Brian Robert & LCH: October 2014

Friday, October 24, 2014

Update Oct. 2014

We saw Dr. McClain today and received GOOD news. Brian's MRI was NOT changed. This is wonderful as it means that Brian does not have to start any new treatment. Brian does have symptoms presenting, but Dr. McClain said that in their current state he would not do anything to treat them. If the lesions get as big as a thumb or if Brian starts to have balance problems, or significant drainage from the ears, then doctor McClain would want to treat. But since none of those things are going on and Brian's MRI is unchanged then we continue to watch. This is fantastic. Brian has a tremor, but he has been exposed to some harsh chemo over four and a half years of treatment. (September 2014 marked five years since diagnosis and Brian hasn't been on chemo since April 2014.) We are thankful for the blessing of today's good news and the reassurance that Dr. McClain will not be retiring for several years. And after that time he will not retire but just adjust his schedule. We are SO thrilled he will be Brian's doctor for the foreseeable future!

Thank you for your prayers for our precious Brian Robert!!!

Thursday, October 23, 2014

Back to Texas Children's

We are in Houston to see Dr. McClain again. Brian has been off chemo since April, but just like the past several years he started showing symptoms by early fall. Truly, he has a pattern. Just a few months off treatment and symptoms come back! So, here we are. Yesterday Brian had an MRI and he did it withOUT sedation. Forty-five minutes in a loud, clanging-banging MRI tube LIKE A BOSS!!! We are so proud of him.

Today we went to the Houston Zoo for a fun family day. Thursday's the doctors and radiologists at Texas Children's Cancer Center review files and discuss treatment plans. We were told Brian's case would be one of the top studied and reviewed today. Tomorrow we meet with Dr. McClain and discuss where to go from here. Thank you for your prayers. We are carried by them. We will keep you updated.

(Trying to add pictures but can't figure it out from my phone.)

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.