Brian Robert & LCH: Keep Praying

Friday, November 26, 2010

Keep Praying

On Tuesday we had Brian's blood work done to check his counts. The results came back on Wednesday and his counts were even lower than the previous Friday. We took him back this morning and the lab was closed. We ended up going downstairs to the diagnostic center (all of this is at the hospital) and it was a disaster. Poor Brian was poked several times and the lady fished around in his arm with the needle but never got blood. If Brian needs blood work that they don't get from his port we typically put some Lidocaine cream on him so he doesn't feel the prick. When the lady fished in the numb arm it wasn't too bad. When she moved over to the arm that didn't have cream Brian screamed. The lady was getting ready to move down to Brian's hand/wrist to fish around there and Mommy called a halt. Mommy said we were not going to keep "trying" but we would come back on Monday and go to the lab. Thank you very much. Mommy should have immediately protested as soon as she recognized the nurse as the women being trained in the lab on Tuesday. It was this lady's first week at Sacred Heart. Everybody needs time to learn and get comfortable, but little Brian will not be anybody's testing ground. He goes through so much already. Anytime we can minimize some stress and discomfort we do. So, Monday we will go back and see our lady, Miss Jean, at the Pediatric Lab. We will keep you posted.

These are old pictures of Brian, but it gives you a peek at some of the places he frequents at Nemours. They try to make it as cheery as possible.

The hematology/oncology clinic has a play area in the back near the infusion rooms. No children except patients have access to this area. It's different than the waiting room.

This picture is just adorable. This is from Brian's birthday in August. Grandma Hayes gave Brian a HUGE Woody doll and the Woody PJ's he is wearing. I included this picture because it shows what our Brian normally looks like. The steroids and chemo have made Brian look huge and swollen. It's sad to look at him now because he just looks like a sick child to us. This is our BB...

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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.