Brian Robert & LCH: Brian's counts are low

Sunday, November 21, 2010

Brian's counts are low

Please pray for Brian as his counts are low. He was suppose to start his oral chemo drugs this past Friday (two days ago) but was unable to because of his low ANC level. He is considered Neutropenic. You can read HERE about Neutropenia. Brian's counts are suppose to be above 500 to be able to receive chemo and his counts were at 480. We will go in on Tuesday morning for more blood work to check his counts and see if he will be able to start his oral chemo drugs this coming Friday. Until Tuesday Brian is to stay at home and we aren't to have people over. We were told that our normal home germs are OK, but new germs are dangerous.
Brian is home bound and watching movies. Really he has been home bound for the last seven weeks. Brian hasn't wanted to go anywhere. If we were to go anywhere, even really quickly he would be asking to go home and whining about being tired within ten minutes of leaving the house. I took all four through the drive thru pharmacy to pick up some meds a few weeks back and Brian was crying to go home. He didn't even have to walk anywhere or do anything but the activity of getting in the car and driving there was too much for him. His little body has been so tired all the time. We think the steroid was causing his extreme tiredness and weakness. Now that Brian has weaned off the steroid (this past Thursday was his last dose, but he has been taking a tapering dose the past two weeks) he has had more energy and is actually doing things! He and William are playing and interacting (and fighting!) again. William LOVES having his buddy back. While he is still limited in his activity and can't really run or move too quickly he has improved. The last couple of months Brian has literally not done anything other than watch TV, SLEEP! or have books read to him. Coloring made him too tired. Now, he at least will sit and play Lego's or color with William. He still strains to bend over and looks pained to step up on the stool to brush his teeth, but he is trying to move around more rather than just sit on the couch. It's slow moving. Please keep praying.
Brian's oral surgery has been scheduled for December 7. We will keep you posted. Thanks for praying for Brian Robert.

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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.