Brian Robert & LCH: More Chemo for Brian

Monday, October 7, 2013

More Chemo for Brian

We are in Houston at Texas Children's Hospital. Brian had an appointment at 1 today to biopsy his scalp. Things were running a little behind schedule and we didn't get up to the 14th floor to see Dr. McClain until a little after 3. After talking with him for a little bit he sent us straight down to radiology to get some scans. When the x-rays were complete we headed back up to the 14th floor to talk to Dr. McClain again. At this point it was after 5:00 and the office staff had gone home. Dr. McClain talked with us more and we discovered Brian will need six more months of chemo. We are VERY thankful that he is able to do this specific chemo drug orally rather than an infusion. That means no port which is an answer to prayer, but Brian is going to require chemo that is known to lower counts. I will update more thoroughly and add pictures when we get home, but I know several of you are anxiously waiting for an update. Thank you for your faithful prayers.

2 comments:

Jackie said...: We rejoice with you that a port isn't needed. Prayers continue, hugs. Glenn & Jackie; October 8, 2013 at 12:27 PM
Elaine said...: We were so anxious I talked with your Daddy last night! Will continue to pray for you all especially precious Brian. Love ya'll!; October 8, 2013 at 12:44 PM

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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.