Wednesday, October 9, 2013

Our Trip in Pictures

Our hotel was across the street from Texas Children's hospital. It was SOOO nice to be able to walk over to hospital. We sat outside of the Starbucks by our hotel and ate breakfast. The kids enjoyed the busy downtown Houston street.  

Brian's first appointment was meeting with a couple of dermatologists to look over his skin. The waiting area had a mirrored room the kids enjoyed.

After meeting with the dermatology we went back out to the waiting room to wait for Brian to be called back for his biopsy. He did so amazing through the entire biopsy that the nurse handed Brian two fistfuls of treats and toys. He was quite proud. He didn't even realize he had stitches in his head.

The eyeball bouncy ball was a favorite.
   The appointment with Dr. McClain was next. Brian gave enough blood to drain his body. Obviously, not really, but it was a lot. He's a trooper!
When Dr. McClain came in the room he asked Brian several questions then decided we needed to go straight down to radiology and get some X-rays. There were some technical issues with the computer system and perhaps they had changed some codes for ordering specific images (without telling the doctors) so we sat in the room for quite some time watching Dr. McClain try to figure out how to order what he wanted to be done. Fred and I chuckled because Dr. McClain ended up writing what he wanted on a blank sheet of paper and signed it. He included his pager number and told us to head downstairs. In the meantime, Brian was getting restless so I gave him my phone. He took several pictures.

The view from the 14th floor.

We got down to radiology and changed Brian into his gown. There was a waiting room that looked like a dressing room in a department store. Brian was goofing off and managed to run straight into a wall and bust his lip. He was upset and just wanted to get out of there. Since the day was almost over (by this time it was well after 4) and most people had cleared out, I let Brian come peek at his siblings through the glass. They were in the main lobby waiting room for the entire eighth floor.  Right about that time it was Brian's turn to go back for imaging.

Again, Brian did an impressive job. We were in and out and headed back upstairs to see Dr. McClain by 5:15-5:30 PM. By this time all the office staff was out of the office. Fred flagged someone down and told them we were told to come back upstairs and see Dr. McClain.  We waited in the waiting room for a few moments and the kids were totally restless by this point. I believe Brian began milking the Winnie the Pooh cow. You can tell by the decorations that we were in Texas.  :-)
Dr. McClain came out and said that the report from the X-rays were not in yet (probably because it was after hours) but that from what he could see it looked good. Fred and I were a little confused and said, "Well, that's great, but what's on his head...we thought it was LCH again? What's going on?"
    Dr. McClain then casually stated, "Oh, yeah. I'm 100% confident that it's LCH. He'll be on chemo for six months for that...I was just talking about the bone!! As far as I can tell LCH is not in the bone right now."
     Picking up on our confusion and shock, Dr. McClain took us back into a room and talked with us for a little bit longer. He answered our questions, but we were so stunned that we didn't think of some of our questions until after things had processed later that evening. It was about that time that Brian's head was no longer numb and he started complaining about it itching. He got really clingy and fussy. We took the kids to the pool for a bit, but Brian couldn't get his head wet. The evening was kinda stressful as we juggled talking through everything, trying to accommodate Brian, and letting the other three burn off their pent up energy. I (Carrie) also started to feel poorly and notice a familiar rash I had earlier in the year. Yes, welcome back Shingles. The shingles virus lays dormant in your body after you've had chicken pox. I laugh because the doctor told me that it can be "brought back up" by stress.Yes, we've been VERY stressed the last 12 days. (I started the medicine for shingles last night and it makes me sick and dizzy. Hopefully I will be over shingles soon.) Anyway, back to Brian,  Dr. McClain told us that Brian should have a PET scan soon and in April '14 a new MRI. It's really too soon to do another MRI and notice the LCH involvement in the Central Nervous System if it's there. He really needs a good year in between the two images as things change so slowly. 
   Brian will begin his new oral chemo this week. He will need blood work every two weeks to check counts and liver function. While we are SOOO thankful that Brian doesn't need a new port and can take his six chemo pills one day a week for six months from home, we are ready to identify where LCH is active in his body and deal with it once and for all!!! We have suspicions that it is in the Central Nervous System. April of 2014 will be a telling time as we will be able to compare the two MRI images.
Please keep Brian in your prayers as he begins his next chemo phase. We will keep you updated.


nancygrayce said...

You all amaze me! Russell and I are praying for you all.

Missy said...

Oh Carrie...
Prayers are started up again here for Brian. Ellie will be so sad to hear this. You were heavy on my heart last week without even knowing your recent news. The von Herrmanns are praying!

Jackie said...

Our prayers are with each of you.