Brian Robert & LCH: More Surgery (not for Brian)

Friday, September 16, 2011

More Surgery (not for Brian)

Brian had a complete skeletal survey or scan on Wednesday along with his bloodwork for chemo the next day (The scan/survey are different and I always forget which one is which. I'm not sure which one he had.). The next day (Thursday, yesterday) at chemo we got the results of the skeletal survey/scan and received his chemo. As always after chemo, he is now on steroids for the next five days. While the appointment was not bad, it wasn't all that reassuring. There were some findings from the scan, but we are still letting all of that sit with us for a few days. I'll blog about that later, but today we are up early and headed to the hospital for Fred a spinal fusion. Fred will be having his third back surgery this AM and he is thrilled to be getting a fusion. On Wednesday, his birthday, he had his pre op appointment and he has been trying to finish up some loose ends at work before being out for a while.Throw in a school day for me and the kids, ballet and guitar lessons, me getting sick and you can see it's been a busy week. We are very grateful that God in His good providence, love and mercy had already laid the plans for this week. Fred's mom is here to celebrate Fred's birthday. Fred's surgery, not scheduled for another week, got moved up on Tuesday to this week. With her here we have not had to worry about our children (or me making meals.) It's been wonderful!!

1 comment:

nancygrayce said...: Know our prayers continue for your family!; September 16, 2011 at 8:01 AM

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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.