Maybe we'll make February afterall...

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!

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

Somewhat stable...

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!

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.

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.

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!

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

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

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.

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.