Daughter is now in Chemo... any advice? - Page 6 - Ford Bronco Forum
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post #101 of 335 (permalink) Old 05-18-2006, 07:54 PM
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I just read though the thread and as well sorry to hear about your daughter. I will add your daughter and your family to my families prayers as well. I know a little of your pain. One of my twins was born with downs syndrome and has been back to hospital several times in his short 18mths on this earth with breathing problems. it is so hard to see your children in that place and know all you can do is hold thier hand and pray. I hope all goes well and she gets better. keep spirits up for your daughters sake and your sanity
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post #102 of 335 (permalink) Old 05-19-2006, 06:20 AM
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post #103 of 335 (permalink) Old 05-19-2006, 06:20 AM
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it's 5 am here, as i read your story i try to think of advice or wisdom to share that may be enlightening or helpful. i am probably going to ramble all around but here goes. the most important thing is you have to remain a close family to get thru this. don't let money or bills or anything else take more importance than your wife and kids. we went thru this for 6 1/2 years, no money, tons of bills, always at the hospital, missing holidays, worried about this, worried about that.

hope you get SSI, we did. just keep track of where it goes. they may ask. we also got medic-aid. saved our ass on a bone marrow transplant. but don't stop with just these. your social worker should know of other local agencies that can help. here we had The Child Cancer Fund, CMS and other groups like The Tom Coughlin "JAY" Fund . these organizations usually help in all kind of ways. our washing machine broke and we were provided one by one of these agencies. some groups may help with rent sometimes if you get behind. let them help at Christmas, they usually provide for all your children. DON'T BE ASHAMED TO ASK FOR HELP, YOU ARE GOING TO NEED IT. AND ITS AVAILABLE. (after the bone marrow transplant they told use we had to get rid of all our furniture and old carpeting in our apartment, we told our complex manager and while we were stilling living at the hospital (43 days) they installed new carpet and pad, no questions asked.)

don't worry about stuff like hair. my daughter(Jessica) was more beautiful bald than any other child in the whole entire world. and don't worry about looks and stares from all the ignorant and inconsiderate people. i would get mad sometimes and make a scene but all it does is make you daughter more self conscience. i did threaten two boys at a mcdonalds one time. but they needed it.

let them be kids. seems like you and your wife are doing a good job of this. keep up the little parties and holidays. it helps you as much as it helps them.

anyway, i can't fit everything i've experienced in one post. and i am not sure of your daughter's prognosis. but cherish your children. i do. i have two daughters, one i cherish every moment i spend with, the other i miss every second of every day.

i haven't prayed since Jessica left on Oct. 6th, 2000. but i think i will tonight.
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post #104 of 335 (permalink) Old 05-19-2006, 01:29 PM
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I was with my uncle when he went through a chemotherapy and two bone marrow transplants 6 years ago this summer. For him it was a very sudden and dramatic change of pace from a guy who was going from before sun-up to past sun down to slow down to almost a crawl.

The American Cancer Society (I think) has a "hope house" in atlanta that is free to stay in for out of town people while receiving treatments. This was a great benefit for him and his family since they live 2.5 hours away in a rural area and we live a solid hour drive away from the hospital. But might be an option for you if you need some help for a place to live. There were complete facilities with laundry & kitchen in a communal area and restricted areas for those with severly compromised immune systems. He was weak and had a very fickle appetite and some things he had loved his entire life the smell or sight of them made him nauseous, other things he would eat as much as you put infront of him, mainly bland mushy food, He loved jello w/ frozen cool whip on top, the drugs induced diabeties, so while on high doses (80-140mg/day) of prednisone he had to take insulin shots and the cool whip was low enough sugar that he could eat it instead of ice cream.

He is doing acceptably well now with the major lasting effect being, dryness of the eyes from a drug interaction, and general lack of stamina.

Keep with you or on your daughter at all times a list of what medications, doses & start/stop dates. This will be vitally important if you have an emergency and see someone that doesn't know the history of your daughter. It will also make it far more convenient when the nurse asks you what meications is your daughter on? at each office visit. When medications are changed go home and do research on the drugs and the interactions on the web.

I'll be praying for you and your family.
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post #105 of 335 (permalink) Old 05-19-2006, 02:44 PM
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You will most definately be in my prayers, and if theres anything I can do Ill be happy to help when I come back from BCT in Aug just shoot a PM my way and Ill do what I can

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post #106 of 335 (permalink) Old 05-26-2006, 11:29 PM
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I spent the last 1/2 hour going over your journal. I can't even begin to comprehend what you must be going through. I have two daughters of my own (4 and just about 2) and I don't know what I would do if anything were to happen to them.

I know I'm in North Dakota, but if there is anything that I can help with let me know. Your family is in my thoughts and prayers--not a good situation but a good time to start doing that again.
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post #107 of 335 (permalink) Old 05-28-2006, 10:25 PM Thread Starter
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Quote:
Originally Posted by stucknjax
it's 5 am here, as i read your story i try to think of advice or wisdom to share that may be enlightening or helpful. i am probably going to ramble all around but here goes. the most important thing is you have to remain a close family to get thru this. don't let money or bills or anything else take more importance than your wife and kids. we went thru this for 6 1/2 years, no money, tons of bills, always at the hospital, missing holidays, worried about this, worried about that.

hope you get SSI, we did. just keep track of where it goes. they may ask. we also got medic-aid. saved our ass on a bone marrow transplant. but don't stop with just these. your social worker should know of other local agencies that can help. here we had The Child Cancer Fund, CMS and other groups like The Tom Coughlin "JAY" Fund . these organizations usually help in all kind of ways. our washing machine broke and we were provided one by one of these agencies. some groups may help with rent sometimes if you get behind. let them help at Christmas, they usually provide for all your children. DON'T BE ASHAMED TO ASK FOR HELP, YOU ARE GOING TO NEED IT. AND ITS AVAILABLE. (after the bone marrow transplant they told use we had to get rid of all our furniture and old carpeting in our apartment, we told our complex manager and while we were stilling living at the hospital (43 days) they installed new carpet and pad, no questions asked.)

don't worry about stuff like hair. my daughter(Jessica) was more beautiful bald than any other child in the whole entire world. and don't worry about looks and stares from all the ignorant and inconsiderate people. i would get mad sometimes and make a scene but all it does is make you daughter more self conscience. i did threaten two boys at a McDonald's one time. but they needed it.

let them be kids. seems like you and your wife are doing a good job of this. keep up the little parties and holidays. it helps you as much as it helps them.

anyway, i can't fit everything I've experienced in one post. and i am not sure of your daughter's prognosis. but cherish your children. i do. i have two daughters, one i cherish every moment i spend with, the other i miss every second of every day.

i haven't prayed since Jessica left on Oct. 6th, 2000. but i think i will tonight.
This post has touched me more than any other reply yet. I thank you for your words of advice and I will add you and yours (all) to my prayers.

Thank you.

Unfortunately this isn't a cancer and our resources for help have been really limited. There is something here called the "Community Assistance League". They took over when Easter Seals pulled out of the area. They were able to give us some $$ to help with gas and lodgings.

Quote:
Originally Posted by BJS
Keep with you or on your daughter at all times a list of what medications, doses & start/stop dates. This will be vitally important if you have an emergency and see someone that doesn't know the history of your daughter. It will also make it far more convenient when the nurse asks you what medications is your daughter on? at each office visit. When medications are changed go home and do research on the drugs and the interactions on the web.
We have kept all records and drug prescriptions listed in a binder we got from the pediatric oncology ward at Doernbechers. It is good advice cause we had to tell the emergency room here what to do when Loran had a 102 fever and we had to take her in. Thank you

We got back from Portland late last night. She spent all day being scanned. Her skeletal survey (x-rays) came back showing no improvement. The tumors are not any smaller. Good news is they aren't any bigger. The MRI took over three hours. They scanned her head and entire spine. I went in with her for her sedation. The first drug they gave her made her loopy as hell. She was a riot. The second drug knocked her out and it was creepy. I didn't like seein her go out like that. i started cryin when they were strappin her to the table and she wasn't even responding. Just layed there with her eyes rolled up in her head like a sack of meat. That was truly heart wrenching for me. I had to stop in the hall and get control of myself before facing my wife and 4 year old. I knew my wife would flip if she saw me like that. The results of the MRI didn't come in that night. We were at the clinic till almost 6pm. We prolly won't hear about them till Tues. The Doc said to be optimistic cause the MRI will show a much better pic and we could still see some progress.

So she will continue the combo of Chemo and Prednisone for 6 more weeks then another trip to Portland to be re-scanned. She seems to be in really good spirits and has not been complaining of any of the "boo-boos" she had before (back and leg). We had weaned her off the Prednisone and her appetite had gone down. She'll be eatin like a lil' piggy again when she starts that up.

Thank you all for the responses. I will keep everyone updated.

Joe

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post #108 of 335 (permalink) Old 05-29-2006, 12:05 AM
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Quote:
Originally Posted by Joes93Bronco
This post has touched me more than any other reply yet. I thank you for your words of advice and I will add you and yours (all) to my prayers.

Thank you.

Unfortunately this isn't a cancer and our resources for help have been really limited. There is something here called the "Community Assistance League". They took over when Easter Seals pulled out of the area. They were able to give us some $$ to help with gas and lodgings.



We have kept all records and drug prescriptions listed in a binder we got from the pediatric oncology ward at Doernbechers. It is good advice cause we had to tell the emergency room here what to do when Loran had a 102 fever and we had to take her in. Thank you

We got back from Portland late last night. She spent all day being scanned. Her skeletal survey (x-rays) came back showing no improvement. The tumors are not any smaller. Good news is they aren't any bigger. The MRI took over three hours. They scanned her head and entire spine. I went in with her for her sedation. The first drug they gave her made her loopy as hell. She was a riot. The second drug knocked her out and it was creepy. I didn't like seein her go out like that. i started cryin when they were strappin her to the table and she wasn't even responding. Just layed there with her eyes rolled up in her head like a sack of meat. That was truly heart wrenching for me. I had to stop in the hall and get control of myself before facing my wife and 4 year old. I knew my wife would flip if she saw me like that. The results of the MRI didn't come in that night. We were at the clinic till almost 6pm. We prolly won't hear about them till Tues. The Doc said to be optimistic cause the MRI will show a much better pic and we could still see some progress.

So she will continue the combo of Chemo and Prednisone for 6 more weeks then another trip to Portland to be re-scanned. She seems to be in really good spirits and has not been complaining of any of the "boo-boos" she had before (back and leg). We had weaned her off the Prednisone and her appetite had gone down. She'll be eatin like a lil' piggy again when she starts that up.

Thank you all for the responses. I will keep everyone updated.

Joe
Hey Joe,

so it sounds like ok news so far. I know you want to hear the tumors are going going gone, so hopefully they respond. Next time up let me know, maybe we can meet up.

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post #109 of 335 (permalink) Old 06-07-2006, 10:50 AM
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Hey, I hope everything works out for you and your daughter. I have 2 daughters myself and I know the feeling you get when something is not right.
I have found loads of good info on these health forums. You might want to check it out. http://www.healthboards.com/boards/index.php keep in mind doctors want to make money. knowledge is power. Take care
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post #110 of 335 (permalink) Old 06-07-2006, 11:12 PM Thread Starter
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Loran is doin fine.......no changes......but still I got some bad news. I got a letter in the mail just after we got back from Portland. To save money, my company has decided to discontinue insurance coverage for employees on any type of extended leave.

So as all who are "in the know", know, that means me. My health insurance will officially be canceled as of June 30th.

F*ck you very much.

We may lose all Oregon based health care, have to interrupt her treatment while we switch to some damn Kalifornia hospital/doctor, and only be able to goto someone Medi-Cal "approves" of, not necessarily the best.

Again, F*ck you very much.

What the hell do i do now? My wife had a mini nervous breakdown with that letter in her hand. i aint been around here much either. havent found the words to express myself. dammit. i wish it would just stop rainin shit on me and mine.

I go tomorrow for a diagnostic joint injection in my hip. maybe my knee too. dunno. supposed to hurt like hell, leaves ya all bruised up, cant walk, hurts to pee, cant get a stiffy, that kinda crap. might be couchin it for awhile again.

life sucks. how you guys doin?

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post #111 of 335 (permalink) Old 06-07-2006, 11:15 PM Thread Starter
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On a good note, my son Logan will be here from Ohio on Sat. for summer vacation.

i prolly wont even be able to walk.

it will be good to have us all together tho.

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post #112 of 335 (permalink) Old 06-07-2006, 11:34 PM
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Originally Posted by Joes93Bronco
So as all who are "in the know", know, that means me. My health insurance will officially be canceled as of June 30th.
*sigh* (((hugs))) Wish I could do something, I know some of the "need insurance" frustrations with my own problems and now the accident, but I can't imagine the stress you're under with a family on your mind and your little girl.


Hang in there. It'll get better.

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post #113 of 335 (permalink) Old 06-08-2006, 12:57 AM Thread Starter
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hugs is enough. thank you Mels.

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post #114 of 335 (permalink) Old 06-08-2006, 01:05 AM
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Joe,

One thing you have to do is to try and be there for you and yours. I tend to be a worrier. So right now you need to be the one to not worry about things you can't control and be positive. Talk with your wife about this too. Does no one any good to worry about things that are not of your control. Easy to say, I know, but it is an "attitude" you can work on, won't happen overnight. And you never know....haven't you been in a situation before worrying your ass off, knowing it's pointless to do so, and things eventually work themselves out for the better. And you wished you hadn't spent so much time worrying....better spent on time with your kids, and trying to work on things you can control.

I am sorry to hear about more bad news though dude. Just hang in there, and be positive. That "staying positive" has an affect on those around you. I will be doing that for you too.

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post #115 of 335 (permalink) Old 06-08-2006, 01:13 AM Thread Starter
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Yeah i'm the positive one for her. i come here and vent and to let you guys help hold me up. I have been in those sit-u-wa-mations, but back when i was on my own.....................not with my young'uns involved.

Thanx Mark

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post #116 of 335 (permalink) Old 06-08-2006, 07:25 PM
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Joe, you should beable to talk to a lawyer about them saying they are going to cancel your insurance. I don tknow about Cali, but in Washington it's illegal to discriminate against an employee because s/he is on disability. It can get them in ALOT of trouble up here...

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post #117 of 335 (permalink) Old 06-08-2006, 10:12 PM Thread Starter
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Joe, you should beable to talk to a lawyer about them saying they are going to cancel your insurance. I don tknow about Cali, but in Washington it's illegal to discriminate against an employee because s/he is on disability. It can get them in ALOT of trouble up here...
They got around that by instituting a company wide policy that says any and all employees on any and all kinds of extended or indefinite leave. they say it is to lower costs of health insurance for "active" employees. so it aint targeted against folks on disability or workers comp claims, therefore it isnt discriminatory (sp?)

i just got home from Eureka from gettin my shot in my butt. it was in the "SACRO-ILIAC JOINT" if any one wants to look it up. the doc that did the injection put some dye in along with the drugs and it kinda shows the cocktail goin all over the place. not just in the joint. so it looks like the joint is all blown out. wunder-bar. in about 3-7 days i should start gettin some relief. hope so. i wouldnt even know what livin without pain is. now i hope my next doc appt with the QME doc on the 28th will get the ball rollin on my ankle.

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post #118 of 335 (permalink) Old 06-13-2006, 02:01 AM Thread Starter
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applied for Medi-cal today. things dont look good on the "keepin the Oregon doctors" front.

dammit.

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post #119 of 335 (permalink) Old 06-20-2006, 03:26 AM
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wow i just read the whole story. im truely sorry bro. i feel for you big time. i seen an address way back in the thread to send stuff to. can i still send something there/? keep your head up
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wow i just read the whole story. im truely sorry bro. i feel for you big time. i seen an address way back in the thread to send stuff to. can i still send something there/? keep your head up
That address was where we were stayin in Portland. If you are really interested you can pm me and we'll see about gettin an addy for ya.

Thanx for readin all this. It means alot to hear from y'all.

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