Remembering Elizabeth

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

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

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

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

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

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

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

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...

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

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

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

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!

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.