Brian Robert & LCH: The New Plan

Monday, March 21, 2011

The New Plan

We heard from our Hem/Onc doctor and have a new course of treatment. Starting this Wednesday (3/23/11) we will go back to the drug Vinblastine with a steroid combination. We are switching back to the original steroid that Brian took during his first round of chemo. (Sept 2009-April 2010) The steroid that he took from Sept 2010- Dec. 2010 has too many long term side effects that we are not interested in. Apparently it was a stronger steroid. The doctor told us that he was switchingback to Prednisone because he didn't want Brian to need a hip replacement in a few years as the stronger steroid causes bone issues. Umm....YEAH!
Instead of doing the initial six week induction period for a third time in Brian's young life the doctor modified it. Brian will have four weeks of weekly infusions of Vinblatine with steroids on week one and week three. Then he will move to a every three week infusion followed by five days of steroids. He will have to do this for one year.
This is a lot. The infusions are not fun. Getting Brian accessed has become more of a struggle. He doesn't like "being hooked up to a machine" as he says. And he isn't too fond of going to the doctor at all. This past Thursday the kids and I had a picnic outside and we saw a helicopter flying. We live near Sacred Heart and the airport. Brian has seen Life Flight land on the roof at Sacred while we were at one of our appointments. When one of the kids pointed out the helicopter Brian smile mischievously and stated, "I hope it crushes my doctor." He knows that the helicopters land at his doctors office and he thought if it crushes the building then he wouldn't have to go to chemo anymore.
Please keep our family in your prayers. We pray that we are a testimony of God's faithfulness and reveal His glory to the Pediatric Hematology/Oncology doctors and nurses. Well, and the other six thousand nurses, specialist and techs we come in contact with. :)

And lastly, Brian will have to have a chest X-ray this week because he STILL has a nasty cough from when he was sick in January.

1 comment:

Unknown said...: I'm so glad you have this blog so I can keep up with your family, even though you are not at McIlwain now. We miss you all, but are glad for Clif and Circle Church, and so happy you have made that connection. I'm still praying for y'all, and will keep it up.; March 27, 2011 at 9:14 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.