Tuesday, May 10, 2011

New updates

Leah went for her CT scan yesterday afternoon and they ended up doing only a scan of her chest and upper abdomen, since the attending radiologist said doing a full body scan was too much radiation and she is too small. From that scan they did not see any sign of a tumor, but again, it was only a portion of her body. So tomorrow she will go in to Nuclear Medicine for her MIBG scan. They gave her a couple drops of the radioactive tracer that will light up any tissue that is neruoblastoma earlier today. They also gave her some iodine so that her thyroid will be protected from the radiation.

She also got another spinal tap today, since they have to do more tests, but luckily we all remake spinal fluid within a few days. They actually froze a whole vile of it in case they needed more later, that way they don't have to poke her again. It was funny because the nurse told us that while she was sedated for the the spinal tap, they had to take off her diaper and clean the area of her back, but that she started pooing and they had to wait for her to finish. The funny part was every time they thought she was done, more kept coming out! :D Apparently the doctor kept telling our nurse: "ew! Elena, clean it!!" haha, she was teasing him about having to get used to it if he was ever going to have kids.

The ophthalmologist came by today to let us know that he showed some videos of Leah's eye movements to his colleague who is a pediatric neuro-ophthalmologist, and he said that it looked like opsoclonus-myoclonus to him and he wanted to come over to see her in person. I think they said they were coming tomorrow. He also mentioned that many people who have opsoclonus don't always develop the tumor and what she is going through may be an autoimmune response of her body that could have been because of her vaccines or sometimes a cold can do this as well. We mentioned that this all started after her vaccines and that when they did cultures from her nose, they found the common cold virus, and the coxackie virus. So, he thinks that it might be able to be treated with IVIG. Again, that's an assumption and we'll have to make sure they rule out the big bad things like cancer, before they can say exactly what it could be.

She continues to respond to our voices immensely to the point that even heavily sedated she manages to open her eyes and melt us. Her breathing issues may NOT be attributed to anything connected to what she's had, other than possibly major acid reflux corrosion that irritated her airway causing her to choke.

The neurology team also came by today to see her, and they don't really have any news, but they did tell us that they are going to reach out to Dr. Pranzatelli, who is supposed to be the best doctor in the world in the specialty of opsoclonus-myoclonus (http://www.omsusa.org/ is his website). So, they are talking to him about Leah to see what treatment options are available for her. Which is really great, since we had done some research and had seen his name pop up and were going to tell the doctors about him, but they are already on it.

We also got a visit from a representative from Chai Life Line (http://www.chailifeline.org/), which is a jewish organization which helps families that have children in the hospital. They were really great and are bringing us lunch and dinner everyday, which is such a relief since buying food at the hospital cafeteria gets expensive and sort of boring (as far as the food is concerned).
They are also working with the social workers here at UCLA to write letters to my work and Zev's work excusing us because of Leah's condition. Not that they wouldn't excuse us, but it's more of a proof thing to have.

We also got a visit from our best friend's parents, Dolores and Ray Starke today who have been incredibly supportive and they took us out to lunch while Leah got her lumbar puncture. It was nice to have them here and be able to talk to them, they are sort of like our Mormon parents, lol. :)

My mom also came by for a little bit, with a mask on, since she is taking care of a little girl who is sick, so she didn't want to pass it on. She was able to look at Leah through the glass door at least.
I don't think I have anymore updates for now, we are just waiting for tomorrow, and taking one day at a time.
Keep Leah in your prayers.

1 comment:

  1. Thanks for the update. I hope this all means things are looking up! Much love you to all and will see you soon. Walter & I are going to try to come down on Sunday but will call you first of course.