Brian Robert & LCH: Pray for Brian

Thursday, September 8, 2011

Pray for Brian

Our little Brian is really thinking about chemo and all he goes through. We've recently had a dear friend diagnosed with Cancer. We've had lots of conversations and prayers about cancer, chemo, doctors visits and death in our house lately. Brian's sweet little heart is sad that our dear friend would possibly have to go through chemo. He says things like, "Let's pray that Ms. ******* doesn't have to do chemo. I don't like it. I don't want her to do it and I don't want to do it either." Every single night he prays that when he is six he will not have to have chemo. It is really sad, because he used to pray for "when I am five" and now that he is five he knows he still has chemo every three weeks through next March. So, every evening for his prayer request he will say "I know I will probably have to always have my port and a butterfly, but I want to pray that maybe when I am six I don't have to to do chemo anymore."

Please pray for our Brian Robert and that he would be through with all of this in March. Here's how it works: We complete his roadmap for treatment and then watch Brian for a year. (still frequently having scans and his port flushed during that year, but no chemo) If Brian does not have a recurrence of symptoms then he is considered in remission and treated. If he has a recurrence then we start a new round of drugs to try and find the combination of drugs that work of him.
That is what we are doing right now.As you remember Brian started chemo in Sept 09 and finished in April of 10. Unfortunately he started showing symptoms in July/Aug '10 and had a biopsy in Sept '10 that confirmed LCH and that we "hadn't gotten it." That is when we started chemo round two and mixed up the meds to try a new combination. After his induction period of the first six weeks (which includes weekly chemo and daily steroids) we switched to to new drugs in Dec 10. However, before we were able to start the new drugs Brian had three weeks of nothing because his counts were too low for chemo. During this time he started presenting symptoms again. From Dec'10- March'11 his symptoms didn't go away and we felt the new drugs he was on were not sufficient. The doctor said that the drugs Brian was taking weren't working b/c they are for Leukemia patients in remission, Brian started taking them while he had symptoms. So, we went back to our original chemo drugs/steroid combo with a modified induction period (4 weeks of weekly instead of six) and changed the steroid back to his original one that has less negative side effects. We know this combination of drugs works for Brian's symptoms, but idea is that we would give him a year on the drugs rather than six months. Maybe this will "get it". So, we go to the hospital every three weeks, on Tuesday for bloodwork and Wednesday for chemo through March '12. Then we wait and see how Brian's body is doing. If he has clear scans and is not presenting symptoms for one year (from March '12-March '13) than we are done!!! Please pray that this would be it and we are finished with treatment in March. We know that God is faithful and HE will sustain us and give us the grace to walk through anything, but the cry of our hearts is that we be finished with chemo. Please pray with us for little Brian Robert.

1 comment:

David and Kate said...: I will be praying for you guys! I think of you often.; September 8, 2011 at 9:26 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.