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: Bad news for my family.  ( 8765 )
Chris Cory - President 2012-14 -Life Memeber
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« #30 : March 11, 2011, 09:37:51 pm »

Thank for the advice Jenn, she is done with the mouth swabs and has been on ice cubes for a few days.

This month is sure different that how I had planned. This was going to be a busy racing month for me but as you know, things have changed.

I haven't updated on what has been going on for a while but it has been a roller coaster. To start with, things are finally looking better but we are still taking it one day at a time. She has been transferred down to UC Irvine hospital and from what we have seen, this alone may save her life. She has top surgeons and Dr's working on her now. The only good thing about Antelope Valley hospital is that they got the transfer setup for her to go to UC Irvine.

What has happened with her insurance and High Desert Medical Dr's over the last year or so is very upsetting. First she was turned down for two colonoscopies. With the family history of cancer this was absurd and even the ER doctors were upset when they found out. she hasn't had one in 6 years. Next was her regular doctor(s) who let her go for over a month of being sick, not really eating and having let?s say bathroom issues EVERY SINGLE day for the entire time, and never admitted her to really see what was going on. They did x-rays and blood work and the normal push the patient through the line kind of stuff. They DID NOT even catch the gale stones that the x-rays showed that the ER Dr?s caught when they reviewed them. When they did find the mass, the request to have a CT scan was put in that she had to wait for. Just to be clear, at this point she had been sick for about a month and a half and was very week. They sent her home to wait for the approval. Oh, did I forget to mention that the Dr was walking out of the room when my parents stopped him to ask about the ultra sound results which was why they were there in the first place? That was when he said oh and looked at his papers and then told them about the mass that they found.

So she ended up getting the approval 9 days later, two days after she was already admitted to the hospital. This now leads us to the worst part of all this. Antelope Valley hospital did the CT scan and saw the mass as the Ultra scan had showed. We told them all about our family history with cancer. They said they were going to remove the mass that Saturday morning. The surgery showed that it was cancer and turned out to be much more than they expected. After the surgery, her intestine that was capped off was leaking and for the most part, there plan was to give it a month to SEE if it would heal on its own. The nursing staff was up and down. Some were great while others were not very good at all. Two continual issues were with her drains. One on her right looked like a hand grenade and it was very critical. My family had to tell the staff about it almost EVERY time they moved her. The Dr finally told them to tape it to her. The 2nd issue was with the two drains on her left side. They accidentally pulled one of them out while moving her. The 2nd one would go for hours without doing anything. We asked the nurses about it multiple times and they would look at it and say it was fine. Finally we complained to the Dr and he asked the nurse if she had flushed it. She said no, which they hadn?t all week, and he was pissed and said he had written orders for it to be flushed EVERY 8 hours! 

So the biggest mistake that Antelope Valley made was to do the surgery in the first place! We expect Dr?s to know what they are doing and provide the best care for us. The new doctors at UC Irvine said the she should have NEVER had the surgery and that she should have been treated for the cancer first! They were pretty upset that now they are having to FIX the issues from the surgery first before they can start treating her cancer. The oncologist out here said she has weeks to months to live instead of the year like she had hoped if she goes without chemotherapy. So to hear that combined with the new doctors saying that it could take months and 4 to 5 procedures to correct and heal for the surgery is very upsetting to say the least.

We did get some hopeful news tonight though. The new oncologist came in but didn?t know to much about her. She said she would review her records and come back. She didn?t come back so my sister figured we hear something next week. Three hours later the TEAM came in and talked about what they were going to do. They are going to do the PET scan and bone marrow tests next week that will really tell them what they are dealing with. We were looking at a month or so from now out here for these tests. They are very optimistic through and are giving her a 50 to 60 percent chance of being curable. They can start her on chemo in about 3 weeks or whenever she is healed. This is great news from everything we have been hearing and seeing.

I really wish I would have known about more of what was happening with her over this last year. She keeps things to herself and didn?t tell us everything. I also would hate to imagine how things would have been for her at Antelope Valley hospital if we weren?t there 24/7 with her. It is also sad that this medical system is so screwed up.

We will keep moving forward and are extremely thankful that she is at UC Irvine now and not at Antelope Valley anymore. It is a huge difference in medical care between the two.

Chris Cory
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« #31 : March 11, 2011, 09:58:46 pm »

Thanks for the update Chris, hopefully she gets better care at this hospital.

I have issues with Kaiser as well, if I had listened to the urgent care Dr., I would probably still be popping Vicodin every 4 hours and keeping an ice pack on the swollen arm. 6 weeks to finally get an answer is B S.  To be fair, after the MRI and referal to another Kaiser facility, I have been on the "fast track" thru the system and have been more than happy with the service and care.  They would have liked to treat the cancer first, then remove the tumor, but since I had been in so much pain for 6 weeks, they went on with surgery.

Again, We hope for the best for your Mom, looks like She is getting far better care now.

Mr J
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« #32 : March 13, 2011, 10:45:59 am »

Just got an update from the new Doctors. They did more CT scans and Ultra sounds yesterday and there concern at this point is her surviving the surgery that Antelope Valley did. If she makes it, it will take up to two months for her to heal. They are basically saying that Antelope Vallery Hospital really F'd up and they aren't sure if she will ever heal from it. She also can't eat or drink durring this healing time so she may be going 2.5 months without eating or drinking anything.

What we thought was her actually moving forward and getting her problems taken care of now is her biggest issue with not getting better because Antelope Valley didn't know what the hell they were doing!


Chris Cory
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« #33 : March 13, 2011, 08:35:31 pm »

Hang in there Chris, were all pulling for You and your Mom.

Mr J
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« #34 : March 13, 2011, 08:57:23 pm »

Thanks Bob, it is a roller coaster ride I wish I wasn't on!

She was moved to another room tonight. The new room is in a wing were the nurse only looks after 3 room instead of 4 rooms where she was. They have teams of Doctors looking after her now so it doesn't seem like she could get any better care than what she is getting now.
The Doctor did say this morning that she will be there for the next 2 months or so. This actually makes us feel better based on the care she is getting even though it is around 2 hours from the house. Antelope Valley was planning on her transferring to a convalescent home at the end of last week. That was before the realized they really screwed up and they needed to do something about it so she was transferred.

Chris Cory
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« #35 : March 14, 2011, 09:16:42 am »

Hang in there Chris, tough times for sure. It's stories like this that make you understand why the politicians are trying to fix the health care system.

Also sure makes me appreciate Kaiser much more.
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« #36 : March 14, 2011, 12:21:47 pm »

Thanks Bob, it is a roller coaster ride I wish I wasn't on!

She was moved to another room tonight. The new room is in a wing were the nurse only looks after 3 room instead of 4 rooms where she was. They have teams of Doctors looking after her now so it doesn't seem like she could get any better care than what she is getting now.
The Doctor did say this morning that she will be there for the next 2 months or so. This actually makes us feel better based on the care she is getting even though it is around 2 hours from the house. Antelope Valley was planning on her transferring to a convalescent home at the end of last week. That was before the realized they really screwed up and they needed to do something about it so she was transferred.


Glad to hear they DID NOT send Her to a Convalesent home, and you think things were bad at the A V hospital !!  (I wont elaborate).
2+ months seems like a long time, but it looks and sounds like She is getting much better care and thats what counts.
Again, your in our thoughts/prayers.

Mr J
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« #37 : March 14, 2011, 01:09:18 pm »

Holly crap Chris, what a story. It sounds like things are heading in a good direction now. I 'm glad to hear that. We are thinking of you and your family.
CB

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« #38 : March 14, 2011, 02:59:51 pm »

Holly crap Chris, what a story. It sounds like things are heading in a good direction now. I 'm glad to hear that. We are thinking of you and your family.
CB

Yes, you were in our thoughts/conversations this weekend for sure.
Chris Cory - President 2012-14 -Life Memeber
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« #39 : March 14, 2011, 04:40:23 pm »

 Thanks guys. She just got done having an inline fuel filter put into the artery that goes to her heart. They did this to prevent any blood clots from hitting her heart. They had to take her off blood thinners because she had some bleeding in her drain. They had a whole team of doctors come in an discuss everything that is going on. It is amazing the care that she is getting now.

 This has been a very emotional time but it is more of a get down to business kind of feeling now.

 I am not sure when the next time I will be out in the desert will be. With her being a round 2 hours from the house the only time we can see her for the most part is on the weekends.

 I will still be representing at the big 6 meeting tomorrow night though.

Chris Cory
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Chris Cory - President 2012-14 -Life Memeber
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« #40 : March 23, 2011, 08:17:34 pm »

I haven't given an update for awhile. We are still hoping and praying but things are not looking good. We are going to the hospital tomorrow to discuss with the doctors what to do in terms of keeping her alive. At this point, they aren't giving her much of a chance and are saying it will probably be within 30 days. She isn't healing from the surgery which means they can't feed her and she can't stay on the IV long term. She is to weak to go through another surgery and nothing can be done about the cancer the way she is now.

She has been very delusional since Sunday night and most of the time, is living in the past. She didn't know my sister the entire day and comes in and out of this state. It is appearing that she has an infection setting in and it has come to the point of needing to make the decision to start to let things take there course.

For those of you that have lost someone, you understand what we are going through. For those of you that have not, I can't explain how this feels.

There is still a chance for a miracle to happen but we also have to face reality that the end may be near.

Thank you all for the continued thoughts and prayers.

Chris Cory
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« #41 : March 23, 2011, 09:21:19 pm »

Still hoping for the best for your Mom
Between Lila and I, We have lost both Dads and My Mom and Step Mom and know first hand what your going thru.
Hang in there Chris, all of us are here for You if you need anything.

Mr J
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« #42 : March 24, 2011, 07:34:43 am »

I am so sorry Chris, this has to be rough. You know you are in our thoughts and prayers. Hang tough.
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« #43 : March 24, 2011, 12:32:23 pm »

You and the family stay strong! Again our prayers are w/ you. The Joneses
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« #44 : March 24, 2011, 01:12:23 pm »

Hang in there Chris we will keep you and your family in our thoughts and prayers. I know these are hard times that require some very hard choices. We wish you and your family the best.

CB

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