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.
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.
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.