Brian Robert & LCH: The New Plan, part two

Tuesday, March 29, 2011

The New Plan, part two

Brian is such a little trooper. He certainly has a big helping of God's grace on him. He just handles things so well for a little four year old. That's not to say that he doesn't have his moments of total meltdown, but he is really great about all this. It's a lot for a little guy to handle.
Last week he received his first infusion of "the new plan" and took five days of steroids. He threw up several times, had diarrhea, spit out his medicine and didn't want to take it. We noticed an increase in his emotional outbursts and a decrease in his energy level.
Last week at his appointment we also learned that Nemours has a new procedure for chemo. Brian has to get his blood work to check his counts the day before chemo. We were told that they were wasting alot of drugs from kids with low counts (b/c if counts are low they can't receive their meds). In order to prevent wasted chemo meds we now have to get Brian's blood drawn the day before his drugs are to be prepared and administered. Sounds great for not wasting meds, but for a little four year old it means going to the hospital twice a week and getting stuck twice instead of once. It was not fun telling Brian we had to do that today. He cried and announced how scared he was. It took Mommy and two nurses to hold him still to get his blood drawn. We could have used his port but it really was easier to just draw it out of his arm. The entire experience was not pleasant. Here's a picture of Brian waiting to get his blood drawn.

We had CC today so one of our friends took Ansley and William home with them after school and then met us at ballet at 4:00. I only had Olivia with me for B's bloodwork. Olivia still naps and she was especially tired after our morning at school. Instead of trying to carry a tired Olivia and hold a scared boy that needed to be comforted, I used our double stroller that we haven't used out and about in quite some time. Maybe even more than a year. Anyway, pulling the stroller out was super exciting to Olivia and she kept buckling herself in and saying "I'm locked. I'm locked...please let me be free". She was saying it like a princess that needed to be rescued. Brian was not amused and it didn't distract him one bit.
     While we were in the car on the way to the hospital I asked Brian what I could do for him. I told him that I wanted to help him not be so scared and then tried to encourage him that we thought he was doing an awesome job being so brave and enduring what alot of people couldn't handle. He said that I could pray for him and hold him and snuggle him. (SO SWEET!) He then told Olivia she should pray for him too. So as we are leaving the hospital Brian turns to Olivia and gets onto her for her "rescue a locked princess" dramactic play. He says "OLIVIA! I told you to pray for me and you didn't!!!" She ever so sweetly responds with, "I did, in the car. Thank you God that Brian doesn't have chemo when he is five."
  We surely pray everyday that when Brian finishes this round of chemo when he is five and a half that he will be done for life with NO long term side effects.


On a happy note, Brian loved his happy meal toy from today's lunch.

Every little boy loves a super hero. Here is Brian and Robin. Thank you McDonalds for 20 minutes of smiles.

1 comment:

nancygrayce said...: Bless his heart. He knows prayer helps!; April 6, 2011 at 7:52 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.