Wednesday, December 5

Official Update.

YES, YES, YES!!!!!! Regina is truly one amazing 8 year old. A M A Z I N G !!! And Dr Dhall is miracle doctor ( well, his team also... ;) )

Believe me or not, but MRI scans DID NOT pick up any cancer cells. IT did pick up something, but it surely is not acting like PNET. Dr Dhall believes it could be from Radiation therapy ( there is also some changes in brain stem but those were present before). Dr Dhall told us not to be way to exited about it since IT is very hard to tell WHAT is surrounding that area . It could be cancerous, it could be completely benign. Without surgery it is impossible to tell. BUT Regina can not have surgery on that area since it is part of brain and cutting it would be not the best idea.

So now we have few things left to do. I asked Dr Dhall what would happen if we quit now. He told us ( and we believe him. He told us that long term survival would be out of question. To give REgina chance in life, WE HAVE TO have STEM cell transplant with pretty high dose of chemo ( temodor, etoposide and Thiotepa). This would most possibly kill rest of remaining "cancer" cells there are left ( hiding).
But now we have another huge issue. Our insurance company WILL not want to cover Reginas treatment because of BOARD of MEDICAL ADVISORS ARE MORONS!!!!! YES. This time I mean it. I am not jokingly telling it. They are fat ass morons.!!!

IT IS MEDICAL NECESSITY. There are few papers published about relapses and MUCH NEEDED STEM CELL TRANSPLANTS. Dr Dhall and Finlay are doing everything they can. And they told me what kind of trouble they have gone through to get Reginas treatment covered. But Board of Morons, who have NO IDEA and have no EXPERIENCE and who have NEVER done stem cell transplants are denying lifesaving procedure...

This is what they say....

OUR Peer Clinical Reviewer JOHN GOLDENRING , MD has determined: The request for tandem stem cell transplant to treat a Primitive Neuroectodermal tumor ( PNET cannot be authorized at this time because it is considered experimental. The blue cross of California medical Policy to High dose Chemotherapy with Hematopoietic Stem Cell Transplantation for pediatric Solid Tumors, which is based on published peer- reviewed evidence based medical literature, was utilized in making this determination. This case was sent for matched , independent specialty review by an expert who is not associated with blue cross of California, and that reviewer confirmed that this treatment is still investigational and should only be done in the setting of an appropriate clinical trial.....

OK. Now, I am going to email Dr dhall and ask if we could do this somewhere like IN ST JUDE ????

ANYWAY.. JUST HOPE THAT Things get worked out :)

6 comments:

Julee said...

I could barely read this through my tears. I am so happy! Our prayers have been answered, now lets pray that the stem cell transplant gets approved.

Ilaria said...

This is awesome....but insurance companies are evil and there is a special place in hell for people who deny treatments such as this.

Anonymous said...

Thanks be to God for your good news!! Now, praying for continued recovery and funding for the stem cell therapy!!

Anonymous said...

MRI RESULTS: SO SO EXCITING!!!!!!!

KEEP FIGHTING !!!!!!

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Lennuk said...

What a nice early Christmas present! Wow! I'm really happy for you, for Regina, for your family!

If only these MORONS would come to their senses...
Hopefully there are some options!

Beverly said...

Regina truly is an amazing little girl!

Hopefully BC/BS will realize the necessity of this procedure.