New Treatment

We met with Dr. Marcio on Wednesday, July 26th, as planned. We were given two options for treatment: 1) stay on the Sutent, or 2) try a new "metronomic" approach using cytoxin (cyclophosphamide) and vinorelbine (a relative of vincristine and vinblastine).

While we feel that the Sutent was helping to stabilize Elizabeth's cancer progression, Dr. Marcio is rather certain that it caused Elizabeth's last month-long hospital stay, much like the Avastin caused her 2-week-long August 2005 hospital stay. Elizabeth's current state of health is improving, but her body is still recovering and she is still somewhat fragile. Risking another "bleed" and possible subsequent infection at this point is not a wise choice. So we are going with option #2.

Elizabeth received her first infusion of vinorelbine on Friday, July 28th. She started her oral daily cytoxin Saturday morning. So far she is not experiencing any noticeable side effects, and we hope that continues to be the case. The treatment plan calls for vinorelbine infusions on days 1, 8, and 15 in a 28 day cycle, and a dose of 37.5mg cytoxin every day continuously (oral pills). We will be regulars at CHLA again on Fridays, at least for the next three weeks while we finish out this first round. If it isn't having any effect, we will then explore returning to the Sutent and/or whatever other chemo/drugs we haven't already tried in the past 2 years (there aren't many left!). Elizabeth's body needs to be far enough out from her recent surgical procedures (she had several during her 6/20-7/21 hospital stay) that we wouldn't be risking a bleed before we re-start Sutent.

This decision wasn't easy. Dad and I really do believe that the Sutent was having a positive effect in holding the cancer at bay. And we aren't abandoning the hope of using Sutent again in the future. Elizabeth just can't take another month-plus long hospital stay so soon, either physically or emotionally. We are hoping that the vinorelbine/cyclophosphamide continuous low-dosing will have the desired effect of continuously chipping away at the cancer cell membranes and keep it from spreading until she can get back on the Sutent, either in combination with the new treatment or instead of it.

Elizabeth is starting to get back her strength, though she isn't 100% yet. She has been showered with Angel mail yet again, and it has helped raise her spirits immensely. I can't even begin to describe the positive effect the stream of mail has on her. She is always happy to get cards and presents from relatives, but there is something intrinsically magical about getting special cards from people who she has never even met before. It makes her feel so very important. Thank you.

Today we are planning a big family outing--Costco shopping. Our first time out with EVERYBODY in the past two months. Elizabeth is looking forward to a hot dog lunch, probably followed by a churro, before we venture into the Sunday shopping Costco mob. Going to Costco may not sound very fun, but Elizabeth loves weekend Costco trips because they have "tables" as she calls them. Tables and tables of SAMPLES. She really is a simple girl at heart, and free finger foods make her smile! So that will be our big adventure for today. Our family schedule will finally start to slow down a little so we can get to planning our Sea World visit and Make a Wish trip, not to mention starting school again. Hopefully we'll be able to have some family fun time out of the house in the next week or two.

Thank you for your continued prayers. Please pray that this new treatment will be instrumental in stabilizing her cancer spread, at least until we can start back on the Sutent. Her tumor markers are over 6600--the highest they have ever been. Ever.

Going Home!

Well, after being in the hospital for a month and a day (no, that's really how long it's been--I'm not being figurative!), Elizabeth will FINALLY get to come HOME today! Of course, it's been so long that I don't think I'll actually believe it until she is home in her bed. This marks the end of our longest hospital stay ever... and hopefully she won't have to endure one again for a good bit of time. There were so many little things going on (and big things, too) with this stay that it's really good to get her home. We still think CHLA is the best place for her, and her primary docs there are the best ever, but it has been more than a little frustrating dealing with hospital policies and mix-ups this time around. I'm so excited to get her home!

Mike is off to camp again--this time to Camp Ronald McDonald for Good Times near Idyllwild. He'll spend another week at camp and once he's back we can hopefully get some quality family time all together again. We're going to work on planning that Make A Wish trip that Elizabeth has been waiting for, and try to squeeze in a couple of days in San Diego once she feels up to it. We will need to have oxygen for her at home for a little bit still as her lungs continue to heal, and she will still be getting IV antibiotics, so we've got a couple of weeks before she's up and about again it seems. We will discuss treatment plans for her cancer and precautions to protect her liver with Dr. Marcio next week, and hopefully get some sort of plan worked out.

Please keep Elizabeth in your prayers. It's beginning to feel like the path we're on is taking a turn that I don't want to go down just yet, although no parent is ever ready for that I'm sure.

STILL HERE IN HOSPITAL!!!!!!!!

Well, sorry for the delay in getting an update on the hospital stay. It has been a very exhausting stay. Mom and I have been switching off about every 5 to 7 days. With one of us at the hospital and the other home taking care of the boys, it has been difficult. It is hard to believe that we have been in the hospital for an entire month. This stay has been full of more “small” problems than I could ever have imagined. We have had more errors this stay than all other times put together. Everything from Elizabeth de-sating, turning blue and passing out from accidentally being disconnected from oxygen with no one responding to the alarm to incorrectly reported lab results causing her to be needlessly exposed to VRE( a bacteria you don’t want to have in a hospital).
At any rate, we have been plugging on, but it has taken a toll on everyone emotionally and physically. Part of the reason an update has been delayed.

We just want to get her home as soon as we can. Since the last update, she successful had the original pigtail tube removed without incident. The fevers continued and the infection was still substantial in the lungs. Her normal surgeon, Dr. Stein, performed a VAT(Video-assisted thoracoscopy) in which they used a camera to go in the chest wall and scrap the empyema infected goop away from the inside chest wall and off the lungs. It was so thick that the antibiotics would not have been able to get to it. She has improved steadily since then. Elizabeth is still struggling with the fluid balances and that is making it difficult to fully heal and re-expand the lung. We will most likely go home on the IV antibiotics and oxygen. However, it will depend on exactly how she is doing when we can get her out of there. There seems to be a push to try to get her out soon. Last Monday was supposed to be the day, then it was moved to tomorrow and now they aren’t sure.

As to the impact of her liver function issues and treatment, those decisions are on hold until after we get through this period. More to come. Please keep prating for Elizabeth.
Dad

Day 17 of this hospital stay

Well, today looks to be the day to get the original tube out. Everything has been holding steady with the bleeding site. Ya!!! The second tube will come out today and then, we will be down to the urinary issue in order to take about coming home! Once we get her back to normal and all the excess fluid out, we should be on the right track.
With the CT’s that we have done recently, it appears that Elizabeth’s liver is struggling with all of the treatments. Not sure what that is going to mean for her treatments, but we will see.
Off to the hospital for another switch out with Mom. More to come.

Bleeding update

Well, after a very eventful day yesterday, Elizabeth is holding steady.
The site where the large second chest tube was removed bleed very heavily yesterday morning. It was quite traumatizing for both Mom and Elizabeth. Pressure wasn’t stopping it. Once the surgeon was able to remove the entire bandage and find the bleed site, direct pressure to that spot worked. New bandage and more pressure held it for a while. It started bleeding once more and then we convinced them to give her platelets. While Elizabeth platelet level is about normal, since she has no spleen she is normally more than twice normal.
At any rate, she has been stable now since about 1 pm yesterday. The original tube is still in place and will come out soon (but not too soon because of the bleeding problem). She is finally taking off some of the weight and things are moving in the right direction. If we can get her urinary problem on track, we should be in good shape provided there are no complications with taking out the last tube.

For now, holding and praying for the best. Been 2 weeks so far this time and that’s more than enough time.

More to come. Dad.

Still in the hospital

Well, a lot of information about the hospital stay to catch up on. First, the fluid was in fact a bacterial infection. The pig tail drain that was put in is still there. Last weekend, another problem started. Elizabeth was not peeing. She began getting very puffy all weekend. Multiple attempts to make her pee by giving extra saline in her IV did not work. Mom had to say enough with the saline! Unfortunately, the brand spanking new residents did not want to listen to Mom’s insistence that this was not normal for Elizabeth. Monday came around and the attending and fellow saw her and said, “What happened!?!”. Upon weighing Elizabeth, she had put on 4 kg (about 8.8 pounds). The cause of that turned out to be very low albumin. Multiple doses of albumin and a continuous drip of lasix has helped to correct the problem, but she is still holding fluid.
The next major problem was an additional fluid area in the chest wall. This one was higher up and along the side and around the lungs. Last Friday night a chest tube was put in to drain this area. This brought a great deal of relief to Elizabeth and helped make her much more comfortable. That tube was removed yesterday early evening. It seems now that the site is not healing properly. It has been having abnormal bleeding and we are not sure what is causing that.
I will try to get more updates posted sooner this time.Please keep Elizabeth in your prayers.