Brian Robert & LCH: Sweet times

Monday, April 2, 2012

Sweet times

We've been talking to our children about painful times, difficult circumstances, God's love and His Sovereignty. Our kids know the Bible story of Joseph pretty well. So when Ansley got to thinking about God working all things together for our good and His glory she came to me said, "Mommy, I know that Brian is probably not going to be second in command in Pensacola, but..."

We read the following in church yesterday and it was very timely:

Heidelberg Catechism, 1563
Question 28. What advantage is it to us to know that God has created, and by his providence does still uphold all things?
Answer: That we may be patient in adversity: thankful in prosperity; and that in all things, which may hereafter befall us, we place our firm trust in our faithful God and Father, that nothing shall separate us from his love; since all creatures are so in his hand, that without his will they cannot so much as move.

There is some good info on LCH. If you want to watch the videos and learn more about it click HERE.

Dr. Parmley describes LCH in simple terms. He says if you look at the LCH cell under a microscope you see characteristics of a blood disorder, characteristics of an auto immune disorder and characteristics of cancer. It is treated the same way you treat cancer. He considers it a cancer.

2 comments:

nancygrayce said...: OH, sweet Ansley!; April 2, 2012 at 6:32 PM
Julie said...: Praying for your precious family. Love the catechism question and especially the answer. God is good and we are full of Hope in Him. Love to you, Julie Jacob; April 3, 2012 at 11:50 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.