Brian Robert & LCH: We are home!!

Tuesday, June 5, 2012

We are home!!

Brian was able to come home from the hospital with home health care. This is basically a repeat of several weeks ago. We are giving him Vancomycin every eight hours through an infusion with a rental pump.
   We were suppose to leave Monday for Disney World for Brian's Make A Wish Trip, but that is looking like it is not going to happen. We have an appointment with Hem/Onc on Tuesday to follow up with blood work. I will let you know more as we find out but for now please pray that somehow we are still able to take Brian's special trip next week.

Because home health care could not deliver our medicines to the house until the evening, Brian had to stay in the hospital to receive another dose of antibiotics in the afternoon. We ended up staying at the hospital until 5:30 last night. We were SO glad to get home.

   Brian had lots of time to kill and the day was long. One of the neat things the hospital does is let kids paint ceiling tiles to decorate the children's wing. One of the volunteers that plans activities for the children came by and asked Brian if he wanted to come play in the play room. When we got down there he saw a stack of ceiling tiles all spread out and some paint (some kids had painted earlier in the day) and he said he would like to paint. The lady sweetly said yes. She got all the paint and brushes for just Brian. He enjoyed himself so much and was quite silly.

example of some of the ceiling tiles

more tiles

Brian, the artist, at work.

Mommy thought to add Brian's handprint, but it only lasted about two minutes before it got covered in paint.

Mr. Silliness showing off his work.

The final product.

1 comment:

nancygrayce said...: Awwww......so cute and what a great thing for them to do and especially when the day is long and the child needs to do something!

So, so glad y'all got to go home! Praying that the Disney trip happens!; June 5, 2012 at 10:53 AM

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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.