Brian Robert & LCH: Krispy Kreme and Evidence

Friday, March 9, 2012

Krispy Kreme and Evidence

While Brian had his last chemo yesterday and we celebrated last night, we are still "in it". Fred and I have tried to celebrate that we are finished with the protocol Brian currently doing, but Brian is still not OK. He has some suspicious behavior. Of course Brian is on steroids right now so that will add to his grumpiness and mood changes, but even more than typical steroid behavior Brian is showing signs of diabetes insipidus. He will not eat and only wants to drink ice water all day long. He will cry and moan and carry on, begging for something to drink. He has not been eating much at all. We have to bribe him to get some food in him.

Thinking that I could get him to eat some Krispy Kreme, I took the kids there for breakfast this morning. We took our time watching the doughnuts being made and then sat and ate our doughnuts in the restaurant.

I think you get the picture. Brian would NOT eat his doughnut and never did. He's never been much of a sweets person, but usually he will at least some of his doughnut. He was so wiped out from not eating and throwing fits that Brian put himself down for a nap today.

Here he is sleeping with Pepper the dog, his gift for NO MORE CHEMO. Brian picked that out himself.

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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.