Brian Robert & LCH: Update 9/21

Wednesday, September 22, 2010

Update 9/21

Brian had a biopsy of one of the bumps on his scalp yesterday(9/21/10). He was so brave. We told him what he had to do and he was OK. He asked Mommy twice, "just one needle in my head, Mommy, right? Just one needle?" When we got to the appointment he was Mr. Personality and never freaked out. He chatted with everyone and told the doctor what was going to happen. She reassured him and told him step by step what was going on (minus the razor digging part of his scalp off...he couldn't feel that part b/c the "one needle" made him numb). He did AWESOME! He never struggled to get away from Mommy's grip and never jerked his head away. He didn't cry or fuss. I was so proud! After she finished Brian turned and looked at me and said, "I was so brave, Mommy. I am a brave, big boy!"

Brian's "Rain Forest Cafe"

We will find out the results in one week. If it is LCH then we start chemo again. Being that Brian had his port removed on April 30, 2010 we would have to have another one put back in. That conversation with Brian was tough. He knows what that means and he HATES chemo.

Please be in prayer that Brian has some other dermatological issue and not LCH again. As the Doctor told me yesterday, we have very good reason to assume it's LCH. Given Brian's history that is probably what it is, but we should just wait until we get the pathology report back in a week. It could be something else. We shall see.

Even if we have to start over with a more aggressive chemo (higher dose and longer treatment) we know we are in God's hands. HE is faithful and HE has promised to never leave us or forsake us(Deuteronomy 31:6, Josh 1:9, Heb 13:5). Trusting in HIS sovereignty doesn't mean that we understand. Or that all things work out "perfectly", but that in HIS sovereign hands we rest knowing that HE is there with us through the chemo. We know that HE is our shield and reward so we can trust in HIM (Gen 15:1). HIS grace is sufficient and HIS power is made perfect in weakness (2 Corinthians 12:9). We pray that we would reflect HIS glory no matter what path we may have to take (1 Corinthians 10:31). As a Mommy, I pray that Brian and our other three young children would grow to love God and know HE is a loving God even amidst great suffering and trials.

1 comment:

nunya said...: We love you guys and are praying for Brian and the rest of you. Jesus loves in strange ways sometimes it seems, but never doubt that He loves you.
Art Stroh and Family
Lynn Haven; September 23, 2010 at 8:12 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.