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Dargo's little girl needs our prayers

Brent, glad to hear things are finally moving. You're right, something is rotten in Denmark, it shouldn't have taken so long. Give her our best wishes from down south and tel her we are all rooting for her.
 
:smile:Thanks much Brent...I to was wondering and wanted to ask...but being a bit thick sometimes....I was consernd that if I ask on the board and something not good had happened I would cause undue pain and did not want to do that.....thanks again for the up-date and we are praying for your whole family........if something like that was put onto one of our girls I would be tempted to go into confrences with a pick-ax handle in my hand!!!!

God be with ya and yours............Jerry
 
Dargo said:
Oh, sorry all. After almost three months of fighting with Methodist Hospital to get tissue samples sent to much higher regarded neurologists and neurosurgeons, all to try to get some diagnosis, Methodist finally located the tissue samples from Melanie's brain surgery back in December (at least I hope they are from Melanie!) and sent them to the Boston physicians last Friday. Now I'm just waiting to hear from the physicians in Boston.

I could write an entire book on all of the administrative incompetence, physician arrogance, physician incompetence and overall inexcusable experience we've received from Methodist Hospital of Indianapolis. It would take pages to describe the incorrect billing, flat wrong billing, double, triple billing for the same procedure by the same physician, 4 or 5 'consults' at about $3000 each (that we didn't ask for and bore no results) etc., etc. At this point my sole focus is to get Melanie healthy and get a diagnosis. After 4 months, that sounds rather absurd; to still be trying to get information and some sort of diagnosis, or even an "I don't know" diagnosis.

I have several very educated and prominent academicians and physicians who tell me that it really should be my moral duty to pursue the problems at Methodist after Melanie is taken care of. I've been told that over 99% of the people would have just given up after all these months and dead ends with Methodist Hospital of Indy. Those here know me know I'm not the type to let something like that drop; especially when it very well could be life threatening to my daughter!! I don't want to say too much here just in case this does become a super huge issue for Methodist and they want copies of this entire thread (at least 2 or 3 guest visitors who have read this thread have been attorneys and they said all is well here). As I said, I just want my baby girl well. Sure, she's nineteen now, but she will always be my baby girl and daddy's girl. If it saves just one other patient from having to go through the hell we've been through, I feel it's my obligation to then turn the attorneys and AMA and any other medical accreditation group on them.

Hopefully I'll know more later this week. I'm not about to push the fantastic physicians in Boston. They have gone waaaaaay above and beyond the call of duty to try to help my daughter and are embarrassed by the 'bad eggs' who give the stereotype of the physician with the awful bedside manner along with being a case in study of how NOT to run a billing department. Again, a sincere thank you for asking! Hopefully I'll start getting information on a more timely basis. Oh, I am not plugging another site, but if anyone ever drops by there, please drop IslandTractor a PM and tell him how much I appreciate the dozens and dozens of hours he has put into helping Melanie while refusing to accept a dime from me. His first name is Ed. We need more physicians like him! He has been unbelievable in making himself available and pushing this entire matter through. Without any doubt, I'd still be stuck and lining up attorneys right now without him. I cannot speak highly enough about him.
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Great news! .................. without stealing the thread, I can attest you did and are doing the right thing! Without a long description, my mother is alive today because my brother and I questioned her doctors, removed her from their care, and took her to Hillman Cancer Research Center and Shadyside Hospital. The difference between the original care and her current care is just amazing!

The sad thing is IMO it was all about money.... They where clearly upset when I told them we're taking her out of their hospital and then the lies they told when they had to transfer info to Shadyside and Hillman, pretty disgusting. Please learn for Brett's thread .......... do your research when you or a family member needs care!!!
 
Rock on Brent.
It's very good to hear that you've finally got some GREAT support and things are going in the right direction.
I'd been wondering what's going on concerning Melanie and your family.
 
I know I've been quiet on this front, but things have been anything but quiet. It looks like there is about a 90% chance that I'll be leaving this weekend for the long talked about trip to see physicians in Boston. Not that I've had time to be on much, but I'll only have my phone with me on the trip. It looks like it will be just me and Melanie making the trip. When asked when we will get back, all I can say is "When we can, after all has been done by the physicians there." Oh, I wanted to say "thank you all" again for the wonderful gift card. It has not been touched yet, but I'm sure we will get some use out of it this weekend and in the next week or two. Wow, gas has gone up over a dollar a gallon since this started. Wonderful. I'm excited to finally get the ball moving, but I'm also extremely apprehensive. It's been so long fighting red tape and incompetency, I'm so nervous right now. Well, doing nothing is clearly not an option. Cheers to good news and an excellent prognosis that I hope to get for her.

Hey, maybe this is a good omen; while I am typing this, this song just came on the radio in the background [ame="http://www.youtube.com/watch?v=UDRLZFgEoGw"]Boston[/ame]
 
CityGirl said:
Godspeed
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Exactly ..and lots of good thoughts and prayers will be following you guys on this journey. I can sure understand you being nervous ...heck I'm nervous for you.
 
Thanks, very sincerely, to all. Because the high tesla MRI scans are expensive, we had a slight delay; but we got past it (I'll spare you the details of how). Anyway, we start at 6:30 am tomorrow with a 3 tesla MRI scan at a local hospital (one hospital got one in the last 9 months!). That will be sent to Boston ahead of us and give the neurologists and neurosurgeons time to review the scan before we get there, saving us a day in Boston.

After they confirm they have a 'good' scan in Boston I will get appointment times and be able to make travel plans for this weekend and hotel arrangements. It goes without saying that we are hoping for the best. As my understanding is, the 'best' would be that it's just an inflamed and swollen (I forgot the medical jargon, sorry) area that can be treated with specific and targeted anti-inflammatory for a specific time period. From there, well, it just starts getting more complicated and worse. I'm going to stick with the inflammation and hope these super smart doctors know what is causing it and, therefore, know what to prescribe to stop it without any further invasive actions.

Again, sorry I'm not been "me" for the last 6 months or so (maybe that makes some happy :biggrin:). This is by far the most progress we've made in getting some resolution to her situation. I know it sounds like a broken record, but I would have never have been able to get past the roadblocks and red tape if it weren't for "IslandTractor", Ed. I believe in giving credit where credit is due and he has gone far, far beyond the call of duty and has helped Melanie get lined up to see the proper people when I know for a fact I was shut down and basically told to take her home and let her lay on the couch in pain. I'm a grumpy hard ass man, but it brings tears to my eyes when I think about all the kindness shown by everyone here, the unbelievable gifts that will help so much and the unselfish generosity of Ed using his prestige to get us past the roadblocks. I am so thankful for true friends like you guys! I mean that from the bottom of my heart.
 
Does this mean a year from now we can pull your grumpy card???:whistling::yum: Just focus on your daughter and the "stuff" will work out.
 
Wishing you and Mel,and all your Family the Very Best. my Hopes and Prayers are with you all the way.
wayne
 
I have to say that I've seen a lot more kindness on the interweb than the other way around. There are a lot of good folks out there and this medium lets them find each other. Kudos to Ed for stepping up, prayers from Tejas for you & Melanie Dargo.
 
Wow! Since Mel can't fly, I'm checking Mapquest and my Garmin GPS for the best route to Boston. I had no idea it was so freaking far away! Who moved it 1100 miles from my house?! If her first appt. is at noon on Monday, I'm trying to figure how early we need to hit the road tomorrow morning. I'm planning on driving as far as I reasonably can tomorrow, stopping at a motel for a quick stop, and then driving on in to the hospital in Boston Monday. It looks like I need to get to the East side of Albany, NY by the end of tomorrow.
 
Are you going to run across I-80 or I-86? I-80 to I-81 and then north to Binghamton where you pick up I-88 is not a bad run. The flooding is slowly going down and it never closed the roads over there.
 
Quick note from Boston. Unfortunately not good. Tumor has come back about double in size. Causing Mel considerable pain and some vision issues are returning. She will have to endure another brain surgery relatively soon. Wish I had better news. Mel is a real trooper. She seems to be taking news better than me.

I did want to thank all for providing a very ill girl a smile today. I explained that the generous debit card was all for her use. She bought a few shirts and a "Boston" jacket. Thanks again. We have a lot for her tomorrow.
 
Dargo said:
Quick note from Boston. Unfortunately not good. Tumor has come back about double in size. Causing Mel considerable pain and some vision issues are returning. She will have to endure another brain surgery relatively soon. Wish I had better news. Mel is a real trooper. She seems to be taking news better than me.

I did want to thank all for providing a very ill girl a smile today. I explained that the generous debit card was all for her use. She bought a few shirts and a "Boston" jacket. Thanks again. We have a lot for her tomorrow.
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No! :(
Well, I mean that's not the news I am sure a lot of us wanted to hear, Brent.. but as always..the prayers are still coming from all of us here.. your extended forum family.
She is a trooper.
Best wishes from here.. keep us updated every step of the way (when you can).
 
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