Brian Robert & LCH: Another ER visit

Monday, July 23, 2012

Another ER visit

Saturday night we added another ER trip to Brian's journey through chemo. Fred and I both commented on how amazed we are that we were able to go the first two years with absolutely no ER visits or hospital stays, to now monthly ER trips with extended hospital stays. (Thankfully no hospital stay this month!)
Anyway, Brian was running a fever of 101.8, 101.6 so we had to call in. The on-call oncologist told us to head to the ER for blood cultures and antibiotics.
We are so grateful that one our friends from CC moved right around the corner in our neighborhood last October. It has been fun to go on walks and play at the parks. This past Saturday when we had to head to the ER it was such a blessing to call them and drop the kids off. I believe it was a 17 second detour. :-) Thank you Morgan family for taking care of our kiddos.

Once we were in the ER our nurse asked us what kinda port Brian had. When we told her the brand and type of port (I have a card and booklet I carry in my purse) she looked perplexed. Things kinda went down hill from there. Somehow Brian's tubes of blood for the lab got lost. We couldn't just draw new labs because by that point he had antibiotics in his system. The nurse assured us they would find it and it would all be OK. Fred and I kinda strained a smile.

Brian enjoyed a red Popsicle and of course the ipad.

Eventually they did find the blood and said that Brian's ANC was at 700. (500 and below is neutropenic and requires a hospital stay). Brian was released and we JOYFULLY went home.

Today Brian is feeling fantastic. He and William are playing ninjas (with blue painters tape on their faces?!?!). His counts are low, so we are staying at the house, avoiding germs. Just because Brian's counts are low doesn't mean that he feels bad, but that his body is unable to fight an infection. Exposure to an infection could cause Brian's counts to lower even more and require a hospital stay. So, we are keeping it at the house this week. :-)

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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.