Brian Robert & LCH: and we have begun

Wednesday, February 16, 2011

and we have begun

We arrived at Nemours at 8:30 AM for Brian to be accessed. Then we waited for a while for a room to be ready at the hospital. We moved over to hospital around 9:45 ish and ended up in a regular peds room because every single oncology bed is full. That's sad. I think our oncology wing has nine rooms. The two times we've been admitted since our journey began there have never been more than a couple of kids. Now, they are full. Fred and I are grateful we are just here for the day. After a couple hours in our room we are just now a little before noon getting started. I remembered this thing being a crazy long procedure but apparently the crazy long part is not the actual administering of the IVIG but the hospital side of getting it set up and then discharging us.
Right now Brian is playing his Leapster and Daddy is working from his laptop (comfortably from the bed since B is still scared if it.) We should be done in four hours.

2 comments:

David and Kate said...: I am praying for you guys! Keep your eye on your mail as we are sending you something!

Kate; February 16, 2011 at 1:45 PM
nancygrayce said...: Looks like the leapster is keeping him happy. Prayers!; February 17, 2011 at 5:07 PM

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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.