Brian Robert & LCH: Texas Bound!

Thursday, March 14, 2013

Texas Bound!

We are headed to Houston today to see Dr. Kenneth McClain. Brian's appointment is tomorrow morning. We picked up the CD of last weeks imaging (from his MRI of the brain) and we are ready!!

Prayers appreciated. We will keep you updated.

4 comments:

Elaine said...: How very, very exciting. I've been checking almost daily waiting to hear! Will be praying for this doctor to be used of God to heal Mr. Brian! Love ya'll! Be careful and keep us posted!; March 14, 2013 at 9:53 AM
nancygrayce said...: Oh, PTL!!!; March 14, 2013 at 5:47 PM
Anonymous said...: We are praying, too! I am so thankful for your blog so we can keep in touch and know how to pray. I check all the time so I know how to change my prayers for Brian and your whole family. We miss you! Thank you for keeping us posted! You are such a good mama, and family!; March 15, 2013 at 8:26 AM
Elaine said...: Report if and when you have one, please! =0); March 15, 2013 at 11:44 AM

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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.