Brian Robert & LCH: November 2013

Tuesday, November 19, 2013

Monthly Appointment

Brian's counts continue to be good (given all he has going on) and his liver function is good too. After today's appointment we went over the infusion side and said hello to one of our favorite nurses that we miss. We hate not seeing her often but we are SOOO thankful that we don't HAVE to see her often. She had to get a wheelchair for another patient so she walked with us to the elevators. We enjoyed chatting with her and getting the update on another nurse from the infusion center that we miss.

Brian and Nurse Sherry

Thursday, November 14, 2013

Update

The PET scan was never sent to Texas Children's for Dr. McClain to view. Fred went down to Sacred Heart and got it on CD to send it Fed Ex to Texas.
After Dr. McClain and the Histio review board looked at the images we heard back on the findings. Apparently they were not able to merge the images to view things like you are typically able to do. Each individual image appeared OK, but not being able to merge made it difficult to really diagnosis anything from this particular PET scan.
OK, all that means nothing to me, but Dr. McClain said we could redo the PET scan in Texas, but there was no sense of urgency so we could wait until we are there in April. We are taking that as good news.

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.