Brian Robert & LCH: Pray for Brian

Wednesday, November 17, 2010

Pray for Brian

The chemo drug Vinblastine can cause constipation. Well, Brian has suffered with that on and off the last week and a half. His stomach got so bloated that he looked like a starved orphan in a third world country. We've been giving him Miralax and straight apple juice and he was going potty but this morning he was doubled over in pain and sweating. He kept complaining and crying so we took him to the hospital. He got some X rays and an Ultrasound done which revealed that Brian had an insane amount of gas in his abdomen. He is constipated and backed up. Every time he breaths he is taking in more air and it's just not coming out. I will try to post the X-ray picture. It was kinda cool. Of course it wasn't cool for Brian because he could feel the balloon ball of gas in there! We are still giving him LOTS of Miralax trying to work the stuff out of his system.

The gray area on the right that is kinda shaped like a potatoe is a big ball of gas!

2 comments:

"Kirby" (KrB) said...: I'm so, so sorry for poor little Brian and all these side effects. We continue to pray for all of you. Would love to provide pizzas for your dinner so e-mail me at karenwitter@cox.net and tell me what night and what time works best for you. Love to all,; November 17, 2010 at 4:12 PM
Missy said...: Carrie...could you use a complimentary cup of coffee? I would love to meet up with you any night at your convenience. Love you friend.; November 20, 2010 at 9:06 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.