Brian Robert & LCH: Update Friday 9/24/2010

Friday, September 24, 2010

Update Friday 9/24/2010

Today Brian had surgery to have his port implanted. He was NOT happy to go and it was a very difficult day. It started off kinda crazy as everyone we attempted to contact to watch the other three kids was not available to help. Fred had to stay home with them while we waited for Aunt Dabney to arrive from Panama City. (She's the perfect example of a selfless servant. God gave her a heart to think of others before self for sure!!) So, Mommy and Brian went to the hospital at noon and Daddy met up with us a little after 2:00 PM. As is typical for the hospital, they were running about an hour behind schedule. That totally worked in our favor today. We were fortunate that Fred arrived about five minutes before Brian went back for surgery. Fred got to hold Brian and reassure him that we were both there for him. Brian got Versed to calm him down before going back for surgery but they gave it to him about an hour before they took him back so it was starting to wear off. Mommy had promised Brian she would be with him until he fell asleep and there when he woke up. In the past when Brian has had a surgery they take him back at the height of the Versed drug working. So typically he would go just about anywhere with anyone and have no idea what was going on. Today he cried and got upset. He was reaching his arms back towards us as the nurse walked away. He was saying "Mommy, Mommy, can't you be with me in my room?" It was tough. Fortunately he doesn't remember that. Unfortunately Mommy does.

The surgery went well and Brian now has a port in his chest to start chemo again on Tuesday. When he woke up from surgery he was crying and said "what's in me?" Brian was also really upset with Fred. Brian didn't want to talk to him or look at him. When I talked to Brian about why he was mad at Daddy he said he was mad because he didn't want Daddy to hold him down again. He knows that a port means chemo, and chemo means Daddy having to physically hold him down and restrain him to have the port accessed. It's just tough. Brian's four. We're praying that Brian will not need to be restrained to access the port this time around.

Brian before surgery. While we talked about his port he said to me, "Mommy, just two ports, right?" Meaning the port he had last year, the one he was about to get and then looking for reassurance that he would not need another one after this.

Photo by Brian. This is what he saw while waiting for surgery.

Brian was very grumpy and mad that he had to have a new port. Mommy and Brian were making faces to show just how grumpy we were about the port. The grumpy mommy face made Brian laugh. It lightened the mood a little bit.

Brian enjoying a little bit of Versed. That stuff totally relaxes him! (For the record he does the thumbs up thing alot. It's adorable. I didn't make him do that.)

Brian after surgery, but before he woke up in recovery.

Brian at home tonight. He got a new toy for being so brave today. If he keeps this medical track record going he will own every Toy Story character ever made really soon!

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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.