Brian Robert & LCH: 12 Deprivation Test & Diagnosis

Thursday, March 22, 2012

12 Deprivation Test & Diagnosis

Last night was ROUGH. From 2 AM onward Brian was not allowed to have anything to eat or drink. He had his last cup of water at 1:50 AM. I was pretty much awake from that point forward. Every time I heard him stir I would bolt up and make sure he wasn't drinking from the facet in the bathroom. A couple of times I just made it as he was pulling back the shower curtain to get the nasty soap scum cup we use to rinse hair in the bath. He was planning to fill it up and drink from it. He was standing there caught with the blue cup in hand smiling like, "What? I wasn't going to drink from this!" Then as soon as I would take it away from him and say he couldn't drink anything he would cry and say "but I'm thirsty". I ended up putting the baby gate in the doorway of his room. During the daytime I am sure he would have just climbed over it, but in the middle of the night it worked.

So, at 8 AM Fred and Brian left for the hospital while I dropped the other kids off at a friends house with a load of food. I couldn't feed them in front of Brian. She was so sweet to feed our kids and watch them for hours, several days in a row!! (Thanks, April!!)

Then I headed to Nemours and met Brian and Fred just in time to take his vitals and access his port. Then we headed over to Endocrinology and got settled in for the long day. Brian fussed a bit and when Fred had to leave for an hour and a half for an appointment for work, Brian fell asleep. He woke up for just a minute and transitioned from the "bed" to the chair. It didn't look comfortable.

Dr. Kummer stopped the test an hour early because Brian's sodium was high. He went ahead and diagnosed Brian with Diabetes Insipidus and started him on a low dose of Desmopressin each night. He told us to keep a journal of how much Brian is drinking and how much he is peeing and call him next Tuesday or Wednesday of next week. We had plans to go to Legoland this weekend to celebrate NO MORE CHEMO and Dr. Kummer said that was still OK. Tonight Brian took his first pill (he has to swallow it) and he did AWESOME!!! He popped it in his mouth and swallowed it right down. Fred had made a deal with Brian about a new Lego set. After Brian swallowed his pill he looked at Fred and said, "let's go to Toys R Us right now Daddy!" And we did. :)

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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.