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Discussion Starter #1 (Edited)
This is for the follow up appt. for my 2 yr old daughter to make sure the hole in her head is healin up good. Read that story HERE

Will be commin up early Sat morn. Stayin at the Travelodge on Powell & 82nd on Sat night and on the OHSU campus Sun and Mon night. if anyone wants to get together (Mark or Tim :toothless ) P.M. me and i'll give you my cell #.

Not bringin my truck, ridin in The Grand Caravan, but would really dig a chance to meet you guys and see your rigs in person.

This has been a really stressful situation and hopefully will be commin to an end.

Joe

*EDIT*

If you read this thread and have any ideas or info on resources that I can contact, lemme know. Anyone who knows what she may be in for, I would like your perspective on this.
 

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Discussion Starter #6
Going may be slower tomorrow (one of the reasons we're leaving early)

snow level is supposed to drop down to 2000-1700.

still not enough reason to take the Bronco tho (dammit). I did try :toothless
 

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Discussion Starter #8
made it ok. am at the mcdonald house on ohsu campus. had a bbq at my buddies house last night. app is at 915 am tomorrow morn. may be stayin or commin home right after. dunno yet depends prolly on what the biopsy says.

wish me luck
 

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Joes93Bronco said:
made it ok. am at the mcdonald house on ohsu campus. had a bbq at my buddies house last night. app is at 915 am tomorrow morn. may be stayin or commin home right after. dunno yet depends prolly on what the biopsy says.

wish me luck
good luck....prayers are being said for ya....:rockon
 

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Discussion Starter #10
We got back late wednesday night. havent been postin much. seem to be sayin the wrong things lately.

Got a phone call this morning. they finally got the toxicology report. calling it an "eosiniphilic granuloma" but they also want her back for blood tests and an MRI of her whole torso. So we will be leavin on Sun again for Portland. She goes into Hemotology at 10am Mon and has an appt with Oncology Dept later in the afternoon. MRI is scheduled for mid-morning Wed. All at Doernbechers Childrens Hosp.

I think they are lookin to make sure she doesnt have:

Langerhans Cell Histiocytosis

or:

Letterer-Siwe

or:

Hand-Schüller-Christian Syndrome

Which are mo' badder. Sure hope not.


Another week away from home. whoopee. maybe someone will gimme a call this time. felt like i was stood up for prom.


The Ronald McDonald House is a sad place filled with sick kids. But it beats a motel. They have bedrooms with baths and community kitchen/living/play areas. the kids get to play in a rec room with tons of toys. they have computers with internet, PS2's, big screen tv's, books, and just about everything to occupy just about everybody. You have to share in the house chores and clean your own room (including washing the linens) before you leave. Starbucks donates pastry/bakery goods every day. they have Seattles Best coffee. They had lunch from Baja Fresh brought in one day. Tons of food for everybody.

All for $20 a night. Being poor, that helps out a lot.

Anyway, Mark, if you read this and want to meet up, gimme a call on my cell. Any body else want to help take my mind of stuff, pm me and ill give you my #.

If not, its kewl. whatever. just thought i'd share, in case anyone was wonderin.

Joe
 

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send me your number again, Joe... Since our last meet, my phone's screen got cracked, and I can't see shit on it. I'll be up there Monday. If the timing's right, we'll get a lunch
 

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Discussion Starter #12
davids78bronco said:
send me your number again, Joe... Since our last meet, my phone's screen got cracked, and I can't see shit on it. I'll be up there Monday. If the timing's right, we'll get a lunch
whatcha got goin on?

take yer phone by the office of your provider. if they know their shhh-tuff and they got a similar model phone thats broke they may switch the screen for free. i broke my work phone and thats what the guy did.
 

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T-mobile won't do that. they want me to make an insurance claim, pay a massive deductable, send it in, yada yada -F*** all that, I'm just gonna buy a screen, and change it out myself
 

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Discussion Starter #15
I'm sitting in a room at Doernbechers tonight wondering WTF?!?!?

my beautiful 2 yr old Princess is sleeping peacefully beside me unknowing that tomorrow begins hell.

the diagnosis on the tumor that was removed is "Langerhans Cell Histiocytosis". you get either just one or you get em all over. guess what she got?

the blood tests they did all turned out ok, just showin that she has inflammation somewhere. the MRI of her head didn't turn out so good. she has another mass in her neck (what they thought might be inflamed lymph nodes) and one inside her skull pushin on the brain. if the ones in her neck get any bigger it could cut off her windpipe and/or put pressure on her spine causing all sorts of probs. same with the one in her skull. bad things like seizures. the whole body x-rays show one on her 9th rib (which has weakened the bone enough to fracture it slightly) one on her vertebrae at the 12th rib, one on her right hip, and one in her chest (which they just CT scanned about an hour ago to get a better pic of).

this stuff is not cancer but is as serious. fortunately the stuff can be treated with chemotherapy. dies off just like cancer cells do when hit with the chemo. they are going to do surgery Tues. to implant an intravenous tube inside her chest that will deliver the drugs right to her heart and into her system. they are also going to biopsy some of the stuff in her neck since its at the surface and they can get to it.

so my brilliant beautiful precocious little girl is now gonna go thru chemo hell for a year. losin the hair, bein sick all the time, the whole bit.

my wife is a wreck. she is at teh Ronald McDonald house in our room with my 4 yr old daughter and her mom. she has been cryin her poor heart out since 1130 this mornin when the doc showed us the pics from the MRI. I'm here in the hospital room with my angel. i was watchin her sleep and just cryin. this has been the worst day in my life as a parent. i hope no one ever has to go thru this. but at least its not cancer.

we had to let some things (bills) slide to make the trip up here. I'm goin home early Fri morn to take care of some stuff over teh weekend and because i have a work comp doctors appt on Tues morn that i cant miss. i wont even be up here when she goes into surgery. i don't know what my wife will do.

my dad in N.C. said he was gonna send some dough which will help get us outta the hole and take some stress off the wife. this is definitely hittin us pretty hard. emotionally, spiritually, financially.

thanx to David (davids78bronco) for the call. lifted my spirits that day for sure.

Thank you Kevin (96broncoEB)for the e-mail and the offer. it meant a lot to us.


Joe
 

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Joe, where are you at right now, back in Cali or up here on a 'puter?

I'm really sorry to hear about all this. You guys must be goin' through heck. are you planning on getting a second opinion, just in case? This whole thing sounds very technical in terms of what they found. Would hate for her to have to go through all that you mentioned unless it's confirmed and unavoidable. All our prayers are with her.

Let me know if I can help. I'm here in Tigard (Southwest side of the city).
 

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Discussion Starter #17
im at Doernbechers Childrens Hospital in the Oncology Ward North, Room # 11. not leavin for Cali til early early tomorrow morn. they actually have pc's in each room with web access.

on the diagnosis part, i figure they got this one on the nose. they have teams of docs workin on this. the tumor they already removed came back from pathology positive as Langerhans and everything else is pointin that way. this place (OHSU) has more specialists in this field here then prolly the whole rest of the state and washington too. maybe add in Cali too. i'm confident they know what they are doin.

Thanx fer the kind words Mark. we'll prolly stay in Portland for a couple more weeks and follow up in the oncology dept at Rogue Valley in Medford for the rest of her treatment with occasional trips up here.
 

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If you need anything, let me know. I cannot imagine what you are going through. If your wife needs help while you are gone please do not hesitate to call. Always willing to take time to help someone in need.
 

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Joes93Bronco said:
im at Doernbechers Childrens Hospital in the Oncology ward North Room # 11. not leavin for Cali til early early tomorrow morn. they actually have pc's in each room with web access.

on the diagnosis part, i figure they got this one on the nose. they have teams of docs workin on this. they tumor they already removed came back from pathology positive as Langerhans and everything else is pointin that way. this place (OHSU) has more specialists in this field here then prolly the whole rest of the state and washington too. maybe add in Cali too. i'm confident they know what they are doin.

Thanx fer the kind words Mark. we'll prolly stay in Portland for a couple more weeks and follow up in the oncology dept at Rogue Valley in Medford for the rest of her treatment with occasional trips up here.
Joe, I reread your linked post to your son. It appears he had the exact same thing. So how is he, what did he have to go through? I don't see how this cannot possibly be a related (possibly heriditary?) situation, though I'm certainly no doctor. But doesn't it make you wonder? Same eye, same apparent swelling and symptoms, everything. His diagnosis was different than your daughters?
 

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Discussion Starter #20
totally different stuff. he just had an infection similar to strep. swelled up real bad full of goo and was back down in a week after takin antibiotics. all in his eye itself.

the babies was in her forehead and moved down into her eye.

his swelling up happened in a couple of hours pretty much and he was really really sick wit fevers and junk. she never really got sick, the lump just got bigger.

but after already goin thru something really similar with my boy it really freaked us all out.

now i'm goin back to cali, cali, cali, im goin back to cali..............i really dont want to.
 
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