Brian Robert & LCH: X rays 7-18-12

Wednesday, July 18, 2012

X rays 7-18-12

Today Brian had some X-rays of his bones. He did great waiting. The ipad is our constant chemo/hospital companion.

The tech that was positioning Brian was obviously a newbie and kinda young. When we first got in the room he asked me what was going on with Brian and why were we coming in for X rays. It was kinda mean, but I looked at the fresh young lad and said, "Brian has Langerhans Cell Histiocytosis." I knew the young man had no idea what that was. His blank stare confirmed my suspicions. I let him know that not too many people have heard of it and it is a rare disease. He kinda relaxed then started to position Brian. For some reason Brian did his scans with new positions. I am not sure if that is because he is older and more capable, or what, but typically he does everything laying down and today he did not.

After several minutes and few different positions, I noticed that one of the three ladies that kept coming in and out of the room was correcting the tech and offering more instruction. She then whispered to me that the tech was new and he was getting graded on this. A few minutes later she commented that the tech got lucky because Brian was an unusually cooperative child. She said most of the children have to be chased around the room and repeatedly begged to stay still. I laughed and told her I could go whisper in Brian's ear to be silly for a little while to see what the new tech would do. The lady laughed but said no thanks. :-) Brian did outstanding and we were in and out in a half an hour.

After his scans Brian always enjoys peeking at his bones. They are very sweet to let him look at the pictures.

Here's Brian's head.

And the sweet boys hands.

We will hear the results from the MRI (from last week) and the X rays at Brian's next chemo appointment.

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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.