Brian Robert & LCH: Still here...

Monday, June 4, 2012

Still here...

Brian is still in the hospital. Here's a quick update from last week for those that haven't seen the emails. Because of the holiday Brian's chemo week was Tuesday to Friday. The doctor adjusted the doses so that Brian received the same amount of chemo he would normally receive in five days, but this week it was given in four. Wednesday evening Brian was running a 102 fever with chills and throwing up. (day two of chemo, just like last time) we called the oncologist on call who told us to head to the ER. Brian's blood was taken to check his counts and some cultures run to check for the presence of bacteria in the port. We were told if Brian's ANC was above 500 he would be given antibiotics and allowed to go home. Thankfully that is what happened.

Thursday we went to chemo as normal. Thursday afternoon/early evening Brian did not feel well but was not running a fever and was not throwing up. Friday morning as we were getting ready to head to chemo we got a call that Brian's cultures from the ER were positive. We headed to chemo and saw the doctor to ask what we should do. He told us to receive chemo as normal and then Brian was to be admitted to the hospital. We have been here ever since. Brian has been receiving vancomycin and in between doses he has been given an ethanol lock.(alcohol in the port) We are hoping this cleans the port of bacteria so that it does not need to be removed. We should know more today.

Thank you praying for our family. This has been very trying on our family. Both Fred and I are torn as we want to be two places (well Fred has the pull of three places as he has to work...) all four kids are ready for Brian, mommy and daddy to be home. We are grateful that Fred's parents are here. They came to visit and see the girls ballet recital. It has been a blessing to know that we don't have to shuffle the kids all around for several days. We are thankful they are getting some time with their grandparents and their grandparents are making sure to shower them with love and attention. Please pray that Brian gets to go home TODAY and that we don't have to have the port removed.

Sweet tired boy. Little bit of a reaction from the antibiotics

still tired and only wanting to eat tomato soup

playing in the closet

Day three and feeling better...checking out his meal

watching netflicks on the iPad

still loving the iPad

1 comment:

nancygrayce said...: I just can't tell you how I ache for all your family. We are praying you'll get to go home today and that the port is o.k.....our love to you all!; June 4, 2012 at 5:10 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.