Brian Robert & LCH: Hello

Thursday, January 10, 2013

Hello

We are still here. :-)

We had a wonderful four week break from chemo. Brian was scheduled to have the week of Christmas as his next chemo week. We said "no thank you", and his doctor agreed. We pushed chemo to the week of New Years.

This year we decided to stay home and rest the week of Christmas instead of traveling to see family. It was so providential because we ended up with the flu. I (Carrie) got it first on Christmas Eve. I assumed I had the illness my sister had earlier in the week, so I kept thinking I would be OK in a day or two. By Thursday I was saying my goodbyes to everyone because I was sure I was dying. So, when William and Fred started to feel poorly on Thursday evening, we took William in to the doctor Friday. We discovered it was the flu and the entire family got on Tamiflu, except me. Apparently you have to start Tamiflu within so many hours of your first symptoms. Out of the six of us everyone but Brian ended up getting sick. (remember he got the flu shot.) PRAISE THE LORD THAT BRIAN DIDN'T GET IT!!!! Fred, Ansley, William and Olivia didn't get too sick because of the Tamiflu, but Miss Ansley had the horrible Tamiflu side effect of throwing up. Praise the Lord we are over it and we are healthy. Fred was a great husband and took care of EVERYTHING while I was in the bed or on the couch. (He even made Christmas dinner all by himself.) I was kinda useless for a full week.
    Brian's chemo week was at the tail end of our flu week so we had a sweet friend (Thank you Cheryl B.) come watch the three kiddos while Fred and I took Brian in for his Monday doctors appointment. (Dec. 31). We needed to both be there to present some concerns and discuss options with the doctor. We prayed about this visit and God totally answered our prayers. Dr. Brown handled the entire situation wonderfully and we are being referred to Dr. Kenneth McClain of Texas Children's in Houston. We are super excited and cannot wait to see him as he is the expert on LCH. We do not have a date set yet, but when we do, we will let you know.

     Chemo went ok. Brian had chemo Monday, Wednesday, Thursday and Friday b/c of the New Years holiday on Tuesday. So his doses were increased to get the normal five days of drugs administered in four days. He did alright. He felt a little sick and yucky on Monday, but did fine the rest of the week.
   This week are we getting back in the swing of things. Music and dance lessons start back today and our Classical Conversations group starts back Monday. Thank you for your prayers. I still have not fixed my photo problem. This past month has been on fast forward with a full week taken out b/c of the flu. Hopefully as we get back into our normal routine I will be able to get that up and running this week. I have some super cute pictures to share.

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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.