Brian Robert & LCH: The PET scan

Tuesday, October 29, 2013

The PET scan

Brian had his PET scan at Sacred Heart this afternoon. He attempted it without sedation. They were fantastic and let him walk through what was going to happen and actually go see the machine before he was given his IV and injected with dye. After given the dye Brian had to sit absolutely still for an hour. We watched Netflix on the ipad. The ipad is our constant chemo companion. Worth every penny!!

Brian "sat still" and did the entire procedure without sedation. I say "sat still" in quotes because I was in the room with him and felt like he was moving quite a lot. The tech said they got what they needed but we will see. :)

We were proud of our boy for making it through the PET scan like a champ! Here he is posing in front of the machine. Of course blankie was with Brian too. Sir Blanks A Lot, Blankie, Kee-Kee- it has had several names through the years, but has always been within arms reach of Brian. I often think about my Aunt Carol stitching Brian's blanket together many years ago. She had no idea that the baby blanket she was making for her precious great nephew would be such a source of comfort and stability and would travel to so many things. Well, maybe she did. She saw me love on my Aunt Carol blanket for ten years. My blanket was so loved it was really shreds of yarn. Aunt Carol made me replacement blanket when I was a teenager. I have it displayed in Olivia's bedroom and my original blanket is in a drawer.

Blankie is more than just a lovey. It kinda makes me want to learn how to knit (again) so that I can carry on the Aunt Carol tradition. She tried to teach me how to knit. My sweet Aunt Carol came over to my house a couple of weeks after Brian was born and spent a few hours with me attempting to teach me how to knit. I "got it" but being that I had a newborn and two other toddlers there wasn't much time for knitting. I don't really remember how to knit now. Anyway, Blankie and Brian made it through a PET scan without sedation!!

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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.