Brian Robert & LCH: Update 11/27/12

Tuesday, November 27, 2012

Update 11/27/12

Thanks to all of you that keep checking on the blog for updates on Brian. We appreciate your thoughtfulness, prayers, concern and love for us.
We have enjoyed the last three weeks of a break and even traveled over to Panama City for Thanksgiving. It was a wonderful time and the first time we had all been together in a year. We even managed a family photo of all twenty of us.

Yesterday we went in an hour before Brian's appointment to do his blood work. While his counts were up to 750, and he is able to receive chemo, they are a little concerned that his counts have remained very low the last three months. Some blood was taken before he received chemo yesterday and we are guessing we will hear soon if he will need another IVIG. He has had three of them in the last three years of chemo. Actually, he managed to do just fine the first go around of chemo, it's the second round that he started having things happened that required more treatment or IVIG's. So, he has had three IVIG's in the last two years.
   Yesterday was really hard. I think Brian really enjoyed playing with his cousins and shooting guns with his daddy, uncles and cousin. He longs for the day when he has "no more chemo". (As he says in his prayers all the time)  In addition to transitioning back into chemo week, they sprung a surprise on us and gave Brian a flu shot. While that may not sound like a big deal to most of you, it was MAJOR for Brian. He is constantly asking for reassurance and making sure he knows what to expect. It is very difficult when he gets hit with something outside of what he was expecting. We can tell it has had its consequences because Brian will somberly come near us and lay his head down on one of our shoulders and ask, "What is tomorrow? What is the next day? What is the day after that? And then, what's the day after that?"

    Today is the sick day. Day two. Always. Right now, Brian is in bed with Fred watching a movie. He hasn't eaten and doesn't want to. Because he doesn't eat or drink anything we don't give him his DDAVP pills for his Diabetes Insipidus until he starts to urinate and drink again. The whole day is just off and Brian feels so ill. We hate it for him.
   Just to sprinkle some more stress in our life, our van is messed up again. Fortunately it's the same problem so it shouldn't cost us anything to repair. However, we don't want to have to keep repairing a van every couple of months. When we do have to take it in for repairs we are out of transportation. Given our situation with Brian we don't really like the idea of not having some wheels in an emergency situation. So, something to pray about.
      I would type more and I have some great pictures but for some reason Blogger is giving me fits. I might scream if I sit here longer and fool with more. :-) I will try again tomorrow. Thanks so much for praying for our sweet Brian Robert and all our kiddos.

2 comments:

Cameron VSJ said...: Hi,

I have a quick question about your blog, would you mind emailing me when you get a chance?

Thanks,

Cameron; November 29, 2012 at 2:48 PM
The Schreiber Family said...: Cameron, I would be happy to answer any questions you may have, but I don't know what your E-mail address is. Your profile doesn't offer a link to contact you .; November 29, 2012 at 2:57 PM

Post a Comment

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.