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.
2 comments:
Thanks for the updates - you all are in our thoughts and prayers - hoping for the best.
Liz one of the first signs was the break out on her head back in May or June. Remember at the Family reunion and Haley had her to a Dr. and he said it was Cradle Cap and gave her medicine, but it never cleared up. I think Haley took in a secound time but you will need to double check that, any way the DR.'s CPH said that would have been one of the first signs of this LCH. Travis told me last that there are only about 50 cases of this in the US it is so rare, that is why Dr.s miss it. When Travis and Haley can I would like to see them put something together with all the symptoms and things that we can email around to everyone and they email to all they know about this to bring more awareness. Also to help make the Dr.s more aware of it. If the Dr.'s could have caught this earlier things could be better, it is just so new so they don't know. Thanks for doing the blog so people can keep up on everything. Travis had me bring the kids up there so Him and Haley could come outside and see them. It was good for the kids to see them and be able to ask questions. They had a really good visit. I may have a few pictures that I can forward you. OOPS signed in aas Ashley but this is Donalyn
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