Brian Robert & LCH: Legoland and Update

Wednesday, March 28, 2012

Legoland and Update

We spent the weekend with our dear friends that are like family and went to Legoland on Monday. We had a blast.
Friday night we went to a dinner theatre at our old church. Our friend is the music director for the youth choir and she did an amazing job putting together the entire evening. We loved it! The boys (particularly William) were captivated by the music. They liked when the men played the best.

Brian is a sweetie, but when he is done...he is done!! I wanted to capture a picture of the four kids and he didn't want to. The picture makes me smile. It's totally Brian when he is tired.

See, Daddy had to carry him back to the van.

By Monday Brian was rested and ready for Legoland. At this point he was still drinking like a thirst machine and peeing every thirty minutes during the day time. We stopped for Brian to go potty on the way to Legoland at least four times. It was an hour and a half from our friends house.

All four kids were excited when we saw the sign!!

The day begins...

Right off the bat we saw Darth Vador and R2-D2 made of Legos.

We also ran into some super heros. We saw a Lego pirate show, rode some rides and traded mini figs with employees. It was a great day. We are super thrilled that we went when we did.

Quick update, Brian has started taking two pills now, one in the AM and one in the PM and has a MRI scheduled for Friday.

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Brian, BB or "B-ber"

Brian is our seven year old boy. He is the third of four children, all born in just four years. Sept 2009 Brian was diagnosed with Langerhans Cell Histiocytosis. He spent seven months on Chemo and steriods. In April 2010 we had his port removed and celebrated "no more chemo!". His treatment from May forward was oral medicine on the weekends and scans/bloodwork every three months. Brian's firt set of scans/follow up with the oncologist in July were wonderful. We didn't quite make it to his second set of scans three months later in October. In late July/ early August we started noticing suspicious bumps on his scalp and a rash on his private area. On Sept 15, 2010 we took Brian to his oncologist. That appointment revealed the possibilty of more chemo. September 21 we had a biopsy that two days later revealed that Brian's LCH was back. We immediately had surgery to implant a port and in Oct 2010 started a second journey through chemotherapy and steroids for our little Brian. In March 2011 Brian's chemo drugs were changed around as his new protocal was not working. Brian was still presenting symptoms. We went back to the original combination of drugs but this time instead of being on them six months the plan was for twelve months. Brian completed his second round of chemo March 8, 2012. Even though Brian was completing treatment, we started noticing symptoms of Diabetes Insipidus in March 2012. He was diagnosed with D.I. March 22, 2012. His new diagnosis was considered a relapse for his LCH. Brian's third round (or fourth protocol depending on how you look at it) of chemo and a totally different protocol began April 2012. He had chemo five days in a row followed by a three week break for 12 months. He completed that protocol the first week of April 2013. In July of 2013 Brian had his port removed and we were over the moon excited about NO MORE CHEMO. In October of 2013 Brian had a recurrence of symptoms. He took six months of oral chemo. In April of 2014 he had another MRI. It was decided that Brian could stop treatment. By August-September 2014 he started showing symptoms again. October 2014 we are back in Houston to see what the next step will be for treatment of Brian's LCH.