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Caitlyn's World 
Welcome to our Child Web Page. It has been provided to keep people updated about our Child.
Journal
Thursday, March 6, 2008 2:49 PM CST Here's to waking up on thursday and thinking it is Friday. :) Yuk.
Caity had a better night last night. Scott stayed here and I went home for the night with Makenzie. She sure is missing her family and her big Sis.
We are feeling pretty done with this hospital I tell ya. I wish we could could get this done and be home. We are all in need of recovery.
Caity is doing better phsycally but mentally I think she is struggling with not having any control at all. They removed the epidural and now they are giving her pain meds through her Pick-line IV. Which runs from the inside of her arm all the way up then down the middle of her chest.
They are also giving her nutrients so that she can get stronger.
She seems pretty pissed off.... excuse my language.. But she is still so mad about everything. she is bossy and rude to us and the nurses. She won't let us watch T.V. and she wants us quiet all the time or rubbing her feet or itching her all over or washing her hair with this funny little wash cap they have.
She is demanding and complains and insists that the nurses are at her beckon call. Wow! We got our Caity back! :) This is how we know we are recovering. :)
She has every right to be upset and miserable but we are not going to let her abuse the people that are taking such good care of her.
The Oncologist came to talk to us about the pathology report. He had absolutely nothing good to offer us. Amazing. We feel so helpless and slightly defeated.
The cancer is unpredictable and there is still no name for it and at this no available treatment.
he is still determined that the cancer cells are still there and just need time to grow again.
He would like to start her on chemo but honestly has no idea which meds to give her. He has a meeting in the next few weeks with Doctors from around the United States and this is one of there main subjects of discussion. Caity.
They are going to brainstorm on treatment.
For now all they have to offer is wait... Wait for four months and see if there is any growth to go on. if there is something visual then they can start some random Chemo drugs and then monitor the growth to see if it effects it or not. But they have to have something to visually see to know if the drugs are working for her. they will just try until they find the right ones.
We might need to transfer to Tennessee (spelling?) to St. Jude's Hospital to try to get a btter treatment plan.
But for now they have nothing.... nothing.
That is the hardest part of it all. Not knowing anything. Not knowing what to expect for caity and for our family. Worrying everyday when she get's a stomach ache or is sick, if it is growing....
Waiting for regrowth so that we can just make her sick... Not fearing whether it will come back but how we will treat it when it does.
This is really all I have to give right now..
But know that she is better and she is getting her Cathader out today and the NG tube around 3pm and then we are the road to recovery. Hopefully we can get out of here MOnday or tuesday. Please feel free to come see her. The best time is early in the afternoon. she kind of crashes late afternoon and evening.
Thanks again for the support.
misti
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Hospital Information: Children's hospital
4800 Sand Point Way NE
seattle wa. 98105
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