Brian Robert & LCH: PRAISE

Thursday, July 5, 2012

PRAISE

We all went to Brian's chemo appointment this morning and we were THRILLED to have not heard from anyone regarding the blood cultures taken on Tuesday.

Fred asked our nurse if there were results or any updated information. So far, at almost 48 hours out there is still NO bacteria growing from the cultures.

While this is awesome news, it is also kinda sad to know that Brian's previous hospitalizations were probably unnecessary. Plus, we know that this is his reaction to the meds. Every day two of treatment he gets pretty sick. As we move forward we will have to work with the doctor to prevent unnecessary hospital stays, but still wanting to not ignore fevers just in case of infection. It's going to be a tough act to coordinate.

Thank you for your prayers and please continue to pray for Brian Robert.

All the kids with their electronics to get us through the appointment.

A tired boy tuckered out from the week.

Brian's new calendars. I remade the July calendar because everything was off from Brian's week of low counts that prevented him from getting treatment last week. Everyone enjoyed checking out the new calendars.

Everyone checking out the new calendars.

Brian excited to see his birthday on there.

1 comment:

David and Kate said...: Glad for your good news in the midst of all this difficulty. You all are in our prayers!

Kate; July 5, 2012 at 7:40 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.