Lauren was up at CHLA for her next dosage of chemo and a scheduled appointment with Dr. Finlay, who is finally back from his three week vacation in Paraguay.  The last time we saw Dr. Finlay, Lauren was admitted with her eyes stuck looking left and he was on the way to the airport.  He had stopped by the hospital in the morning to check in on Lauren and her CT scan, which he felt indicated that the tumor was stable.  Of course, after the MRI (which shows great details) we found out that was not the case, that the tumor was again active and we have been anxiously waiting for his return ever since.  Thankfully he checks his email while on vacation and was able to recommend an alternative chemo regiment rather than radiation which was being recommended by Dr. Dhall. 

Our meeting with Dr. Finlay
After Lauren received her monthly treatment of pentamidine (prevents pneumonia) in the day hospital, we headed over to the clinic to meet with Dr. Finlay.  As always, we could hear Dr. Finlay's loud and enthusiastic voice booming from down the hallway as he and Dr. Brown walked towards our room. This always makes us smile, we always say, "here comes Dr. Finlay".  The first thing he did when he and Dr. Brown entered the room, besides giving me a hand shake and Hilary & Lauren hugs, was jump up and sit down on the waiting room table and gave a big "sigh". Letting us know that he was obviously not happy with what has happening inside her tumor.  He didn't go into too much detail since Lauren was sitting in the room.  While she was coloring, we all knew she was listening, she is always listening.  He wanted to reassure us the new chemo protocol, procabazine, and CCNU that he is recommending is not a palliative chemo regiment.  It also isn't something he just randomly pulled out of thin air. They have been using this chemo regiment since the '70s and that it's proven to be effective but has more side affects than some of the new chemo, like temodar.  I did ask him about radiation, since Dr. Dhall was recommending it.  He said Lauren's tumor is too big and that it would effect too much good brain cells, resulting in both severe, immediate and long term mental deficiencies.  He also said that he and Dr. Dhall have discuss this, and that Dr. Dhall is now also in agreement with Dr.
Finlay.  So in Dr. Finlay opinion, radiation will never be an option.

As always, when it comes to Lauren nothing is routine.  While Dr. Finlay was instructing us on how and when to begin giving Lauren the next phase of chemo, which is the CCNU,  that he wanted me to break the capsule in half, wearing gloves, making sure I do not touch the granules inside, because they are carcinogenic (huh?  I thought it was suppose to kill the cancer and cause), I could see out of the corner of my eyes, Dr. Brown just staring and watching Lauren.  That's when everybody stopped talking and looked at Lauren.  You could see Lauren was really struggling to breath.  Her chest was rising and falling really fast.  Because she also had a cough, they sent us over to the main hospital for x-rays to make her lungs were okay, which they were.  However, they could tell she was severely constipated.  She had so much poop that her stomach was being pushed up into her lungs making it difficult for her to breathe.  Ever since she has gone on chemo and steroids, constipation as always been an issue with her.  Dr. Finlay recommended an enema. One of the nurses pointed out that it was a long drive home and wondered if it was good idea to do at the day hospital since it was already past 6 o'clock (most of the staff in the day hospital leave at 5 pm).  So our option was to be admitted or do it at home.  We chose to do it at home.  So they instructed us how to do it, loaded us up with absorption mats and sent us on our way.  One of the things they said was after administering the enema, to make sure she holds it in for 20 minutes, Lauren only last 4 minutes.  What a mess!  I don't think I could have done what I did last night for anybody other than my children.   While a fair amount came out, there was not nearly as much as I would have expected.  Waiting for CHLA to call or email us back to see if we need to come in or do another. 

I can not say enough about what a amazing and tough and awesome daughter Lauren is.  That poor girl has gone thru so much.  After a long day at the hospital, long drive to and from, to have to be violated like that when she finally got home, without much of a fuss or compliant.  It's so unfair what she has to go through.