As many of you already know via my play-by-play updates via Face Book yesterday, Lauren had her 3-month MRI, which indicated it is stable.


It was a very long day at CHLA yesterday -- MRI, blood test, Pantamidine (anti pneumonia via IV), appointment with Dr. K, chemo, and appointment with Dr. Finlay. They were running late in the radiology department. I think this was the first time they were ever behind schedule since we've started so Lauren's 10:45 am MRI didn't happen until 11:30. Since it takes about an hour and a half for the MRI and then another 45 minutes to recover, we didn't get to the day hospital until almost 2 pm. Which meant we missed our 10:30 appointment with Dr. K, which was no surprise since Lauren's MRI was scheduled for 10:45. They had planned to squeeze us in because Dr. K needed to examine Lauren before we started her chemo but…, it turns out that they didn't even have Lauren scheduled for chemo. They forgot to schedule us even though this was her normal day of chemo. We should have caught it during her last chemo since they give us a print-out of the next appointment when we leave. Oh well.

They also needed to get the results of her blood test before they could begin the chemo too (which can take an hour or so to get the results). and since we weren't scheduled for chemo, the pharmacy wouldn't have her chemo prepared. We also weren't scheduled to meet with Dr. Finlay either, but they were going to squeeze us onto his schedule. Oh and most of the nursing staff there usually leave at 5 pm. Normally when Lauren gets her chemo, she'll get there at 10 am, but isn't done until 7ish, so I was thinking we'd be lucky to get out by 10 pm. While all this may sound confusing, frustrating and unorganized, it really wasn't. It can be truly organized chaos over there. We are so fortunate that the nurses over there take such good care of us. Nurse Chris and Nurse Liza took charge. They added Lauren to the schedule, called down to the pharmacy to get them started on Lauren's chemo, found a bed for us, tracked down our NP Joyce, Dr. K, and Dr. Finlay, started her Pantamidine, and even got us pizza.

There was a few "oh shhtt" moments though.
Oh Shht Moment #1: Nurse Liza came over and said that the doctor told her not to start the chemo, that he wanted to talk to us. That caused me to get that "pit in the stomach feeling" and a hundred thoughts running through my head. Did they find something on the MRI? Was the chemo not working? Did they want to give her a different chemo? Thankfully, Joyce, NP, came over and told us that Dr. Finlay was still reviewing the MRI, but that his initial reaction is that the tumor is stable and that he believes it might have even shrunk a little.

Oh Shht Moment #2: A little girl crashed (vitals dropped) while we were there. Lauren's bed was across from the day hospital emergency bed. You could feel the intensity shoot up. Nurses were running around. Doctors (including Dr. Finlay) were in the room. There were nurses three deep outside the girl's door peering in. We were trying to distract Lauren from seeing what was going on, just in case. But thankfully she stabilized and everything calmed down. She was eventually released.

Oh Shht Moment #3: During her chemo, Lauren's blood pressure dropped, which brought back a lot of memories of when she went septic and nearly died in Dec. Thankfully when they sat her up, her blood pressure returned to normal (it was still low, but not alarmingly low).

Dr. Finlay finally came by to see us around 4:30. He said, great news, the tumor is stable. It has definitely not grown but it did not shrink either. He also said that the spectroscopy indicated that there are no enhancements indicating that there is no or little activity going on inside the tumor, which is good news. While I wish it would have shrunk, I am just happy that it's stable. Dr. Finlay did think that Lauren's shaky hand is tumor related. That caught me a bit off guard. I always assumed it was steroid related. He mentioned something about scar tissue caused by the tumor shrinking, but he doesn't think the tumor shrank, so I don't know. I was more than a little confused, but I didn't press the issue. A lot of what he says goes over my head. I going to be more assertive when we talk with him in the future. We're also going to try and lower Lauren's steroids again. This time we are going to switch to a liquid form of Decadron (which I didn't even know existed). This will make it easier to lower it from 0.5 mg to .04 mg. It's tough to be that precise when you have to chop a tiny-tiny pill.

So at the end of the day we got out of there by 7:30 pm. Which is the normal time. I'm not sure why it takes so long on other days. Like I mentioned before, we're so fortunate that everybody there takes such good care of us from Nurse Julie in the radiology department, to Sarah in the play room, who saved two shirts (for each of the girls) from when Paris Hilton visited CHLA last week (I always miss the celebs, but she did get me an autograph photo of her), to all the nurses in the day hospital. Thanks everyone. We love you guys.

Of course on the way home Lauren needed to have her Shin Sen Gumi (ramen noodles). So we stopped by even though it was almost 8:30 and she had two hours of chemo. She was so hungry she was literally shoveling the noodles and soup into her mouth. She had soup and pieces of noodles dripping down her chin and neck! It was understandable since she hadn't really eaten all day. When we finally did get home she still needed to take her nightly chemo. What a trooper!! She never complained once during the entire day. She is truly my hero.