Brian Robert & LCH: Chemo 10-6-10

Thursday, October 7, 2010

Chemo 10-6-10

Brian had his first dose of chemo yesterday. It went well. He did not have to be held down and physically restrained by Fred. That is a HUGE answer to prayer as Brian has blamed Fred for all this happening to him and channeling all of his anger and emotion toward Fred. That would show itself in Brian saying he was mad at Daddy or he would quite frequently not even acknowledge that Fred was talking to him or even in the room. If Fred said "I love you Brian" Brian would then look away from Fred and not acknowledge he heard Fred. Then Brian would look at me and say, "I love you, Mommy." Even two weeks ago when Brian got his port implanted he was angry at Fred. Brian knows that port means chemo and chemo means "Daddy pins me down while nurses stick me and take my blood." While he is young, Brian is very aware of what is going on and remembers a lot more than we had hoped he would. When we ask Brian what we can do for him as he is upset or getting nervous about a doctors appointment, Brian's response is almost always "pray that I don't have to have a port and chemo when I am five."

Brian has been showing a few more symptoms lately. He is having a water deprivation test with a Pediatric Endocrinologist (Dr. Kummer) tomorrow morning to rule out Diabetes Insipidus. We are pretty confident he has it, which is evidence that the Histiocytosis is attacking his brain, specifically the pituitary gland. Brian will have a MRI early next week to see if there is a presence of Histio in his brain. If he has this diabetes insipidus (and the brain involvement of Histio) than we will change the level of chemo we are currently scheduled to do, to something much more aggressive. Please be in prayer for Brian and our family this coming week.

Romans 11:33-36
Oh, the depths of the riches of the wisdom and knowledge of God! How unsearchable his judgements and his paths beyond tracing out! Who has known the mind of the Lord? Or who has been his counselor? Who has ever given to God, that God should repay him? For from him and through him and to him are all things. To him be the glory forever! Amen.

2 comments:

David and Kate said...: Oh Carrie I am so glad that Fred did not have to hold him down last week. Yay for that! I am sorry about the possibility of Diabetes Insidpidus. We will continue to pray.

Love,

Kate VY; October 9, 2010 at 2:36 PM
Unknown said...: Carrie,
Just read through all of your posts... we are praying TODAY that Brian's ultrasound will not reveal histio in his brain and that they will not have to increase the level of chemo. We will be praying for courage and strength for your entire family this week and in the weeks to come.
Love,
Starla Dolihite; October 11, 2010 at 10:09 AM

Post a Comment

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.