Week 2, Round 1

Yesterday, Elizabeth had her second day of treatment using the new chemo regimen. Thankfully, we do it all as an outpatient in the day hospital still. It is a 6 week protocol that we are following, which breaks down into:

Day 1: Avastin (90 min), Irinotecan (90 min), Leucovorin (15 min), and 5-Fluoruoracil (15 min)
Day 8: Irinotecan, Leucovorin, 5-Fluoruoracil (IFL for short)
Day 15: Avastin (60 min), IFL
Day 22: IFL
Day 29: Avastin
recover through day 36

We are doing 2 complete cycles (rounds) before re-evaluating further treatment options.
Today is day 9 of the first round.

Elizabeth went to ballet class today and did everything (except the jumping, which we've already told her is perfectly okay), although it took most of the class time for her to warm up, attitude wise, and finally smile.

Yesterday's chemo was quite interesting. All three boys accompanied Elizabeth and Mom to the hospital. They did rather well... that is, until Mike and Matt went to the playroom. Apparently Matt decided to wait until the last second to tell Mike that he needed to go potty. Needless to say, a Nintendo game is truly more important to a middle-schooler then helping a younger brother to the bathroom, so Mike didn't exactly move too quickly. Of course, Mom has since stopped carrying extra clothes for almost 4 year old Matt because this sort of thing doesn't happen any more... HA! Poor Matt had to wear one of Elizabeth's pink Barbie nightgowns (we always bring extras to chemo for any leakages or vomiting). His concern as Mom was changing him in the bathroom was if they would laugh at him in the playroom for wearing it. When Mom asked if they laughed when he peed all over the place, and Matt said no, he readily accepted the idea that they wouldn't laugh for him wearing a nightie. Didn't really matter anyway since Elizabeth was done with her chemo at that point. Matt was rather adorable tromping along in a pink Barbie nightgown, though. It is almost frightening how "boy" he really is.

We were watching that new reality TV show called something like "So You Think You Can Dance"... there was a young man on there who did a ballet-type routine (complete with tights, minus anything covering them up) and ended with a gymnastics type dance using a dance ribbon he twirled through the air as he leapt about. Matt watched with his crinkled nose and disgusted look on his face before saying,"That boy is dancing like a girl." He seemed to be a combination of both disgusted and confused. The dance critic on the show asked the guy why he was dancing like a girl when he was "obviously a boy"--and Matt verbally agreed with him. So you all can understand why Mom really did feel bad about putting him in a pink Barbie nightie. I guess we won't be taking him to see any ballets that have men in them!

Mike had a great time at Boy Scout camp in Big Bear over the week of July 10. He learned how to ride a bike (he's never been big on that) and completed 3 merit badges: First Aid, Woodcarving, and Art. He's also been going by the names "Pinecone" and "Dough Boy" ever since.

Danny is uttering "ma-ma-ma-ma" whenever Mom walks by him now, and he is practicing his standing in his crib. Dad is very happy that he is "turning into a real boy", while Mom is sad about how quickly our last little one is growing up.

CONGRATULATIONS TO ANGEL STACEY ON THE NEW LITTLE MAN IN HER LIFE!
WELCOME LITTLE JASON!

Elizabeth hasn't lost any hair yet, so we're still hoping she won't. Thanks for remembering her in your prayers.

Elizabeth's Chemo Reaction...

She is doing better than ever after having her mega-day of chemo on Tuesday. She was feeling great all day on Tuesday (even after several trips to the potty--irinotecan usually causes near dangerous amounts of diarrhea) and even told Dad to stop at the park on the way home. They were at Griffith Park playing and climbing hills for well over an hour after Elizabeth had just gotten chemo!

Yesterday, Elizabeth went to ballet class. She usually sits out to the side when they do activities she says make her feel "yucky", but not this time! She participated in the entire class and did everything, only leaving the dance floor once to make a potty trip. Her energy level seems to be higher, and she is having less attitude than usual. It seems that she just needs some strong chemo to make her happy!

Today, Elizabeth is with Dad at the hospital getting a CT scan. This will tell us how she is healing from surgery and how much of her liver has regenerated. Also, it will serve as a sort of baseline showing where we are starting from with the new chemo regimen.

Nothing else much here... just working on getting her registered for kindergarten and finding some school time activities for Matt. Matt wants to be a "soccer player" so badly, but unfortunately it looks like he will have to wait one more year before he's old enough. We'll find something for the boy, though.

The heat is awful! Over 100 everyday this week, and it is overwhelmingly humid. We're expecting thunderstorms through the weekend. I thought this was California... not Florida! At least we had the AC fixed a month ago.

Hope you all are enjoying your summer!
Special thank you's to Elizabeth's sweet Angels...
Angel Amy (and Lindsey and Haley, too)
Angel Princess Amber
Angel Stacey (is the baby here yet??)
Angel Theresa
Ms. Janie
and the very tolerant Maureen, who lets Elizabeth steal all her goodies in her office!

And congratulations to Julia Rabago on being CHLA's hospital employee of July!!
Julia graciously offered CHLA employee child care for Danny and Matt while Elizabeth was in ICU. Our friend, Maureen, nominated her. In the nomination letter, which was published in the weekly hospital newsletter, Maureen described how Julia had helped us. We are so happy that she is being recognized by the hospital for helping us! (BTW, Julia, please tell Mikayla that Scooby Doo, while too large to take into the hospital every time we visit, does travel in the trunk of the van any time we have a hospital visit. Elizabeth insists that he has to come with her and won't leave home without him!)

Please keep Elizabeth in your prayers. So far, so good with the new treatment.

Mom here...

HA! Here I was, logging on after sending Elizabeth and Dad to the hospital for the start of her new chemo, all ready to post about her new treatment and how she's doing, AND DAD BEAT ME TO IT!! So I'll just say "ditto" to what he said... So if you haven't already read the post he put up yesterday, scroll down and take a look.

And I'll post some photos...

May 30, 2005: Disneyland! This was taken on our Disney weekend before Elizabeth's surgery. Thanks Grandpa and Granmary for the cool hotel room! Elizabeth was most excited to see Ariel--there was a little fiasco the night before this was taken when we went to Ariel's Grotto Restaurant. Elizabeth was dressed in her Ariel costume all ready to see Ariel, and Ariel wasn't there. In fact, she hasn't been there for some time, we were told, as they are in the process of changing the theme there. So we had to find her the following day. Elizabeth brought Ariel two of her Pray for Elizabeth bracelets... a small one for Ariel and a big one for Ariel to give to her father, King Triton. Ariel promised to wear it and be thinking about Elizabeth during her surgery. The girl playing Ariel was so sweet! She went to put on one of the bracelets, then had to stop herself because cast members aren't allowed to wear anything that isn't part of their costume. When we recently went to Disneyland we looked for her, but it wasn't the same Ariel. She had asked Elizabeth to come back and see her to tell her how well she was doing after the surgery. So we're still trying to track down THAT Ariel.




























May 30, 2005: Dumbo ride at Disneyland. That's Mike in the special 50th birthday gold Dumbo. Danny is taking his first (of many, I'm sure) Dumbo ride with Dad and Matt. Mom is sitting with Elizabeth, which is why Mom is not in any of the pictures. Smart people take the pictures so they don't have to be in them...





May 30, 2005: Posing on the Golden Carousel Horse. No, Danny isn't balancing on the horse's head... that's Dad holding him from behind.

May 30, 2005: Mike gets into the act at Madame Butterfly's School of Dance. He makes such a beautiful butterfly...











May 31, 2005: Children's Hospital Los Angeles, admitting lobby. Elizabeth was thrilled to find a Mickey on the carpet while we were checking her in. She had been on that carpet several times, but was never in a "Mickey" state of mind! When Mom mentioned it to our friend Maureen, an employee at the hospital, she told us it wasn't accidental... Disney Imagineers designed the lobby!





June 6, 2005: A few days out of surgery, still in the ICU. Yes, Princess Elizabeth is bored out of her mind, even though her bed is covered with all the things she got while in the hospital. Such is the life of a princess... one can never have too many toys or activities!










Later that same day... we were visited by Maureen and Julia. Julia happened to bring Elizabeth OREOs, which made Elizabeth happier than she had been since having surgery. Is this not a great advertisement for Oreo cookies? "Oreos even make kids in ICU smile..."














June 11, 2005: Children's Hospital Los Angeles Celebrate Life picnic in Griffith Park. This was Elizabeth's first outing since getting home on June 9 after surgery. Here you can see Matt, Dr. Marcio, and Dad with the Princess in the stroller. We love Dr. Marcio--he's a pretty neat guy and an incredibly gifted doctor. At a recent appointment, Matt jumped on Dr. Marcio's back when he was examining Elizabeth. He tickle-monstered Matt until Matt was out of breath! We haven't come across any other doctors that are so great with kids and treat the parents as equals. He is just the best.

June 11, 2005: Celebrate Life Day at the Park. Here is our friend, Kelly, holding Danny. We are so very grateful to her for being the first person to approach us about having a kid with cancer. She works at our pediatrician's office, and when Elizabeth was finally diagnosed with cancer, our pediatrician had her call us because she also has a kid who went through fighting cancer. She was the first person we met who really understood what we were going through, and she's been a wonderful friend to us. Kelly introduced us to the Michael Hoefflin Foundation, without which we would have lost our sanity by now, and then introduced us to Maureen, who works at the hospital and who has also become a truly great friend to our family. And yes, that is a tattoo on Danny's forehead.




Here is a close up of that tattoo--yes, it is temporary--that Danny got at the Celebrate Life event. It is a Camp Ronald McDonald for Good Times tattoo, and since he's been there (even though he was still in Mom's tummy), we thought he would enjoy wearing their logo. Brian, the Camp Director, said he didn't think it would be child abuse when Mom asked his opinion, so there. And Danny obviously doesn't seem to mind!






June 17, 2005: Mike's first night performance as the Lion in "The Wizard of Oz". Here he is with Elizabeth (in her Little Mermaid Ariel bridal gown) during intermission. Yes, Elizabeth is eating her favorite... Skittles...















June 27, 2005: The Annual Boden Family Picnic. The idea was that all the branches of the original Boden family would wear a different color so you could tell who belonged to who... ten years ago there were four colors. We didn't go last year--we were otherwise occupied with Elizabeth's initial diagnosis. But we made it this year and noticed we were the only ones in blue, and all the yellow and purple seemed to disappear! So our kids are easy to spot... there's Mike holding Danny, with Matt on the right and Elizabeth on the left. The kids had a great time playing games and running around the park, and we even met a distant cousin who has a nephew with neuroblastoma, another childhood cancer. He was even treated at UCLA the same time we were there, so we probably passed him in the "cancer kid" hallway! Also like us, they moved to another hospital to continue treatment when his cancer came back. I'm sensing a trend...

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I'll be posting again by tomorrow to let you all know how Elizabeth is doing with her new chemo regimen. Take care and keep her in your prayers. We're hoping that she won't lose her hair again, since that seems to be the hardest thing for her to deal with, but so much more than that, we just want the cancer GONE!

The Big Update

Dad here with …………The big update.

Last Thursday, Elizabeth was supposed to have Chemo. This would have been the second round after the last surgery. But, Dr. Marcio wants to go ahead and move to a different agent. Elizabeth’s AFP was 201 then. Up a little from the last one, it was about 160. So, it seemed like that sealed the deal to move on to a new regimen.

On Tuesday, she will begin IFL and Avastin. IFL is an acronym for Irinotecan (a chemo), 5-fluorouracil (5-FU)(a chemo) and Leucovorin (a form of folic acid to help prevent anemia). The Avastin is an angiogenesis inhibitor, meaning that it stops the generation of new blood cells. This is a new class of products that are being developed in an effort to make current chemotherapies work better.

This time, the cycle or rounds of Chemo will be different. Each round will consist of 4 treatment days spaced a week apart. The IFL will be given on all 4 weeks and the Avastin will be only the first and third week. She will start tomorrow (Tuesday) with her first day and have the Irinotecan, 5-FU, Leucovorin and Avastin given by IV. Not sure what the antiemedics, but we will find out. Also, Elizabeth has a CT scan on Thursday this week to check among other things how well the surgery went and create a baseline for the new treatment. Still hard to believe UCLA could only offer palliative treatments for 6 months, maybe. But, hey that was 4 months ago and we are just getting started!

Updates have been a little sparse. I apologize to those of you that have been waiting for your updates. It has been 3 weeks since the last round of Chemo and 6 weeks since her last major surgery to remove tumors.

The last couple weeks have been a much needed break from everything cancer related.(including the site!) It wasn’t really planned that way, but with Elizabeth feeling better than she has in 6 months, it worked out that way. Getting the tumors out of her stomach and liver provided some much needed relief from daily discomfort for Elizabeth. We spent the last couple weeks just trying to be normal for a while. Trips to Disneyland, family reunion picnics, playing outside with bubbles, watching DVD’s because you want to, Barbequing, watching fireworks, going to the movies and dancing. Ohh, and Mike went to his first WEEK long camp with the Boy Scouts. He was quite worn out, but he definitely enjoyed it.

Going through this, you start to forget what normal is for other people. It has been nice to find a small break away from all that is cancer. Well, almost all. There still are weekly blood draws, doctor visits, morning meds, 5-6 blood sugar sticks, 4-5 insulin shots, evening meds, dressing changes, Central line flushes and whatever else Emilie does that I forget she does. But, still it has been nice to forget for a couple weeks about the major stuff and be able to enjoy Elizabeth’s spirit for a while. Even though, it was our subconscious forcing the issue.

Suffice to say, the site is part of that daily reminder of the gravity of what we are dealing with. That is why it has been on break with all of the other major stuff. But, we are back into the think of it and updates will be more regular. The mental “hold” button is off and onward we will go. I thank you for your patience and understanding.

I want to say thank you to everyone that has been keeping Elizabeth and us in your thoughts and prayers. Thank you. And for those of you that have our numbers, please don’t hesitate to just call to chat.

Take care…….Elizabeth, Elizabeth's Dad, Elizabeth's Mom, Elizabeth's brother, Elizabeth's other brother and Elizabeth's baby brother (It is all relative to Elizabeth!)

Happy 4th of July!

We hope that this weekend finds you all having fun spending time with your friends and families! We are planning an outing to the CBS studios in Studio City for a Fourth of July Fair and fireworks on Monday. Should be fun!

We just got back from Disneyland... our first trip back since Elizabeth's surgery... if you don't count the few hours Mom and the kids spent there on Thursday evening. This was our first whole day trip, anyway, and we decided to take Dad for the ride. Elizabeth was in such a great mood! She spent most of the day very giggly and pranced around (a little... mostly was carted around in her "royal carriage"... i.e. stroller) in her Ariel princess bride dress. It is so wonderful to be with Elizabeth when she is feeling good. It's like we have our daughter back--not that she was ever gone, she just hasn't seemed like herself for so long (understandably so...). Dad thinks that she's doing better because she had the surgery that removed all that cancer from her little body. All those tumors must have been making her really uncomfortable (to say the least) and now that her body has had a chance to recover it seems she is seeing some positive effect.

We are scheduled for round 2 chemo on July 14. Dr. Marcio is working on the possibility of adding a couple more agents to the regimen on an alternating basis (for example, round 1 - GEMOX, round 2 - 5-FU, round 3 - GEMOX, and so on...). This could lessen the chance of her cancer developing a resistance to what we are already using, and since this cancer is more likely to come back than not, we can't risk resistance later down the line.

We did get Elizabeth's pathology report. I think we may have posted earlier that her margins were clear, but it is worth mentioning again. That means that when they removed the liver tumors, there was enough non-cancerous tissue surrounding what was removed that there shouldn't be any residual disease in the area.

The following is an exerpt from a case update I posted to an acinic cell carcinoma weblist we belong to:
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The pathology report did reveal necrosis (death) in the cancer cells (that's a very good thing!) but with different levels of necrosis than originally thought (based on scans).

Her liver tumors (about 70% of her liver was removed on June 1) were thought to be necrotic and her peritoneal tumors (one rather large 6.5mm, another tumor 5mm and about 8 other nodules--also removed on June1) were thought to be viable based on pre-op scans. Turns out they got it in reverse, which we think may be better.

Her liver tumors showed no signs of necrosis, so good thing we got them out of there. No visible nor palpable signs of disease were left in the liver. Margins were clear. Hopefully we can keep the liver clean for a while now.

Peritoneal tumors--largest was 20% necrotic, second was 60% necrotic, all nodules were 100% necrotic. Good news, means that GEMOX works on the peritoneal implants--a location she has the greatest chance of recurrance at this point.
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So that's what's going on for now. Otherwise, things are great. Mike is out of school and driving us all nuts--but we're enjoying having him around more! Matt and Elizabeth are fighting like crazy for Mike's attention (they just love their big bro!), and Danny is still growing at what seems like a very rapid rate, but I think it's just because he's our last one (barring any miracles--tubal ligation!) and it goes by too fast.

I should have lots of time (well, maybe not lots...) on Tuesday to be able to post some new pictures. Those are always fun and we've been doing some cool things (annual family reunion picnic, Disneyland, Mountasia, Celebrate Life fair, etc.) we'd like to share with you all. Thank you for continuing to pray for Elizabeth. We are so hoping that this will be it for the cancer, but whatever lies ahead, through Him we can "do all things". Without your constant prayers and God's guidance we would not have gotten through this far. Thank you, thank you, thank you!