Brian Robert & LCH: At it again

Tuesday, October 2, 2012

At it again

We're at it again this week. Brian started chemo yesterday. His appointment wasn't until 1:30 PM, so we did some school work in the morning. (Typically we don't do too much during a chemo week.) While I was working with Ansley and William, Brian and Liv were drawing and coloring. I took a picture of Brian's art work because it made me super sad. He spent the entire morning consumed with thoughts of chemotherapy. The picture on the left is Brian sitting on the hospital bed playing with the iPad. The picture on the right is the pump on a pole. The huge thing coming out of the pole on the right side is the tubing that attaches to Brian. He drew it huge because, in his mind, lots of medicine goes into him.

But you can see, even though he was describing chemo and saying, "I'm scared", he has a huge smile on his face. He's such a sweet boy!

Yesterday was draining. Brian fought a bunch more than typical and he cried and screamed. We ended up having to physically restrain him. Brian has a look of terror and disappointment right after his port is accessed that just crushes us.

Please pray for Brian this week as he receives his chemo treatments. We pray every day that these treatments and this protocol would work.

1 comment:

nancygrayce said...: Praying!; October 2, 2012 at 1:00 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.