Happy Anniversary and hospital update

Well, it is one of those anniversaries that are hard to celebrate. It has now been over 2 years since Elizabeth was diagnosed. Friday (today) marked the big day. Elizabeth spent most of the day sleeping. The tube went in successfully late on Thursday. There were some issues with her coagulation studies that put it on hold, but that was quickly resolved with a lot of help from everyone in Radiology including Dr. Stanley who personally walked the new blood draw over to the lab. It took less than 20 minutes to get the results.
Early information on the cause of the fluid from samples is leading to some type of infection. Elizabeth has already been on several antibiotics with no improvement, so they are leaning to a fungal infection. It will be days before we get any concrete answers. Meanwhile the nasty thick fluid is draining out, so that is the most important thing right now. She will probably be in the hospital for several more days until they figure out what is causing it for sure.

I added a link on the right to the web pages on the conjoined twins that were separated at Children’s last week. They have a lot of media pictures on the site. It was eerie because it mimicked Elizabeth’s surgical stays so much. If you take a look, it gives a good idea of the process Elizabeth goes through for each surgery.

Hospital stay - Need to drain

Elizabeth’s symptoms worsened quite a bit yesterday. The side pain was much worse and she couldn’t stop coughing. Seemed like the fluid was constricting her lungs more and more. After a brief trip through day hospital, Marcio got us set up to admit in the hospital. Worked out well with room. Mom got her favorite wing on the fourth floor and a “B” bed to boot. Extra bonus with no room mate last night, but that can change quickly.
As of yesterday, they could not figure out when Radiology would be able to get her Elizabeth in to put a drain in using CT guidance. After much debate about Radiology’s schedule, today Marcio got vigorously involved. For now, she is scheduled to have the drain put in tomorrow afternoon.
In the meantime, she is doing well with the Tylenol with Codeine and is her standard assertive, precocious self. Charming and keeping all in line. It is so nice to see her with so much spirit even when she clearly feels like crap. She is a tough girl.
Till there is more news, Elizabeth is hanging out in 436B at childrens.

CT scan results from Friday

We're still waiting for the final report, and to talk to Dr. Marcio and Dr. Stein, but for now this is what we know...

Our wonderful NP case worker, Patricia, was able to discuss the results a little and faxed us a copy of Friday's CT scan preliminary report. It appears that Elizabeth has quite a bit of fluid built up under her right lung in her right liver region. I couldn't tell by the report if it is above or below the diaphragm, or both, and it may be that the CT scan isn't clear about it either. There is definitely some fluid in the liver region regardless, I think. There is also evidence of severely diminished lung capacity in the mid-right lobe area. The nodules (cancer) that was in the right lung appears to be unchanged since March, and the potential nodules in the liver area that have been monitored also appear unchanged, if not better.

So the report sounds somewhat better than we had been expecting, but that could be because I'm reading it and not looking at the scans myself. There was noted "scattered streaky lung disease" that was not attributed to the cancer, though, that has me concerned. All things we will discuss with Elizabeth's docs in the very near future.

While it doesn't seem that tumor resection is necessary at this time, the fluid will most certainly have to be drained. We went through fluid drainage last August... that visit started with a normal blood draw visit, led to an x-ray, then an immediate CT scan, and a drainage tube inserted followed up with an unexpected 15 day hospital stay. Hopefully, any hospital stay this time might be shorter!

I'm relieved by one of the last sentences of the report, though.
"No new foci of metastasis are seen." Good news.

This is Dr. Stein and Elizabeth in April at one of her surgical follow-up exams.

Catching up on Updates

I must first apologize for taking so much time away from the blog. I know we have so many people who care about Elizabeth and are praying for her, and we appreciate your concern. I will try to keep this really brief and stick to the medical details for now. Elizabeth has been enjoying her birthday (which seemed to last the entire month of May and into June thanks to her amazing Angel friends and everyone else present in her life... thank you everyone!) and we have been focused on family time.

As of the last update, we were just finishing up our first 4-week round of Sutent. Elizabeth was feeling really really good during the first 3 weeks on the drug. Then the side effects started to show up--mainly just fatigue and minor aches and pains with low grade fever occasionally. Her AFP levels were:
Post surgery, two weeks before starting Sutent: ~200
Day 1 on Sutent: ~600
Day 15 on Sutent: 489
Day 29, first day off Sutent: ~660

We then were off Sutent for two weeks. Elizabeth continued to feel more lethargic and started having chest pain and right shoulder pain more frequently and with more severity. Adding 10mg Pepcid with breakfast and dinner seemed to help the chest pain quite a bit (phew! only heartburn/indigestion... a sigh of relief), but there wasn't much we could do about the shoulder pain (probably referred pain from her right lung area again) except give her Tylenol. At the conclusion of the two weeks off treatment, Elizabeth's AFP had sky-rocketed.
June 2, Restarting Sutent after two weeks off: ~2500

This indicates two things... one, being off treatment is a bad thing. Elizabeth's cancer goes wild. Two, the Sutent seems to keep the cancer steady.

After having been on the Sutent again for two weeks now, Elizabeth had another AFP draw today. It is at ~2700, which is virtually the same as it had been when she restarted. Since she was getting a blood draw at the hospital today anyway, we had requested a chest x-ray. Elizabeth has had a lot more shoulder and right chest area pain and we were even considering the possibility that she may have a central line infection causing the pain. The chest x-ray showed something has definitely further developed in the lower right lung area, the same area that the pebble sized tumor detected in April was. Since Elizabeth has been having more symptoms coupled with the x-ray results warranted an emergency CT scan early this evening.

We are extremely fortunate to have two amazing doctors taking care of Elizabeth. Dr. Marcio Malogolowkin is the best oncologist we have met, and we really feel like he cares about Elizabeth as if she were family. It's not often that patients can say that. He contacted Elizabeth's surgeon as soon as he had the x-ray results to give him a heads up. Elizabeth's surgeon is the quite capable Dr. James Stein, who is plastered all over the news here in Southern California because he headed up yet another conjoined twin separation surgery two days ago. In fact, Dr. Stein had just finished a major press conference before running into Elizabeth and Dad at the hospital this evening. He said he had already talked to Dr. Marcio and would be reviewing Elizabeth’s CT scan tomorrow. Tomorrow is Saturday, and he just finished over 24 hours of twin separating surgery, yet he is reviewing her scan tomorrow. Yes, I do think we are in good hands.



Obviously, we are quite possibly looking at surgery in the near future. We are tentatively putting the Make-A-Wish trip (Elizabeth wants a Disney Cruise) on hold. It is just so hard to plan anything with this pesky cancer always getting in the way. If only the only thing we had to worry about was vacation planning…

In the meantime, Elizabeth just isn’t feeling like herself lately. The Sutent is starting to kick her butt. She is quite puffy (lovely prednisone look) and tired and achy. Sometimes her heart races, which scares her, and she gets sweats and mild fevers. She still has plenty of fun, though, and has anywhere from two to five good hours in the day when she isn’t too whiny, too fatigued, and too irritated to enjoy herself. One of the more odd effects of Sutent is hair color loss. She has white roots growing in right now.

So things are very much on edge around here for now. So much uncertainty. Welcome to cancer.

One of our dear friends, the Family Outreach Coordinator at the Michael Hoefflin Foundation (the link is on the side bar!) is reliving the cancer nightmare. Lisa DeLong, whom I’ve mentioned many times here before, lost her first son, Justin, to leukemia six years ago at the age of 15. Her six year old son, Jacob, was just diagnosed with leukemia last week. It just seems so impossible and completely unfair. Lisa and Dave also have two daughters older than Jacob. Please keep the family in your prayers. I simply cannot imagine the horror of another cancer diagnosis.