Brian Robert & LCH: MRI

Friday, March 8, 2013

MRI

Brian had an MRI today. It was scheduled for 11:00 AM with check in at 10:00 AM. We went to chemo at 9:00 AM, then headed to check in with MRI. It was horrible scheduling for a child because Brian hadn't eaten since dinner the night before. (He can't eat or drink because he has to do his MRI's with sedation). Of course they were running an hour and a half behind schedule so the poor boy had to sit hungry and thirsty until we went back got checked in, and got his versed at around noon.

Brian had a loose tooth that was ready to come out and it had to be removed before they could intubate him. The anesthesiologist said she would pull it after they gave Brian Propofol and save the tooth for us. (The anesthesiologist was super great with Brian when we checked in with her and she gave him Versed before taking him back like we requested. She was very patient and engaged Brian in conversation on his level. She even let him play Angry Birds on her phone while we waited for the Versed.)
When we were taken to Brian's bed in recovery he woke up vomiting blood. It was very upsetting, but after a couple of minutes the nurse reminded us that he had a tooth taken out. It must have bled down his throat during the procedure. Since they had already de-accessed his port we were unable to get him some anti nausea medicine until he was awake enough to swallow a pill of Zofran. Brian already being de-accessed is a result of a whole other story that I will not get into on the blog. Let's just summarize it by saying that in the past I have de-accessed Brian's port in recovery, and Fred and I have an AMA (leaving the ER Against Medical Advice) and a formal complaint under our belt from a recent ER experience at Sacred. We will not tolerate poor care for little Brian. Pretty sure the words we exchanged with the MRI check in nurse ruffled her feathers and she made sure he was de-accessed before we got back there. STRESS. Poor Brian continued to throw up even after we got home. He was fine by bedtime, but it is so sad to see our sweet Brian go through so much unnecessary drama.

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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.