Admitted for the New Year!

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!

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!

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...

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!

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

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

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!

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

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...

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...

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

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!

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

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

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.

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

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.