Brian Robert & LCH: Friday

Wednesday, December 1, 2010

Friday

Well, we just heard from our Hem/Onc nurse. Brian will go to the clinic on Friday for his port to be accessed and labs drawn. Then we will be admitted to the hospital. In the hospital Brian will receive an IV-IG. Since it is his first time to have one he will have to be in the hospital and it will take all day. We will be allowed to be discharged when the infusion is complete, but we were told to plan on it being an all day thing. Please pray for Brian as he is already nervous about this. He heard me talking on the phone with his nurse. He came in and crawled up on the church pew beside me and sadly looked at me and asked, "Do I have to be hooked up to a machine again?"
Please pray for Brian. He will get this boost just to get kicked back down again as we are suppose to start his oral chemo drugs this Friday. We will probably have to postpone his oral surgery. We will see how Friday and Saturday play out before we make that decision. Thanks for caring about our boy!

2 comments:

Jessica Teplicek said...: praying for you guys and my BBers!; December 1, 2010 at 3:57 PM
Nina @ Intentionalmoments.blogsot.com said...: I check this blog often and pray for your family and little brian. Blessings Nina; December 1, 2010 at 4:58 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.