Brian Robert & LCH: Pictures from the week

Monday, May 7, 2012

Pictures from the week

Here are some pictures from the week. I will post stories with them later today. Right now I am going to take a hot bath then get a nap!!!

Brian with Dr. Kummer and Dr. Schwartz. Brian kept calling Dr. Kummer Dr. Schwartz and Dr. Schwartz, Dr. Kummer. He thought they looked alike and wouldn't believe us if we tried to correct him. One day they happened to both come in his room at the same time and I had to take a picture because Brian was just silly.

The kids first visit together after Brian was admitted. It has been a couple of days since they saw each other.

Visits together made all four very happy. We found things to do to make the time "fun".

Playing Go Fish with the bed at its highest setting.

Outside in the children's play yard.

The outdoor playground is on the roof of the second floor.

I took this picture from inside. I am by the third floor elevators.

Adam from CC came by to visit and brought Brian a TON of books and balloons. It made Brian super happy and he was proud to show off what the bed could do.

We played dominos (the Brian way) in the oncology playroom.

Even though the oncology play room is only for cancer kids so it is a little cleaner, I still went in with my bleach wipes and Lysol and cleaned before we let Brian play. In the picture below Brian is in a car that he LOVED. By Thursday night he was feeling well enough that he wanted to move around and play!! I pushed him down the oncology hall in this car super fast. It was fun. Brian laughed and enjoyed himself and that was enough for me. It was quite challenging to push him and pull the pump at the same time. :-)

Aunt Kasy play ALOT of Go Fish. I am sure she will always think of our kids when she plays this game from now on.

Brian got a visit from Mea the dog. He got to give her treats when she did tricks. He was happy to see her as he missed out on the dog that visited the day before because his counts were too low for visitors.

The sweetest thing EVER. Brian really wasn't eating the food they were giving him. One day Aunt Kasy brought him Special K from home. The next day the lady that delivers the food had found some Special K and added it to Brian's tray. It was not a part of his menu, she was just observant and super thoughtful!!!!

Every Mommy out there is going to LOVE these pictures. It is was makes all the hard Mommy work worth it. Brian is super happy in these pictures because he is Face Timing with his brother and sisters. They missed each other so much and wanted to be together!!

No comments:

Post a Comment

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.