Brian Robert & LCH: Endocrinology

Wednesday, March 21, 2012

Endocrinology

Brian was excited to play on the train this morning at his appointment. It's in the waiting area and B has always liked these trains. He doesn't have one int he Oncology waiting area.

Brian's endocrinologist said that his urine and blood from the March 8th labs looked suspicious. You can imagine the frustration given these were the same labs that Dr. Brown looked at and said Brian looked normal.

Dr. Kummer had his nurse take a urine sample from Brian then said don't give Brian anything to eat or drink for the next six hours and then we would get another urine and blood sample. He allowed us to leave and come back for the second urine and blood sample.

Our down the street neighbor and friends from CC had the other three kids so I went to her house to pick them up and ask if I could bring them back later in the afternoon. As soon as we got to her house Brian noticed the six water bottles on the table in the backyard where everyone was playing. He immediately got grumpy and started getting violent. He likes to hit and shove. So, mommy said "Let's jet kiddos...thanks for watching the three...we'll see you this afternoon." :-)

Knowing that Brian has access to water without me noticing at home we intentionally did not go home but stayed out the entire time. We went to Target to look at toys, we went to Toys R Us and got new mini figs (which Brian did not care about and didn't want to open his), then we went to the mall to look for Brian a pair of tennis shoes. He had decided a few weeks ago he wants light up Sketchers. (today we didn't get any b/c he did not care) Then we went to the hospital for Brian's labs. After that we went to Chick Fil A for lunch and dropped the other kids back off at our friend's house.

Here's Brian before his blood work and urine at 1:30 PM going on six hours without food or water.

At Brian's follow up appointment that afternoon we were told that Brian's labs looked like he had something to drink because his urine was even more diluted. I was firm that he did not drink anything, he didn't even have the opportunity. Dr. Kummer said he believed me and that Brian's osmolality and sodium look suspicious. He wants to do a 12 hour deprivation test. So tonight Brian will go to bed and not be allowed anything to eat or drink after 2 AM. We will head to Oncology to get his port accessed at 8 then head over to the Endocrinology area to stay in clinic for the day.

While waiting this afternoon for our follow up appointment with Dr. Kummer Brian got to see Lucy the dog. Lucy comes around to cheer up the kids at the clinic. Brian liked her because when he said "sit", she sat. Our dog does not do that. :-)

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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.