Information Please

Greetings, This is Brenda-Bri's Mom.

I will now make an attempt to encapsulate all the information and updates we have received over the past two weeks. I tend to be wordy so this will not be an easy task. Hold on, here we go. We had our first pre-evaluation meeting with the bone marrow transplant (BMT) team on Nov. 15th. When I say "we" I mean the whole tribe (Bri, Chris, Josh, Dallas, G-ma, Calvin and myself) attended. I think we shocked the medical staff by all of us being present for the meeting. We met with Dr. Edmund Waller, one of the best and highly respected transplant doctors/researchers in the eastern US. We are privileged/blessed to have him treating our Beez as he seemed to take a special interest in her. He spent a great deal of time with us educating us regarding leukemia, types and most specifically the chromosome abnormality. I could go into great detail however let me summarize by saying that her leukemia is not curative with chemo alone, in fact it is fatal due to this chromosome abnormality and its replicating tendency. Hearing the words fatal was frightening. We all maintained composure but internally we were shattered at the very thought of fatality. We put every emotion on hold in order to gather and assimilate all the details of the doctors recommendations. We, as did Dr. Waller, focused on the curative prospect. He explained that Bri's only curative treatment option is transplant. When discussing the risks and benefits he said BMT has a success rate of approximately 2 out of 3. Dr. Waller told us he received some good news from the bone marrow bank regarding 3 very good donor matches. We were all delightfully surprised as we were told of the difficulty in finding matches for minority populations. There is quite alot entailed in this process and we will be getting a great deal of information and preparation in the weeks and months ahead.

After all our questions were answered regarding all the why's, wherefores and medical necessity we moved on to finances. One of our biggest concerns was insurance coverage. Although Bri has insurance through Walmart (BC/BS) her policy will not cover Bone Marrow transplants until the policy has been in effect for one year. Bri's year is not until May 15, 2008. We discussed this with Dr. Waller and questioned if she could continue her HyperC-Vac regime until then, he said she cannot wait until then and he wants to proceed considering her status. We shared our concerns for coverage and he assured us that he and the Emory team are committed to treating Bri regardless of ability to pay. We will be working with a financial coordinator to assist in applying for resources. We have two big areas to address and petition. 1. The insurance company; transplants are the only area where coverage is delayed for a year and we want to appeal this. 2. Indian Health Service and Tribal medical benefits; medical care for enrolled tribal members is a treatied entitlement. However, more regulatory restrictions have limited benefits to members living within a six county area surrounding reservations. Meaning Bri is not eligible for benefits. We will be appealing and advocating for eligibility and the supplemental assistance she is entitled to receive. We will be doing alot of work and I ask for prayers regarding favor. Dr. Waller wants to aim for transplant in mid January or first of February.

We were told that we will have to live in Atlanta post-transplant for a minimum of three months due to intensity of follow up and necessity of close proximity to her medical care. Our needs will be great and we are already planning who will do what, when, how. We may be doing some fund raising to help with all the expenses. We are applying for some assistance and we have received a few financial gifts from some family/ friends which has been greatly appreciated and very much needed. We do have friends working on ideas/ie: cell phone donations, golf tournament for fundraising ideas. If you have an idea to share please pass it along. Again, prayers are needful. She has prescription coverage however our 30% co-pay for one of her home injections is $750.00 for an eight day supply. Thankfully we only have to buy that once a month and we are applying for help with that too.

I will try much harder to keep things flowing in terms of information. I am asking any of you who know someone who knows Bri to please pass along this blog address. It is at this time that a resource network is much needed. Any help, tips, info etc. would be appreciated.

Brianne is feeling better today and will probably post soon. As you may know we were at the hospital last week for course 2 of HyperC-vac treatment and the reservoir placement in her brain. This round was very tough and she was very sick. We go back to Atlanta Friday for transfusion, platelets and then one week later back into the hospital for bone marrow biopsy and another week of in-patient treatment. We thank God for the good days and are learning how to be thankful for the bad days too.

Thank you friends for your love, support and prayers.