To understand the imposible.

Over the years I think I've become a writer. As much as I don't know about grammar and spelling, words and ideas fascinate me. Having the ability to pen out what I feel and having the capability to express myself with words is the best relief I could ever ask for. These past two months have been so incredibly impossible to understand. I haven't ever felt so numb and incapable of truly expressing myself. I have been able to get on here and tell cyberland that the doctors have said this and I am staying positive and that this treatment is doing this. But it all seems so surreal. There are times during the day when I don't feel sick. I sit and things feel normal. I don't have pain, I don't feel like I'm going to loose my lunch, and I don't feel lost or confused. But then those moments slip by and I return to the impossible. I don't understand. I want so much to understand. The doctors give me what they call a road map of my treatment. It outlines the plans for when and what drugs I'll be receiving and for how long and how much. Anyway, I wish that there was a road map for how to deal with this situation. I began thinking about how best I knew to cope. In the past I've run to substances or even people to escape dealing with the problems at hand. I'd loose myself in doing something, work, school (well maybe not class work, but I'd go to class and sit :), even creating projects for myself just so I wouldn't have to face the music. With this I can't run. I can't go to work and forget about it. There isn't an escape. I have a constant reminder that something in my body is trying to hurt me. I try to put on a brave face. But now I have no faces left. I've run out of excuses and I have to accept that I must go through this. It is the hardest thing I've ever had to do or deal with. The awsome thing is that God makes the imposible posible. My brother Joshua told me this a long time ago when I was facing some things, that at that time, I didn't think I was going to make it; "People say God will never give you more than you can handle. And that is only partly true. God will never give you more than you can handle with Him." I just need to remember the "with Him" part. Please keep praying. The chemo, meds, and just this disease in general are really taking a toll on me.

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.

Hurting

Hello everyone, this is Brenda, Bri's mom.

I will post a medical update later but for now I wanted to let everyone know that Bri has been very sick with this chemo treatment. It is round 2 which includes high levels of methotrexate and cytrabarine. Sick and tired is how Bri has been feeling. She came home late Friday and is trying to get back in to her new normal. She has felt very down this time physically and emotionally and is hurting from the reality, the medication, the fears and the "whats ahead". She wanted everyone to know that she has not felt like talking right now but will follow up as soon as she can. We have lots ahead as far as treatment and preparation and will need your continued prayers and support.
Thank you for being there and sending your encouraging words.

Hospital for Chemo and Reservoir - Happy Thanksgiving

Hello all - this is Joshua making my first post.

I've been here at the hospital since Monday with Brianne and we'll be breaking out on either Friday or Saturday. She's been having chemo all week and is holding up. On Monday, they performed surgery to put in the reservoir which went well, and she was groggy and slept most of the rest of the day. On Tuesday, she was a bit more alert, but threw up her lunch after having a procedure where they shot chemo straight into here brain using the new reservoir. She then slept the rest of the day and was out of it. We would be sitting there watching tv or something and she'd space out for a few minutes. It's been like that most of the week.

We've been walking around the floor some and she was able to hold down a little food on Wednesday, but hasn't eaten anything yet today (she's been a bit sick and Mom is coming in later this afternoon, bringing something good to eat). The McManuses came by on Wednesday which she really enjoyed. It's been really weird being here this week as this has been my first stay with Brianne in the hospital while she receives chemo. Most of the day is spent getting water, walking her to the bathroom, calling the nurses, talking to the nurses, alerting the nurses about the machines beeping, and a lot of sitting around. Brianne hasn't been sleeping well due to the nurses coming in an out at night and is very nauseous from the chemo and brain surgery. She seems to be getting better, as she has more times when we interact and watch tv or talk, but the chemo and multiple other medicines take a toll on her. Brianne having chemo is worlds different from Brianne at home.

We should be going home soon which will be nice, but I'll be heading back to Jackson this weekend. Keep praying for Brianne that she'll handle the treatments well and remain strong. Also pray for her attitude, as she gets worried, nervous, and scared. Joshua Signing off.

Tough Times

Beez goes in the hospital for her surgery tomorrow morning for placement of Ommaya reservoir ,http://patienteducation.upmc.com/Pdf/OmmayaReservoir.pdf. She will in the hospital for a week of chemo treatments beginning her 2nd round. Joshua is home for Thanksgiving and will be staying with her at the hospital this week. We had a wonderful pre-Thanksgiving celebration this weekend with our family even though it was intertwined with Dr. visits and pre-op meetings. We have a clearer update to give everyone regarding our meeting with the bone marrow transplant specialist and will do so in a day or two. We had some really good news and some really sobering realities. We are coping, and being sustained by Gods grace and tender mercies. We all hurt for Beez having to go through this and we thank you for for the prayers and expressions of love. She is holding on but still hurts physically and emotionally at times. Please add our traveling prayers to your list as Christopher travels weekly back and forth from Birmingham, Joshua back to MS next week and of course Beez and I a couple times a week to Atlanta. A million thanks and blessings be returned to you all.
Brenda

A Real Update

First I want to say sorry for not keeping everyone up to date on what is going on over the past few days. Things have been insane traveling back and forth from Macon to Atlanta. When I was released from the hospital a couple of weeks ago I knew that the rest of this new course was going to be different. I found out quickly how hard. I have spent the last several days very sick, very tired, and very frustrated. My medications have been making me feel crazy and out of control. I don't quite feel like myself anymore. My mind seems just a little behind the rest of what is going on. I call it chemo-brain and hopefully it will pass. On Monday I have surgery. The doctors are putting a resevior in my head. This is so the doctors won't have to keep doing lumbar punctures. I will be in the hospital from the 19th through the next 5-6 days following. My surgery will be on Monday morning and my chemo will start that night. I am going tomorrow to Emory with my family to meet with the Bone Marrow Transplant team, Friday pre-op and then I'll be spending the weekend having Thanksgiving fun with the family. Will share more information after our meeting with the bone marrow transplant specialist.

Nothing to do with cancer.

There are some days that just make you want to write. The weather is set, the circumstance is presented, and then it comes- inspiration. Today was not that day. I mulled about doing this then that and nothing. I have this overpowering desire to write something beautiful, something full of meaning, but I just don't feel like I have anything of importance to say. How frustrating. Maybe I'm doomed to spend my days filling pages with paragraphs of nonsense and blah blahs with bits of poetry and cliches' stuck in-between. If you have any ideas for me to ponder and butcher or maybe to pontificate upon please send them my way. Muse speak to me. Some one please "a-muse" me. Teeheehee.