Brian Robert & LCH: Hurricane Isaac

Tuesday, August 28, 2012

Hurricane Isaac

Thank you to all our friends that have been concerned and texted to check on us. This is a chemo week for Brian, but because of the storm headed this way they delayed his treatments until next week. Since next Monday is a holiday he will have chemo Tuesday- Friday with the higher dosing.

Right now we are just hanging out at home and doing some school work before the bad weather comes.

We didn't do too much extra to prepare for the storm. We live pretty prepared. We have a generator and a window AC unit, so we went and got some gas for those. We always have a stock pile of food because of the way I shop with coupons and sales. I did go buy a huge dog bone so the dog will have something to do when the bad weather forces her to be in the house all day long. :-) We also put the cats in the garage with a litter box so that they don't have to be outside in the wind and rain. We went ahead and brought them in last night because I was fearful they wouldn't come out of hiding if the weather was starting to get bad. One of our outdoor cats is always in our yard. The second one only comes around at meal times. That's the one Miss Ansley is really attached to. So, with the animals secure we are set.

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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.