Brian Robert & LCH: BB's hair

Tuesday, October 12, 2010

BB's hair

People keep asking how Brian responds to the chemo. While it is different for everyone and they can't predict who will lose their hair and who will not, here is what Brian experienced last go around. He is taking a more aggressive approach this time.

Brian's double crown is too cute. Mommy took this picture in September 2009. Brian's before picture.

This picture was taken in February 2010. This is Brian's during picture. There were no hair cuts or trims. This is his hair left alone while on chemo. It is thin and fried with some bald spots.

When Brian's hair was wet you could really see his bald spots.

Brian's hair October 2010. Before chemo. I love this hot mess! He really needs a hair cut but knowing it is probably about to fall out makes me not want to cut it. I LOVE Brian's double crown.

The above two pictures of Brian's hair right now are what our boys call "popped up" hair. Both William and Brian have a double crown. When they get some length to their hair it gets a little crazy. If it is cut too short it stands straight up all the time. I love their swirls on the top of their heads!!

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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.