Brian Robert & LCH: At Chemo

Sunday, December 19, 2010

At Chemo

On Friday Brian had an infusion and some blood drawn for labs. Now that he has his surgery behind him we can move forward and enjoy Brian's new chemo/clinic routine. We go to the clinic once a month for an infusion and labs. At home Brian is taking two different chemo drugs orally. One he takes daily and one is once a week. Brian was thrilled to find out this past Friday that his next clinic appointment (which means getting his port accessed) is not until Jan. 14th.

On Saturday (Dec 18) our family went to the Gulf Coast Wings of Hope Christmas party. It was such a good experience for Brian to see his two doctors outside of the clinic and hospital. He was really nervous and excited, but it was really good for him because we have heard lots of chatter from him about Dr. Chatch and Dr. Schwartz since yesterday's party. I will do another post in the next couple of days all about the party and include some pictures. It was a really good experience for our family. It was nice to meet other families that have had a child go through chemo.

Here is a picture of Mommy and Brian from this past Friday. We were in the play area picking out some books to take back to B's room. His monthly infusion is an hour long. It's kinda sad to watch Brian walk with his blue pump. He knows how to move with out getting his tubing tangled. Definitely one of those things I never thought we would have to do.

1 comment:

Rachel said...: Carrie, we pray for Brian, you, & Freddie almost every night ! Just wanted you to know I've been thinking about y'all & praying this would be a special Christmas for your family. Brian is such a brave boy & you are an awesome mom!!; December 26, 2010 at 12:29 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.