Brian Robert & LCH: Third Chemo Week- Days 1 & 2

Wednesday, May 30, 2012

Third Chemo Week- Days 1 & 2

Week Three of chemo started out on Tuesday b/c of the holiday on Monday. We were told that Brian's doctor adjusted the medicine he receives over a five day period to fit it into four days. That means each day of this chemo week Brian will receive a higher dose each day.

Tuesday was LONG. We arrived at the hospital at 8:30 AM. The girls and I had to leave at 2:15 PM to get to ballet on time. (Their recital is next weekend and that was their last ballet class at the studio.) Fred and the boys were able to leave the clinic around 3. We spent most of the day waiting. Waiting on blood work results from the lab, waiting on chemo to be made and waiting on the staff to get to us. It was a busy day for them.

We had all the kids with us. They did AMAZING. Several people commented on them behaving so well. It was totally God blessing us, because they are not typically as well behaved as they were on Tuesday. Especially when they are cramped into a small room for hours on end.

Things did get a little crazy towards the end of the day when Brian was asked to share his water bottle. He didn't want to share with William and threw quite a fit. He hasn't thrown a two year old temper tantrum like that in quite a while, so I took pictures. We showed him the picture and he was laughing about it. Yes, the big fit was over sharing a sip of water.

Wednesday (day two of chemo week) went fine. Grandma and Grandpa Schreiber arrived from NM lateTuesday afternoon so they stayed home with the other three kids. Brian's apointment only took two and a half hours. Brian did great. He took Mickey Mouse with him because he is looking forward to our Disney Trip in a few weeks.

After lunch Grandpa and Grandma needed to run to Sam's. All the kids wanted to go along, so against my better judgement I said we would all go. Fred and I always try to find the balance between allowing Brian to be "normal" and knowing when to tell him no he can't participate. We were in Sam's all of six minutes when Brian started asking to go home. He really didn't feel well. Brian and I went to the car while Grandpa and Grandma quickly finished their purchases.

Brian in Olivia's car seat. He normally sits in the back, but wasn't up for climbing back there himself.

Brian fell asleep on the couch and continued to say his head hurt, he was cold and he didn't feel well.
He was running a fever. He slept off and on.

He did not eat dinner, and by 7 was running a temp of 102 and throwing up. We phoned the oncologist on call (Dr. Schwartz) who told us to head to the ER. He said if Brian was not neutrapenic (counts below 500) he would allow us to go home after antibiotics, but if Brian was neutrapenic he would be admitted. He also told us that Brian's counts were 900 on Tuesday morning before chemo.

After three hours and some antibiotics Brian was able to come home. We were thrilled that he was not admitted, but we were sad to know that this is his reaction to the new chemo drugs. Thank you for your continued prayers for Brian Robert.

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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.