Some of you don't look at the comment section and some have asked about why we still need the chemo. The chemotherapy is to kill any cancer cells that may still be in her body. Cancer just means fast growing cells. A cancerous tumor can be found just about anywhere in your body but really can't be detected until the tumor gets to be a certain size to see on CT scans or MRI's. The chemo kills any fast growing cells, good and bad. So all of the cells inside your mouth and esophagus or stomach and hair is attacked. So there are numerous side effects of chemo. So Devree has had her round of tests to make sure she doesn't loose any ground during chemo. Her hearing has been tested and hasn't improved or gotten worse. Radiation and cisplatin (main chemo drug) cause hearing loss. Her balance has gotten better. But I was hoping that her Physical Therapist would offer the electric muscle simulas for her facial muscles. St. Jude wouldn't do it during radiation and now the hospital doesn't allow it at all. That was a bit of a disappointment. I guess I will have to research that myself. Her coordination is better. She did the game with Dr. Armstrong that she doesn't like to play, touch the finger to her nose and then touch the doctor's finger as he moves it quickly in several different directions, He was really impressed because she has improved. She was tested for occupational therapy and passed with flying colors. Her psychology test came back before and said she is a little slow in her responses. She will be tested again in psychology. She is being tested for speech. Speech for brain tumor patients is a little different than just seeing if she can pronounce the words with her paralysis. She is tested on how quickly she can come up with words and explanations of pictures of items. She passed with flying colors before. In fact they went as high as their testing allows and Devree passed.
Today we will have a radiation follow-up. The affects of radiation last up to 6 months after. She did apheresis for 9 hours being in a bed to get her stem cells for transplant during chemo. She was able to get enough for 2 rounds of chemo but she will have to go back for another time ofr apheresis. We were relieved because sometimes 2 days in a row they want you to do apheresis, but Devree's blood was good.
At 8 pm we will be admitted into the hospital to start chemo tomorrow. I will take pictures of the hospital and it seems like they still want us to do a ton of stuff in there. She needs to get up and make 3 rounds of walking around the hospital floor and she has to blow in this thing about 10 times a day and she has to do stuff for her teeth several times so the chemo doesn't make her teeth fall out and so that she doesn't get mouth sores. She has to urinate every 2 hours for 2 days so that the chemo doesn't stay in her system and damage her kidneys. They give her another drug to help prevent that. There is a packet of 100 pages that I had to read and frankly it is SCARY!!!! She has to be weighed 2 times a day at 12 hours apart, wearing the same clothes because there is another drug that causes liver damage and any weight gain could be the liver shutting down. Then we have to be really careful of any bacteria or germs in anyway! So she has to take a bath everyday and a sitz bath in iodine. She has to wear slippers on the floors but cannot just wear socks because she is not allowed to walk on the floors and sleep with those same socks. Of course she has to change her clothes everyday but she has to be wearing the same clothes that she was weighed in that same day. There are only 3 other people allowed in the room because of the Hepa filter to clean the air. But I do get a seperate room so the nurses won't be waking me up, I will just wake Devree to assist her with the going to the bathroom every 2 hours. I don't know if they allow anyone to visit. Right now it looks like just family and no one under 12 years of age.
Whooeee, if this isn't something! I have the camera packed to take all of the pictures of us in the hospital.
Have a Great Thursday.