For those of you who don't know, my brother Travis' daughter, Ari, has been diagnosed with LCH. She is currently in Primary Children's Hospital. They have so many people who care about them and are praying for them. I put the information on my blog so that those who would like, may read about how she is doing. Jaymi also summed up her history and condition really well...I won't try to recreate it. http://kingskourt.blogspot.com/
Her history as transmitted via text messages to the family. Most recent texts are posted first in the reading order:
Sunday, September 6. 11:01 a.m. VICKI: Bad night. She was moved to ICU. Her platelets are suppose to be 150. Hers are 8. She is having another blood transfusion. They did get the pick line in this morning. They are aggressively going to treat the LCH. They aren't waiting for anymore tests to come back. They said they are in emergency mode so they will start treatment without confirmations.
Saturday, September 5. 5:46 p.m. VICKI: The pick line was unsuccessful. They tried for over an hour, but her veins were too little. They couldn't get it in. They are going to try again in the morning so she's going back to getting poked every four hours. Mom said the poor thing falls asleep everytime right before they come in again.
Saturday, September 5. 1:21 p.m. VICKI: Ari is having a pick ?? placed at 3:00 I'm not familiar with it. But I guess they install a line in her that is like a tube that goes directly to her heart so when she has medication given to her she won't be poked everytime. My Mom said that her veins are so hard to find that it's been awful every time they have to give her medicien and right now that's every 4 hours. To have the pick installed is a surgery with general anesthesia, but it will be better for her.
Saturday, September 5. 9:58 a.m. VICKI: Drs. haven't said anything. but Ron was just reading about it. He said that he found a more medically based website (he kept reading words that I couldn't pronounce.) Anyway, it listed a spectrum of the cancer. The good end is a focal LCH where it has affected one area. That has an 80-90% survival. However multi-symptom (and the more symptoms you have the worse) is at the far end of the spectrum and it has a less than 50% survival rate because it gets into all of the organs and starts shutting them down. She has every single symptom...and she has the lesions on the brain, enlarged liver and spleen, and fluid in the lungs. My Mom said they asked one of the drs. last night what the chances of survival were and she wouldn't give them an answer.
Friday, September 4. 6:55 p.m. TRAVIS: http://www.cancerbackup.org.uk/cancertype/childrenscancers/Typesofchildrenscancers/Langerhanscellhistiocytosis Friday, September 4. 6:53 p.m. TRAVIS: If anyone wants to read up on what the doctors believe Ari has this site explains it the best. I will send it in the following text.
Friday, September 4, 2009 4:58 p.m. VICKI (in Alaska): Well they have some answers. It's not leukemia it's actually worse. It's cancer and it's called LCH. They said it's really hard to explain it. The best thing they said to do is google LCH. She is scheduled for a cat scan tomorrow. They have to see where it has spread. It is treated with chemo but they didn't give any statistics.
Thursday, September 3, 2009 4:27 p.m. JAKE: Hey. We are breaking the fast now. September 2, 2009 6:15 p.m. HALEY: We are starting another fast for Ari. Her surgery is at 2:30 so we will end it at 5. Tell anyone you want. They think she has leukemia. Thanks.