Brian Robert & LCH: Trying to Update You...

Sunday, October 17, 2010

Trying to Update You...

Poor Brian. This has become the spot for BB.

Well, we had some great news this week but I haven't been able to update you. We've had the throw up virus at our house and our computer died. The computer thing wasn't unexpected. It has been dying a slow and painful death for months now. We were just trying to stretch it out until the beginning of next year. Didn't happen. New computer up and running.
Last night started Brian's turn with the throw ups. In the middle of the night he started complaining about throwing up and dry heaved enough to make his nose bleed out of both nostrils. It was really sad!! I freaked out just a wee bit. :) Back to the update. Brian's water deprivation test and brain MRI came back revealing that he didn't have DI and he did not appear to have Histio involvement in the brain. This is all good news. It means that they are leaving Brian's diagnosis as single system involvement and low risk. We kinda have two doctors right now as our original doctor has clinic days on Tuesday and Wednesday and we really needed Friday to be our chemo day. We've switched to Friday's and it works out because we love the doctor that we see on Friday too. Although this Friday we will see our first doctor as our Friday doctor will be on vacation. OK, wow, too much information. :) Between our two doctors the latest information we've received is that Brian will now be on chemo for one year. After consulting with three of the leading experts in Histiocytosis and reading a bunch of articles, studies, etc. our doctor has changed our course of action to an initial six weeks of Vinblastine and Dexamethasone, then the remaining ten and half months will be two other chemo drugs that are most frequently used to treat leukemia. Brian took Vinblastine for seven months during his first round of chemo, but he took it with a less powerful steroid. The other two chemo drugs we have not played around with. We shall see how he responds. We are praying that this time we "get it" and Brian will not have another recurrence. Must run. Poor little guy is really tuckered out from the throw ups. I will call his oncologist in the morning and I am praying that he will not have to go in or be admitted to the hospital.

1 comment:

"Kirby" (KrB) said...: So sorry about the throw-ups and the computer's demise, but sooooo glad to hear that there is NO apparent brain involvement. I've been praying much, so Thank-you, God! Will continue to pray for Brian to adjust well to these drugs, and for peace for all of you. Hugs, Karen & gang; October 17, 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.