YAY for MORE POOP!!

Thankfully, Elizabeth has had two more large poops today. She is still having some tummy pain, but it's not nearly as frequent and doesn't seem to last as long. She was afraid to tell Mom because last time Mommy did a happy dance, and Elizabeth said it embarrassed her. So Mom (that's me) was very good about doing her happy dance in the other room.

I'm keeping this one short... since I've been accused of being verbose... mainly by my husband!! So I thought you all might enjoy seeing some more pics, since that is certainly what garners the most responses from you!

Here are pics of the Hill kids taken today:

Her Royal Highness (name courtesy of our new email pal Jodi) Princess Elizabeth reclining on the couch while watching PBSKids... her favorite pasttime ever since the poop issue came about.


Here is Mike showing off his strep throat...


And little Mattie sucking his thumb and holding his blankie. I don't know what we'd ever do if anything ever happened to that blankie. It was his Auntie Amy's when she was little, specially handmade just for her, so there really is no replacing it!


This is what Danny has been doing all day... when he's not crying and chewing on his fist because he's teething.


Hope you all are having a good week so far!

YAY for POOP!!

We are very very happy to announce that Princess Elizabeth has finally pooped! She hadn't pooped at all since Saturday morning (Friday night is when we went to the ER.), so this is a very BIG DEAL! Yay for poop!! (Yes, it is a little sad what gets us excited these days, but it really is the little things that can make a huge difference! We'll take any blessings, small or great, where ever we can get them!) And without being too descriptive, it was poop that had been there for quite some time. Hopefully now the tummy PAIN--it's been more than just an "ache"--will subside. Elizabeth has spent the last 3 nights wailing in pain off and on throughout.

We were comforted to know that this "condition" is not unusual during chemo, and even got a first hand account of someone else who went through the same thing... I wasn't going to use names here (privacy issues), until I realized it was a comment she posted here anyway so... THANK YOU DEB!! I (Mommy) had been so worried about Elizabeth's level of pain meaning something else, and Deb's message helped put my mind at ease.

And just while Mommy was typing this update, we have MORE POOP! This really and truly is exciting since it means Elizabeth's pain may start to lessen. Who knew poop could be so exciting?!

Another ER Visit

**Caring Bridge Page UPDATED**

~~Check out the Photo Album Page for 41 new pics~~

~~Click on the Link to the right labeled "Elizabeth's Guest Book"~~

Friday night was spent as yet another visit to the Emergency Department at Children's Hospital. Thankfully, Grandma Kirsten (Mommy's mommy) was at our house already since she spent the day with us, so she could stay with the boys. Mommy and Daddy took Elizabeth in at around 8:30pm because Elizabeth was having big time tummyaches. It was so bad that our usual tough cookie was crying and moaning (even yelling and howling at times) in pain.

They did a full blood work-up (which was clear) and checked her liver enzymes (which were normal) to see if the pain was being caused by her tumors. She had an x-ray of her tummy area which showed lots and lots of poop filling her entire colon. So basically she just needs to go potty. Between the chemo and her digestive enzyme problem (um, she doesn't make any on her own without a pancreas), coupled with the fact that she hasn't felt like eating, she developed a blockage somewhere. Daddy was convinced it was something like that because of where Elizabeth said it hurt, but Mommy (who is always worried about the worst) was very scared that it might be cancer related. Unfortunately, no matter what the docs say, it is still in the back (well, really front) of Mommy's mind!

Needless to say, Elizabeth has been feeling pretty icky the last couple of days. It seemed to start going downhill ever since we came home from dance class on Thursday afternoon. She still laughs here and there, but has been rather sedentary lately--who could blame her?!! We're giving her tylenol for the pain and she has two prescriptions to help clear up the poop problem. Hopefully it won't be but another 2-3 days of her feeling like this.

Other than that, we're just hangin' in there. Dr. Marcio is working on getting her CT scan scheduled before her next round of chemo (scheduled to start May 5). We're hopeful that the AFP levels will continue to go down and would be ecstatic if her scan shows improvement in the areas effected by the cancer.

It hasn't been easy seeing Elizabeth in pain--this isn't your typical constipation tummyache--but it is a reminder that as bad as this seems, we need to be grateful that it isn't worse. She could be like most other kids and be puking from chemo on top of it. It starts to bring home the message to be grateful for what you have because someone somewhere is a lot worse off. Although it would be nice just to be cured and "normal" again!!

Thanks for your continued prayers! We believe in the power of prayer, and we are expecting a miracle.

Photo FUN!!!

Here are today's ballet pictures, as promised:





**Note the PINK tights, PINK leotard, PINK skirt, PINK headband, PINK ballet slippers, PINK necklace, PINK ribbon Elizabeth is holding in the top photo, and the PINK dance bag. You can't see it, but I believe she's wearing PINK panties, too!!

Some other fun pictures:


Early March, 2005: Elizabeth having fun during her "model shoot".


Here are a few of our Aquarium of the Pacific (in Long Beach, CA) pictures:

Matt, Daddy, and Elizabeth pet a ray... this is Elizabeth's and Matt's most favorite thing to do when we visit the aquarium (thanks Grandma Kirsten and Uncle Luke for the annual membership!).


Elizabeth was watching Snow White and the Seven Dwarves about a week before this picture was taken at the aquarium. Elizabeth was very intrigued when Snow White was singing as a little bird perched on her finger. She said,"Mom, I wish I could have a bird sit on my finger." Although she was pretty cautious and a little bit apprehensive, she was delighted to have this Lorakeet sit on her arm while drinking nectar. She said,"My wish came true!"


Mike with a Lorakeet of his own...


Matt (pre-haircut) sitting in front of Shark Lagoon's large underwater window viewing area. He digs the giant rays!


March 13, 2005: Princess Elizabeth at Breakfast with the Disney Princesses.


March 13, 2005: Elizabeth with a flower she just picked (eek! You can't pick the flowers at Disneyland!) to give to Alice (in Wonderland). Alice was very excited to get a flower from such a beautiful Princess!

And just for the sheer cuteness of it, by popular demand, more recent pics of little Danny age 3 1/2 months:

As any mom knows, Exersaucers rule! Look at that smile!!


He's a happy boy! Is it Danny, or is it Mikey? (*It is Danny, but it sure could pass for a baby picture of Mike!)


Again, I ask, Danny or Mikey? (*This one actually IS Mikey!! Note the teeth... Danny doesn't have any yet!)

Good Day So Far

Just wanted to quickly post that Elizabeth is having a rather good day so far. She is eating a bit after having lost her appetite the last 2 days, so that is good. She also has ballet for the first time in 2 weeks this afternoon and is very excited about that. Elizabeth can't wait to wear her new PINK tights today (with her PINK leotard, and PINK skirt, and PINK ballet shoes, and PINK headband, carrying her PINK dance bag... do we sense a trend here?! Of course she needed PINK tights!). I'll be sure to get a photo to post later. In the meantime, here's a cute one:



Have a great PINK day!

New AFP Level In--Good News!

Elizabeth's blood was drawn yesterday to check her tumor marker (in her case, AFP) level. Her last AFP was 3900 taken April 12. It is now down to 3250. We can't read too much into this... it doesn't necessarily mean everything will be okay, but it sure is good to have some good news!

We had an "Oreo Party" (Elizabeth's words) this evening after picking Mike up from drama practice and grocery shopping. Elizabeth wanted Mint Creme Oreos, and riffled through the grocery bags until she found the package immediately upon arriving home. Elizabeth, Mike, Matt, and Mommy celebrated getting some good news by being silly and eating Oreos. If you're ever feeling a little blue, I highly recommend it! I don't know if it was the sugar or what, but we all had a bad case of the giggles, which continued off and on all night.

Elizabeth has been complaining of tummy aches again, and hasn't been quite herself. The transfusion has seemed to perk up her color, though, so hopefully she feels some good effect from it.

Thanks everyone for your continued prayers. Every day is a gift and we're trying to enjoy every bit of each one. We are grateful for the little things (like Oreos!) and hope that someday we'll be able to express gratitude for the ultimate answer to prayer.

Transfusion Complete!

...after only 8 hours at the hospital~not that I'm complaining. Actually, quite the opposite! Matt and Danny were very well behaved and patient while spending the day in a 7 x 9 foot sqare area. A lot of that was probably because they had Mommy's undivided attention all day.

We had no idea it would take so long to get the transfusion. First Elizabeth's blood panel needed to be run and we were waiting for the results. Then it turned out that her hemoglobin had risen enough that we could go either way, transfuse or not. Mom thought we might as well get the transfusion since it has made Elizabeth feel better and not so tired in the past, and it was already ordered, and who knows if it would be necessary anyway in a couple more days as the chemo starts to have greater effect. The color in Elizabeth's face is now a healthy looking rosy pink instead of the usual pallid tone.

Elizabeth also had blood drawn to check her AFP levels, so hopefully we should have some numbers by tomorrow afternoon. Now we're looking for <3900. Please pray that it isn't still going up. We should be scheduling a scan, too, in the next week or so. Pray that we are able to tell if the chemo is working or not ASAP. Time is so critical and we can't waste it on treatments that aren't working.

Everyone is pretty much just hanging in there, waiting waiting waiting to see where this all takes us. Hopefully between the AFP levels and the upcoming CT scan we'll get some more definitive answers.

Remember to let us know about the bracelets (see the end of the April 18 post) and if you are interested in wearing one. The email link is there.

Thanks for the prayers and support! All the nurses at Children's call Elizabeth "Tough Cookie", especially when they find out she has 3 brothers. We know that if anyone can beat this thing, it's our little Princess!

Busy Weekend!

Sorry it's been a few days... we've been pretty busy since Friday.

Friday morning Elizabeth went to Children's Hospital with Mom for day 2 of chemo. She got a 2 hour infusion of oxaliplatin, after getting regalin and benedryl (Mom loves it when Elizabeth gets benedryl!!). Elizabeth dozed a little, but kept getting very angry that there was nothing good on TV. Kinda funny since the hospital has cable (complete with Disney channel, Nickelodeon, and Cartoon Network) and we do NOT!

About halfway through her chemo infusion she started demanding McDonald's. There is no way to truly appreciate how funny that is without the following setup...
Our neighbor one curtain over was a little girl roughly 7 years old who was also getting chemo. She was so sick... her mom even asked if it was okay for the older sister to eat her lunch near the bed, or would the smell make her feel more sick. And here is my daughter asking for Chicken McNuggets ("the big one" Elizabeth asks for, meaning 6 pieces) and french fries WHILE getting chemo. And the docs at UCLA didn't want to give Elizabeth strong chemo because "you want her to have as many 'good times' as possible in the remaining time." Silly docs, when will they ever get it that Elizabeth has good times whether she's getting chemo or not!

The good news is that Elizabeth did get her McDonald's and never was pukey during and following this last chemo treatment.

We DID spend most of Saturday in the Emergency Department at Children's because Elizabeth spiked a fever. There was no obvious source of infection, but they did give her a 30 minute infusion of antibiotics to be on the safe side. And because they ran a blood panel we found out that Elizabeth's hemoglobin is low enough that she needs a transfusion of red blood cells. That is set up for Tuesday (tomorrow) morning in the day hospital.

On Saturday Elizabeth did have a little blood in her stool, so Mommy had a little party in her head... Remember that Elizabeth's GI doc (Dr. Venick at UCLA--we love him!) said that a little blood in the stool is usually a good sign that liver tumors are being effected by the chemo and are bleeding as they die. He also warned to be on the look out for anemia because of it. So bring on those transfusions!! We'll take a little anemia and some blood transfusions over cancerous tumors any day!

Mike had a lot of fun on his Boy Scout camping trip. Dad was grateful for an excuse to leave and meet Elizabeth, Matt, Danny, and Mom at the hospital on Saturday, but reluctantly did go back to camp Saturday night. Matt and Danny tolerated 7 hours in a small room at the hospital rather well. Mommy thinks that remembering to bring the portable DVD player played a big part in how well the hospital trip went, and will never leave home without it again!!

We found a place to get personalized silicone bracelets (like the LiveStrong yellow bands) in small quantities without paying through the nose. We are considering ordering some white ones with a cross and text "Pray for Elizabeth". We can get other basic colors, too, like pink, red, blue, etc., but the minimum order is 10 per color/size. If there are people out there interested in wearing one for Elizabeth, please send an email to eahill88-blogger@yahoo.com with your address and any color/size preference you have. Once I have enough to put together an order, I'll let everyone who expressed an interest know when I'll have them ready to mail. The bracelets come in two sizes: adult and child. The child bracelets fit Mom's wrist just fine (they are about 7") and the adult fits Dad nicely (about 8"). Unless you're an adult male or have large wrists, I'd suggest child size. Anyway, we think anything that gets people praying for Elizabeth and helps spread her story is a good thing.

Thanks for the support and continuing prayers! Elizabeth is doing very well and we are so grateful for that!

Well, this is how Elizabeth spent the morning while getting her gemcitabine chemo infusion:



Needless to say, she did very well getting the poison--er, medicine--pumped into her central line. She was feeling SO good afterwards that she excitedly agreed to go to McDonald's (can you believe the hospital has one of those?! It's not uncommon to see kids with IV poles in there eating...) with Maureen Masserella, our friend who works in administration at CHLA. Maureen brought Elizabeth a bead/jewelry kit when we first checked in, and Elizabeth did manage to make her a keychain before konking out. She gets several antiemetics (i.e. medicine so she doesn't puke her guts out) before chemo, including regalin, which is always given with benedryl. And benedryl=sleep for Elizabeth! Mom had fun painting Elizabeth's toenails and coloring with her, but did appreciate getting to doze for an hour while Elizabeth napped.

So far so good... Elizabeth is up and around here at home fighting with her brothers, so all is normal! Unfortunately, we did not get out of the hospital in time to make it to ballet class today, so we have to wait until next week for the next class. But that doesn't stop Elizabeth from wearing her dance leotard and skirt and her ballet slippers while dancing about at home... in fact she is dancing right now in her dance class clothes while watching her Barbie of Swan Lake DVD.

We're trying really hard to stay positive, but it's getting pretty hard. We just found out that another of our little friends that was being treated at UCLA while Elizabeth was there died in January. His name was Mikey Traba and he had a little sister named Emily. He spent so much time in isolation because of his bone marrow transplant, but every time we saw him he was smiling from ear to ear riding on his IV pole. It's just getting harder and harder knowing that it is a very real possibility that we'll go through that kind of tragedy. Like Holden's family put it, it doesn't really matter if a cure rate is 67% if you fall into the other 33%. Little Mikey had leukemia, which has a 95% typical cure rate, but he was in the other 5%. We are told that a 20% cure for Elizabeth is optimistic. At this point, numbers just seem so meaningless. Like Dad put it last night, Elizabeth is 4 times more likely to make it than Mikey was to not make it. Who really cares what the odds are when you're banking on a miracle anyway?! It's just more and more frustrating to meet these little angels knowing their futures are so uncertain.

On a lighter note, the boys are all doing great. Mike has been selected (thanks to his drama coach and magnet coordinator Mrs. Marchand Erickson) to do a TV news spot on KCAL 9, a local Los Angeles station. It has someting to do with Angels baseball and as soon as I have more details I'll post the info. He is very excited. Danny is all smiles lately, and Matt is getting more comfortable with his new role as big brother.

Keep the prayers coming! As tough as this is to deal with, there is a sort of calm that we feel sometimes amidst the uncertainty and chaos, which can only be attributed to prayer. Just yesterday Elizabeth told Mom that the chemo was going to shrink her cancer until it was all gone. Let's hope she's right!!

AFP is in...

...and it's not good news. Elizabeth's AFP level is up from 1460 to >3900. Our nurse caseworker, Patricia, told us not to be too alarmed since a rise in AFP after just 1 round of chemo is typical. We're glad that it's "typical", but we really would have rathered atypical great news instead.

Bright and early tomorrow (around 8 am) Elizabeth will be checking into Children's day hospital to start round 2. We'll keep you posted about how she's reacting to the chemo. Keep praying that she stays strong and will be ready for round 3 in two weeks.

We've updated the Caring Bridge page (the first link on the right that says "Elizabeth's Guest Book") to include Elizabeth's back story. It's just a brief summary, but it does a good job filling in our many new visitors.

Thanks for your prayers!

All Set for Round Two!

Elizabeth had an appointment with Dr. Marcio this afternoon. She had her blood drawn and we should know what her AFP levels are by tomorrow afternoon. We are praying that they have not gone up. She was at >1400 as of March 24, before starting chemo. Her AFP was doubling about every 2 weeks at that point. Anything equal to, or less than, 1400 would be good. Of course, an AFP back down to 5 would be ideal, but we're taking the smaller blessings as they come (and we sure are grateful for them!).

We will be doing the chemo as an outpatient this time. Elizabeth will be admitted to Children's "day" hospital on Thursday morning. She'll get the gemcitabine as a 90 minute infusion, and then we should be discharged around lunchtime. We will go back on Friday morning for the 2 hour infusion of oxaliplatin, and again be discharged near lunchtime. Mom promised she'd accompany Elizabeth for round 2 when she was doing round 1 inpatient with Dad, so Dad will spend Thursday and Friday mornings home with all of the "yucky" boys.

So we're pretty much in a holding pattern until we get through this cycle, which ends in another 3 weeks. At that point we'll have a CT scan to look at the tumors and see what change has occured. Dr. Marcio seemed to suggest that even if we are seeing no change (i.e. no more tumor growth), we may want to keep going with the same chemo agents. We'll cross that bridge when we get there, but we're (meaning Mom and Dad) pretty much in agreement that we need to be extremely aggressive because we intend to save our daughter. And as long as the chemo isn't making her sick (thank you God for sparing Elizabeth that), we'll keep pumping her full of it until the cancer runs out of her little body screaming for mercy!

We'll post the AFP levels as soon as we get the results, hopefully tomorrow.

Thanks to everyone who has been signing the GuestMap! It has grown exponentially over the last 2 days, much to Elizabeth's delight. We upgraded to the pro service, so there should be no more people "disappearing" off the map. We now have room for up to 1000 entries.

While you are remembering Elizabeth in your prayers (which we so appreciate and desperately need), please take the extra few seconds to also remember the following cancer-kicking kids:

• Gage: Relapsed in February and undergoing extremely strong chemo that is making him rather ill
• Matthew: Relapsed late last year and is no longer taking any treatments because they were worse than the cancer
• Julianna Banana: Relapsed leukemia with poor prognosis

And the families who have recently gained angels:

• Trey - late 2004
• Bret - February 2005
• Benjamin - April 2005
• Remy - January 2005 (this was a deeply personal loss... Remy was Elizabeth's first roommate in the pediatric oncology hall at UCLA, who also moved to Children's Hospital Los Angeles looking for more aggressive treatment)

11 children die EVERY DAY from cancer. One child in every 330 will be diagnosed with cancer by the age 19. Instead of asking "Why our child?" we say "Why not our child?" Cancer happens to families every where, why would we be any different? There is no answer good enough to the "why" questions, so we stopped asking them a long time ago! Like Mike's button says: CANCER SUCKS

Circa 2002: This is little Holden, whose parents founded Holden's Hope Train in his memory, with Elizabeth's oncologist Dr. Marcio.

April 10, 2005: Princess Elizabeth, with a little bit of a pout... very her!

April 10, 2005: Elizabeth, Mike, Matt, Danny, Mom, and Dad at Pediatric Hem/Onc Portrait Day. The event was fully sponsored by Holden's Hope Train for Children's Hospital Los Angeles patients and their families. Kristin Farrand (whose child is a patient) is the photographer--she was incredible!

Still Well!

Elizabeth has managed to stay well even though Danny, Matt, and Mom have been sick. The antibiotics and cold medicine have helped and the sick-ees are all feeling much better.

On Thursday Elizabeth had dance class. If all is going well in June, she'll be in a dance recital at CSUN (Cal State Northridge). She is learning the routine and we've already ordered her gorgeous costume complete with tutu. Elizabeth does have a tendency to add a little extra twirl here and there, and wave her arms to add more "flourish"... she does have a way of making the dance her own!

Yesterday we got Elizabeth's blood counts faxed over. Everything looks great. We don't think her white blood count (WBC) ever really dropped, and she's NOT on neupogen (GCFS) this time to keep them up. Last chemo in the fall, she had to have injections every morning of GCFS to keep her WBC high and thus keep Elizabeth from getting sick. She hated those shots (keep in mind she gets about 5 shots of insulin daily, so needle sticks aren't really the problem anymore) because it burned when injected. Sometimes we had to sit on her to give the shot, so we were all very grateful when Dr. Marcio said he wanted to try it without them. I think it is safe to say that Elizabeth doesn't need them at this point, which is very good news for all of us!

Looks like everything is on track for round 2 next week. We are seeing Dr. Marcio in clinic on Tuesday and will hopefully find out if we are doing the chemo inpatient or outpatient, and what days we'll be doing it. This weekend is the Boy Scout Camporee at the Castaic camp site and Elizabeth really wants us all to go. Mom isn't too thrilled about the idea of having two preschoolers AND an infant out camping at a real camp site (past years' Camporees were on the VA Hospital lawn!), but if Elizabeth is well and not getting chemo we can't really say no. Not that it has ever been easy to say no to her even before the cancer!

Last night the whole family went out to dinner at PFChang's to celebrate Mom and Dad's 11th wedding anniversary. The food was great and the prices not too steep. We all had a great time, and Elizabeth was glad to have found yet another reason to get dressed up. All she wants to wear these days are her dresses! Good thing she has a closet full. This is one kid that is as thrilled to get dresses as toys.

Elizabeth asks to check her GuestMap at least 3 times a day. She has it read to her each and every time, so thank you all for signing it. It really does mean a lot to her (and us!). In fact, she's asking Mom right now if she can see if she has anyone new on her map...

Thanks for your prayers. Elizabeth's tummyaches are just about all gone now, which, regardless of how well the chemo is working, is great news. We are praying that this is the right treatment and that we will reach a day when she's cured. We're just waiting for that miracle!

Some Bug is Going Around...

Thank God Elizabeth doesn't have it!! Please pray that she doesn't get it, either, because she is due for her second round of chemo next week.

Mom, Matt, and Danny are all coughing and spitting nasty globs. Matt and Mom are running low grade fevers (101), too. We made a trip to the doctor's office (Dr. Elizabeth Eddy-Bertrand in Northridge--she's a GREAT primary care physician) and got a couple of prescriptions for antibiotics. Thankfully Elizabeth is on bactrim (another antibiotic) Friday, Saturday, and Sunday (just so that she doesn't catch anything) while she's on chemo anyway. To keep her well, I think I will start giving it to her daily for the time being. We can't miss any chemo treatments!

No real new news regarding Elizabeth. We got a call from our nurse case worker at Children's on Friday with her blood test results. All of her counts were normal. It amazes us how little the chemo treatments (i.e. POISON) effects this little girl! No more blood in the stools (darn!), but we just keep believing the best will happen. Elizabeth talks about her body fighting the cancer and how the chemo helps her do that. We even have a story that she made up with Mom about Princess Elizabeth Rose ("Anne" is her middle name--she just likes the name "Rose") and a nasty dragon named "Cancer" that steals her favorite pink ballet slippers. We'll have to get that down on paper and post it. Elizabeth has quite the imagination!

Mike has Boy Scouts (I can't believe he's not a Cub Scout anymore!) tonight. He has been working on learning all his lines for the school play "The Wizard of Oz". He tried out for the Scarecrow (more face time, we think is why he picked that one), but was cast as the Lion. It suits him well. Mom sneaked a peek during Saturday rehearsal, and he is quite convincing. He has the accent down as well. He's wrapping up the school year nicely, and will be heading for MIDDLE SCHOOL next year. Yikes! He also had to watch "the movie" last week... the one that explains puberty. It was called "Boy to Man". Very cheesy. He asked Mom to go to the parents' showing because Dad embarasses him about that stuff. An hour of Mom's life she will never get back!

Matt is doing great in spite of being sick. Nothing ever seems to phase him... cuts, scrapes, blood, bonks, illness, nothing! He wants to play soccer (we don't know why he got that into his head), but they don't start until age 5, which leaves him another two seasons. So we're looking for something to keep this kid busy in the meantime. He just really wants an "activity".

Danny is growing like crazy! He'll be 3 months old on the 11th and already weighs in at 15 lbs. 11 oz. I wish we could keep him small for just a little longer!!

Thanks to all of you who signed Elizabeth's Guestmap... she loves seeing all the new people! And also thank you for signing her Guest Book on the Caring Bridge web page. We are working to get that page a little more informational for anyone who doesn't know Elizabeth's backstory so they won't have to scrounge through old blogs. With four kids it should be easy to fit that in somewhere!?

Keep praying for Elizabeth. Thanks!

March 12, 2005: Elizabeth holding baby brother Danny (age 2 months). You can tell how much she loves him by the way she's looking at him. He's lucky to have her as a big sister!