[wisewoman]

My 16, 17 in 3 weeks friend, our friends child and my youngest's best friend was air lifted to a large children's hospital on weds. She was hemmoraging from intestines somewhere. The bleeding has stopped and they gave her cheomo on thurs for the lymphoma. They also found more tumors. This time on liver. They are going to try to do endoscopy and colonoscopy to see what cause of bleeding was. Her last chemo was supposed to be this coming weds. She has been begging to come home. I am feeling like they just keepm patching one thing and another happens. I am feeling like at what point does she get to say to hell with it and come home to her bed and her farm? Will she be stabalized enough to have a good time before it re-occurs or something else happens. Should she just be coming home now and living her life? She has one of those ports into her neck for nutrition that sometimes anorexic people get. Her dad came home friday afternoon and spoke with me very briefly. He called last night and also spoke briefly. I made it clear that I wanted to speak with him more and he has been away all day today. I heard him say 7 weeks ago that he didn't want her suffering to be for nothing. Well, I am wondering if that is what we are doing. At what point is enough enough? Is there a chance she will stabalize? What do I say to my kids? What do I say to myself? I woke up with a very sore back yesterday and I think it's stress. Muscle spasms. Ran out of percoset and can't get on weekends unless I go to the E.R. and everyone here seems to like that idea as much as I do. So I am taking 800 milligrams of advil every 8 hours and 1000 mg of tylenol every 6 hours. A little flexeril for good measure but it ain't enough. Though it does make me sleepy as heck. So I don't know what I need. I don't know what anyone can do, there is nothing. We can love her and her family, love us who are grieving, hurting for her and them and ourselves. How exactly do I stay sane? Hmm, that will be my greatest trial I am afraid. So I am a blabbering idiot. and everyones life goes on.

[SweetCrusader]

(((((((ww)))))) that is so sad!! it is so hard to watch someone you love struggle with cancer. i feel for you. is there any kind of hospice program in your area? some areas have a hospice program so that people can come home and be taken care of by nurses rather than having to keep going to the hospitals. they also provide some support services for family and friends sometimes, and educate loved ones on what to expect. ask around and see if there is anything like that, because they are pretty amazing programs sometimes.

about your back pain, i have some suggestions. i recently had an enormous kidney stone (11mm- normal is 2-4mm). it was really painful. and when they did lithotripsy, i was a MESS. they gave me 8mg of morphine and it didn't control my pain. that's how bad it was. when i got home, they had prescribed percoset and the percoset only took the edge off the pain, and left me terribly nauseated. luckily, my mom is a nurse. she took me off the percoset and had me take 3 ibuprofen and 1 tylenol (or 4 and 2 when i was REALLY hurting), and had me take it with a caffeinated beverage like a Coke (caffeine adds to the effects of pain meds). that worked better than the morphine or percoset did, and it doesn't cause nausea and it doesn't have addictive qualities. with the kidney stone, my back pain was TERRIBLE. i could hardly even walk the day i went into the emergency room, because of pain and nausea. i found that laying on the floor and putting my legs up (like on a couch or chair) helped. so did hot packs on the back, and really long, hot soacks in the tub. sometimes i had to soak several times a day.

i hope all this helps. (((((hugs)))) i will keep you and your young friend in my mind and heart, and pray for you both, and send you lots of good vibes ok?

Angela

[SS8282]

(((((((((((ww)))))))))))))))))) sorry to hear about your young friend. I had endoscopy before and it's not that bad. Then, I didnt have cancer and all the yucky stuff that came with it.

I do understand the frustration, the pain of everyone close to her. Don't remember if I told you this before but my uncle had cancer. It was too late for the docs to do anything, so they sent him home - with O2 tank and everything. It was hard on him and for the rest of us - we just kept praying and making him comfy and all. My cousin - though she was very smart - took a 3 yrs BA instead of the harder 4 yr. Her dad wanted to see her graduate, so she took the quickest route.

Everyone was hurting for him, especially grandma, but the one who was hurting the most was him. He lived 2 yrs longer than predicted.

He was suffering so much. The last time he went to the hospital, there was a family meeting. It wasn't fair to keep him alive and suffering, so decided to pull the plugs, and let him go. Was the hardest decision ever made.

Grandma didn't go to the funeral. Wasn't right.

There's still hope for the courageous, young lady. If they can find out the cause then they can fix it.

As for your back pain, becareful of advil, aspirin stuff like that. Taking too much NSAIDs was what gave me ulcer. Tylenol's best.

Well, I'll stop babbling.

You guys are in my thoughts and prayers.

[jbug]

I wish I knew what to say. I do kind of know what you are going through. My "second mom" has bone cancer and they keep thinking chemo will help but it seems to be doing more harm than good. Sammye is such a trooper and won't let you know if she's in pain but you know she is. I guess the only thing you can do is pray for her.

As for your back I agree that taking NSAID's too much can be harmful. I'd try aleve 2 2x's a day. But that's just me. I could totally relate to the kidney stone part. I had to drive myself to the ER with mine and I wasn't sure I was gonna make it and the hospital is about 5 miles from my apartment. I was glad to get the darn thing out mine was 5mm and they had to blast the thing and put in a stint because the sucker went back up into the kidney instead of staying where it was.

Janniebug

[(JD)]

(((((wisewoman))))) this is so much you are trying to handle!

Having a spiritual base myself, I would suggest that you call in clergy. Not just for you, but for the teen who is dying. There is another realm and it's times like these that we simply MUST tap into it. Even if you have no church affiliation, there are chaplains in each hospital, and they often have words to say that help us on the way. good wishes.

[wisewoman]

SS, Sky, Sweet, Janniebug,

We are not yet ready for hospice, still trying to see what is going on and help. That actually is my question, for how long. I speant hours with dad today and he wanted to clean the house because she told him she is coming home and to clean house. I said you remember that I have done it and will do it when the time comes. He said that he needed it done now. So, back pain and all I vacuumed and mopped and dusted. The girls told me that they wanted to arrange her room with her stuff sent from the hospital and make signs if she comes home. Dad says when. She has had several endoscopy's, they put her out for them because of the tumors in throat and esphopogus. I hate the whole colonoscopy thing for her. Dad is being positive and so is kiddo. It rubbed off. So as much as it hurt I was happy to be cleaning and thinking of her. Sky, I deal with so much death and dying that I do know a wonderful clergy person who has helped me in the past and was there when my friend needed her when her mom died. She has been helpful. as far as the nsaids, the on call doc told me to take 800 mg every 8 hours and tylenol every 6. I am going to call doc in the morning to discuss it. My nurse friend who was dear and caring today when we spoke about kiddo reminded me to stretch. Hubby helped me stretch and I know that it helps. I was happy to be at her home making it alive. I felt for the first time in a while that it is possible for her to come home at least for a while. I saw in her dad's eyes his love and admiration for mom who is the best advocate and can keep up with 30 docs on kiddos team. She is amazing and has somehow stayed sane through all of this. I do so appreciate your caring and kindness. It means the world to me as I struggle with this stuff. I feel like a yo yo. Up and down. no clear knowing and just having to live through it and parent through it and work through it. (job). Please keep with me guys, it's too much.

[SeptemberMorn]

{{{{{{{{{{{{{{{{{WW}}}}}}}}}}}}}}}}}}}}} I may be speaking out of turn, Hun, but I get the feeling that you are taking on more than you should or can handle. Like I said, I may be wrong, but please take time for yourself. If you don't, there won't be enough of you to go around. How does "Simplify" sound to you? Is it possible?

As for how long, only God knows the answer to that. How lucid is the "kiddo"? Can she make that decision for herself? Has she expressed her wishes? Her parents need to take their cue from her, accept it then support her 100% in whatever she decides.

Hang in there. We're all here for you.

i second the med suggestion. i'm doing two motrin and two tylenol for the cancer patient...in his bones now..and he's sleeping through the night, before he was tossing and turning due to the pain. the patch makes him dose off while eating, talking, etc. so this was a nice alternative...good luck, pat

[SS8282]

Glad to hear kiddo is doing better. Please take care of yourself, and not over work. Big hugs. Hang in there. Thinking of you and kiddo. ((((((((((ww)))))))))))))))

[wisewoman]

Thanks SS, I am hoping things are calm. Fried has helped me see that it is in my understanding and accepting of what is happening that I can find comfort. Not fighting but feeling, accepting and dealing. It means great sadness. I have been running from the intense feelings I think. Well, lots of revalation in a few minutes huh?

[SS8282]

You're very welcome, ww. Sometimes when we're on fast forward we tend to just 'do' and not really sit and 'think' about things - put things in perspectives. I'm glad fried is helping you - he's a good friend.

Oh, also, sometimes it helps having an 'outside' person who can be objective.

((((((((((((((((((((((((((((((((ww)))))))))))))))))))))))))))))))))) love u

[SweetCrusader]

((((ww)))) i don't really have anything to say in particular at this point. i just wanted to let you know that i'm still reading your posts, and still caring! i'm here for you

Angela

I'm still hanging in here with you........I hope things look up soon. much love, pat

[Rapunzel]

{{{{{{{{{{{{{WW}}}}}}}}}}}}}}}}}

You've gotten a lot of good advice here. I just want you to know that I'm reading too and I feel for you and I'm sorry that I got so far behind again and didn't read this board for a while (it was because I got a job and have been busy).

My heart goes out to you and your friends (the girl and her family too). I do hope that you get some time for yourself when you need it.

Wendy

[(JD)]

We're all still here with you... I was wondering if YOU had talked with her about her wishes... I know I was the only one who talked with my dad about what he wanted for his funeral and all (of course it still got mixed up because no one in the family really listens to me) but it seemed a real comfort for him to talk with me about it... everyone else avoided it and it was on his mind alot.

[wisewoman]

I have not spoken with her. She is several hours away right now. Started bleeding again late last night and will be there for a while longer. No real news. She's not a happy camper and mom is starting to really have difficulty staying there 24-7 but she would not leave so there is little I can offer to help her. I would suspect at some point kiddo is just going to say she's had it and demand to go home. She's a tough cookie if she lives long enough to have that wish come true.