Update Cassie... :(

Blackwidow_woman · #1 (**permalink**) 02-06-2003, 09:27 PM

Ok everyone now i need some input and wanted you to know whats going on... For one thing what would you all do in this situation,, even tought its up to me and cassies dad and her... we went to the cancer brain surgeon yesterday to find out the low down on what we have left to do and how much time and how they were gona handle all this.. well we get there and he starts by looking at cassies new MRI s. he then says to cassie you have 2 options one to try to go in and see if we can take this out,i hate this doc.. anyways he says to her like its no big deal and that she would be perfect when done , then he says ok well we are gona try to take alittle out then he says well try to even get to it.. what a jerk.. so then he says to her you might have a little paralisis in your left side, i looked at him and said you better tell her the real truth and im not kidding.. so then he said ok well your left arm and left leg and left side of your face would be paralized if you make it off the table and are not in a coma for the rest of your life..DA! why didnt he just say that off get go.. insted of filling her head with bullcrap.. now he also made many mistakes while talking changing the sub and then back tracking to refraze what he said..he took this to a panel of 20 some one brain surgeons that are the top here and they said no along time ago what makes him think he can do this now after it has grown so darn big???? So anyways i said to him speak up and tell us im tierd of the run around and i want to know NOW!!!!!! How much time do we have if she goes on like this.. he said with in 5 months she will get a lot worse and deteriate fast and within a year that would be it.. he kept trying to side track us and change the sub to doing surgery.. I am truly at wits end he would roll his eyes and blow off any questions we had and kept saying how hes never lost a patient or had one come out paralized or anything.. i think hes full of it as cassie dont understand we do fill out those flunky a$$ papers that say the docs are not resposable for killing or screwing up your life during surgery...I WANT MY KID TO LIVE!!!!!!!! but how is cassie gona feel if she makes it thru this and is paralized,, people gona look at her funny she wont go to school and her friends wont want to be around her and she wont look the same... her eyes are already going, twitching bad and shes lost a lot of control of her left arm and leg, even tough she still uses them.. we are talking everything back to the surgeon who did her the first time as we feel very comfortable with him and he has seen what hes up against and tell him everything this other doc has said and done and get his opinion.. sorry this is so long but i wanted you all to know.. if theres anything you wana say about this PLEASE DO!!!!!!!! I have till monday to come up with our decision... [img]modules/Forum/images/smiles/icon_frown.gif[/img] [img]modules/Forum/images/smiles/icon_frown.gif[/img]

_________________
Me,,Wake Up,, Do What, See Who, Go Where, I DONT THINK SO!! Get Lost! If You Dont, Tank Will Make Sure You Do!!!

morti · #2 (**permalink**) 02-06-2003, 09:42 PM

My personal oppinion is not of much value, but here it is anyway:

Life is a very precious thing... if there is any chance that surgery could save Cassie's life, that is the route I would go with. I do understand that it would not be a good thing if she were paralyzed because of this operation, however I personally think it worth the risk.

We know that she doesn't have long if the surgery is not preformed, so it is almost a "nothing to loose" situation.

You and Cassie are still in my thoughts and prayers.

-Morti.
[addsig]

deadboy · #3 (**permalink**) 02-06-2003, 10:18 PM

i agree with morti, life is a very precious thing and even if i were to be paralized iw ould still want to live. What does Cassie want? If she doesnt care if she is paralized or not, i would go through with the surgery. I think that seeing here paralized wold be a lot better because you would not see her suffer for the next year. they say she will live if the sugery is performed so i personally would go through with it. but the decision is yours and Cassie's, BWW. even if it doesnt mean much to you, this is my opinion. The man upstairs, or whoever contorls out lives would not let this surgery be possible if he or she did not want Cassie to live.
[addsig]

schatzie001 · #4 (**permalink**) 02-06-2003, 10:32 PM

BWW, hang tough for us babe, and good for you for shaking that !$@^$#^ doctor down and making him tell you the deal.

I agree with the above 2 posters...Life is precious, and you are really facing a tough decision. Paralysis can be hard, but there are so many new technologies out there today that it isn't the same 10 or 20 years ago. Cassie can still have a very fulfilling life if she makes it through the surgery.

If there is a chance that her life can continue, take it.
[addsig]

BadKarma · #5 (**permalink**) 02-06-2003, 10:34 PM

Personally I wouldn't do anything without another opinion. One I trusted. I for one am going to add a little gloom but it is my opinion. (remember I don't have kids and am not in your situation) I personally have a right to die will. Basically it says if I'm in a coma for more than 2 years or brain dead or paralized from the neck down pull the plug. I can't personally live like that. If I can't race cars, jump out of airplanes or do all the other stuff I love I have no reason to be here. I know it's the darkside of things but it is my view. Of course it is my choice and likewise should be cassie's. Just my opinnion of course. Take it as you will. I wish you all the best whatever you decide. JD [img]modules/Forum/images/smiles/icon_cool.gif[/img]
[addsig]

Blackwidow_woman · #6 (**permalink**) 02-06-2003, 10:55 PM

[img]modules/Forum/images/smiles/icon_frown.gif[/img] I am more than willing to do anything for her but this is the deal even if they can get a small part of the tumor she will still be only havin a short life as he did say it will grow right back and could grow at a faster rate.. my concern is not only maybe losing her on the table or that she could be paralized but how much time extra will that give us with her??? they canot touch what is already wraped around and in the brain stem so that part is a no can do but they are out to take what has grown up into the one side of her brain..thats what will paralize her.. you see i went thru this once befour she died on the table and wouldnt wake up in recovery, that was the most devistating thing i have ever had to go thru when she did wake up they had probs with her heart,, then they gave her morphine which she was allergic to that made her heart do that.. its so scarry i wouldnt wish this on anyone ever.. so if she has surgery and say she makes it out of the hospital the prob is how fast is this gona regrow and how long will we have after.. how many times do they actully think they can reopen her and keep doing what they did...to prolong life.. [img]modules/Forum/images/smiles/icon_frown.gif[/img] Im just a mom whos trying to deal the best i can.. [img]modules/Forum/images/smiles/icon_cry.gif[/img] cassie wants surgery.. her dad and i are having a real tuff time with this on that call.. but i do wana say one thing... Lori if this comes down to surgery would you like to be there with us if you could??? I would really like you to be there...
[addsig]

XzyluM · #7 (**permalink**) 02-06-2003, 11:21 PM

For my opinion, I agree with Morti. If there is even a small chance that Cassie could live, I would go that way. Miracles do happen. Even though there is a lot of risks involved from the way I see it, it could make a difference that Cassie lives and get to enjoy live. The decision is still up to the three of you, but ya'll are still in my prayers.
[addsig]

Stormyva · #8 (**permalink**) 02-07-2003, 03:00 AM

Everyone seems to be in agreement.... life is precious and you ought to do everything you can to help your daughter. Now what I am about to add to that opinion is not going to help youe decision at all. My mother has end stage emphysema, immune deficiencies, diabetes, and a long list of other related ailments brougt on by the illnesses and the cocktail of drugs that she takes daily. There have been a lot of decisions made by her and my dad that could extend her time with us but not the quality of life. They have opted to take the route that is going to provide her with the most comfortable and "normal" way of life. Whatever decisions that the three of you make need to take into consideration that quality of life! Partial paralysis can be adapted to and she can still lead a somewhat normal life... but constant pain and suffering is something totally different.
Our thoughts and best wishes are with you through this tough time in your life! I wish we could do more for you!
[addsig]

herpkingdom · #9 (**permalink**) 02-07-2003, 03:26 AM

I have never chatted with BWW and she doesn't know me from jack.
I haven't posted anything in any of the threads about your situation, due to my inability to find the words. But now I feel I can.
You are faced with a decision that we never in our lives want to face.

I have 5 sons, 2 of which just became teenagers. I know I would not be able to function in any capacity if this were happening to me. I find it amazing that you are able to do what you are doing. I would be totally lost and unable to function.

Now to the decision......

Without the surgery you do not know exactly how long she will be with you.
With the surgery, there is the possibility of partial paralysis (spell check), and not guarantee of if and how fast the tumor will grow back. Also, the surgery is only to remove a part of it, not the part that is wrapped around the brain stem. Now we come to how long will her live be extended with the surgery.

Now you have to take into consieration that the tomur os still going to be on the brain stem so the prognosis is basically still the same. The surgery will most likely extend her life, but she is going to be put through everything all over again.

The question is, is it worth the risk of surgery to spend some more time with your daughter. Even if it is only a few more months I feel it is worth the risk of partial paralysis (spell check).

You will never have enough time to say goodbye. And as hard as it is to hear, this is what you have to do. And I would want to put that off as long as possible.

Darn this is hard.

As a father of 5 young sons, I would try to get as much time as I could to spend with them that I could. The surgery will give you some more precious time to spend with her. In any capacity, the time spent will be worth the risk. It really won't matter if she is in a wheel chair, will it? You will still love her anyway. And it will not matter that she is in a wheel chair.

I have to call my kids now.

Good luck and the decision you make is the right one, no matter which one it is.

_________________
Jim Dixon
Herp Kingdom
www.herpkingdom.com
Where Our Herps Live Like Kings

savannah_babe · #10 (**permalink**) 02-07-2003, 04:58 AM

well, none of us can tell you the right, and wrong decision. my heart goes out to you and your family, and if i could give cassie the world i would. i feel that the decision is up to you. if it were me, i would go every route to keep my daughter alive. (if it didnt involve coma). my daughter and i are so close i dont know what i would do. i know you are having it hard right now, and i send my deepest regurads. if paralyzation is what to come of it, i say so what. she can still live, and love for that matter. granted i know its easier said than done, and if i were in your shoes, i would have lost my mind by now. the choice is yours, but you have to let cassie know that she is loved. i hope all goes well, again, my deepes reguards-

kelly
[addsig]

faze · #11 (**permalink**) 02-07-2003, 05:14 AM

i have to agree with eveyrone else here on this matter theres always that chance and yes miracles do happen
i would deffinately find out what the chances of her pullin through the surgery would be
and the ammount of time it will give her
if the chances of her pullin through the surgery are pretty good then i'd go for it
because even if she does come back out of the room semi paralized you gotta figure that was coming even if you didnt do the surgery (goin on what you said bout it already affecting her mobility)
......but the true choice isnt up to you or her father ...in reality its her choice in the end that matters....

good luck hun im thinkin of you and cassie
[addsig]

Blackwidow_woman · #12 (**permalink**) 02-07-2003, 08:33 AM

[img]modules/Forum/images/smiles/icon_frown.gif[/img] Thanks everyone and yes if she wants surgery and it will give me more time with her yes we will do it but they can not say to us if she will die on the table or be in a coma no doctor with tell you oh geez i forgot to mention she wouldnt make it... we are still gona go and get a opinion from the one surgeon who was in there the first time.. and as for how soon they will do all this is a matter of with in 2 to 3 weeks.. some how or another i dont know how im dealing with this but something keeps me going and its the look on her face i see everyday... what i see is myself looking back at me... i lost 5 of my family members within a 2 yr. period, most to diffrent forms of cancer.. staying strong yeah i dont know how im doing it... but something keeps pushing me on never to give up never to stop looking for away out... I wish you all could be there not for me but for her..anyways il keep you posted and let you know whats going on the nest few days to weeks.. as for now she wants to go to the boat show with her boyfriend so thats where we are going next week... her boyfriend is staying by her side and has been thru all of this with her since day one, he says no matter what he will always be with her.. Now that is heart renching and hes a very suportive to her .. i think this helps her a lot as shes always talking to him and he spends all his time with her..now that makes her happy and in turn makes me happy...even tough there young teens, i cant take that away from her.. what is a hero,, well Cassie is shes living proof of that in my eyes... BWW

_________________
Me,,Wake Up,, Do What, See Who, Go Where, I DONT THINK SO!! Get Lost! If You Dont, Tank Will Make Sure You Do!!!

savannah_babe · #13 (**permalink**) 02-07-2003, 03:38 PM

<----faze
even though they cant tell you if shes gonna die on the table or not there should be absolutely no reason why they cant give you figures i mean say they tell you that if she does do the surgery she has a 2% chance to make it back off the table do you think you OR her would go through with it still???? the numbers matter hun thats whats gonna make yours and her decision on what to do
if you dont think the numbers the doctor are giving you are good enough also then its time to search out a new doctor
[addsig]

nomadbean · #14 (**permalink**) 02-07-2003, 05:38 PM

I know I may not have had a lot to say on this subject, and that is only because I have not known what to say, but having read this now 5 times, I feel I must put in my 2 cents. If the doctor is giving you a bad vibe and you feel like he is hiding something from you, GET A SECOND OPINION. This is a very serious operation they are talking about and if you do not trust him, this will turn into an even more stressful situation than it already is. You should have EVERY faith that your doctor is being completely honest with you and telling you the chances and every possible outcome there is, that he knows about. Then, even if what he/she tells you is not what you want to hear, but you believe them, then the decision will at least be a more knowledgable one.
What would I do in this situation, I have no idea, I mean it, not the first clue. You seem like you are much more put together than most dealing with these issues, and on that I commend you. I would sit down with the whole family and talk about what you feel surgery vs. not and see what Cassie wants to do. If the surgery cannot completely take out the tumor, what is the outcome you are hoping for, will she be in much pain afterwards, if the decision is still undecided then give Cassie the final vote. If I am remembering correctly she is an early teenager, so she can have a solid opinion on the matter that is not based on fear, but fact. Will she, and you still be scared, absolutely, but at least for the rest of your life, you don't regret doing something she did not want.
My thoughts are with you and your family. She seems like a very smart and good girl who when the time comes will know what she wants to do. I know it seems hard, but you will have to let go of being Mommy for a bit and talk to her as an adult, and no matter what she wants to do (if her reasons are valid), support her in it. I know that whatever you guys decide to do it will be the best decision you caould make at the time, and do not look back at what ifs and I should haves, they will drive you insane, and ruin your family.
I hope I helped some in my long tirade here, but I was a counselor for a long time and I have seen these kinds of things rip a family apart, and this is the advice I would give any patient or friend in the same situation. This is nobody's fault and you can and will deal with it as a family and come out stronger in the end. Keep us updated, and know that you have our love.
Trina
[addsig]

dlamphere · #15 (**permalink**) 02-07-2003, 07:20 PM

I just wanted to let you know we are all thinking about you. We were haveing some hard times here at work and I started reading them your updates. Now everyone is asking about you and how you are doing. Everyone elses problems seem to just melt away so they can send there love your way. I have never met you, but I really hope I get that chance. More love and support your way......
[addsig]

herm · #16 (**permalink**) 02-07-2003, 07:37 PM

Our prayers are with you. How does one make these kind of decision? But I think it really is up to Cassie. She needs to be given all the facts so she can make an informed decision. You also need to be part of the process, but in the end you should follow her wishes. You should support her in any decision she makes, which I know you will. If it were me, based on the information that you have given in this post (I won't pretend I know all the facts) if being paralyzed is the price to pay to live, I would choose life, so long as my mind was in tact. But if I was going to be in a vegetative state, then I would live what time I have left to the fullest, and forego the surgery.
[addsig]

Blackwidow_woman · #17 (**permalink**) 02-07-2003, 09:48 PM

[img]modules/Forum/images/smiles/icon_cool.gif[/img] well we just got back from Cassies regular doc and he said to us that we have every right to consult with doctor Foody the one who did cassies first surgery and Dr Foody also sent us a letter that kinda took me by surprise that he wanted to see cassie and her MRIs that was just taken.. he has stayed right with us on this since she had the first surgery.. Now her regular doc..DR.Herring said that we should go with the one we trust and feel comfortable with the most that being Dr. Foody.. Anyways she will be seeing him next week sometime and we go from there if he says he will not or dont think he can do the job then we are left with AnnArbor University of Michigan docs.. we have never kept anything from Cassie and she knows the cold hard facts. Her doctor sees her on a regular basis so he can talk to her about how she feels and what shes thinking about and what she wants to do.. I dont treat her as a child she gets treated as a adult.. DR, Herring said no matter what we do or how we do it he will suport us all the way..now tonight we will sit down and ask cassie one more time what do you want to do and how do you want to go about it.. also she will be talking to doctor Foody.. so this is where we stand now..If she has surgery it will be within the next 2 or so weeks.. If Dr. Foody does it he will have her in right away at Devos Childrens Hospital of Grand Rapids.. this is all i can tell ya for now till monday night when i here from the AnnArbor University of Mich.. Thanks everyone for being there it really means a lot to all of us here and to Cassie.. BWW Tracey

P.S. being able to come here and talk to everyone of you has helped!!!!!
______________________________________________________________________________
Me,,Wake Up,, Do What, See Who, Go Where, I DONT THINK SO!! Get Lost! If You Dont, Tank Will Make Sure You Do!!!

Karen · #18 (**permalink**) 02-08-2003, 09:47 AM

I don't have children so I can't say I understand what you're going through. If it was me or a loved one I would much rather have short fun filled life than a long miserable life. Either decision is hard to make, I'll definately be praying for ya'll.

Karen
[addsig]

bensnacks · #19 (**permalink**) 02-08-2003, 11:29 AM

I don't have children Black W. I cannot possibly even begin to think
what you might be going through.

What are Cassies feelings??
You've given her the hard and fast from what I understand,
Is she leaving the decision completely up to you??

I feel so totally out of my depth giving even the slightest opinion.

When it comes to it however I'm not sure there is a right or wrong
decision here.
Whatever choice you make you will be making it together and therefore
it will be the right one.

The doctors probably can't give you a deffinite answer because they
simply can't know how successful surgery will be.
Miracle's happen on the table as do tradgedies.

Whichever path you choose I'm sure Cassies life can still be a full and wonderful
experience, for you both.
I'm so sorry for your past losses,
Ben

[addsig]

Blackwidow_woman · #20 (**permalink**) 02-11-2003, 06:20 PM

[img]modules/Forum/images/smiles/icon_frown.gif[/img] Update on Cassie.. well the doctor that cassie is supose to go get another opinion from is out of town till the 19th of this month so now we have to wait till the 20th for her to see him.. so it looks like any plans we have for her on what we are gona do is put off till then.. mean while she has been home from school with real bad headaches from the pressure of the tumor pressing against her brain and skull.. shes on heavy meds.. we went and talked to the school to see what they are gona do for her as far as making sure she dont get hurt, hit in the head.. so anyways just letting you know things are on hold till the 20th.. why these people keep dragging things out is just taking time away from her... [img]modules/Forum/images/smiles/icon_cool.gif[/img]
[addsig]

Advertisement