Brian Robert & LCH: New Calendars

Thursday, May 31, 2012

New Calendars

Now that April and May are behind us we are moving into June and July. We are only putting a couple of Brian's chemo calendars up at a time in an effort to not overwhelm him. Brian was thrilled to see June had Mickey Mouse "circles" highlighting our trip to Disney World. Several months back Brian was granted a wish from the MAKE A WISH foundation and he chose Disney World. We are looking forward to that special trip and cannot wait for the surprises that are ahead for all six of us.

Here is Brian this morning super excited about his new calendars and showing off his breakfast. That's right, he had a sugar cookie with pink frosting for breakfast. We are just thankful the boy is eating again. (and able to keep it down!!!)

Not too long ago I read a tweet off of twitter that said the following: "My daughter ate ketchup and ice cream for dinner. If you need any more tips on shepherding a child's heart, let me know."
I laughed my head off for a long time!!

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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.