Prayers for another family

Please pray for Ava's family.

Ava lost her battle with neuroblastoma yesterday afternoon.

WE'RE HOME!!!

Mom here, still on lovely hospital time (i.e. waking at all kinds of odd hours), posting in the middle of the night to say that Elizabeth did get her drainage tube out today and is sleeping soundly in her own bed. YAY! Two weeks is an awful long time to be in the hospital for something totally unplanned.

We have a whole lot of thank you's to post that I will be getting through this week. Our wonderful docs and nurses (most of whom will be named individually later this week) were great. And once again, Maureen Massarella (who was very brave and stayed while Elizabeth's drainage tube was pulled) made our stay as pleasant as possible with her homebaked cookies, home grown tomatoes, hand made jewelry, and time-occupying activities for the kids... oh, and did I mention MORAL SUPPORT?! Julia Rabago, with CHLA's child development center helped us immensely by getting Matt and Danny in for two days last week. Matt has also now decided that Julia's beautiful daughter Mikayla is his girlfriend (she is a couple years older, and still tolerated playing with him). I don't think Mikayla is in on that decision...

And Elizabeth certainly wouldn't have gotten through the long ordeal without Grandma Kirsten's visits... complete with plenty of goodies and activities (Grandma claims that that is what grandmas are for, afterall, but really, Mom, you don't have to spoil her EVERY time!).

We were also very excited to visit with the Duran family (the girls attended the ballet tea with Elizabeth on April 30... check the post from early May for the pictures), minus Noah and Zach (missed you boys!). Elizabeth was a not-so-charming hostess, but our boys and Mom and Dad were more than glad for the visit... and extra thankful for the great snacks!! (Mom says a big YUM and thank you for the Oreos... YES, Mom had some, too!) We adore big sis Haley (although, it seems Mikey is pretty fond of her himself...) and Abby is just the biggest bundle of love and hugs you'll ever meet. While we have never experienced the joy of "low counts", we appreciate Lindsay and Noe taking the time to visit, even with the added precautions they had to take for Abby's safety that we can only imagine. Thanks, guys, and we made the change in camp dates so it's a go!

Also, a big thanks to Chris Hoefflin for stopping by and visiting Elizabeth, complete with new bear friend "Fiona", who sports a very nice gold ribbon in support of Childhood Cancer Awareness and wears purple butterflies on her ears. It is truly a comfort to know that everyone at the Michael Hoefflin Foundation is available for us whenever we need anything, especially Chris and Sue Hoefflin and Lisa DeLong. Chris brings such a sense of calm into the room which, after too many days in the hospital, made a big difference!

Well, I'm tired now, so I'll end here, but the thank you's will continue trickling in...

Above all, thank you all for your prayers. During this hospital stay we met two particular patients that truly stand out that I'll be mentioning this week, too. Please remember that while most childhood cancers are successfully treated, there are still kids who lose the battle. Even kids who manage to beat the cancer will often have long term complications or side effects from treatment. When you say your next prayer for Elizabeth, please include the following kids who are also in a fight for their lives: Abby, Ava Rose, Amelia, and Nicholas. All four are kids we have met and all four need the prayers as urgently as Elizabeth does. Thanks again.

CT looked good - still in the hospital

Well, they are talking about pulling the drainage tube and sending Elizabeth home again. Her CT looked pretty good. The fluid collection is about the size of a grape. We also got the results on the last fluid sample. It did have bile in it. Hopefully, the leakage point has sealed up on its own. No real good way to verify that other than monitoring the fluid output.

The good news is that she is feeling much better these days. She is definitely happy and playful. Also, that means she is also her charming demanding hospital self as well. When she is feeling good, she seems to like and maybe take advantage of being waited on hand and foot!

So, as soon as someone makes a decision to pull the drain, she will be back home that day or the next.

Just waiting it out some more.
Thanks for checking in on the updates….
Talk to you later.

14 days in patient and counting

Just a quick update since it has been a couple days.

Everything is basically holding with the "don’t know what caused it"

Elizabeth did have her IFL Chemo last Thursday night to help keep on track with that. She was going to get the drain tube out, but the fluid level started increasing.

On a good note: Yesterday, they finally took her off isolation. So she could leave the room!!
We are hoping to get some information today. She has a CT scheduled. Also, the labs and doctors are back from the weekend off.

And a quick note to thank Dr. Henri Ford, VP and chief of surgical, for stopping by to check on how things were.

More to come.

good news!

this will be brief since i'm holding danny and doing this one handed...

pathology found NO SIGN OF CANCER CELLS in the fluid samples taken--YAY!! we still don't know what is causing the "abscess", though, but as long as it's not more cancer!

we'll be here at least one more week, though...

Mom's update

CT scan was completed at noon today. Hopefully we can get some much needed answers from it.

Elizabeth was NPO (no food/water) for the scan, but the NPO has been lifted, so no further procedures are planned for today, anyway.

As of last night, the bacterial cultures were still negative. Not good news when we were hoping this was simply an infection.

We have no results yet from pathology. They were sent a sample from the needle fluid drainage/biopsy on Friday. Since we are dealing in the real world where people don't really work over the weekend, we are two days behind in the cells being examined. Hopefully they have some time today to get to it.

We have no real explanations about what the CT really showed on Tuesday (or Thursday during biopsy, or today YET), so there is nothing to report on that front.

THIS IS WHAT WE DO KNOW:
Elizabeth had large amounts of fluid collecting both above and below the diaphragm on her right side. There was so much fluid underneath (pretty sure it wasn't inside the lung) her right lung that it couldn't expand... which caused the coughing. It was also irritating her diaphragm, which caused the refferred pain to her shoulder (just as you said, Lisa!) --yes, that is where that pain was coming from, and it's gone now (YAY!). The fluid has been drained (and is still draining a little since a drainage tube was left in on Friday). The amount of drainage continues to decrease daily.

WE STILL HAVE NO IDEA WHAT IS CAUSING IT.

I can tell you what we hope is NOT causing it... and that's more cancer. Anything but that. And if it has to be that, just let it be something that can be treated.

Mom is just a wee bit tired of the hospital and the beeping IV pumps. Please forgive the tone of this particular post. I am just so completely fed up with this whole "lifestyle" that I would so rather be rid of. Really, washing your three sets of clothes and Elizabeth's wardrobe of nighties for the third time in a week in the hospital washers is a drag. And yet, lest we forget, there are families facing so much worse right now that it's hard to have a real good pity party! *smile*

Please just keep Elizabeth and her doctors in your prayers. We really just need some divine guidance over here... some miraculous healing would be welcome, too, but we will take whatever we can get!! I'm still hoping that maybe the cultures were started on defective agar and that all of this is just an infection... HAH! Well... just anything but more cancer, okay?

Hospital Update - still there....

Dad here again.
Sorry for the delay in updating the site. It has been quite hectic with this hospital stay. This is the longest unexpected stay that Elizabeth has had.

Well, she is still at Children’s hospital and it will be at least a couple more days. After some delays, and some urgent paging to Bethie’s surgeon by Emilie, they decided on the CT guided needle biopsy and drain tube. This was done last Friday afternoon. It took about 45 minutes and this time Elizabeth had a tough time coming out of the anesthesia.

When I tracked her down in the recovery room, she was very agitated and fighting to keep the oxygen mask off. It definitely was one of her more difficult recoveries from sedation. I took the boys to McDonalds and Mom helped get her back up to the room so that she could get back on the morphine. They started the morphine the day before to help with the discomfort from the coughing and fluid pressure. She couldn’t lie on her back most of the weekend, but by Sunday afternoon lie on it a little about an hour after her morphine doses.

Overall, she is doing well. Although getting bored with the hospital room. Since she came in with such a nasty cough, they put her in an isolation room. Which means she can not leave at all. Well, except to go get the needle biopsy. That was the big trip out.

So far, the cultures have been coming back negative after about 24 hours. We should find out today if there is any sign of bacterial growth. If it is not infection, we are not sure what they are going to want to do. She has another CT scheduled for this morning. Hopefully, with the fluid out, they will be able to see better what is going on.

We will keep juggling things and update with more information soon.

Take care everyone.

ELizabeth is in the hospital

Dad here.
Well, the cough and fever was not from being “sick” or from the Chemo. Elizabeth went in for the regular Chemo, but it seemed the cough and shoulder pain was likely something else. Emilie had emailed what was going on over the weekend, so they went straight to examining Bethie. Here breath sounds were diminished on the right lung , so first order of business was to get an x-ray to see if anything presented. The results of the x-ray showed what looks like an abscess at the base of the right lung.

With that, they set up for a CT to be done right away. Well, 5 hours later right away. But with insurance approvals, getting a slot for the CT, debating over whether she needed contrast, etc., it was quick.

After that, Elizabeth was started on some IV antibiotics. Since day hospital was closing up, it was time to get admitted to the main hospital. So, she spent the night up on 4th floor east with Mom. Then another 3 or 4 IV antibiotics were ordered as well. Looks like it will be a several day stay at the minimum.

Dr. Marcio is leaning towards it being an abscess, but right now he can not rule out tumor based on the CT. It is likely that it is either post surgical related. But, it may also be some small bile leakage or several other possibilities. Dr. Stein, her last surgeon, will be taking a look at it to give some recommendations. But, the next step will be at a minimum a biopsy of the fluid for cultures. And some surgical options are also possible. We should have an idea of the next step today or tomorrow.

More updates to come as we get them.

Round 1, Day 21... really not feeling well

Elizabeth is having a hard time since getting her last dose of chemo on Tuesday. She has a cough, off and on again fever (the fever is normal for her, though), and her throat is bothering her. I'm torn between hoping she's just sick from something else and hoping she's NOT sick... if she's NOT sick, it means the chemo is doing this to her, and the road ahead on this new treatment will be a very long one.

Please keep her in your thoughts and prayers. I don't know what to hope is causing this, but we do want her to feel better soon!

Danny is getting his top two teeth (finally!) and is pretty cranky about that. He has had a runny nose and is generally out of sorts, which made us think that maybe he was sick with a bug (meaning Elizabeth has a bug, too, and the chemo isn't making her feel this bad), but this morning we felt his top two teeth starting to poke through, so that is probably what is causing his discomfort (to put it mildly). Ah, the speculation will drive a person nuts!

Mike and Dad are continuing to enjoy the X-Games. They were taken by Mr. Terri Randolph (with Dream Maker) through the Michael Hoefflin Foundation and got to go with Dave DeLong (the infamous Lisa DeLong's husband) and his daughter Joelle on Thursday (day 1 of the X-Games here in LA). They had special behind the scenes access passes good for the whole weekend, so they were able to go back yesterday (Saturday) and are there again today for the last day and the Big Air Skateboard finals. Crazy man Danny Way, who just jumped the Great Wall of China last week, is there competing. Mike is pretty excited to meet all the totally crazy out-of-their-minds (sorry, that's MOM's commentary) competitors and Dad is just trying to get the hang of using the video camera.

Matt is becoming more and more "terrible"... he's lucky he's so darn cute! Just when Mom is ready to banish him forever to his room he redeems himself by hugging her or trying to "take care of" Danny or make Elizabeth feel better. This has got to be the longest case of the "terrible two's" ever. Maybe it will end when he turns four in September?! Hopefully!!

Take care! Also, please pray that whatever has got Elizabeth feeling so sick doesn't interfere with her scheduled treatment (IFL only) on Tuesday the 9th. Thanks!

Round 1, Day 16 of Avastin/IFL

Elizabeth got her third day of chemo this round yesterday. She is feeling a little out of sorts (achiness, sore throat, a little coughing, itchiness), but we think most of it may be part of the "drama" effect that she experiences every time we go near a hospital. Yesterday was a long day with both Avastin and IFL (irinotecan, leucovorin, 5-fluoruoracil). We were there from 10am to 5pm. Yes, a fun day for Elizabeth, Danny, and Mom at the hospital... and from what we've heard, an equally fun day for Grandma Kirsten who stayed home with Matt and Mike. Thankfully, there are only 2 full days like that per round, and that one was our last until we start round 2... which will be after day 42 (we're at day 16 now).

Elizabeth will be doing ballet today at 1:30pm and Grandma Kirsten will come to watch. Hopefully that will be incentive for Elizabeth to keep on fully participating!!

Mom and the kids visited the Aquarium of the Pacific (in Long Beach) again on Monday and even got to enjoy a short 45 minute harbor cruise. Mike liked it the most (he is Mom's little ocean boy), as Elizabeth, Matt, Danny, and Mom were lower deck, upper deck, lower deck, upper deck, etc... the entire time as Elizabeth wanted to be downstairs and Matt wanted to be upstairs. I think we'll take Dad next time and split us up!

We're enjoying our summer and planning a beach trip very soon--maybe even some overnight beach camping in the Santa Barbara area. School starts the first week of September, so we're trying to squeeze the rest of summer fun into the next couple weeks.

Thanks again to everyone who has been checking in on us and praying for Elizabeth. Anyone who has ordered bracelets and hasn't gotten them, they are in the mail as of today. There are more still left, too, for anyone who hasn't gotten one and still wants one. We also have business cards with Elizabeth's webpage information and picture printed up that I would happily send out for any of you who are passing on Elizabeth's Story to your friends and family and would like a couple cards to pass on. Just email your address to me. Wear your sunscreen this week!