Brian Robert & LCH: He Has An Extra Curricular Activity!!!

Wednesday, September 11, 2013

He Has An Extra Curricular Activity!!!

Many of you may remember me making mention of the extra curricular activities in our house. The conversation went something like this, "Ansley has dance and piano, William has guitar and piano, Olivia has dance and piano...and I have chemo!!"
Yes, Brian would happily shout that he "gets to do chemo". He just hasn't had the energy or desire to do anything. Legos and video games have been his thing. Well, getting that port out has been a life changer for Brian. He is THRILLED to run around and be rough and tumble with his friends.
On Tuesday evenings Olivia has a dance class from 4-5. At the end of the class the dance teacher instructed the students staying for the tumbling class to sit against the wall. Olivia sweetly asked if she could stay because she has wanted to take gymnastics for quite some time. We haven't looked into it too seriously because we have not been able to add one more thing to our schedule. I am very protective of our time and do not over schedule us outside of our home. It's something I have had to do because of Brian's illness, but now I treasure it. Anyway, I got permission for Olivia to try the class out. While standing outside watching through the window I noticed a little boy in the class. William and Brian expressed interest and the one little boy's mom overheard. She looked at me and said, "Oh please do let them go in. My son would love to have more little boys in the class." I asked for permission to send my boys in. It was an instant hit. The teacher is a male, coach Dale. Our boys LOVED every second of the class, so much so that they have renamed our Tuesdays. Tuesday is our Classical Conversations day and it has been the highlight of our week for years. Apparently it has moved to the back burner because our three tumbling kiddos now refer to Tuesday's as our Tumbling Tuesdays.

The class will not be this large. Apparently several parents heard "try it out" and sent their kids in there. We are thankful that our three got to slide on in and be a part of this class. We LOVE In His Steps. It's not just a studio were they learn some music, dance and tumbling, but it is a ministry. (We do all of our extra curricular activities at IHS.) The teachers are pouring their hearts and their love for the Lord into our children. We love that our boys have another positive male role model. Coach Dale is also a pastor. :)
So, hooray! for Brian being able to say he does something other than chemo!!!

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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.