Friday, July 31, 2009

It's been one week to the day since we sent the 'compassionate use' application to Bayer requesting a donation of nexavar after medicaid turned it down because of the expense.

Amiee will start her two - three chemo-pill a day regimine today. We are heading over to see her soon. Really bad week for us. I've been incredibly stressed and made things difficult for her dad. (PS: It's so important to have outlets as caregivers. You never know when or why some days are worse than others. Surround yourself with things that make you happy and are helpful to you!). Her birthday was Monday, she turned 23. We've been battling with the healthcare plan, Access Health Solutions, the medicaid reform company of our choice in Broward County, Florida. We can't select 'straight medicaid', we have to chose from a group of plans that is not functional to Amiee's condition at all. And they add and drop plans and coverage randomly, in the middle of treatment.

Here in our county, they do not have any surgical facilities that could support her. Our original plan covered the Moffitt Cancer Center in Tampa, where we have been seeking supplemental treatment, is no longer covered under this plan. Fortunately, her onc is young, aggressive and has reached out to his peers to find out the latest combo of chemo drugs that may work on her angiosarcoma. She's been on a breast cancer regimine on an experimental basis since October/November 2008. It worked great in reducing the tumor, but the side-effects landed her in ICU January and February of 2009. Her immune system is so compromised from the three years of chemo this go round, the two weeks of radiation, and the four years of both during her childhood battle with rhabdomyosarcoma.

The 'insurance' won't allow her to go out of county for treatment without prior authorization and acceptance of the receiving facility. In her condition, that won't happen. We've considered having her airlifted to University of Miami, Jackson hospital in Miami Dade, but our first year and a half we were there. We left after a 12 hour wait on the curb at the ER where her oncologist told us he'd meet us and left us waiting. The waiting for an 8:00 oncology appointment at that clinic was often until late afternoon. Even then, we'd get about 15 minutes with a public health oncologist balancing an incredible caseload, and they'd barely remember the case when we got there. Then, the doctors would change and we'd start all over again. The waiting would have absolutely killed her. They have more comprehenisve facilities in Dade county, but the trade off is too great. Choice would be nice. SUPPORT HEALTH CARE REFORM!!

To make things even more interesting, we started receiving calls from a hospice center here that received a 'referral' for her to be moved there. Nice call! They asked for me and said they had the 'information I requested'. I never requested anything like that, and it turns out the hospital 'case worker' and social worker, along with the medicaid case workers have been pushing for her to be moved for about a month. They have been up in her room, harassing her about hospice and she cannot even talk (because of the huge tumor in her mouth) to respond. What a nightmare for her! Her 'primary care' doctor, (the doctor on-call when we had her admitted in May), has been doom and gloom since the day we got there. Understandably. But of course, we don't want to here that! Her oncologist has been wonderful and honest and caring and told us when there's no more hope, he'll tell us. So he's fought with us to keep her in the hospital until the nexavar went through.

He has told us he does not expect this to work but wants to exhaust the last option he could reach for. It's a kidney cancer drug being used for a head and neck tumor. We'll take it gladly!!

Today's the day!!! It has to work. We'll continue to take things hour by hour, day by day. We're continuing to fight against all odds to save our beautiful girl!


Post a Comment