Brian Robert & LCH: From Yesterday

Saturday, July 7, 2012

From Yesterday

I have a couple of pictures of Brian from yesterday's chemo appointment. I would have posted them yesterday but we didn't have electricity. There were some severe lightening storms yesterday morning and of course, as always, our pole took a direct hit. We were without power for 26 hours. We got restored today and thankfully nothing was lost in this storm. (Remember we lost a TV a month ago). Anyway, here are some pictures of all four kids in awe as the G.P. man replaced our transformer.

Today, Fred and I celebrate 11 years of marriage and we bought ourselves a new TV. Very romantic, I know, but we realized it was kinda a necessity for our family. As horrible as I am sure that sounds to a lot of people, I am not ashamed to admit we use our TV alot. It has helped Brian get through many, many dumpy feeling days. The TV from '99 that we pulled out and put in place of the one we lost was just not cutting it. I guess because everything is HD TV now it didn't meet standards or something. It would drive me crazy to watch something that we had seen before and know that three people should be in the scene, but our TV showed one person in the center and half of the bodies of the other two people on either side of the center person. Is that confusing? Anyway, our old TV didn't show the entire picture and it drove me crazy.

Fred and I laughed because the TV we lost in the storm a month ago was so heavy it was overwhelming for the two of us to carry out together. Our new TV probably weighs as much as our old remote control!! :-)

Well, here is the brave boy getting a saline flush. He gets a little flush, the nurse checks for blood return, then pushes the rest of the saline through. Brian can taste the saline and he hates it!

To try and distract him from the taste the nurse let him push the rest of the saline through. He liked that. :-)

Please keep praying for Brian as he has the next three weeks to "recover". This medicine kinda works like a time release capsule and he will continue to have lower and lower counts as the next three weeks unfold. We appreciate the love and support from all of our loved ones. THANK YOU!!!

1 comment:

nancygrayce said...: There are so many people praying! I think of Brian often and pray his counts will be good this month!

Romantic or not, I know how important a t.v. is when a child is sick! My older sister was homebound for a year when she was 9 and there were 4 kids at that time. We only had one black and white t.v. and it went in her room where we would all gather to watch t.v. I'm sure she would have gone bonkers without something to watch (not that there was much back in those days) during all those days in bed!

Happy Anniversary!; July 7, 2012 at 12:08 PM

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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.