People I am worried about

Last night I kept thinking about Darci, then I’d think about Eduardo, then I’d think about Brie, then Penny, then I’d start all over again.

I decided to share my worrying with everyone out in blog land.

Darci, my sister in law. Darci has stage 4 melanoma and no treatment has been effective. It is very discouraging because not only is the cancer awful but her treatment has been so disorganized, chaotic, muddled. (I’m not sure of which word to choose.) One doctor suggests one thing, another something else. There is a total disconnect. They do test and don’t give her the results in a timely fashion. They tell her she should get a consult and then she has to wait and inordinately long time for the consult. No one seems to feel any sense of urgency. They don’t respect her knowledge or her ideas. She is a microbiologist and one doctor told her to quit looking at things on a cellular level. I can’t remember the exact quote but it made me crazy. I’ve been a nurse for 20 years and I am still amazed at how uncaring our healthcare system is. There are people out there who say we have the best healthcare system in the world. Good grief, obviously they haven’t worked in healthcare or had cancer.

Eduardo. Eduardo is the grandson of Daisy (my exchange student in high school) and son of Rogerio (Rogerio was our exchange student 7 years ago) Eduardo is two years old and has liver cancer. He has had three rounds of chemotherapy and last week he had surgery to remove his largest tumor and three smaller ones. At night when I lay down next to Sean while he’s sleeping and snuggle his head I can’t help but think of Eduardo and his little balding head. It just breaks my heart.

Penny, my 10 day old niece. Penny has Vesicoureteral reflux and beta strep. She is home from the hospital with a PICC line. Ultimately I think Penny will be just fine but it’s one more thing to worry about. She’s been in the hospital and had so many tests and been poked and prodded so much for such a little person.

Brie (Sean’s 3-year-old sister) instead of developing she is regressing. It’s hard to explain but she is just not acting like a normal child anymore. It’s gotten so bad that even her mother is taking note. In addition to not talking age appropriately she slaps herself in the head and screams. She actually walks like a child with mental retardation and she used to walk normal. She has an appointment for some testing on the 15th. I asked her mom if she got her hearing test like the doctor ordered and she said “I lost the phone number.” I don’t know what to do for Brie. DCFS actually called me last week. (Miracle of miracles, them calling me to check on the girls). I think Brie’s behavior is all a defense mechanism to things that are happening to her (or have happened to her) but if it doesn’t get addressed now and she doesn’t get help I fear these behaviors will become permanent. People have offered to help Brie but thus far her parents have not been receptive. I know Jenny doesn’t want to give up another one of her children and I can respect that but poor Brie.

All this worrying and I can't fix a thing!