help but be cheerful. Elizabeth and I cuddled all night in her bed and her breathing and heartrate have been pretty much perfect. Her respirations are strong and even with no sign of fluid in her chest as of yet--thank God!! Her heartrate is in the 80s and 90s every time I check, and we haven't seen any huge fluctuations the way we were seeing just a couple weeks ago. Even her pulse-ox is reading better than it had been in quite some time, up to a range of 94-98 (off oxygen) when before she ranged high-80s, low-90s. This is GREAT, especially since Elizabeth has decided that the dry nasal passages was getting a little uncomfortable with having the oxygen canula on.

Even Elizabeth's cheeks look a slight bit fuller today--I had to have Elizabeth's dad come take a look to make sure I wasn't seeing things, and indeed, they do seem fuller to him as well. Elizabeth is drinking about 10 oz. of fruit smoothie each day, to which I'm adding about 10g of protein (powder form) so that she can get some amount of nutrition. Of course, nothing but the best for the princess, so the smoothies, although homemade, are put into a recycled Robek's Juice (a chain like Jamba Juice out here) cup complete with lid and straw so that Elizabeth will think I'm going to Robek's every morning... I would if it made her any happier, but this arrangement works out well, and this way I can add more protein than they do.

Today Elizabeth requested chinese food, and ate about five bites of rice and sweet and sour chicken. And, of course, she did have the requisite Junior Mints and Jelly Bellies today as well. Thankfully all of our amazingly wonderful friends and family who visit Elizabeth all the time are keeping our stock of candy (as well as food for the rest of the family, too) steadily filled.

Yesterday when Elizabeth and I were taking our warm Aveeno bath, I asked Elizabeth what advice she'd give a kid who just was diagnosed with cancer. She said,"I'd say be true to yourself and be brave." Elizabeth is still very much herself and very much here.

Please keep praying. Elizabeth needs to get stronger before we can really consider any of the other alternative treatments out there and before she will be able to take her full course of supplements from Mannatech (I'm only able to get a few things into her each day right now). Even megadoses of intravenous vitamin C would cause fluid overload in her little body and is out of the question. We consulted with Oasis of Hope Hospital (the most reputable alternative treatment center in Tijuana, Mexico) and their treatments for Elizabeth would be IV vitamin C, laetrile (B17) (which doesn't really have a lot of proof that it works any way), and ozone treatments. 12 days there, 6 weeks home, 6 days there, 6 weeks home, 6 days there, and done is the course of treatment... for the bargain price of just under $25,000. Anyway, Elizabeth would have to be a lot stronger in order to take the treatments due to the volume of liquids and her inability to readily clear them right now. But it is an option we are keeping in mind for possible use later down the line if we can get there.

She just won't stop fighting. Please pray that God will continue to use her as an example. He has brought us this far for a reason.

Strongest Girl EVER

2007-02-07T07:06:00.000-08:00

I didn't really think I'd be here a week into February posting about how Elizabeth is doing, still, when we came home at the beginning of last month. Of course we still vacsillate between believing we are witnessing the grandest of miracles and worrying that she may not make it another day, but it is no longer a matter of wondering if miracles happen. Every single day that Elizabeth is continuing to fight and win is a huge miracle at this stage in and of itself.

Elizabeth has been feeling better ever since we got her started on the minimal IV fluids (through her central line--no needles) with sugar in them (D25, 0.5N saline, run 12.5mL/hour). Once we got her blood sugar (with no pancreas, she has been severely diabetic since 6/04) higher and steady, she has been up more and talking more. Her constipation (pain meds in general, and especially methadone, can cause constipation) has finally seemed to respond to the Senna, and yesterday she didn't need any break-through pain doses of methadone. Her scheduled dosing of methadone (we are up to 15mg/6 hours) was sufficient, and she NEVER complained about pain. When we asked her she said she was "okey dokey" and the pain was "0", which is huge. The constipation was causing terrible gas pain (which the methadone actually does very little for) that made Elizabeth moan and groan. It has been bad and worse for the last two weeks, but finally her bowel movements are coming daily and the pain seems to be resolved.

Elizabeth also ate a little yesterday for the first time in two days. She had fritos with guacamole and started back on her Junior Mints and Jelly Belly jellybeans. She is also drinking more again. And while she is feeling good enough to be on the couch for a bit about every other day, and I am thankful for that, she is still backsliding on a couple of fronts. The thing we are most worried about is her continued loss of weight. She has no cheeks any more (facial or otherwise), and looks like such a frail old woman. She certainly doesn't look (or act, for that matter) like a child. I don't know that there is any more fat or muscle mass left on her body for her to lose, and I don't know how long she can keep going without gaining any weight back. Her poor little body is really just skin and bone and so fragile. I am heartbroken any time I look at her and take in her physical appearance. But she is still Princess Elizabeth, fiesty as ever, still running the world around her.

Keep praying for a miracle. She had a nightmare yesterday during her nap in which she was in surgery and "they did it wrong" and her heartbeat went "thump..
thump....thump.........thump..............and then I pooped out"--her words. She woke up terrified. She is not ready to die. She isn't looking for us to tell her it's okay to go, because she still has life left to live. She just isn't ready yet. Please pray that this all can still move on her time schedule. Maybe she knows that she isn't supposed to die until she's 80+ years old, and she's determined to stick it out!

Back in the fall, Elizabeth kept saying she wanted to go on another Disney Cruise. We said sure, we can do that again in a couple years or so. She said she wanted to go for her 7th birthday (May 2007), and that this time she wanted a 10 day cruise. Maybe she's holding out for that?! What an amazing celebration THAT would be!!

Thank you for believing and praying for Elizabeth's miracle. We have received miracle upon miracle all along the way, and every day we are witnessing more.

As for my minor situation, I did see Dr. Helena Chang (Director of UCLA's Revlon Breast Center) yesterday morning. My right breast duct needs to be removed, but I have a couple of months before it HAS to be done. So the good news is that I have time. It is more likely than not benign, but even if it is DCIS (ductal carcinoma in situ) I have time. So I am thankful.

Thank you again for checking in. Take care and hug your babies.

Up and Hanging out on the couch

2007-02-01T20:02:00.000-08:00

Right now Elizabeth is hanging out with Mrs. Gomez and her ALL survivor daughter Alyssa out on the living room couch. She totally perked up about 2 hours ago and has been munching on Pick Up Stix House Special Chicken and Junior Mints, apparantly a tasty combo.

Elizabeth is still pulling through even when her dad and I think she may not. With each instance of prolonged heart fluctuations and piggyback heartbeats, there is a very real possibility of heart failure. Yet, she has been recovering every time.

There have been a lot of people praying for Elizabeth--of all different faiths. We are choosing to support Elizabeth in her obvious choice to continue fighting and keep living, and are keeping up all medical care that helps Elizabeth in that respect. She has been having trouble maintaining blood sugar levels and complains of feeling "low" sometimes--and she has been as low as 40 a few times. We will probably start her on IV fluids with sugar in them to help with this issue. If she were truly suffering and not able to maintain consciousness we may struggle with choosing maintenance fluids or not, but at this stage her little self is clearly choosing to fight and we as her parents need to support her. We have already been at the brink of losing her and told her she could let go and that we'd be okay, giving her the permission that some kids need before they will actually die. She doesn't need us to tell her it's okay. What she needs is support in her choice to live, and that is one of the many things she is teaching us daily. And while medicine can't offer us the hope of a cure any more, God can. We are as ready as we can be to let go if that is the way this thing goes, but we aren't going to speed up that result either by letting her blood sugar bottom and sending her into a coma. And we are still keeping up with her thalidomide dosings at night again.

It has been two and a half years full of miracles... why should we ignore that and assume that the miracles are over? It is February and I have never been so happy to greet a new month. On Tuesday I fully plan to enjoy watching the new Disney DVD release Cinderella 3 with Elizabeth. We will send a family member to Target down the road first thing when they open to bring it home right away and then Elizabeth and I will snuggle up together in her bed and watch my second favorite princess (Princess Elizabeth is obviously my very favorite, and Cinderella is a very distant second). Elizabeth says she can't wait for the Little Mermaid 3 to come out March 2008. I'm thinking that just maybe she can.

She still watches the Barbie movie a lot. I am so excited for the rest of the world to have a chance to see it in March. It is a nice story and it just resonates with us so much. Every little girl engaged in a fight for her life should get to lose herself in a beautiful story like that, and take away inspiration like Elizabeth has. Getting that movie early really did give Elizabeth something to look forward to and strengthened her resolve. Thank you Make-A-Wish and Mattel.

Keep praying and believing in miracles. We are claiming Elizabeth's ultimate miracle. Thank you everyone for praying.

February!

2007-02-01T08:07:00.000-08:00

Elizabeth is in her bed, resting her eyes and body, but fully aware of what is on her TV and awake enough to tell me when to change the channel from Disney to Nickelodeon and back again!

February 1st is another of our victory days, however bittersweet it is.

Thank you for continuing to pray for Elizabeth and all of us.

Maybe we'll make February afterall...

2007-01-31T13:08:00.000-08:00

Elizabeth is still hanging on. We've been pretty busy with the ups and downs of this process, but we are so thankful that people are still praying and still checking in on our baby.

Elizabeth has been in what they are calling a "steady decline" for a couple of weeks now. She is still Elizabeth, though, with her very particular requests and plenty of spunky attitude. In fact, we just spent this past Saturday (just 4 days ago) at Disneyland with our incredible hospice nurse, Karen. Elizabeth had been very clear and specific about getting to Disneyland with her Dad and me and her brothers. I just wasn't very comfortable about doing that when pretty much Elizabeth could very possibly die at virtually any time now, so Karen offered to come with us so we could make Elizabeth's desires happen. How incredible is that? Even more incredible is that we spent 8 hours there. Elizabeth is really setting the bar pretty high...

She is having trouble maintaining blood sugar levels, and her heart rate will sometimes dip or fluctuate. We've prayed for a miracle and we've prayed for peace whatever the outcome and we've prayed for pain relief and strength. We are surrounded by friends and family. I'll try to keep up with brief updates more frequently. Things just aren't getting any easier over here. There have been two times that I thought she was going that I was at peace with it, but today she just seems to have so much fight left in her that I feel like I need to be doing more to help her fight, too. This is just awful.

Please keep her in your prayers.

I will be seeking a second opinion for my breast masses at UCLA Revlon Center most likely next week. They have already been interpreted as a category 3 (out of a scale 1 - 5, 1=nothing 5=definitely malignant) and I have surgical consults scheduled for early February. I'm so ready to just have the whole darn thing cut off if that will prevent more headache and heartache for my family, but we'll get there when we get there.

Smile!

2007-01-19T13:35:00.000-08:00

Elizabeth got albumin at the hospital today. Wanted to stop at McDonalds. Some things never change!

Somewhat stable...

2007-01-17T17:56:00.000-08:00

Elizabeth's sleeping patterns have somewhat stabilized and we are able to enjoy most of the afternoons and early evenings with her awake and wanting to be on the couch in the living room. We are so blessed with so many people who love her and want to surround her. Elizabeth is so lucky to be a student at Canterbury E.S. (and only because the incredible principal there Mrs. Parlen really went to the mat for her) with an amazing staff there that pampers Elizabeth, even when she isn't able to make it to school! She has been able to enjoy home visits from her teacher and other people there that she loves and it has made this whole terrible time so much better. One of the things Elizabeth has told us many times is that she is so sick of her body not letting her do the things she wants--one of those things she wants so desperately is to be back in school. The visits from the school staff makes her so happy and she feels like she isn't missing out as much, although she still misses the kids in room 48 all the time. I am so so thankful that she got the opportunity to experience being a student, even though it was really only for about two months. It was a lifelong wish for her, and I can't even express how thankful I am that she was able to realize it.

The last few months have been pretty amazing in that respect... Elizabeth has crammed a lot living into such a short period. She continues to try to do as much as her little deteriorating body will allow even now. In June she was able to participate and dance in her first real ballet recital. She missed the June 2005 recital that she had been scheduled for since her liver resection came up at the same time. We were able to attend it (she was discharged just the day before from her surgery only days earlier), but she couldn't dance and while happy to watch it, was a little saddened that she wasn't dancing. June 2006 was her year to dance. In August we had her Disney Cruise from Make-A-Wish. What amazing memories we all have from that trip! At the end of September she was able to start school for the first time ever. She immediately bonded with the teacher, Mrs. Preis (how did we get such an amazing teacher?!), and the kids in class all wanted to help her and take care of her. The kids are such an incredible bunch, totally empathetic and caring. She made her way into the hearts of the staff, and has touched so many people just by being herself. She won her first school award in November. In October she got to join Girl Scouts and become a Brownie. She has been waiting to be a Brownie ever since her big brother became a Cub Scout when she wasn't even two yet. Finally, she was a scout herself! She met the most adorable and sweet little girls in her troop, centered at Village Christian School in Sun Valley. Troop 144. They got to choose their uniform, and somehow they all agreed on the one Elizabeth liked best: a light blue oxford shirt with brown skort, brown knee highs, and brown sash. Her sash with patches and pins was delivered just last week. What a treasure. The last meeting she was well enough to attend was the first meeting they got to wear their uniforms. Another incredibly special day. The Brownie Moms have been taking care of our family with deliveries of food, gift cards, activities for the boys, and special gifts for Elizabeth. The most valuable thing they have given me is their support and prayers and reassurances that they have all been happy that Elizabeth was a part of their troop. We were always so welcomed, even though Elizabeth didn't attend the same school as the rest of the girls, and we had never even met before. Until October, these ladies and their daughters were strangers to us, and us to them. The way they have completely embraced us has me speechless. I am so so thankful.

My biggest fear has been that by enrolling Elizabeth in school and scouts, especially with her unsure future, was that she would take a turn for the worse and all the kids who she had loved and who loved her would be hurt and damaged by losing her. Every one keeps reassuring me that the kids will be okay and that they are learning valuable life lessons. I hate this. I just want Elizabeth to be okay and to go on living and playing and loving and making new friends. And I love those kids who have been so good to Elizabeth. I hope they will be okay.

Today Elizabeth has eaten less and drank less. She is urinating less. But she is still getting up out of her bed or off the couch and walking around now and then. She scares me! I'm so afraid she'll fall or hurt herself, but she is determined. Today she grabbed me and snuggled up in my arms in her bed. While we lie there, her in my arms, she started to cry a little. When I asked what she was crying about she said don't worry, they aren't sad tears, they are happy tears. Then she said that she is just so happy she has such good doctors and that she was so glad they finally got those stupid drains out. I said I was glad, too. I keep trying to bring up opportunities for her to ask questions or talk about what is going on, but she won't. She just keeps talking about fighting the cancer. Sometimes I wonder if she even has any idea that everyone thinks she is dying. She certainly doesn't seem to think so!

On Monday she had a little tea party get together with her friend MacKenzie. Thank you so much, Teri, and Mac and Maddie and Mallory for making Elizabeth feel so special! They brought the American Girl Place to Elizabeth, complete with doll (which she named Isabelle) and outfits and more. Another wonderfully special day full of memories. I love this family and their girls so much. I love the Durans, too. I hate that these girls and others like them (boys, too) are haunted by cancer.

Please keep praying for Elizabeth's miracle. Thanks for checking in.

God is good!

2007-01-14T08:47:00.000-08:00

I can't help but feel full of hope and joy this morning. Of course, that could all change in a matter of minutes, but so far so good.

Yesterday was the best day Elizabeth has had in a long time. She was happy to see two of her fellow cancer fighters, Abby, and another Alyssa with her mom Mrs. Gomez (one of Elizabeth's favorite people at her school). She lounged on the couch all afternoon and evening while family stopped in and out. The evening culminated with a bubble bath with mom and viewing Barbie Fairytopia and the Magic of the Rainbow twice in a row. Her favorite uncle spent the night cuddled up with her in her bed and for the first time in a couple of months Elizabeth slept through the entire night. She was happy and sweet and so thankful to have the new Barbie movie so early. I can't talk about specifics (I signed a confidentiality agreement), but I was incredibly moved by the scenes at the end. This movie couldn't be more suited to Elizabeth, truly. I am so full of gratitude to both the ladies at Make-A-Wish that organized getting it and the staff at Mattel that agreed to let her have it. Another little miracle.

Please keep praying. While I am really and truly thankful for good days like yesterday and this morning, I am still so hopeful that she will pull through this and stabilize, if only for a bit. Funny, but I got this feeling about 5 days ago when I picked up a couple of books from Barnes & Noble (thank you Angel Kim!) and walked by the Valentine's Day display that Elizabeth was going to see another Feb. 14. Silly? Maybe. A little too hopeful? No such thing.

Please add to your prayers two little girls. One has been walking this road as long as we have, and has enjoyed a short time of remission. Her recent scan shows two spots, possibly a recurrance. Please pray that these spots are NOT cancer again. They have been through a whole lot, and I won't leave details for reasons of privacy. Just know that they could use prayers, too. Another is the niece of a dear friend (who has already walked the road with her own daughter) who will be consulting tomorrow for a liver tumor just discovered. That family is about to begin down that horrible road, and they could use prayers, too. And, of course, keep praying for Elizabeth. Whether we are being blessed with a few more short good days or whether a healing is underway, I am thankful. I want so much more, and I'm asking for it, but I am full of thanks right now as well. Rollercoaster of emotions doesn't even begin to describe it!

Thank you so much for the continued generous outpouring of love and care and support we are receiving. I can't imagine walking this alone.

2007-01-12T08:49:00.000-08:00

Elizabeth is still resting a lot of the day, but she continually amazes me at how strong-willed she is. She is starting to talk a lot more about not knowing how much longer she can take the pain when she is feeling it badly. Those times are really really hard. But there are good times, too. Yesterday was Danny's second birthday. It was NOT easy. It is not a time for celebration, yet here we are. Elizabeth snuggled up on the couch and sang "happy birthday" with a smile. She demanded birthday cake and happily ate two bites before groaning saying that was enough cake for her.

We called the Pain Team at CHLA this morning and are thankful to find out that the dosing of methadone that she is on is extremely minimal, and that we have a lot of play with increasing the dose before we'd have to move on to IV pain meds. We are trying to stay away from that as long as Elizabeth's pain can be controlled without it because she would need a constant drip of Narcan 24/7 along with the dilaudid (pain med) to control the itching she experiences on it. That would inhibit mobility some, and we like to be able to move her wherever in the house she wants to go whenever she wants as quickly as we can. She has been enjoying bubble baths about every other day with me. We don our bathing suits and snuggle up in the warm water complete with bubbles and her favorite bath confetti. I'm her bath cushion.

Mattel has graciously agreed to let us borrow a pre-screening copy of Barbie Magic of the Rainbow (being released on DVD in March) so that Elizabeth can enjoy it now, seeing as she most likely won't make it to release date. Every new Barbie DVD brings about anxious waiting in our house, as Elizabeth counts down until it's available and we pray she gets to see anther release. This time is more poignant than the rest have been, by far. Elizabeth has a really special thing for rainbows and butterflies, making this story so totally her. I contacted Make-A-Wish and asked if they could use their connections with Mattel to get a copy for Elizabeth. I called them Monday. Today is Friday and we'll most likely be getting the copy today. The people there are so wonderful and happy to do this for Elizabeth. On our Make-A-Wish trip, on the plane on the way to Florida, we saw a couple of rainbows. It may be hard to make out, but I'm posting a picture of it. I'm just so grateful and overjoyed that she gets to enjoy it and won't have to miss Magic of the Rainbow.

Keep praying. Every day is a miracle. Every smile is priceless. I just want her to live.

2007-01-10T07:12:00.000-08:00

Elizabeth is resting a lot of the time, but she is still having plenty of good time, too. We are controlling the pain pretty well without using the IV narcotics yet. She told me that she is sick of this stupid stupid cancer and that she is frustrated that her body doesn't want to do anything fun except rest and watch TV or DVDs and sleep. She said that she's been fighting it for about 20 years (I've always said she sounds like she's 26, not 6, so I guess in a way she might be right). I asked her what she wanted to do about it and she said she was going to fight it until it was gone. I asked her how long she thought that would be and she said it seemed like maybe forever. She wanted to pray and ask God for help. I am so proud of her. We are not telling her she has to keep fighting it or be strong (like we have been before the dreaded CT scan), but we aren't telling her to give up either. We are letting her say what she feels and thinks without feeding her what we think that should be. She will guide us, I imagine. She always has been the one leading us with her strength and determination anyway.

Keep the prayers and messages coming.

She's a FIGHTER!

2007-01-08T21:58:00.000-08:00

Elizabeth is still hanging tough... no surprise there! She always has been a tough-y.

Each day seems to be getting a little better as her stent placement heals and she has her bursts of energy. We had her at CHLA outpatient today to get blood drawn and have her CBC and Chem 14 panels checked. Her bilirubin is continuing to decrease (down from her all time high of 8.7 to 4.something), and her liver enzymes aren't getting worse, so hopefully her biliary stent is helping.

Elizabeth is on some heavy duty pain meds (methadone and neurontin), but her doses aren't huge and her pain is being managed pretty well now without completely knocking her out all day. This is just huge for us because it means she has more quality time left.

She is putting on a strong face, but she still has moments when she cries out that she can't take the pain. Thankfully, these moments are happening far less than they were almost a week ago (when it was pretty constant until we met with the Pain Service Team and got on the meth and neurontin). Dr. Joseph and the pain team are simply incredible. These people are called in when nothing else is helping, which means the cases they see are always bad (even if only temporarily bad before recovery). I am so thankful for how they have worked with us to help our princess. It has made all the difference.

I'm trying to keep this update short, since Grandma Mary is keeping Elizabeth busy (they are playing Pretty Pretty Princess right now), but I want to say thank you to everyone who is praying. And thank you to Candye, Pun, Nurse Tina, Nina, Nurse Sona, whoever was working the CHLA pharmacy on Saturday night, Tux, all the ChemoAngels, all the Angels of Hope, all the Warrior Angels, all the Prayer Angels, Maureen, Grandma Mary & Grandpa Terry, Grandma Kirsten, Uncle Luke, Dr. Elizabeth Eddy-Bertrand, Kelly, Lisa D., Kathy, Make-A-Wish, and Mattel. You guys know why, so I won't go into details.

To add just one more thing to our plate, on Friday 1/5 I found I had bloody discharge from my right nipple. Today I had a mammogram, which doesn't show any obvious masses. I am scheduled for a ductogram (don't ask... if you think mammograms are bad, add having a wire shoved through a duct into your breast and THEN have a mammogram--all without anesthesia) on Monday 1/15. If Elizabeth can do what she does, I can face anything. Odds are in my favor that it is a ductal papilloma, but if it isn't that, then it is probably ductal carcinoma in situ (DCIS) which is breast cancer. Either way, a lumpectomy is in order, the only question is if we will have to follow up with more radical surgery or chemotherapy/radiation. So when I say our plate is rather full, I really mean it. I'm doing just fine with all this, but I worry about my boys if I have to tell them that their mom is now facing cancer, too. Hopefully that day won't come any time soon.

People keep saying that God only gives us what we can handle. I wish He didn't have so much faith in us... I think I'm reaching my limit.

We're still hopeful and praying for a miracle. Truthfully, every day in which Elizabeth smiles is a miracle. Every day that she is still here, I am thankful. God bless you all and keep praying.

Elizabeth is home

2007-01-06T19:13:00.000-08:00

Today we were discharged from CHLA to go home. We will be back for lab draws on Monday because we requested it. As much as we know that Elizabeth will not see a cure (save for a God given miracle), we are just having such a difficult time turning our backs and giving up on doing everything we can (which includes transfusions or antibiotics when necessary) to keep her as healthy as possible. There can sometimes be an air of "why bother--it's not going to help the big problem" and we aren't expecting her tumors to go away or even be treatable, but we want to treat everything else that we can, if for nothing else than to keep her as comfortable as possible. Her little body doesn't need to fight anything more than it already is facing, and modern medicine can still help some things (like infections or low red blood cells) even if it can't help what she needs most (a cure for cancer). We met with Trinity Kids, the best kids' hospice group for our area, and have their information when we are ready to go that route.

The question I have been struggling with most since Tuesday (the dreaded CT scan day, January 2nd) is if we have to lose her, when will it be? Unfortunately, that is one question that no matter how educated a guess the docs (or anyone else) make, they just don't know the answer. It could be days, it could be a few weeks, and the reality is that we may not even have any warning. She could turn for the worse and it could be sudden, or we may know it is inevitable for a couple days.

We have been told that there's nothing else to do to treat her cancer before... but this is truly the worst and furthest along the cancer has been. Elizabeth has fought so hard and for so long. I want her here with me but I don't want her to suffer, either.

Please pray for us. We need strength and guidance like never before. Or better yet, pray that Elizabeth is still granted the miracle of a cure on earth.

Just a note, Elizabeth asked to stop at the Griffith Park Carousel on our way home from the hospital. We did. I held Elizabeth's frail body wrapped in blankets as we sat with Dad on the carousel bench (she didn't feel like riding a horse, and I'm not sure she physically could have even if she wanted) for three ride arounds until she wanted off to get a snow cone, which she licked three times before being done with. All summer she would ask to stop at the carousel after hospital stays or blood draws. It was her post-hospital ritual, whether with Dad or me. I will never forget how her head smelled against me or how her small body felt cuddled in my arms. God I want her to live so badly.

Thank you to everyone who has been signing Elizabeth's map and caringbridge guestbook and leaving comment entries here. Your kind words and support mean so much to us. Thank you to all our friends and family who are making sacrifices so they can help us and support us. Thank you for all your phone calls and voicemail messages and prayers and hospital visits. We feel so blessed to be surrounded by so many people who are ready and willing to drop everything at a moment's notice to help us. I am continually being amazed at how many people are stepping up to help in the last few weeks. It is such a paradox to feel so blessed to have so many who care and are touched by Elizabeth, to feel so lucky to have Elizabeth in our lives, and yet feel so utterly miserable at the recent scan results and her cancer's control.

Is it so wrong to still hope for the unrealistic, the improbable, the impossible? I keep asking myself if I'm just kidding myself and setting myself up for utter and complete disappointment. Really, if cancer claims Elizabeth's young life, there will be no worse feeling--whether I'm expecting it or not. Right or wrong, for now, I'm choosing hope.

Brief update

2007-01-05T16:11:00.000-08:00

Elizabeth is still in the hospital. We started new pain meds and she was very comfortable yesterday. However, last night, with a combination of good pain control and low blood sugar she was very sleepy. A little too much and she needed to start on Oxygen. She also started spiking fevers again. We decided to stay a day longer in the hospital and the come home Saturday. We will be back on Monday to outpatient for blood draws and anything that she needs.

The update that should never be written.

2007-01-03T09:50:00.000-08:00

Well, this would be the update that we prayed would never be written.
The drain that was a problem was replaced with a stent. The question now will be whether it will give her any relief. They pulled AFPs a couple days ago and it doubled to the high hundred thousands. Marcio ordered a CT that was done just before the stent procedure. All of her liver and abdomen mets have grown considerably in 4 weeks, plus there are so many more new ones. Likely the bile ducts are being squeezed by the tumors that have grown about 50% in her liver. She also has tumor surrounding the blood supply to the abdomen and is likely to start constricting blood flow. She has lost a lot of weight and has so little muscle.

I apologize for all the technical detail, but it is easier to write it this way

The pain has not eased in the 24 hours since placing the stent. Unless something drastic changes, we will likely be going home tomorrow. Everything medical she needs can be done at home, so we will work that out. Grandma and Grandpa are out from Tennessee right now, so there is lots for the boys to do to keep distracted.

Please keep praying for our little angel and sending the love. She is still fighting so hard and needs all the strength sent her way.

We will post as much as we can.
Dad.

Admitted for the New Year!

2006-12-31T13:38:00.000-08:00

We admitted Elizabeth yesterday. The drains keep bleeding more and her PT/PTT were about double the normal time. Platelets are still high.
So, she got some FFP (Fresh Frozen Plasma) and red cells last night. Mom is staying with her this trip. Good news was there was a bed open on 4 West. It really makes a difference. Of course, it was the good old 430B. (The only 4 bed room)
They are definitely trying to get her on track to still be able to have the procedure on Tuesday. She will definitely be in patient until then. Probably a few days after as well, but we will see.

Holding on for the New Year. Happy New Year! To all.

I want Elizabeth's drains out NOW!

2006-12-27T22:03:00.000-08:00

Elizabeth is still having a lot of pain. She has moved up again from the tylenol#3 to vicodin, and even that isn't taking care of all the pain. Sometimes we get lucky and her vicodin dosing will coincide with the benedryl she gets (for her vancomycin--she is one of the kids who has a minor allergic reaction to vanco so she gets pre-medicated with benedryl to avoid the reaction) and so she will really get knocked out and be able to sleep for a few hours. The biliary drains have been acting up, leaking from the placement site and draining blood (and blood clots at times) still. We have been to CHLA every other day it seems... Christmas Eve in emergency, then the day after Christmas for blood draw. When we were there yesterday we saw Dr. Marcio who took a look at Elizabeth's drainage site. He conferred with Dr. Stein who agreed that most likely the bloody leakage at the drain site is from movement irritating the site and drain (which is NOT sutured in place...grr) and that the blood and clots draining through the catheter are most likely because the rigid catheter is irritating the bile ducts internally and causing some non-emergent bleeding. Really, I just want the darn drains out ASAP and the stents put in so we can be done with this whole mess. Her gas pains are back, and she is even more uncomfortable because of the drains. Once the stents are in, and the drains removed, hopefully then (and even the docs agree that it is most likely) she will have less pain.

We had a quiet Christmas at home. The boys had a blast, but Elizabeth was definitely not able to fully enjoy it. She didn't have the strength to open her presents herself and wanted me to open them for her while she watched. It broke my heart. It takes a lot to suck the enjoyment and excitement out of Christmas for kids, and Elizabeth is definitely dealing with a lot head on. Thank you to everyone who sent her special presents. It was really nice to see her smile when she saw what they were after I opened them, and that made my Christmas. I can't wait until she feels well enough to be tearing open packages and notes that are sent to her and ripping off wrapping paper on birthday presents in May. It was such a bittersweet mix of being grateful to have her home for Christmas, to even have her here with us for another Christmas, and being so sad that she couldn't enjoy it like the other kids. Every day it seems lately that we mourn the loss of normalcy, especially lately, while still being grateful for what we do have. It is such a difficult and emotional place to be. Tears of joy one second, tears of deep sadness the next... doesn't seem to matter which, I'm crying constantly lately!

Please keep praying for Elizabeth to stay strong and determined. Please pray that she can feel some pain relief soon, and that the drains stay uninfected and do their job until the stents can be put in. Thanks for checking in.

Home for Christmas!

2006-12-24T12:06:00.000-08:00

Dad is on his way home from the hospital now with Elizabeth. She was examined by one of the surgical fellows who knows her, and basically, we were instructed to keep doing what we have been--pulling the clots out of her line with the syringe and trying to keep the bile flowing as best as we can. Unless Elizabeth gets terribly worse clinically or she goes 24 hours with no bile drainage from the active drain, we should be able to maintain it through the week until her stents are placed. For now, though, we are in the clear for spending Christmas at home. Hopefully when Dad gets home, I can finally catch a couple hours of sleep! Our newest kitten (who was a stray that our cat Stitch adopted) almost died Friday night (major sudden infection that put her into sepsis--thankfully she immediately and fully responded to IV antibiotics at the animal hospital), so the last few days have been incredibly trying. With Elizabeth's antibiotic regimen being every 8 hours, and it taking about 2 hours to administer each time, there has been little time for rest--and now we have a kitten who requires her own set of antibiotics as well. I think I've got all I can handle--God can stop dealing it out because I'm just about done!

Thank you for your prayers. We are painfully aware that even the simplest and most basic thing like being home for Christmas can be a huge gift. Merry Christmas.

At the hospital...

2006-12-24T07:41:00.000-08:00

Last night Elizabeth started passing blood through her actively draining biliary drainage tube. It was clotting in the line, and the bile that had been draining couldn't since the blood clots were stopping the flow. After flushing the line and pulling the clots out with the flush syringe, we were relieved because the bile began flowing again, and Elizabeth started to feel better. She had started to feel pretty lousy with the bile back-up, and it was a good sign that we were able to clear the blood from the line and the green-yellow bile could get out.

At 4am this morning, Elizabeth's line started to show blood through it again. At 2am I had been up with her finishing her vancomycin IV, so sometime during those two hours is when it started up again. Elizabeth called me at 4am because she was having abdominal pain. Her liver is feeling rather hard when we palpate it, so we're concerned that she may be having some internal bleeding. A CT scan would best diagnose what is going on, so that is what we are requesting.

Dad left at around 7am to take Elizabeth into the hospital after we talked to a bevy of docs on the phone back and forth since about 5:30am. I'm home with the three boys for now.

Please pray that they can diagnose what is causing the bleeding quickly, and that they can treat it without needing to admit Elizabeth to the hospital. Today is Christmas Eve, and although I've already explained to Elizabeth that Santa can find her no matter where she is, she would much rather be at home than the stinky old hospital. (Once I reassured her that Santa will find her, even if she is inpatient, she quickly moved onto her other pressing issue: "Will Santa leave anything for the poor and homeless kids?" It breaks my heart that Elizabeth worries about these things when she is dealing with her own set of circumstances, but that is my princess, always worried about everybody else. I am so proud of her, but sometimes I wish she wasn't so grown up and aware of the crappy things in life. My answer to her was that yes, Santa finds a way to leave something for all the kids in the world, even if it is just sending people to serve them Christmas dinner--that Santa makes sure the Christmas spirit touches all the kids--she's been really big on talking about Christmas spirit lately. And she said that he must be like an angel that God sends. She always finds a way to remind me what is important. She has too much to do and teach before her life ends... I can't help but believe that she is still here because there is a greater purpose for her.)

I will update again once I know anything. Again, please pray that she will be alright first and formost. Spending Christmas at home would be a bonus. Hug your kids.

Elizabeth is HOME!

2006-12-21T19:02:00.000-08:00

Elizabeth is home now. She is much happier, as is the rest of the family!

More tomorrow. For now we're just enjoying being together. Thank you for your prayers!

Maybe getting out today

2006-12-21T09:31:00.000-08:00

We are still waiting for rounds to find out if Elizabeth will be discharged today or not. Everything is on track for discharge. Elizabeth's blood cultures from 12/18 have NOT grown out, so that is really really good news. If they did grow the bacteria, then we'd have a serious issue going on of antibiotic-resistant blood infection. Then getting out in time for Christmas would be a minor problem... much less compared to dealing with such a life-threatening infection. Thankfully, it appears that this infection is being treated with the meds, and hopefully we can focus on making this Christmas as happy as possible for Elizabeth.

She has been in good spirits lately. When we arrived at CHLA to pick up Elizabeth and Dad for the Make-A-Wish Holiday Party, Elizabeth was so happy to see us--even happy to see her stinky brothers! She had saved little gifts (from the many she is receiving inpatient--'tis the season that different groups come daily and distribute goody bags or toys to the patients) for each of them and was happy to give her presents to them. She happily hugged Matt and Danny, which is a rarity even under the best circumstances. It was so nice to have the entire family together, even if it was at the hospital. Elizabeth was feeling so happy. It was so good to see her happy again--it has been quite a long while.

She enjoyed the party, but quickly faded after about an hour. Barbie was there for taking pictures with, so that was a nice bonus. And the party was at CBS Television City studios, so the kids had fun going up the freight elevator and seeing all the Price Is Right sets. The actual party room was the Price Is Right stage (they had curtains drawn to hide the audience chairs, but we peeked), complete with decal flower on the floor! I got a huge kick out of being on that stage, something I've dreamed about since being a baby--who doesn't want to spin that wheel? I wish I could've gotten to place a bid on something, though... The Make-A-Wish foundation of LA did a great job putting it all together, and the kids had fun. Elizabeth (and Dad) were happy to be out of the hospital, even if it only was for four short hours.

Elizabeth is walking around, dragging Dad to McDonald's every few hours for cinnamon bites (they are new and quite tasty). It always starts as a "walk", but inevitably as Elizabeth leads the walk , they always end up at McD's. She definitely knows what she's doing... she's had quite a few Big Macs, too, from what I hear from Dad. Her appetite is returning, so things are headed in the right direction.

I'll update once we get her home again... hopefully today!!

NOT getting out today

2006-12-20T09:34:00.000-08:00

Just got a call from Dad. Elizabeth will not be coming home today. Turns out that the first negative blood culture (from 12/17) grew the enterococcal bacteria at 2.9 days. Either the vancomycin didn't have enough time to get it all at that point, or Elizabeth has a resistant bacterial blood infection. Please pray that it is not resistant infection.

We will be taking Elizabeth and the boys to the Make-A-Wish party, and then heading Elizabeth back to the hospital before 4pm, when her next dose of vancomycin is due.

Hopefully the subsequent blood cultures stay negative. We should know by tomorrow if any are showing resistant strains. Again, please pray they aren't resistant. Resistant blood infections are deadly, and we've come way too far to be beaten by a little bacteria. I never think about something other than the cancer killing her, yet it is such a real possibility.

I will bring the cards and messages to Elizabeth at the hospital. What I had been preparing as a happy homecoming is now not going to happen today. Hopefully we can get her out no later than Friday. We are getting down to it, and she needs to be home this Christmas.

Getting out TODAY!

2006-12-20T08:14:00.000-08:00

Today is the day Elizabeth finally gets to come home!

Last night I managed to get her room all neat and cleaned up for her, and this morning I'm changing her sheets (the cats have taken advantage of her not being here and cozied up in her bed...) so her room is nice and fresh for her. The cards and messages that I haven't brought to her in the hospital will be waiting for her on her table.

The presents that we've received from friends and family are filling the corner in the living room, still waiting for a Christmas tree. We kept waiting for a day that Elizabeth felt good so we could go on our family outing and pick a tree, but that day just wasn't happening this year. When Elizabeth was finally admitted, we realized that we still didn't have a tree, and with the three boys alone, I just couldn't imagine having to get a tree home and set up by myself. I'm sure I could have if I had to, but I'm glad my mother-in-law mentioned to Dad that there are Christmas trees available to order ONLINE, that are shipped directly to your home via UPS! Isn't that crazy? I'd have posted the link earlier, but I only got my order in under the wire (on the last day for ordering). But here is the link for anyone interested in planning ahead for next year: www.classicchristmastrees.com. Our tree straight from an Oregon tree farm should be here by tomorrow. Then it will finally feel like Christmas here, with a tree to decorate and Elizabeth home.

Elizabeth is continuing to improve, but she's having extreme gas pain again. We're hoping it's because her bowels are trying to resume normal activity, and that the gas pains are temporary. She is coming home on two antibiotics (vancomycin and cefapime), and will still have the two biliary drains (with lovely collection baggies to juggle). We will bring her back in the day after Christmas for follow up.

One interesting note, that if anyone has even anecdotal information about I'm interested in hearing about it, is that she is not on ceftriaxone (on cefapime instead) because it is known to cause "biliary sludging" in neo-natal infants. Funny, back in June through August Elizabeth spend 6 weeks on ceftriaxone for her lung/over the liver infection. Dad and I are wondering if that could explain the biliary blockages Elizabeth just experienced, since there is no tumor causing it, no gall stones causing it (she has no gall bladder), no pancreatitis causing it (she has no pancreas), and there really is no other possible explanation. This would be a good thing, since if medication caused it, and we avoid that medication, Elizabeth shouldn't have a repeat occurance of this thing.

Dad and I had to stop Elizabeth's ambrotose for the past few days while she was inpatient because it seemed to be causing an immune response of low grade fevers. Unfortunately, the efficacy of ambrotose and it's instrumental use against cancers is not recognized in the medical community, and simply explaining to the docs to let us take Elizabeth home with a fever because it's the immune boosting supplements doesn't work to our advantage (they look at us like we're nuts, and keep Elizabeth in). Amazingly, Elizabeth's low grade fevers seemed to cease once the ambrotose was held. We'll put her right back on it once we get her out of the hospital. It can be frustrating sometimes, but learning what to do and say so that things move in our favor has become second nature.

We'll be going straight from the hospital to the Make-A-Wish holiday party, since it's right down the street at one of the studios. The kids are looking forward to it, and it's part of the reason we got the docs to agree to release Elizabeth today. They wanted to keep her until tomorrow, at least. At this point, we're experienced enough to know that there isn't anything they can do for her there that we can't do for her here at home. And she's much happier at home, so it's an added bonus to get her home where she can heal better with a better attitude.

It's been tough this year not being able to do all the fun Christmas family outings that we usually do. We are so grateful that there have been so many hospital/charity holiday parties for the kids. Elizabeth can't tolerate a whole lot right now, and the controlled events are designed for kids like her to be able to have some fun. And it is so wonderful that the boys are included as well. If it weren't for these events, our family wouldn't be doing anything out of the house this holiday season, and we are so grateful for them.

Time to go pack Elizabeth's dress selections to bring to the hospital so she can choose one to wear today, and get the boys dressed and ready to go. Please keep Elizabeth in your prayers. I really am hopeful right now. Maybe it's just that time of year, but I am starting to believe that if Elizabeth's body can just have a break from fighting all the infections and complications that keep coming up, her body can get strong enough to fight and beat the cancer. It took so long for us to get Elizabeth started on the supplements--part because we were afraid that it would feed the carcinoma, and part because I was afraid to hope. Teri didn't give up on us, and when she brought us the ambrotose to start, there was such a change in Elizabeth that for the first time in a very long time I believed anything was possible. She found us a sponsor, and now Elizabeth is on the full program of supplements. If any of you (or your employers) need an end of year tax write off, Teri's non-profit that she is just getting off the ground can be found at www.macsproject.com. Another great one is the Michael Hoefflin Foundation at www.mhf.org. I can tell you that these two groups take the money and directly impact families. We were on grocery and gas support through the Michael Hoefflin Foundation for a year, without even asking for it. Teri got us a sponsor for Elizabeth's Mannatech supplements (which are NOT cheap), without us even asking. They look for ways to help and just do it. I am so thankful that they are looking out for us.

Merry Christmas!

Working on getting a discharge

2006-12-18T13:02:00.000-08:00

Elizabeth is starting to get really bossy, so we know she's definitely on her way to full recovery. She started to have a bit of fluid retention issues (reminiscent of her June 20-July 21 stay), and Dad started to demand Lasix be given once it was confirmed late 12/16 that she had gained 4 lbs since admission on 12/14. After a few hours of residents running in circles, finally Elizabeth was given the Lasix. I was ready to drive the Lasix I have here at home to the hospital at midnight that night if someone wasn't going to give it to her at the hospital. During Elizabeth's summer stay, the water retention caused so many complications that we were inpatient for an extra week and Elizabeth was on blood pressure meds (aldactone) for an additional two months and Lasix for one month before her body finally normalized. So it's easy to understand why we were not taking NO for an answer when asking for Lasix immediately upon discovering Elizabeth was beginning to retain water again! Her weight is being monitored (as well as abdominal girth) closely, and albumen and Lasix are being given as she needs them (which is pretty often, so Dad is staying on top of it making sure it happens).

I rushed Danny to the urgent care yesterday afternoon since he was having breathing trouble. The doctor there tried to explain to me that Danny (the 2 year old) has chronic asthma and he must have been diagnosed with it before. I said NO and that's why I brought him in--because the wheezing and gasping for air has NEVER happened to him before. The doc actually tried to argue with me and had the nerve to tell me that I must have missed it before. Really. I looked him straight in the eye and said,"My daughter has been a cancer patient for 2 1/2 years now. My husband and I know a lot more about medicine at this point than a lot of you healthcare providers give us credit for. If my son had asthma I think we would have noticed by now." He stopped talking down to me at that point. Of course, later when I asked what the dosage of tylenol to be giving Danny was he said 2 teaspoons, but couldn't tell me what the milligram dosing was. All he could say was "2 tsps" so I asked what concentration of liquid (because tylenol liquid comes in two strengths) so I could figure out the milligrams, and he couldn't answer that question either. Finally he looked up that it was 160mg, but really, this guy practices medicine. I think I'm becoming more and more easily frustrated at how ridiculous the medical profession can be.

Wanna laugh? Well, it's kind of sad, but made me laugh nonetheless. We were on our way to get a prescription for Danny and traffic was backed up really badly on our side of the street. Turns out there was a car crash that was being cleared right across the street from a church that had a living nativity (actors creating the Holy family scene, complete with wisemen and shephards). Jesus' birth was apparently too distracting. That's not the really funny part... It took some time at the pharmacy (wasn't our pharmacy--when I dropped off the prescription for Danny at our pharmacy, they told me to come back in 20 minutes to get it, but neglected to tell me that they were also closing in 20 minutes, so when I came back at 6:02pm they were already gone--I had to fight at the 24 hr. CVS to get them to fill Danny's prescription without the paper and just use the CVS computer for verification) and as we approached the church going the other way, there was ANOTHER crash, this time also on our side of the street. The firemen looked like they were shutting down the living nativity since it was creating such a disturbance. Could anything be more ridiculous? It was one of those "Why God?" moments for me. After everything with Elizabeth, and the day from hell with trying to get Danny treated so he can breathe, the pharmacy fiasco, and then car wrecks caused by people gawking at the re-enactment of Jesus' birth... it just makes me wonder what is the reason, the underlying purpose for all of this to happen? Why does Elizabeth have to go through all this? Why do kids get cancer? How is that part of the grand plan?

Thank you for checking in. We have had two negative blood cultures so far, and have made it almost a day with no fever. It looks like we should have Elizabeth out no later than Wednesday, just in time for her Make-A-Wish get together. Please keep praying for her continued healing and a nice Christmas.

A bit of good news...

2006-12-16T13:00:00.000-08:00

Elizabeth's blood infection does NOT appear to be vancomycin resistant, as I was fearing it may be. This is really good news.

Still inpatient...

2006-12-16T08:11:00.000-08:00

Elizabeth is still inpatient, and will probably stay until around Wednesday of next week. She is doing well, but there have been a couple of issues come up that will keep her in the hospital for longer than originally anticipated.

First, when Elizabeth's drains were placed, it was originally thought that there was something putting pressure on Elizabeth's bile ducts (tumor or scar tissue). Once the fluid was drained, it became clear that it was infected from being unable to drain properly through the ducts. This particular situation (infected, blocked bile ducts) is called cholangitis. Her biliary drainage samples have grown bacteria, confirming the infection. She is currently on IV antibiotics, and will be for at least 2-3 weeks.

What I am most worried about, however, is Elizabeth had blood cultures come positive last night. The cultures taken before her procedure were negative, but the cultures after her procedure were positive. Positive cultures means that there is bacteria in her blood, which is really not good. If it is real, then it suggests that there was bacteria introduced into Elizabeth's bloodstream during the drain placement. It is Gram positive (which is supposedly more susceptible to antibiotic treatment than Gram negative) and will be treated with vancomycin. I am rather unhappy that Elizabeth now has this complication to deal with. I'm trying not to jump to conclusions, but unless someone can explain to me why all of a sudden AFTER the procedure her blood is infected, while BEFORE the procedure it wasn't, we're going to need to speak with administration as to how Elizabeth's bloodstream could have been infected (with different bacteria than her liver infection, mind you--those were Gram negative) during a supposedly sterile procedure. I am praying that this bacteria in her bloodstream is NOT vancomycin resistant, and that it responds well to the vanco.

These things are serious things. People die from cholangitis. People die from blood infections. Yes, we see things with a different frame of reference than most, simply because pancreatic cancer is the most fatal thing we face every day. But that doesn't take away the severity of everything else Elizabeth faces. She is doing well, everything considered, but she is not home free yet from either the cholangitis or the new blood infection. Generally, I try to keep these updates very positive, but I need to be honest, and I am worried.

As far as discharge, Elizabeth won't be able to go home until her cultures are cleared. Samples are taken daily (sometimes more often), both biliary fluid and blood, and sent for cultures. We are waiting for her biliary fluid cultures to show no more infection to go home. Also, now we need her blood cultures to be negative THREE times in a row for her blood infection to be considered treated. So these are the things keeping her inpatient. Every second she spends in the hospital, she is being exposed to all the bacteria and viruses that are there. I used to want her kept inpatient as long as possible because I thought it was better to have the docs right there just in case. Over time, though, I've learned that the longer we're there, the sicker we get. I can't tell you how many times I've caught stomach bugs while staying with her because parents have to use the public restroom facilities. No amount of handwashing can keep me well if there is another parent or visitor on the floor sick. I always seem to get it, and I'm careful about the handwashing and the santizing. It just doesn't matter--hospitals practically breed germs. I want Elizabeth well enough to come home so I can control her environment without a million people coming in and out of her room all day (and night) long.

The good news is that Elizabeth is off the strong pain killers (dilautid and vicodin) and has only had 3 doses of tylenol #3 in the last 24 hours. She is uncomfortable and not quite up to her usual drawing or crafting in her bed, but she is markedly improved from before the procedure. We will be visiting her later today so I can bring her full supply of supplements, extra clothes for Dad, and all of her goodies from school. Yesterday was the last day of school for the kids before holiday break. Elizabeth had to miss her class party, but there were a lot of people who sent special goodies and presents for her, so I'll be bringing them to her in the hospital.

Last night I took the boys out to Santa Clarita for a holiday light tour, sponsored by the Michael Hoefflin Foundation. We were invited to join Sue and Chris Hoefflin and two other families on a vintage firetruck to look at the spectacular lights in the area. Elizabeth and Dad would have so enjoyed it! I'm sad that she didn't get to go, but I also didn't want the boys to not go because they were already excited for it. The night started with dinner and then we all got to climb on the truck with Santa! I'm telling you, this Santa is the REAL Santa Claus--we've met him before at MHF events and there is no better Santa anywhere! Two Christmases ago, he visited the kids at a MHF support group meeting, and Elizabeth kissed him on the cheek without hesitation. He is just so amazing with the kids and so jolly and so happy--he isn't possibly acting. Danny and I sat next to him on the truck, and Danny must have bapped him a dozen times, and Santa was just so funny about it. I guess Danny will get that tricycle afterall... It really was nice to see Tyler (a leukemia patient who is on maintenance) and his family along with meeting another leukemia patient, Brian, who is recovering from BMT. We missed Mackenzie who was out with strep throat (please say a prayer for her), but we hope she is feeling better soon. Thank you to the Hoefflins for inviting us.

Please pray that Elizabeth's two infections respond well to the antibiotics. If everything goes well, she should be able to be home in time for Christmas. Thank you Angels for your continued messages and cards and presents. I will be bringing them all to the hospital as they come for Elizabeth (with the exception of the Christmas presents--those go under the tree). It always makes Elizabeth smile to get Angel Mail!

Merry Christmas and Happy Hanukkah!

Elizabeth is recovering nicely

2006-12-14T19:12:00.000-08:00

Elizabeth had her procedure done today. While everything did not go as expected, she is feeling much much much better now that some of the bile has been drained.

Originally, it was planned that Elizabeth would have the cholangiogram (injecting the liver ducts with dye, and watching it on x-ray to find the blockage problem), and then have the stent(s) placed where the cholangiogram indicated it was necessary immediately following. After Elizabeth spiked a rather high fever of 40.4C (that's about 104F) at the hospital waiting for the procedure, it was then decided that we were possibly looking at infected bile fluid. Putting a stent in while infection is present is not good. Once the radiologist was able to drain some of the fluid out, and it looked like infection to him, he decided to put in drains to help open the ducts and be able to drain the infection out. As Elizabeth's antibiotics help the infection clear, and her body starts to heal, she will become a candidate for the stent(s) to be placed. For now, she will have her two bile duct drainage tubes in place (complete with little collection baggies outside her body). It is anticipated that it will be about two weeks before she is ready for the stents.

The good news is that, unlike chest drainage tubes, patients can go home with these drains. Yay! We are hoping that tonight goes well and that she will be able to go home tomorrow on IV antibiotics.

Elizabeth is feeling so much better now that the drains are in. I can only imagine how painful the infected fluid must have been if being poked with large needles and tubes threaded through your body is less painful! Her temperature has gone down, and though she is on some pain medication (she was already on pain meds before the procedure, but even the vicodin wasn't helping), she is in a much better mood and seems more like herself.

Elizabeth's AFP levels are up to 94,900. The AFP level measured on Tuesday at 9900 was a mistake (we thought they lost a zero in there...), but would have been really nice if it were true. About 2 1/2 weeks ago they were at 72,000, so going up is no surprise since Elizabeth has had to be off of chemo since November 15. For a moment, though, I did want to believe that we were seeing a miracle and I so wanted the AFPs to come back today in that 9900 range. I can't say that I'm disappointed, persay, because I expected it to be a lab error, but I was sad. It really did feel good, though, to feel a little crazy outrageous hope. The whole mixup showed me that it's okay to hope for the improbable (virtually impossible), which is something I've been so reluctant to do. Even if it doesn't turn out, we're still here, still hoping, and still fighting.

Happy Day!

2006-12-13T09:28:00.000-08:00

I am so happy to report that Elizabeth will have her biliary stent placed TOMORROW, Thursday the 14th. She is scheduled for the morning and will be admitted to the hospital for observation immediately following. Actually, this procedure is an outpatient procedure, but radiology doesn't have enough recovery beds, so Elizabeth's doc is circumnavigating the system and having her admitted so that we can have the procedure as early as possible. It doesn't look like she'll be kept overnight, but even if she is, as long as there are no complications (which there shouldn't be any--it seems to be a pretty straightforward thing as opposed to most CT guided procedures) we anticipate being home by Friday morning.

Elizabeth's pain has gotten so intense that we've had to switch her pain meds from tylenol #3 to hydrocodone. Her pain is definitely attributable to the lack of bile to digest her food and the digestive issues it causes in her abdomen. We are looking forward to the stent being placed as it should relieve a lot (if not most) of her pain. If all goes well, we should have our happy Elizabeth back by Friday!

We want to thank Dr. Stein for seeing us so quickly to discuss Elizabeth's CT scan and what his surgical recommendations (or lack thereof) were. It made ME (mom) much more agreeable to a stent. And thank you Dr. Marcio for doing whatever magic he does to get Elizabeth in for the procedure so quickly. Even if Elizabeth's recovery is atypical (for her and the procedure itself) and it takes her a little longer to get back to herself again, we have enough time before Christmas to ensure a happy Christmas morning--which means a whole lot now that we are painfully aware of how precious each and every holiday (and every day) is.

Thank you to everyone who has been praying and thinking good thoughts for us. I can't help but believe that when so many are praying for the same thing, God can't help but listen. The last month has been really rough, but hopefully now there is a light at the end of this tunnel. Just another bump in this road until the next...

Elizabeth will make it to school later this afternoon. It is Mrs. Preis' birthday, and Elizabeth wouldn't miss it!! Also, it's the holiday performance, and even if she doesn't feel like singng on stage, she'll want to be there to see it. Matt will be performing, too, so it's important to be there to see him.

Take care and Merry Christmas! Please keep praying for Elizabeth's pain relief and for the radiologist doing the procedure to have an easy job of it.

Going to CHLA

2006-12-12T08:42:00.000-08:00

We will be at CHLA most of the day. We are scheduled to meet with Dr. Stein for a surgical consult late this morning, and then have an appointment with Dr. Marcio (oncology) early afternoon. Elizabeth is having more and more pain. Last night she gave us a scare when her heartrate hit the 190's (she usually only hits the 150's when she is running high) and she started burning up. We are wondering if it was a reaction to her pain medication (tylenol #3). Her blood pressure was sky-rocketing, she had a terrible headache, and all of her blood vessels were bulging. We were able to get her started on her oxygen and help her calm down with some guided imagery, but it took a bit to get her back down to the 140's. This morning her heartrate is normal and her headache has gone, but her tummy pain is continuous. There isn't much we can do to help her--we feel so helpless. We have done everything we can from hot packs to putting pressure to leg exercises to help relieve the gas pains, but it is pretty bad. Please say a prayer today that she can find some relief, and that there is something the docs can do to help.

Surgery consult

2006-12-09T16:22:00.000-08:00

Last we heard, it is likely that we will be able to meet with Dr. Stein (Elizabeth's surgeon) on Tuesday this week. Hopefully we will have surgical options and be able to get Elizabeth scheduled for some procedure within the next week or two. We'll keep you posted.

2006-12-07T20:25:00.000-08:00

Elizabeth had a CT scan this morning. We just got the call from her oncologist that she will need at minimum a biliary stent to open her bile duct and allow the bilirubin to drain. There is evidence of a new tumor in her peritoneal area, but the other known lung tumors seem to have gone unchanged. It is still unclear whether the previously questionable areas in her liver are tumor or not. We are scared and still trying to decipher what the facts are and what our options are at this point. Please pray that we will find some guidance now and that we will make the best decisions. Thank you all for your support. I will update again tomorrow once we have more information and know what our plans going forward will be. We are in no way giving up hope that Elizabeth can still beat this.

Bilirubin still high

2006-12-02T12:21:00.000-08:00

On Thursday, Elizabeth had another blood draw to gauge how her liver is doing. Her bilirubin was 2.5 on Monday, and had dropped only slightly to 2.3 on Thursday. She is looking less yellowy, though, and hopefully with time the jaundice will continue to improve.

There are three distinct possible causes for Elizabeth's liver to have reduced functioning that we can come up with. The worst would be that there is more cancer growing there, causing bile duct blockages and other malfunctioning. Another possible cause is chemotherapy toxicity causing liver damage. This would mean more time off of therapy (and higher AFP counts while we wait as the cancer grows). The best possible scenario is that the high doses of antibiotics Elizabeth was on while inpatient before Thanksgiving were causing temporary liver problems and that her liver will repair itself as the antibiotics filter through. Dr. Marcio has requested a CT scan to be done before December 8, so hopefully we'll have a better idea of what is going on then. We are praying that Elizabeth's liver continues to improve and that we can get her back on chemotherapy soon. Every day that she is off therapy is another day that the cancer has a chance to grow unchecked. It terrifies me that the medicine that is supposed to help her may also be causing irreparable liver damage. Both her cancer and severe liver damage are fatal. This whole cancer thing is just so unfair.

Elizabeth had a minor breakdown the other day. She just started sobbing in my arms, saying "It's not fair." All I could say is that she's right. It really is not fair. Her morale and typical strong exterior really took a hit when she started losing her hair. Really, the last three weeks have just been really tough. Everything just started happening all at once--the hair, the unexpected hospitalization, more pain, low counts, and not being able to go to school. Things are starting to look up today, though. She is in a really good mood and has been playing a bit outside and in her room. She even asked about going somewhere later today, so those are all good signs.

Christmas is coming and it's always a hard time for me in general. Now that we are faced with the possibility that every holiday that comes could be Elizabeth's last, it is almost unbearable. But, it is coming whether I'm ready for it or not, so I guess it's time to get the house in order, the laundry done, and bring out the decorations. Last year I remember feeling like it was Elizabeth's last Christmas. It was almost tangible. I really believed that it was my last year to Christmas shop for Barbie dolls and pink clothes. So I am incredibly thankful that she is still here and still fighting for her life. Of course, I'm also terrified that this year may be our last with her, but I guess last year showed me that we will just never know when will be her (or our, for that matter) last.

Thank you for your continued prayers. Thank you to everyone who sends Elizabeth Angel mail and Princess e-mails. Now more than ever, since she has been feeling so blue, it has helped so much for her to get your happy messages. Please pray that we see improvement in Elizabeth's liver, and that her strength returns. We are still holding onto hope that Elizabeth stays strong enough to fight this long enough so that she wins.

Quick update & Prayer Request

2006-11-28T00:23:00.000-08:00

Elizabeth continues to recover from her low counts at home. We have been home for almost a week now, and thankfully, haven't had to be re-admitted in spite of a few minor set backs.

Elizabeth has been running low grade fevers, but they have seemed to stop (although she's been on a lot of tylenol for tummy aches and generalized body pain, and that always masks a fever). Her diarrhea has lessened, which is a huge blessing. The IV antibiotics that she was on while inpatient make her already constant diarrhea nearly unbearable, so the fact that her bowel movements are returning to her normal is great.

We spent the morning at CHLA getting blood drawn. Elizabeth's ANC is way up (yay for GCSF!) and she is no longer in a critical low count state. However, Elizabeth's bilirubin is way up. On Saturday Dad noticed that Elizabeth was looking a little yellow, and sure enough, she is at 2.5 (up from 0.6!). We don't know what is causing it, but we are hoping that this repeat jaundicing (last time was while inpatient in July) is related to all the IV antibiotics she was on recently (just like in July). We hope it is not a sign of near future liver failure or chemotherapy toxicity that could stop her current (and future) treatment.

Elizabeth is doing well otherwise, though she is irritable and tired. She misses school terribly (but has enjoyed her new princess sticker workbook from Angel Pat), and I'm thankful that her counts will no longer be an immediate hindrance to getting back to school. She is getting used to her semi-bald head (she still has bangs and some hair on the very top of her scalp... Dad calls it a "very bad comb-over" out of her earshot, of course) and just loves the soft pink cap that Angel Janet sent for her. She is still insisting we get some kind of fake hair for her, though, so I'm exploring all the options.

The bad news is that her AFP is up to 72,000. We had gone from 91,000 to 66,000 to 58,000, so this increase makes me sad. It is also, however, indicative that her thalidomide/etoposide treatment was having some effect on the cancer. She has been off treatment since 11/16 (due to the low counts), so the AFP rise isn't surprising--but it is still disappointing to me anyway.

My prayer request for you all is this:
Please pray that Elizabeth's body will stay strong enough, long enough.
That we will find a treatment that keeps her alive and happy.

Also, we have a friend who is currently inpatient (since Thanksgiving) who needs some prayers, too. He is only a few months older than Elizabeth and is fighting leukemia. He was only a baby when his 15 year-old brother lost his fight against the same disease. Tonight please add an extra prayer for Jacob, and all the rest of our babies fighting for their lives.

Elizabeth home!

2006-11-22T11:24:00.000-08:00

Got Elizabeth home last night. Her ANC is still down to zero, but not much the hospital can do right now. Just waiting for counts to get up.
Hopefully, everything holds for a nice Thanksgiving.
Dad.

Back in hospital

2006-11-18T17:43:00.000-08:00

Elizabeth had been in the hospital since Wednesday night. She has been fighting an ear infection since last weekend. On Wednesday afternoon, she spiked a fever to at least 40.4 C (about 104.5 F). We found out Wednesday that her blood draw from Tuesday showed low ANC counts. The 2 together meant heading to the ER Tuesday night and getting admitted. The original plan was to get out today if her blood cultures were clear after 48 hours.
Then a different attending came on for the week and now it is "policy" to wait until ANC is above 200 to go home. Right now she is down to 90, so it may be a while.

Try to update soon.
Dad.

MRI results

2006-11-15T08:12:00.000-08:00

Elizabeth's head MRI results were clear.

There is an area showing old damage, that appears minimal, and does not pose an acute problem. It is a small calcification that was explained to us to have been caused by a TIA (not an actual stroke, but similar and minor) or other infarction. Regardless, it is old damage and not caused by 11/4's probably-a-seizure incident.

Elizabeth's hair continues to fall out. She is showing signs of balding now, and is having a tough time with it. She doesn't want to go to school for the first time ever, and I think it is because of her hair. She decided to sleep in this morning (school started 5 minutes ago), but hopefully I'll be able to coax her into going to school later, even if it's only for a little bit. She has already missed Monday (MRI day) and Tuesday (oncology day and Grandma Mary's last day here), and I think the longer she waits to go and see everyone with the hair loss, the worse she will build it up to be. I so hate that she has to go through this again. What really saddens me is that about a week before her hair loss started, we ran into our friends Lisa and Jakie Delong at the hospital and I commented on how cute little Jakie is with his bald head. I said that I missed Elizabeth's bald head. I feel like such a heel. Yes, I missed it, but I didn't want it to happen!

Elizabeth had an AFP blood draw yesterday. Hopefully we can get the results later today or early tomorrow. Another drop would be cause for extreme celebration. Almost every time we see a drop, it is followed by a bigger rise, so breaking that pattern would give us cause for thinking these medications could be doing something real for her.

Thanks for checking in. Please keep Elizabeth in your prayers. Pray that she can move beyond the hair loss and return to her happy self soon.

Halloween 2006 photo

2006-11-13T08:46:00.000-08:00

Halloween 2006

Mike as Jack Skellington, Elizabeth as Princess Elizabeth the Purple Princess, Matt as Nemo, and Danny as Squirt the turtle from Finding Nemo

An update... FINALLY!

2006-11-09T15:37:00.000-08:00

A lot has gone on for the past month--I'm actually looking at my calendar to try to remember the important stuff.

As of the last update (10/2/06), Elizabeth had started on the glyconutrients (you can visit www.mannatech.com for more information) passed on to us by MacKenzie (a survivor of stage IV neuroblastoma, and graduate of stem cell transplant) and Terri, her mom. By the way, they have started an amazing non-profit group called Mac's Project (www.macsproject.org) to benefit kids with cancer as well as the environment. Anyway, we really saw a dramatic change in Elizabeth once she had started on the Ambrotose. It was like we had Elizabeth back again. Since her June-July 2006 hospitalization, she had just lost the wind from her sails. I had all but lost every hope and was basically waiting for the worst. By the time that the Michael Hoefflin Foundation Halloween Party cam around on 10/14, Elizabeth's entire demeanor had changed. She had gained about 5 pounds and was keeping it on, and had enough energy to get around and play again.

Unfortunately, after that weekend, we got the bad news. Elizabeth's AFP levels from her 10/12 blood draw were up to a whopping 91,000 (up from 44,000 on 9/15). This made the previous 6000 point drop seem like a cruel joke. We started preparing for the worst again, waiting to see her next AFP check break the 100,000 mark. At these points, I always start to wonder what we are supposed to do. Are we all supposed to sit around and wait for the levels to keep rising? At what point does it stop? Will the levels just increase infinitely? How much longer can her body take it? And the pivotal question: How much longer do we get to have her here with us?

BUT, I was comforted by the fact that she was feeling so much better. She was enjoying school and making new friends. She had become a fast favorite of the staff, always insisting that we pass through the office going to or from school so that she could say hi to all of her teacher and administrator friends. She was living with more life than ever before, and I am so thankful that she gets to enjoy this stint of "normalcy"--although the royal treatment she gets is far from "normal"!!

On October 4, Elizabeth started Girl Scouts. In a strange turn of events, we were paired up with a brand new Brownie Group starting for first grade girls near our home--and the leader has a family connection to Chase Child Life Program at Elizabeth's hospital (CHLA). Her cousin was Chase, a CHLA patient years ago who lost his life to brain cancer. Chase's parents, her aunt and uncle, started the Child Life Program at CHLA and named it after Chase. Yes, it really is a small world. Elizabeth's Brownies meets twice every month. She loves it. Next meeting I will get a picture of her in the uniform that the girls picked out themselves. Her new favorite color is BROWN (along with pink and purple).

On October 16, Elizabeth had her first ever school picture day. All I could do all day was pray that she gets to have another.

On October 17, Elizabeth's dose of thalidomide (Thalomid) reached 350mg, where it will stay. We had been titrating up, and 350mg daily was the maximum goal. She is still taking 50mg etoposide daily as well. She is on no other chemotherapeutic or anti-angiogenic drugs. This is it. After trying doxyrubicin, cisplatin, gemcitabine, oxaliplatin, irinotecan, 5-fluoruoricil, leucovorin, Avastin, Tarceva, Sutent, Cytoxan, and vinorelbine, we are left with few (if any) stones unturned.

We finally did get amazingly wonderful (relatively so, of course) news on Halloween. Elizabeth's AFP draw on 10/30 showed a dramatic drop from 91,000 to 66,300! I have a hard time talking about it without crying. Every time lately that I start to feel the shadow of hopelessness approaching, we get some glimmer of hope like this. It really is a roller coaster ride like no other.

Halloween was a blast!--especially after the good news about Elizabeth tumor markers dropping. The kids trick-or-treated in Sylmar after having dinner with our friends, the Yamauchi's. Mike was Jack Skellington, Matt was Nemo, and Danny was Squirt (Nemo's little surfer dude sea turtle friend). Matt wanted his and Danny's costume to "match", so he picked those out. All three of those costumes came from www.disneyshopping.com, an excellent place to find costumes and princess dresses any time of year. Elizabeth designed her own costume and had her personal royal seamstress (uh, that would be ME) sew part of it. She wanted to be Princess Elizabeth, the Purple Princess, and she was. That would be a 12 Dancing Princesses Barbie as Genevieve wig she picked out to wear. She wore the wig the entire night. They got lots of candy, and Danny had a really fun night once he figured out what trick-or-treating really was.

On November 2, we got to attend two award assemblies at Canterbury Elementary School. Every month they award two kids in each class an award: one for academic achievement, and one for citizenship. Matt got his Kindergarten class' award for academics, and Elizabeth got her first grade class' award for citizenship. I think Mrs. Preis must know how much that means to me--to be able to go to an award assembly for Elizabeth so early in the year. It is so hard not being able to plan a future, and being able to enjoy these seemingly normal rites of passage is everything I live for right now. Both awards are framed and will be hung in our hallway.

On Friday, 11/3, we sat for our family pictures at CHLA. Holden's Hope Train (a pediatric oncology non-profit group at CHLA) sponsors family portraits twice a year for patients and their families. You can find out more at www.holdenshopetrain.org. They also did the family picture we have used as our profile picture on this website for the last year and a half. As soon as I've uploaded the files, I will post some of those photos. They are great--owed to the photographer Kristin Farrand, a cancer survivor's parent.

Friday night/Saturday morning at 1:50am, we had the most major scare of late. Elizabeth woke up screaming. I rushed to her and she was hitting and kicking, but only with the left side of her body. I tried to communicate to her and get her to respond, but nothing. She was breathing, and her eyes were open, but she couldn't speak and seemed so totally out of it. We tried to get her to stand up, but she couldn't control her right side. I thought she was stroking. We got the boys all in the car and I held Elizabeth in my arms the entire ride to the hospital. Michael says I was bordering on hysterical, but I think I was completely clear-headed. I grabbed the goldfish crackers for the boys, Elizabeth's Make-A-Wish cruise photo album, and told him to grab Mike's iPod with Elizabeth's Barbie music downloaded on it. I was afraid that she was dying and those two things were what I thought she would want. The entire drive I kept one hand over her chest so I could feel her breathing and her heart beating. She was still unresponsive, but I sang to her anyway and prayed the whole way there. Michael made great time, and we were at the CHLA entrance within 30 minutes of when Elizabeth first woke up. It took about a half hour before any movement on the right side was detectable, and within an hour she started to make some non-sensical noise. Her vitals were all stable, and she had a head CT by 3:30am, which showed no evidence of stroke or brain tumor activity. She was admitted for observation, and by 4:30am she was able to verbally answer simple questions. I slept with her in her hospital bed. We have had a couple of close brushes before (like July 3rd's near bleed out), but this one just felt different. More real, more severe, more close, whatever. The docs all agree that it is most likely a very minor seizure disorder that may be triggered by the thalidomide or something else, and Elizabeth will have a head MRI on Monday, 11/13, to look for any physical blockages or pinching that the CT didn't pick up. She will also have a head EEG soon to check for any evidence of seizure activity. All in all, seizures are really considered minor nuisances in the medical community (although it scares the heck out of me!), and really would probably be the best case scenario to explain what happened, and most likely. We were released less than 12 hours after admitting and went home on Saturday. Grandma Kirsten took Elizabeth shoe shopping. Just another Saturday... (meanwhile I was still recovering!) There were no complications (that we know of), and Elizabeth was actually in a really great mood by Saturday morning!

Grandma Mary, Michael's mom, arrived on Tuesday, 11/7, from Tennessee. She will be staying with us and spending time with the kids before leaving next week. The kids are all so happy that she is here, and Elizabeth now has a steady back-scratcher. The kids have off tomorrow for Veteran's Day, so hopefully we can make good use of the three day weekend and have some Grandma fun.

Please add Tanner to your prayers. She has been doing really well since her surgery on Halloween, and she is another cancer kid who doctors have given up on in the past, but who keeps proving them wrong. She gives us hope that Elizabeth can keep doing the same--proving the doctors wrong.

Elizabeth is still loving every second of school. When they had to draw what they want to be when they grow up, Elizabeth drew a Disney Cruise Ship and put a little Elizabeth on it. She said she wants to work with the Make-A-Wish kids on the Disney Cruise ship so she could have fun and live on the boat. So I guess the Disney Guest Relation Make-A-Wish ladies (Nadia and Lynn) made a huge impact on Elizabeth! Elizabeth already promised her teacher, Mrs. Preis, a discount.

As always, thank you Angels for showering Elizabeth with your love and care. Angel Denise, she wore the pink shirt you sent her for school pictures since she got it only a couple days before and fell in love with it. Angel Pat, she wore the pink headband you sent her from your cruise for her pictures as well. Angel Janet, she plays with her dancing princesses all the time, and wears her Fairytopia mermaid mini doll necklaces to school every day faithfully. Angel Barbara, Elizabeth carries the fun pages you send in her purse and pulls them out to do everywhere--the car, the hospital, on errands. Thank you. She has received the most amazing books (and LOVED getting the Magic Slippers since she didn't have it but it was a favorite for read-alouds at ballet class), collections of stickers (which she uses DAILY to create amazing artwork--I have quite a gallery collected which is priceless to me), and beautiful handmade cards. There are dozens of ChemoAngels who make Elizabeth feel incredibly special. And also a special thank you to those of you (Angel Jenn, Angel Pat, Angel Kathy, and more) who have sent a little something for her brothers, too. They are often left out (by us included!), and they feel extra special when Elizabeth's special Angels send a note to them.

The most important thing we can ask from anybody is that they pray for Elizabeth. Please remember her in your prayers. Pray that she stays strong, that the thirteenth chemo agent does the trick, and that she beats this monster.

I almost forgot to mention... On Friday morning (same day we had CHLA pictures), more hair than normal came out on Elizabeth's brush. Then globs came out. She still has hair at 6 days and counting, but it is thinning. She hasn't lost hair since being on her first chemotherapy treatment (doxyrubicin and cisplatin) in August-October 2004. Her hair had just gotten long enough to put it in a ponytail. We don't know if the shedding is temporary or if it will continue until it all comes out, but it is really bothering Elizabeth. She is pretty blue about it, and coupled with the probably-a-seizure incident, this past weekend has taken it out of her and all of us. I hate seeing her go through this. She is afraid to sleep because she doesn't want to have another seizure, and she gets all in a funk when she thinks about her hair. Please pray that having Grandma Mary here will help cheer her up and pray that Elizabeth doesn't get too caught up in the bad stuff. We want her to enjoy every moment!

Feeling good

2006-10-02T12:40:00.000-07:00

Elizabeth has been feeling pretty good the last few days.

She started school for the very first time ever last Monday. She loves it! We go (since I stay with her) from 8am until about 10:30am every day. Then we come home and bring little brother Matt to PM Kindergarten at 10:55am. We pick him up at 2:25pm when he gets out. It's been a little busy with all the back and forth, but thankfully Dad is home with Matt and Danny and can run things in the morning while we are in first grade. Elizabeth loves it. Her teacher (Mrs. Preis) totally rocks and the kids in the class adore her. They are so sweet, and one little girl gives her pencils and pens and always sits next to her during rug time. It has been so good.

Elizabeth started thalidomide on Tuesday last week and it kinda knocked her out for a few days. One of the side effects is sedation, but we've moved her dose up from 8pm to 4pm and that seems to help. She's not as tough to wake up in the morning now. Her dose increases this Tuesday, so I expect she'll need to adjust to the higher dosing again and we'll probably see some more grogginess. This week we're also supposed to add etoposide, but we're still waiting for the pharmacy to call us with the delivery information...

Elizabeth has also started on glyconutrients. We are friends with a family that has a survivor (way to go McKenzie!) who has only good things to say about the products, so we're trying them. At this point we really have nothing to lose and everything to gain. It's been only a couple days, but Elizabeth seems to be feeling better physically any way, so that's good.

We had a lot of fun at the Make-A-Wish event at Cold Stone, hanging out with pirates and Miss Kathy from Make-A-Wish. Dave, the Cold Stone owner, was a perfect host and really took great care of us. Miss Kathy even bought us dinner! We met a lot of people who came for ice cream and really took the time to meet Elizabeth and Dave made sure everyone knew she was fighting cancer. So many kind people promised to pray for her. There were a couple times people came up to meet her with tears in their eyes. It was amazing to see how touched they were by my little Princess and her struggle. It did me a lot of good.

On Saturday we got to see our Michael Hoefflin Foundation friends at a Family Day event the Paseo Club in Valencia hosted. We love all of them so much. Sue and Chris Hoefflin do so much to help us in our everyday lives. We got to see our friends Ayesha, Eric, and Candye, who do a lot of volunteer work with the foundation as well. And of course the other families! It was a good afternoon full of swimming and candy and bouncing.

We took the kids to Disneyland Sunday evening. It was the first time for us in about 4 months... we haven't been there since Elizabeth's birthday at the end of May. Elizabeth only spent half the time in the stroller (instead of all the time!), so I know she's feeling pretty good. I can only pray that the only tumors she has are in her lungs, and that the supplements will help the chemo work better, and that she will beat this. We've already been told that the fight is over and that we're just buying time waiting. I know the reality. I'm just so hopeful because she is feeling so good right now. Maybe it's because she is on minimally toxic chemo, and things are a little better before they get much worse, but I'm still hoping it's a miracle in the making.

Please keep her in your prayers. Thanks for checking in.

Cold Stone Creamery Make-A-Wish Event TONIGHT!!

2006-09-28T13:45:00.000-07:00

At LA County Cold Stone Creamery stores tonight from 5 - 8 pm, the month long Make-A-Wish Foundation fundraiser will come to an end. We will be serving as Wish Ambassadors at the Burbank store if anyone out there wants to swing by for some ice cream. Here is the exerpt from the Make-A-Wish website:

Cold Stone Creamery Ice Cream Social
Friday, September 01, 2006 — Thursday, September 28, 2006 Throughout Los Angeles County
Cold Stone Creamery® will fulfill more than just ice cream wishes and waffle cone dreams in September as Cold Stone Creamery stores across the United States launch a month-long fundraising effort to benefit the Make-A-Wish Foundation. In addition, for a $1 donation, Cold Stone will also invite ice cream lovers to inscribe a message on a special Make-A-Wish star to be posted on the store wall throughout the month.
The event will culminate on Thursday, Sept. 28, when participating Cold Stone Creamery stores throughout Los Angeles county will hold special family activities from 5 to 8 p.m. and will give those who donate to Make-A-Wish a free piece of yummy ice cream cake!

9/15/06 CT scan results

2006-09-19T20:23:00.000-07:00

Still working on getting all those Cruise pictures uploaded to an online album (half way done), but soon they should be available for viewing and even ordering from Walmart.com. Once I'm done, I'll post a link so you can be inundated with all the cruise pictures! Until then, here are a few...

All the kids with Pluto
Mike and Matt in front of the Flying Dutchman (Davey Jones' pirate ship from Pirates of the Caribbean: Dead Man's Chest) anchored at Disney's private Bahamian island, Castaway Cay
Elizabeth with her new mermaid (from the Atlantis Resort in Nassau), pooped out. No, that is not a hospital bracelet on her ankle--it's one of the bracelets every child gets to wear on the ship!
Elizabeth hand feeding a ray at Castaway Cay. She wanted to be in charge, so the instructor let her have his spot! This was by far one of Elizabeth's very favorite things we did. I'm so glad we had the opportunity for it.
Happy Princess!

So that's the good part of this post.

Elizabeth's scan results weren't good. She has multiple new nodules in her lungs--both right and left. The original nodule appears unchanged, whatever comfort that is supposed to be. There are changes to her liver which her doc seems to think is tumor. Because her liver has been getting more and more fatty, the appearance of "normal" liver density tissue has him thinking it is tumor and not new regenerating liver. I'm praying that the results are because the Milk Thistle I've been giving her is actually detoxifying and improving her liver. Her bilirubin level is 0.2 (GREAT!!), which is much lower than the over 3 she had been in July, so the Milk Thistle is at least improving something even if there is tumor in the liver.

Elizabeth's AFP levels had been increasing 6000 every week, and were 51,100 on 9/8.
On 9/15 they were 44,600--a DECREASE of 6000! So that is good news, although 6000 is more like a drop in a bucket among a level of 45,000.

Every day I am continually astonished and touched by the generosity and care shown to us by the ChemoAngels. Elizabeth is being special-angeled again by these incredible ladies, and just about everyday she gets something else in the mail. The beautiful, sometimes hand made!, cards that come filled with love (and STICKERS!!) not only give her something to look forward to, they also make her smile and giggle which makes me look forward to mail time as well. Thank you so much.

Things just don't get easier on this road. I'm getting so tired of all of it. The continual barrage of bad news, the constant worry, the waiting for things to get worse... I want a miracle so desperately.

quick update

2006-09-13T08:18:00.000-07:00

Still working on getting cruise pictures uploaded to the website. Hopefully this week.

This morning we are meeting with the LAUSD (Los Angeles Unified School District) doctor to discuss Elizabeth's possibility for starting first grade next week. All she wants right now is to go to school, and she never has. I'm getting her in.

On Friday, the 15th, we will have the dreaded "what the hell is going on with massive increases in tumor marker levels" scan. I'm terrified. Please pray that whatever is there can be treated, either by surgery or going back on Sutent.

On the same day we also have Elizabeth's IEP (Individualized Educational Plan) meeting with LAUSD. We are hopeful that everything will go smoothly (but prepared just in case it doesn't), and that Elizabeth can start going to school for a few hours a day next week. Without knowing the results of the scan and how bad her cancer has spread, we don't know how long she'd even be able to attend school. She wants it so bad, and I want to give her as much time being a student as possible.

Take care and thanks for the continued prayers.

Home

2006-08-31T18:51:00.000-07:00

Home at last

She flies

2006-08-31T14:22:00.000-07:00

The Disney Princess flies home! 30,000 feet, munching, and watching movies.

Cruising

2006-08-31T11:50:00.000-07:00

Smile.

On land

2006-08-31T11:47:00.000-07:00

Taking off from orlando now. All is good!

We escaped Ernesto, mostly!!

2006-08-30T07:25:00.000-07:00

Well, we spent the day at Disney's private Island, Castaway Key. Elizabeth absolutely loved the RAY encounter. They were swimming around everyone and they all got to feed them. It was quite amazing. When we can get the pictures up, I am sure Mom will recap it.
Towards the end of the day, we got the edge of Ernesto. Winds shifted from 15-20 mph to 50-60 mph in about 5 minutes. Mike was snorkeling and we were all on the beach. Instantly, we tried to shield from the rain and get Mike out of the water. A bit scary when the power boats were flipping over and the lifeguards surfboards were skipping across the water.
Everyone was safe in the end and we got back on the boat drenched.
More to come. Looks like we will get into port late because of Ernesto as it moves up, but right now we are in beautiful water and the day is gorgeous.

Bon Voyage!!!

2006-08-27T14:23:00.000-07:00

We are sailing! This is the first pic while moving. Rooms are great and everything seems set up really well. No cell coverage once we are out, but we will check in when we can. Bye for now.

We're off!

2006-08-26T10:14:00.000-07:00

Limo to the airport! Thanks Make-a-Wish! What a way to travel. Plane taking off now. Ya!!!

Happy b-day mom!

2006-08-25T19:52:00.000-07:00

Happy birthdbay Mom! Birthday dinner and testing the mobile posting. More pics to come on the cruise.

Look for up to the minute cruise pictures(hopefully!)

2006-08-25T17:02:00.000-07:00

So for the cruise, we are going to try something new. Automatically sending pictures from the cell phone to the blog. Sounds cool, but it may not work when we are out of the country, but we will try. This was a test one in the living room as we are finishing getting everything ready. Elizabeths limo arrives bright and early at 7:10 am tomorrow morning!!

Barbie Fairytopia Live

2006-08-19T20:26:00.000-07:00

Today Elizabeth and Mom were fortunate enough to spend the morning at the Kodak Theatre (in Hollywood, home of the Oscars) watching the Barbie Fairytopia Live Stage Musical show. Not only did we get to see the show (with some pretty good seats), but we bought special event tickets. All of this morning's show proceeds were being donated to the Make-A-Wish Foundation, Los Angeles Chapter--an annoucement was made that the show raised over $13,000 for Make-A-Wish! There was a special reception for anyone who bought the Wish tickets where the girls all got to meet the star of the show (Erin Elizabeth Coors), Barbie, dressed as Elina (the fairy star of the DVD movie Fairytopia, for those of you without little girls at home). Grandma Kirsten gave Elizabeth a new fairy costume on Thursday, so she of course had to wear it to the show. It was a wonderful experience for us both, getting to do something so normal amongst other mothers and daughters having fun together. We also got to meet some of the extremely nice ladies who work at the LA Make-A-Wish office. As part of the Wish package, we each got Fairytopia gift bags, too. Elizabeth could not have been more thrilled with the whole event. She insisted on getting the CD recording (and a stuffed Bibble... seen below being fed ice cream) as her souvenir purchase so she can listen to the show over and over again. She has already played it 3 times so far today. I think she really liked the show...

Elizabeth and Elina

Getting ready for the show to start... and getting EXCITED!!

Posing outside of the Kodak Theatre

Feeding Bibble ice cream at 31 Flavors

Other news...

We had our doctor's appointment yesterday with Elizabeth's oncologist, Dr. Marcio Malogolowkin. No CT scan yet, probably in 5 weeks we'll have it. Elizabeth has to go at least 8 weeks from her last surgical procedure (which was her VAT procedure circa July 10) before she can go back on any anti-angiogenic drugs (i.e. Sutent, Avastin, Tarceva). We still think that the Sutent was working for the short time she was on it (two rounds of 4 weeks on, 2 weeks off), so we'd like to get Elizabeth back on it ASAP. Any further surgical procedures would set us back waiting even longer before we can get her back on the Sutent, so, for now, until anything would indicate otherwise, we are sitting tight waiting for the 8 weeks to be up. Elizabeth is continuing on the daily 37.5 mg Cytoxan (cyclophosphamide) and weekly vinorelbine metronomic (steady, low-dosing) regimen in the meantime. New AFP levels will be drawn on Thursday, when Elizabeth is back to the hospital for her weekly vinorelbine. Pray for some good news with those levels evening out (or better yet, dropping). Her hemoglobin has been holding steady since she was transfused with red blood cells (donated from Mom--no yucky Daddy blood) two weeks ago, so that at least is good news.

We're getting ready for the Disney Cruise and will be leaving one week from today! Elizabeth is very excited and today got all giggly when she saw a limousine in Hollywood... because a limo is coming to pick us all up and bring us to the airport and start our Make-A-Wish trip! The boys are starting to get bouncy, too, every time the cruise comes up. This week will be busy with laundry and packing and last-minute preparations, and the time will pass quickly, I'm sure. I worry about the amount of luggage we will require, though... afterall, a princess does travel with quite a wardrobe, both costume and not!

Thanks again for checking in on Elizabeth. Thankfully she has been feeling pretty good the last few days. Hopefully it lasts so that she'll be able to really enjoy her special trip.

Very High Tumor Markers

2006-08-15T19:04:00.000-07:00

I had been putting off doing an update because I had been hoping for some good news on Elizabeth's status to post. Unfortunately, I don't have any great news to share about how the new treatment is going so far.

When she was in the hospital for her infection (6/20-7/21), her AFP levels were checked (circa 7/16). It was the highest it had ever been at 6600. The day she started the cyclophosphamide/vinorelbine regimen (7/28) her AFP measured 15,900. And this past Friday, 8/11, after being on two weeks of therapy, her AFP is up to 27,500. We have never dealt with tumor marker numbers being so high.

As of her last CT scan (7/10), there were no new apparent gross tumors growing. We are currently lobbying to get a CT scan sometime next week. We have three main concerns. First, her AFP numbers are very much out of control, and something is certainly growing somewhere (or everywhere...). Second, she is off the antibiotics she went home on after the hospital stay, and we want to make sure the infection truly has been taken care of. And last, the reason why we are pushing to get it next week is because Elizabeth's Make A Wish trip has finally been scheduled and we leave on 8/26. We certainly don't want to be away from CHLA and have any major medical issues come up!

So on a more positive note, Elizabeth's Disney Cruise is finally going to happen. The boys are almost as excited as she is! I'm glad that we're doing this, but so apprehensive on so many levels. We'll be cruising for 4 nights, and I worry about making sure she's fine and won't need to be hospitalized for the time we're gone. Also, she only get's one Make A Wish. So, in a way, it's very final. There will no longer be a Wish trip to look forward to. I had been putting off doing it because in a way I'm scared to go. It's almost like admitting we're near the end and sort of fulfilling a dying wish. And I'm not ready to go there yet (like I'd ever be!).

So please keep her in your thoughts. Say a prayer that she has enough strength to keep fighting this thing. She's dropped weight over the weekend again, and she needed red blood cells transfused two Fridays ago. It's so hard to know whether or not she's going to bounce back this time or not. She's surprised us so many times before. I just pray that she has some more surprises in her.

Thank you so much to all the ChemoAngels who have put countless smiles on Elizabeth's face again! She has been showered in cards, letters, packages, and love. I am continually amazed at how much good a simple card in the mail from an angel will do for Elizabeth. As we get further into this, each and every smile of hers becomes more and more precious to us. I am so very thankful to each and every one of you who has blessed us in this way.

Thanks for checking in on her. I'm sorry there isn't better news to share. I wish the day would come that I could post that she was in remission, but sadly we aren't (and may never be) there.

New Treatment

2006-07-30T11:23:00.000-07:00

We met with Dr. Marcio on Wednesday, July 26th, as planned. We were given two options for treatment: 1) stay on the Sutent, or 2) try a new "metronomic" approach using cytoxin (cyclophosphamide) and vinorelbine (a relative of vincristine and vinblastine).

While we feel that the Sutent was helping to stabilize Elizabeth's cancer progression, Dr. Marcio is rather certain that it caused Elizabeth's last month-long hospital stay, much like the Avastin caused her 2-week-long August 2005 hospital stay. Elizabeth's current state of health is improving, but her body is still recovering and she is still somewhat fragile. Risking another "bleed" and possible subsequent infection at this point is not a wise choice. So we are going with option #2.

Elizabeth received her first infusion of vinorelbine on Friday, July 28th. She started her oral daily cytoxin Saturday morning. So far she is not experiencing any noticeable side effects, and we hope that continues to be the case. The treatment plan calls for vinorelbine infusions on days 1, 8, and 15 in a 28 day cycle, and a dose of 37.5mg cytoxin every day continuously (oral pills). We will be regulars at CHLA again on Fridays, at least for the next three weeks while we finish out this first round. If it isn't having any effect, we will then explore returning to the Sutent and/or whatever other chemo/drugs we haven't already tried in the past 2 years (there aren't many left!). Elizabeth's body needs to be far enough out from her recent surgical procedures (she had several during her 6/20-7/21 hospital stay) that we wouldn't be risking a bleed before we re-start Sutent.

This decision wasn't easy. Dad and I really do believe that the Sutent was having a positive effect in holding the cancer at bay. And we aren't abandoning the hope of using Sutent again in the future. Elizabeth just can't take another month-plus long hospital stay so soon, either physically or emotionally. We are hoping that the vinorelbine/cyclophosphamide continuous low-dosing will have the desired effect of continuously chipping away at the cancer cell membranes and keep it from spreading until she can get back on the Sutent, either in combination with the new treatment or instead of it.

Elizabeth is starting to get back her strength, though she isn't 100% yet. She has been showered with Angel mail yet again, and it has helped raise her spirits immensely. I can't even begin to describe the positive effect the stream of mail has on her. She is always happy to get cards and presents from relatives, but there is something intrinsically magical about getting special cards from people who she has never even met before. It makes her feel so very important. Thank you.

Today we are planning a big family outing--Costco shopping. Our first time out with EVERYBODY in the past two months. Elizabeth is looking forward to a hot dog lunch, probably followed by a churro, before we venture into the Sunday shopping Costco mob. Going to Costco may not sound very fun, but Elizabeth loves weekend Costco trips because they have "tables" as she calls them. Tables and tables of SAMPLES. She really is a simple girl at heart, and free finger foods make her smile! So that will be our big adventure for today. Our family schedule will finally start to slow down a little so we can get to planning our Sea World visit and Make a Wish trip, not to mention starting school again. Hopefully we'll be able to have some family fun time out of the house in the next week or two.

Thank you for your continued prayers. Please pray that this new treatment will be instrumental in stabilizing her cancer spread, at least until we can start back on the Sutent. Her tumor markers are over 6600--the highest they have ever been. Ever.

Going Home!

2006-07-21T07:37:00.000-07:00

Well, after being in the hospital for a month and a day (no, that's really how long it's been--I'm not being figurative!), Elizabeth will FINALLY get to come HOME today! Of course, it's been so long that I don't think I'll actually believe it until she is home in her bed. This marks the end of our longest hospital stay ever... and hopefully she won't have to endure one again for a good bit of time. There were so many little things going on (and big things, too) with this stay that it's really good to get her home. We still think CHLA is the best place for her, and her primary docs there are the best ever, but it has been more than a little frustrating dealing with hospital policies and mix-ups this time around. I'm so excited to get her home!

Mike is off to camp again--this time to Camp Ronald McDonald for Good Times near Idyllwild. He'll spend another week at camp and once he's back we can hopefully get some quality family time all together again. We're going to work on planning that Make A Wish trip that Elizabeth has been waiting for, and try to squeeze in a couple of days in San Diego once she feels up to it. We will need to have oxygen for her at home for a little bit still as her lungs continue to heal, and she will still be getting IV antibiotics, so we've got a couple of weeks before she's up and about again it seems. We will discuss treatment plans for her cancer and precautions to protect her liver with Dr. Marcio next week, and hopefully get some sort of plan worked out.

Please keep Elizabeth in your prayers. It's beginning to feel like the path we're on is taking a turn that I don't want to go down just yet, although no parent is ever ready for that I'm sure.

STILL HERE IN HOSPITAL!!!!!!!!

2006-07-19T15:37:00.000-07:00

Well, sorry for the delay in getting an update on the hospital stay. It has been a very exhausting stay. Mom and I have been switching off about every 5 to 7 days. With one of us at the hospital and the other home taking care of the boys, it has been difficult. It is hard to believe that we have been in the hospital for an entire month. This stay has been full of more “small” problems than I could ever have imagined. We have had more errors this stay than all other times put together. Everything from Elizabeth de-sating, turning blue and passing out from accidentally being disconnected from oxygen with no one responding to the alarm to incorrectly reported lab results causing her to be needlessly exposed to VRE( a bacteria you don’t want to have in a hospital).
At any rate, we have been plugging on, but it has taken a toll on everyone emotionally and physically. Part of the reason an update has been delayed.

We just want to get her home as soon as we can. Since the last update, she successful had the original pigtail tube removed without incident. The fevers continued and the infection was still substantial in the lungs. Her normal surgeon, Dr. Stein, performed a VAT(Video-assisted thoracoscopy) in which they used a camera to go in the chest wall and scrap the empyema infected goop away from the inside chest wall and off the lungs. It was so thick that the antibiotics would not have been able to get to it. She has improved steadily since then. Elizabeth is still struggling with the fluid balances and that is making it difficult to fully heal and re-expand the lung. We will most likely go home on the IV antibiotics and oxygen. However, it will depend on exactly how she is doing when we can get her out of there. There seems to be a push to try to get her out soon. Last Monday was supposed to be the day, then it was moved to tomorrow and now they aren’t sure.

As to the impact of her liver function issues and treatment, those decisions are on hold until after we get through this period. More to come. Please keep prating for Elizabeth.
Dad

Day 17 of this hospital stay

2006-07-06T11:41:00.000-07:00

Well, today looks to be the day to get the original tube out. Everything has been holding steady with the bleeding site. Ya!!! The second tube will come out today and then, we will be down to the urinary issue in order to take about coming home! Once we get her back to normal and all the excess fluid out, we should be on the right track.
With the CT’s that we have done recently, it appears that Elizabeth’s liver is struggling with all of the treatments. Not sure what that is going to mean for her treatments, but we will see.
Off to the hospital for another switch out with Mom. More to come.

Bleeding update

2006-07-04T13:21:00.000-07:00

Well, after a very eventful day yesterday, Elizabeth is holding steady.
The site where the large second chest tube was removed bleed very heavily yesterday morning. It was quite traumatizing for both Mom and Elizabeth. Pressure wasn’t stopping it. Once the surgeon was able to remove the entire bandage and find the bleed site, direct pressure to that spot worked. New bandage and more pressure held it for a while. It started bleeding once more and then we convinced them to give her platelets. While Elizabeth platelet level is about normal, since she has no spleen she is normally more than twice normal.
At any rate, she has been stable now since about 1 pm yesterday. The original tube is still in place and will come out soon (but not too soon because of the bleeding problem). She is finally taking off some of the weight and things are moving in the right direction. If we can get her urinary problem on track, we should be in good shape provided there are no complications with taking out the last tube.

For now, holding and praying for the best. Been 2 weeks so far this time and that’s more than enough time.

More to come. Dad.

Still in the hospital

2006-07-03T07:07:00.000-07:00

Well, a lot of information about the hospital stay to catch up on. First, the fluid was in fact a bacterial infection. The pig tail drain that was put in is still there. Last weekend, another problem started. Elizabeth was not peeing. She began getting very puffy all weekend. Multiple attempts to make her pee by giving extra saline in her IV did not work. Mom had to say enough with the saline! Unfortunately, the brand spanking new residents did not want to listen to Mom’s insistence that this was not normal for Elizabeth. Monday came around and the attending and fellow saw her and said, “What happened!?!”. Upon weighing Elizabeth, she had put on 4 kg (about 8.8 pounds). The cause of that turned out to be very low albumin. Multiple doses of albumin and a continuous drip of lasix has helped to correct the problem, but she is still holding fluid.
The next major problem was an additional fluid area in the chest wall. This one was higher up and along the side and around the lungs. Last Friday night a chest tube was put in to drain this area. This brought a great deal of relief to Elizabeth and helped make her much more comfortable. That tube was removed yesterday early evening. It seems now that the site is not healing properly. It has been having abnormal bleeding and we are not sure what is causing that.
I will try to get more updates posted sooner this time.Please keep Elizabeth in your prayers.

Happy Anniversary and hospital update

2006-06-23T23:55:00.000-07:00

Well, it is one of those anniversaries that are hard to celebrate. It has now been over 2 years since Elizabeth was diagnosed. Friday (today) marked the big day. Elizabeth spent most of the day sleeping. The tube went in successfully late on Thursday. There were some issues with her coagulation studies that put it on hold, but that was quickly resolved with a lot of help from everyone in Radiology including Dr. Stanley who personally walked the new blood draw over to the lab. It took less than 20 minutes to get the results.
Early information on the cause of the fluid from samples is leading to some type of infection. Elizabeth has already been on several antibiotics with no improvement, so they are leaning to a fungal infection. It will be days before we get any concrete answers. Meanwhile the nasty thick fluid is draining out, so that is the most important thing right now. She will probably be in the hospital for several more days until they figure out what is causing it for sure.

I added a link on the right to the web pages on the conjoined twins that were separated at Children’s last week. They have a lot of media pictures on the site. It was eerie because it mimicked Elizabeth’s surgical stays so much. If you take a look, it gives a good idea of the process Elizabeth goes through for each surgery.

Hospital stay - Need to drain

2006-06-21T16:21:00.000-07:00

Elizabeth’s symptoms worsened quite a bit yesterday. The side pain was much worse and she couldn’t stop coughing. Seemed like the fluid was constricting her lungs more and more. After a brief trip through day hospital, Marcio got us set up to admit in the hospital. Worked out well with room. Mom got her favorite wing on the fourth floor and a “B” bed to boot. Extra bonus with no room mate last night, but that can change quickly.
As of yesterday, they could not figure out when Radiology would be able to get her Elizabeth in to put a drain in using CT guidance. After much debate about Radiology’s schedule, today Marcio got vigorously involved. For now, she is scheduled to have the drain put in tomorrow afternoon.
In the meantime, she is doing well with the Tylenol with Codeine and is her standard assertive, precocious self. Charming and keeping all in line. It is so nice to see her with so much spirit even when she clearly feels like crap. She is a tough girl.
Till there is more news, Elizabeth is hanging out in 436B at childrens.

CT scan results from Friday

2006-06-19T17:25:00.000-07:00

We're still waiting for the final report, and to talk to Dr. Marcio and Dr. Stein, but for now this is what we know...

Our wonderful NP case worker, Patricia, was able to discuss the results a little and faxed us a copy of Friday's CT scan preliminary report. It appears that Elizabeth has quite a bit of fluid built up under her right lung in her right liver region. I couldn't tell by the report if it is above or below the diaphragm, or both, and it may be that the CT scan isn't clear about it either. There is definitely some fluid in the liver region regardless, I think. There is also evidence of severely diminished lung capacity in the mid-right lobe area. The nodules (cancer) that was in the right lung appears to be unchanged since March, and the potential nodules in the liver area that have been monitored also appear unchanged, if not better.

So the report sounds somewhat better than we had been expecting, but that could be because I'm reading it and not looking at the scans myself. There was noted "scattered streaky lung disease" that was not attributed to the cancer, though, that has me concerned. All things we will discuss with Elizabeth's docs in the very near future.

While it doesn't seem that tumor resection is necessary at this time, the fluid will most certainly have to be drained. We went through fluid drainage last August... that visit started with a normal blood draw visit, led to an x-ray, then an immediate CT scan, and a drainage tube inserted followed up with an unexpected 15 day hospital stay. Hopefully, any hospital stay this time might be shorter!

I'm relieved by one of the last sentences of the report, though.
"No new foci of metastasis are seen." Good news.

2006-06-17T10:31:00.000-07:00

This is Dr. Stein and Elizabeth in April at one of her surgical follow-up exams.

Catching up on Updates

2006-06-17T09:55:00.000-07:00

I must first apologize for taking so much time away from the blog. I know we have so many people who care about Elizabeth and are praying for her, and we appreciate your concern. I will try to keep this really brief and stick to the medical details for now. Elizabeth has been enjoying her birthday (which seemed to last the entire month of May and into June thanks to her amazing Angel friends and everyone else present in her life... thank you everyone!) and we have been focused on family time.

As of the last update, we were just finishing up our first 4-week round of Sutent. Elizabeth was feeling really really good during the first 3 weeks on the drug. Then the side effects started to show up--mainly just fatigue and minor aches and pains with low grade fever occasionally. Her AFP levels were:
Post surgery, two weeks before starting Sutent: ~200
Day 1 on Sutent: ~600
Day 15 on Sutent: 489
Day 29, first day off Sutent: ~660

We then were off Sutent for two weeks. Elizabeth continued to feel more lethargic and started having chest pain and right shoulder pain more frequently and with more severity. Adding 10mg Pepcid with breakfast and dinner seemed to help the chest pain quite a bit (phew! only heartburn/indigestion... a sigh of relief), but there wasn't much we could do about the shoulder pain (probably referred pain from her right lung area again) except give her Tylenol. At the conclusion of the two weeks off treatment, Elizabeth's AFP had sky-rocketed.
June 2, Restarting Sutent after two weeks off: ~2500

This indicates two things... one, being off treatment is a bad thing. Elizabeth's cancer goes wild. Two, the Sutent seems to keep the cancer steady.

After having been on the Sutent again for two weeks now, Elizabeth had another AFP draw today. It is at ~2700, which is virtually the same as it had been when she restarted. Since she was getting a blood draw at the hospital today anyway, we had requested a chest x-ray. Elizabeth has had a lot more shoulder and right chest area pain and we were even considering the possibility that she may have a central line infection causing the pain. The chest x-ray showed something has definitely further developed in the lower right lung area, the same area that the pebble sized tumor detected in April was. Since Elizabeth has been having more symptoms coupled with the x-ray results warranted an emergency CT scan early this evening.

We are extremely fortunate to have two amazing doctors taking care of Elizabeth. Dr. Marcio Malogolowkin is the best oncologist we have met, and we really feel like he cares about Elizabeth as if she were family. It's not often that patients can say that. He contacted Elizabeth's surgeon as soon as he had the x-ray results to give him a heads up. Elizabeth's surgeon is the quite capable Dr. James Stein, who is plastered all over the news here in Southern California because he headed up yet another conjoined twin separation surgery two days ago. In fact, Dr. Stein had just finished a major press conference before running into Elizabeth and Dad at the hospital this evening. He said he had already talked to Dr. Marcio and would be reviewing Elizabeth’s CT scan tomorrow. Tomorrow is Saturday, and he just finished over 24 hours of twin separating surgery, yet he is reviewing her scan tomorrow. Yes, I do think we are in good hands.

Obviously, we are quite possibly looking at surgery in the near future. We are tentatively putting the Make-A-Wish trip (Elizabeth wants a Disney Cruise) on hold. It is just so hard to plan anything with this pesky cancer always getting in the way. If only the only thing we had to worry about was vacation planning…

In the meantime, Elizabeth just isn’t feeling like herself lately. The Sutent is starting to kick her butt. She is quite puffy (lovely prednisone look) and tired and achy. Sometimes her heart races, which scares her, and she gets sweats and mild fevers. She still has plenty of fun, though, and has anywhere from two to five good hours in the day when she isn’t too whiny, too fatigued, and too irritated to enjoy herself. One of the more odd effects of Sutent is hair color loss. She has white roots growing in right now.

So things are very much on edge around here for now. So much uncertainty. Welcome to cancer.

One of our dear friends, the Family Outreach Coordinator at the Michael Hoefflin Foundation (the link is on the side bar!) is reliving the cancer nightmare. Lisa DeLong, whom I’ve mentioned many times here before, lost her first son, Justin, to leukemia six years ago at the age of 15. Her six year old son, Jacob, was just diagnosed with leukemia last week. It just seems so impossible and completely unfair. Lisa and Dave also have two daughters older than Jacob. Please keep the family in your prayers. I simply cannot imagine the horror of another cancer diagnosis.

Feeling better!

2006-05-09T19:01:00.000-07:00

Yay! Elizabeth is feeling back to her old self again... she came through the door at 6:30pm after a full day at the hospital yelling for more food. Mom couldn't be happier. Hopefully today was simply a one day thing...

Not feeling so well today

2006-05-09T13:16:00.000-07:00

Elizabeth is running a low grade fever that she seems to have woken up with. She has completely lost her appetite (VERY rare for her!), and didn't even want to finish the warm milk I tried to get her to drink. This morning she was nauseous and she has a huge headache, complete with light sensitivity. Her blood sugar is normal, so we know it's not related to that.

Elizabeth was due for a blood draw at CHLA today anyway, and Dad was already planning to take her in so I could have a chance to catch up with laundry (approaching mountain status). They are there now. We were planning to have a PA look at her while she's there, just in case there is something obvious that we are overlooking.

Elizabeth has been on Sutent since April 21 (almost 3 weeks now). Up until now, she has felt GREAT! It has been really great to see her feeling so good and full of life. We have had the chance to do a lot together as a family (pictures will be posted soon!) and are even planning our Make A Wish trip now. One of the side effects, though, of Sutent is fever... hopefully that is all this is. When Elizabeth was on Gem/Ox therapy she also had frequent fevers, which was determined (after 5 hospital emergency fever visits) to be chemo side effect related.

Elizabeth's AFP levels were checked on March 28 (20 days post surgery) and were down to 229. They had risen to 601 by April 21, the day we started back on therapy. She will have them checked again today. I fully expect them to be higher--3 weeks probably isn't long enough for the Sutent to start bringing it down (assuming it does).

Please pray that this recent "sick" feeling of Elizabeth's goes as quickly as it came, and that it is NOT a sign of things to come. I'm praying that it is simply no more than a little dehydration.

Recent updates

2006-04-21T12:17:00.001-07:00

Here is the update we posted to the Caringbride webpage for Elizabeth recently:
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Monday, April 10, 2006 7:36 AM CDT

Hi Everybody!

This message will be kept pretty short since we are away from home...

We are on a family trip in Tennessee right now. Elizabeth and her brothers are having a great time playing with their cousins and hanging out with Grandma Mary, Grandpa Terry, Aunt Tammie, Uncle Dave, and Uncle Joe. There are plenty of animals to keep Danny's and Matt's interest, and Mike is convinced he can talk us into taking one of the dogs home (NO!!)... We left on Friday and will be here through Easter. Elizabeth was concerned that the Easter bunny may not find us, but I explained that, much like Santa, the Easter bunny always finds girls and boys. Then she mentioned that it would be really cool if he hid Easter eggs at our house, too, so they could find those eggs when we get home. Ugh... I wish she had said something before we left!!

We had a meeting with Elizabeth's surgeon on the Tuesday before we left (April 4). I'm still in shock and I don't know what to make of it, or what it means for the future, BUT he discussed Elizabeth's final pathology with me. Dr. Stein pulled 11 regional lymph nodes and 2 distant lymph nodes for biopsy. ALL 13 lymph nodes showed NO SIGN of cancer. So is Elizabeth's cancer lymphatic? Probably not... although there is the possibility that the most recent tumors had started in lymph nodes and then completely overtook them leaving no normal lymph node tissue. We are pretty torn over Elizabeth's oncologist's view (it's bad) and her surgeon's view (it's still treatable), but regardless, clear lymph nodes are still a really really great thing. Could this be our miracle?

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We have since returned to California from our trip. It only took us 15 hours to get from Grandma and Grandpa's house in Tennessee back home on Tuesday, April 18. I think we are all still a little tired from the travel!!

Since then, Elizabeth had a CT scan on Wednesday, April 19, and met with the GI docs that same day as well.

Dad is with Elizabeth at CHLA in a meeting with Dr. Marcio (Elizabeth's oncologist) and Mom is home with the boys still trying to get everything ready for Family Camp at Camp Ronald McDonald for Good Times (near Idyllwild, CA) that starts later today. Looks like we will have to rent a car for the trip since the van started acting up on the way to the hospital according to Dad. Just another bump in the road...

While we did get news that the lymph nodes were clear in the final pathology from Elizabeth's March 8 tumor resections, we are getting some initial reading from the CT scan that is NOT good. I am anxiously awaiting Dad's call once he is done in the meeting with Dr. Marcio, but the part that I was listening in on wasn't good. It appears that Elizabeth has a new marble size spot in her right lung that is most likely new tumor. It is in the tissue somewhat near the location that she had biopsied in November 2005, but it is definitely separate from it and new, and appears to reside in the lung tissue itself.

Elizabeth will be starting on the Sutent (sunitinib) today at full strength for her size of 37.5 mg/day. Late last summer, it seemed that Elizabeth was developing lung mets, and when she started the Avastin (bevacizumab) it necrotized and liquified them causing her lung abscess that was drained in August 2005. It was further prepped for removal and biopsy in November 2005 which showed it as scar tissue (most likely had been malignant and the Avastin and IFL [irinotecan/5-fluoruoricil/leucovorin] got it). Hopefully this new and better version of drug similar to Avastin will get it now, too.

No matter how many times new tumors appear, it is always a swift kick in the gut. Dad is reviewing the CT with Dr. Marcio now and hopefully I'll get some more detailed information in a short while. Until I have a chance to post again, please keep praying that Elizabeth keeps feeling as good as she seems to be. Sometimes I wonder how she could still feel up to playing and running around and dancing with all that she has going on... her newest GI issues keep her running to the potty with diarrhea just about once every waking hour. I am praying that she isn't just trying to put on a happy face for us.

So here's my new prayer request list:
* that Elizabeth continues to improve,
* that the Sutent is tolerated and helps,
* that this new tumor is affected by the Sutent,
* that there are no other tumors lurking, at least for now,
* and that Elizabeth's cancer is not lymphatic.

Thank you everyone who has kept checking on Elizabeth and sending her messages (both electronic and postal). Our mailman had to deliver a pile of packages and cards when we returned from Tennessee. The boys all got mail, Elizabeth got mail and packages, and I am overwhelmed that there are still so many of you who stay so involved in Elizabeth's Story. We live this everyday because we have to, but there are so many of you who are right there with us who don't have to be. I don't know that I could choose to do it, and I am just so grateful to all of you who do. Thank you.

Met with Marcio today

2006-03-28T16:43:00.000-08:00

So, today was the day to meet with Elizabeth's Oncologist to figure out where we are going as she finishes recovering from the surgery.
She is doing very well. Very active, but she still is having the watery diarrhea. It is getting better, but it is taking time. Otherwise, she is doing great. She has her surgical and endocrine follow ups next week, so that will finalize where we are with that.
As to the oncology side, it was a tough meeting. The good news, most likely we will start another new, novel drug to try and keep the tumors at bay. It is Sunitinib, marketed as Sutent by Pfizer. It was approved by the FDA January 26, 2006. Being so new, he has to figure out prescribing doses and make sure we can get it. Should know by Thursday if it is a go for sure. For those that like the details of the drugs, it is both a protein-tyrosine kinase inhibitor and an anti-VEGF/anti-angiogenesis drug. It was released for GI stromal tumors and Renal Cell Carcinoma. IT working for RCC makes it worth trying with Elizabeth. It is simliar to the Tarceva/Avstin combo, but newer and covers more kinase paths.
The bad news, more and more the approach seems to focus on techniques aimed at slowing tumor progression instead of cure.
Well, tomorrow marks one year from when Mom started this blog.
This March is 2 years from her first oily stools after the pepperoni pizza and she is still fighting and kicking cancers butt. See..Elizabeth's caring page
Til next time.
Dad

2006-03-23T20:52:00.000-08:00

Okay, so Mom is really excited that she has TWO articles published on the ClubMom website...
Here is the link to the second article about being your child's healthcare advocate:
http://www.clubmom.com/display/231350?fromPage=/search/split.jsp

(In case you missed it, the link to a story about getting over baldness is in today's earlier post below... hint, hint)