Brian Robert & LCH: Another Week Complete

Friday, October 5, 2012

Another Week Complete

Another week of chemo is behind us. It was a rough one. Brian fought a lot on Monday when they had to access his port and today when the needle was taken out. Brian got sick on Tuesday, day two of chemo, and Fred had to drive to Orlando (and back) on Wednesday for a required one hour training. We've had a long week.

We also learned on Monday that Brian's counts were at 720. They are suppose to be at 750 to receive chemo but the doctor said it was close enough, so we went ahead with treatment. However, we can expect Brian to be neutropenic in the coming days as the chemo starts to take it's toll. (Remember below 500 is neutropenic.) Because of this we will not be doing much outside of the home the next few weeks.

These things have become a part of our norm. I'm afraid that we have gotten "too good" at juggling all we have going on. Perhaps we don't let everyone see the pain and difficulty as often as we should. Or perhaps we don't even know how to answer questions like, "what do you need?"

I had a whole long post typed up but just deleted it. All I will say is that God has been working mightily in our marriage and in our parenting as a result of all we have going on. For that we are thankful and we do see the good (Rom 8: 28). Just because we see the good, and we are blessed by God's work in our life, that doesn't mean that we don't struggle and have difficult days. This week has been difficult.

Please keep praying for our family and for precious Brian Robert. He has a MRI on Wednesday of next week. Those are always done with sedation.

Here are some pictures of Brian from Tuesday when he got sick. We are thankful that it is just day two that completely knocks him out.

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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.