Daughter is now in Chemo... any advice? - Page 7 - Ford Bronco Forum
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post #121 of 335 (permalink) Old 06-20-2006, 08:56 PM
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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?
Look into California Childrens Services... or CCS
They will pick up the tab on all medical procedures that your insurance won't cover, or if you get dropped. Both my husband and my youngest have a hereditary cancer that spreads like crazy and doesn't respond to chemo or radiation. They have both had surgery and are both doing well for the time being.
You will need some state funded program since any enrollment in any program will most likely be declined do to a pre existing condition. We have been turned down from many insurance companies.

I hope you guys get some good news soon.

Lisa
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post #122 of 335 (permalink) Old 06-23-2006, 02:37 AM
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Joe -

Really tore me up to read about your ordeal and see the pics of your little gal.

Did you check into Cal-COBRA? Depending on the slimy moves of your employer it may or may not apply, but its a possibility for keeping the Oregon docs.

KC
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post #123 of 335 (permalink) Old 07-20-2006, 01:34 AM Thread Starter
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We are headin back up to Portland on Sun. for another round of tests. This time it's a full body MRI on Mon. and then a full body bone scan on Tues. She finished her second round of six chemo injections 2 Fridays ago. Last Fri. she had off so we went campin. I'll upload some pics later. We went campin at an improved campground (usually I'm against that) that is across the Hwy from a lodge that has a swimmin pool cause Loran can't swim in rivers, lakes, streams, etc. cause of the live bacterias that are present. So we took a risk and went to camp up there on the off chance they might let herr swim there (she LOVES to swim). Unfortunately they had a BBQ goin on, the lodge was full up, there were bikers all over the place cause of some run in Grants Pass/Medford, so the manager said no. My sis-in-law brought up one of those lil' kiddie pools and we filled it up and put some bleach in it to sterilize the water. She loved it. So it wasnt a total loss. She still got to swim.

My best friend Mike who lives in Portland came down last Fri cause his mom died late Thurs night. The memorial service was today and I spent the whole day with him and his aunts, uncles, and sister. He is gonna stay with me the rest of the week and hitch back with us. Was a very sad sad day. On the up side his sister has a total Vida Guerra thing goin on. All over. I'm goin to hell for typin that I just know it.

So we will be back in Portland at least until Wed. possibly longer if things go south.

That's whats goin on.

Lata.

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post #124 of 335 (permalink) Old 07-20-2006, 01:35 AM Thread Starter
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Quote:
Originally Posted by kellyjcook
Joe -

Really tore me up to read about your ordeal and see the pics of your little gal.

Did you check into Cal-COBRA? Depending on the slimy moves of your employer it may or may not apply, but its a possibility for keeping the Oregon docs.

KC
Stuff is in the works. Gonna be about $900 a month to pay for it ourselves. They have screwed up the paperwork twice now so we havent even been able to sign up. Luckily they will retro all payments as long as we say yes by Aug. 30.

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post #125 of 335 (permalink) Old 07-20-2006, 03:25 PM
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Joe,
I am saddened to hear about the trying time you have had with your daughter, you and insurance...

Just out of curiosity, have you tried the shriners?

shriners childrens hospitals are some of the best in the world, and once accepted, your daughters medical will be fully covered,,,

find a mason,, or go to your local masonic lodge,, they can give you all the details about the hospital and criteria for application...

good luck.. Chem
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post #126 of 335 (permalink) Old 07-26-2006, 02:43 PM Thread Starter
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Good news!!!!!

New scans look great!!

We are at Ronald Mcdonald House and are gettin ready to leave. I will post more later when we get home, but I wanted you all to know that it is GREAT news!!!

HAHA!

Joe

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post #127 of 335 (permalink) Old 07-26-2006, 02:44 PM
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Quote:
Originally Posted by Joes93Bronco
Good news!!!!!

New scans look great!!

We are at Ronald Mcdonald House and are gettin ready to leave. I will post more later when we get home, but I wanted you all to know that it is GREAT news!!!

HAHA!

Joe
thats awesome to hear.

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post #128 of 335 (permalink) Old 07-26-2006, 02:47 PM
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Quote:
Originally Posted by Joes93Bronco
Good news!!!!!

New scans look great!!

We are at Ronald Mcdonald House and are gettin ready to leave. I will post more later when we get home, but I wanted you all to know that it is GREAT news!!!

HAHA!

Joe
After having such a shitty day its news like this that just makes it all better.

Bitchin' news man.

...thoughts arrive like butterflys...
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post #129 of 335 (permalink) Old 07-26-2006, 03:02 PM
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Quote:
Originally Posted by Joes93Bronco
Good news!!!!!

New scans look great!!

We are at Ronald Mcdonald House and are gettin ready to leave. I will post more later when we get home, but I wanted you all to know that it is GREAT news!!!

HAHA!

Joe
That's amazing news!!!!!! fill us all in on the details when you get a chance.
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post #130 of 335 (permalink) Old 07-29-2006, 11:25 AM
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Whats the word??

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post #131 of 335 (permalink) Old 07-29-2006, 11:56 AM
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Quote:
Originally Posted by Joes93Bronco
Good news!!!!!

New scans look great!!

We are at Ronald Mcdonald House and are gettin ready to leave. I will post more later when we get home, but I wanted you all to know that it is GREAT news!!!

HAHA!

Joe
Fantastic!! Details man, we need details!

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post #132 of 335 (permalink) Old 07-29-2006, 12:16 PM
 
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Cool Good News! Great News!

Quote:
Originally Posted by Joes93Bronco
Good news!!!!!

New scans look great!!

We are at Ronald Mcdonald House and are gettin ready to leave. I will post more later when we get home, but I wanted you all to know that it is GREAT news!!!

HAHA!

Joe
Heh Joes congrats on the news. This is the first of this thread that I've seen. I hate of all cancers to hear of a child and family going thru this.... I have stomach cancer and going thru the same emotional roller coaster. The VA Hospital in Roa.Va is doing a great job though. the last CT scan, MRI and blood test are showing going into remission. Staring to gain weight back and feeling better..... God Speed and our prayers are with ya. Good Luck HMR-RSQ.
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post #133 of 335 (permalink) Old 07-31-2006, 01:57 AM Thread Starter
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Well we been a little busy lately, so sorry about takin so long.

Was a pretty crazy week. We got up to Portland Sun. afternoon and got a motel room. Took the kids swimmin, ate dinner, and crashed early. I got up at 3am and got my son ready to go. We went down and ate breakfast then took the shuttle to PDX. He flew out for Grandpas in North Carolina at 6am. Pretty sad. Dont get to see him til next summer. He is havin a blast with the G-Man tho so thats kewl. Caddying for him in a golf tournament this weekend.

We then headed out for OHSU to the nuclear medicine dept for Lorans bone scan. We were told the appt. was for 1130am and to be there an hour early, so after gettin her port accesed at the oncology clinic we got there at about 1015am and they said we should have been there at 0830am to get the radioactive isotope injected. Well we were pretty pissed cause they didnt tell us that. They needed the 2 hours to get it runnin thru her system. So since she didnt have it, they couldnt sedate her, so the pediatric sedation specialist doctor left to goto their next appt and we had to wait almost 5 hours later to get it all done. Very stressfull and very agravating. So we went the movies and saw Monster House. Not for little kids. Scared the hell outta the baby. Oops.

The next day we had her port accessed again and headed over to the MRI dept. Everything goin great and right on time until she slipped while playin in the playroom and BENT the needle goin into the port. Started screamin bloody murder. Crap. The nurse sent us back to the clinic to check it out so we rushed over and they checked it. It was still drawing and flushing fine so they taped it up real good and we rushed back. Still had to wait forever cause the whole port checkin thing caused us to miss our appt. and the pediatric sedation doc had to move on AGAIN.

Well after a lot of cryin by the wife and several Starbucks coffees for her to calm her down, they finally got it done. The process took almost three hours after they got started. We then went back to the clinic and saw the head doc who told us the good news (hurrah!). So we headed back to the Ronald McDonald house, had some dinner, and the girls and Angela attended a b-day party for one of the sick little girls stayin there while I bopped across town and saw Clerks 2 with my buddy Mike.

So the good news went like this:

1. The one in her skull next to the brain = shrunken but a little is still there

2. The one above her eye that was removed = Looks like a little came back and there is some residual stuff there but it's goin bye-bye

3. The two in her neck = cant see em (YEEHAH!!)

4. The one in her chest = cant see it either

5. The one on her 9th rib = gonski

6. The one on the 12th vertebrae = still there, shrunk up to almost nuthin

7. The one on her left femur by the hip = No can see nada (All right!)

So she still has three left but they are shrunken and almost gone. They have moved her onto the "maintenence phase" of her treatment. She will now get a shot of chemo every three weeks now instead of once a week. She will have a five day "burst" of prednisone after each shot of chemo (stuff makes her crazy ) and she has started a new chemo drug that is in pill form that she takes once a day. Some sorta lower dose drug. She will have to keep to this for 40 weeks (the rest of her one year treatment).

As far as the insurance goes, we got enough in donations and re-imbursements to pay for one month of continuation. That will cover this trip to Portland and the new scans. After July tho we will be goin with the Medi-Cal (we all qualified except my son cause he lives in Ohio. His mom will have to do sumthin else for him. Its the only downside to all this and I hate it)
We will prolly be goin to San Fran at the end of next week to get established with a new pediatric oncologist specialist. We will still get to goto Medford for her 3 week shots cause they are so close to Cali that they take Medi-Cal but no more Portland

We also got hooked up with C.C.S (California Children Services) and they will foot the bill for all travel expenses.

So some stuff is lookin up

Now I wish I could get my workmans comp crap over with.

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post #134 of 335 (permalink) Old 07-31-2006, 06:44 PM Thread Starter
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On the down side:

She has been taking the new chemo meds for three days now and she is eally really lethargic. Just wants to lay around and watch tv. Part of the day. The rest of the day she's a complete monster from the prednisone.

Baby Girl
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post #135 of 335 (permalink) Old 07-31-2006, 11:51 PM
 
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Sorry to hear about all this man. I'm glad your little girl is doing better. The "port" you are talking about is called a portacaf (sp?) My little brother had a lung disease called cystic fibrosis. He was in and out of the hospital so often, they decided it worthwhile to give him one. They are alot less painfull than getting stuck with a needle constantly. You have been doing a great job trying to keep the familys hopes up, especially your little girls. Although my bro isn't with us anymore, I know for a fact that my family being strong kept my bro strong, and that was important. Cograts on the good news! My prayers are also with you.
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post #136 of 335 (permalink) Old 08-03-2006, 12:34 AM Thread Starter
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Headed out in the morning to Univ. Calif. San Francisco to meet with Lorans new doctors. We qualified for both Medi-Cal and CCS so have to move her.......I don't know what to call 'em. Consulting physicians? She needs to have doctors at a major Pediatric Oncology Center and since we no longer have private insurance and are now dependant on the state, we have to have state doctors. Does that make sense? Her primary physician will stay the same because the hospital in Medford takes Medi-Cal cause they are so close to California and are the closest hospital to the people in Cali that live just across the border.
So CCS (Calif. Childrens Services) is footin the bill. They have booked us rooms in a hotel in S.F. (nuthin fancy, but hell, it's free), and will re-imburse us for all travel expenses (gas AND food). We just gotta save receipts.

After scrapin and scroungin for everything these last few months, you don't know how much of a relief it is to have someone say, "don't worry about it, it's takin care of." The stress level is WAY down around here. We are just so damn tired of traveling tho.

Some good news too. My buddy Bill is gettin us a space at the Coos Bay KOA alongside him next weekend (not this weekend but the one after) and is takin all his quads up there so we are gonna play in the sand some. A vacation! Yeah we still gotta travel but it's only 2.5 hours to get there. I'll try to take some good pics.

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post #137 of 335 (permalink) Old 08-03-2006, 12:36 AM
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Thats awesome to hear...looks like that things are going your way (at least payment wise). Also great to hear that your daughter is doing better....

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post #138 of 335 (permalink) Old 08-03-2006, 01:26 AM Thread Starter
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Heres a few pics from our campin trip 2 weekends ago.

loaded up and ready to go:



Set up:



Girls swimmin:





Other kids got to go to the river:





My buddy Bill gettin his freak on with my ol' lady:


Baby Girl
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post #139 of 335 (permalink) Old 08-11-2006, 02:53 AM
 
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man i just read the this whole thing..i dont know ya but im sure glad everything is finnaly goin your way...i just hope that when i have kids that i am a strong of a dad as you are
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post #140 of 335 (permalink) Old 08-11-2006, 03:09 AM Thread Starter
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Well we just found out how it goes with a crappy immune system. She caught a flu bug or sumthin and it's been nuthin but projectile vomiting and massive diarrhea for the baby since last thurs day. tonight has been the first real food she's eaten in a week. No sleep for mom and dad or baby. She has been sleepin in fits and starts and we took turns sleepin with her cause she was wakin up pukin and/or shittin her little brains out.

We had to stop her chemo (the new pills) cause the doc said her stomach lining couldnt take the abuse of vomiting and the drug.

Its been hell. Esp. all the clean-up and laundry. Not to mention the strain on the baby. Poor little girl.

Oh yeah all of this started last Thurs. on our trip to San Fran. We had to pull over twice on the highway while i cleaned puke off of her carseat with bottled water and baby-butt wipes.

And San Fran farkin SUCKS MAJOR DONKEY BALLS. I hope we never have to go back to that shithole.

Goin to Coos Bay on Sat. tho. Gonna ride the dunes on the quads, eat good dinner, sit by the campfire and put away a few Amber Bocks. Cant wait.

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