Friday, December 14, 2007
Sick and Tired
It's Friday December 14th and Bri has been at Emory five days now. She is very nauseated and just plain ole sick. She talked her PA into talking her Dr. into letting her out early so.....she will be able to go home tonight! She had a few days of feeling very lonely, angry and depressed but she is coming out of it now (A season for everything). We have a good couple of weeks ahead of us with all the family at home and the celebration of "Festivus".
We have some meetings next week and will hopefully know more regarding plans for transplant. I forgot to let everyone know that we found a kind soul in the Indian Health Service, a Dr. who is supportive, now if we can policy makers to comply we may get a little help. The decision is in the process with a few more decisions to follow. Mercy and Grace is what we need.
Great songs that have been encouraging us lately Rich Mullins "Hold Me Jesus" and "Ready for the Storm". Take a listen as they are comforting.
Until later..... Bless You
We have some meetings next week and will hopefully know more regarding plans for transplant. I forgot to let everyone know that we found a kind soul in the Indian Health Service, a Dr. who is supportive, now if we can policy makers to comply we may get a little help. The decision is in the process with a few more decisions to follow. Mercy and Grace is what we need.
Great songs that have been encouraging us lately Rich Mullins "Hold Me Jesus" and "Ready for the Storm". Take a listen as they are comforting.
Until later..... Bless You
Tuesday, December 11, 2007
Back from NC
On Saturday my oldest brother Christopher and I returned from our hometown of Sylva NC. I spent the week with Chris in Western North Carolina trying to take care of some business with contract health at Indian Health Services in Cherokee. It was frustrating to say the least. On Wednesday night we went to First Pres. (my church) for family night supper and prayer. It was so wonderful to see all of my church family and my dearest friends (minus a few). Then on Thursday we were back in Cherokee for my doctor apt. After that we went to dinner with Lisa Lefler (our god-mother) at Nick and Nate's. If you have never been there, you are truly missing out on wonderful pizza. We had the Nanatahala!!! Yummm. After putting up with me for several days Chris finally collapsed. :) Poor kid, he had been fighting an ear infection and sore throat all week. So Friday we spent chillin' out at Diane's house watching a Monk marathon. Then we went out to 553 in downtown Sylva for dinner with James, Judy, Eric, Bryan, and Amanda. I wish Donna and Katherine could have come. :( We all listened to Jeff and Micheal's gig. They were awesome by the way. :) All in all I had such a wonderful time. I miss my family up there so much. Chris and I came back to Georgia on Saturday afternoon. I had a great weekend at home with my family. But I had to prepare for another week in Emory. On Monday morning I was scheduled for a bone marrow biopsy (which was preformed by some intern/resident who didn't know what he was doing, he was being supervised, but still...it was soooo painful) and then I was to be admitted back into 6E. So, here I am. Back at the hospital for the 2A round of my Hyper-CVAD chemo treatment. My mom spent the night with me last night and is spending today with me. :) It is nice so I'm not so lonely. If you get the urge give me a call I'll be here until about Saturday morning. Then I'll be home for Christmas!!!! :) I can't wait. Thanks again for your prayers and support. Happy Christmas!
Wednesday, December 5, 2007
The Looooooonnnnggg Day
This is Brenda, Bri's Mom
Tuesday began for Bri and Chris at 5:30 am traveling to Emory for doctors appt's, lab, staple removal, blood transfusion and medical records. They left Winship Cancer center at 5:45 pm. A long twelve hour day at the clinic and then they drove to Cherokee, NC to take care of the needed requests for medical assistance from the tribe. Chris and Bri got to NC around 9:30 pm and needless to say they were exhausted. Bri feels better today after getting blood and platelets. She had to get five units with one week! No wonder she was tired.
In addition to the medical needs and doctors appt. in Cherokee other business matters needed to addressing. We are working towards efforts in assembling support from her Wal Mart group. We have so much work ahead and lots of appeal writing in addition to fund raising (we will discuss more later). We do need special prayer for favor!
Today we participated in a teleconference call re: Step One, Bone marrow/stem cell transplant. It was informative and is helping us to prepare for transplant. More will be coming up and again we have lots to do!
Thank goodness for my family. Chris, Joshua and Dallas have been so very helpful and supportive on a daily basis. We could not and cannot do all this without them.
We go back in to the hospital Monday the 10th for a week of treatment and get to be home for Christmas. Brianne and Chris should be back from NC late Friday. They will need a weekend of rest. Take care everyone and thanks again for the prayers.
Tuesday began for Bri and Chris at 5:30 am traveling to Emory for doctors appt's, lab, staple removal, blood transfusion and medical records. They left Winship Cancer center at 5:45 pm. A long twelve hour day at the clinic and then they drove to Cherokee, NC to take care of the needed requests for medical assistance from the tribe. Chris and Bri got to NC around 9:30 pm and needless to say they were exhausted. Bri feels better today after getting blood and platelets. She had to get five units with one week! No wonder she was tired.
In addition to the medical needs and doctors appt. in Cherokee other business matters needed to addressing. We are working towards efforts in assembling support from her Wal Mart group. We have so much work ahead and lots of appeal writing in addition to fund raising (we will discuss more later). We do need special prayer for favor!
Today we participated in a teleconference call re: Step One, Bone marrow/stem cell transplant. It was informative and is helping us to prepare for transplant. More will be coming up and again we have lots to do!
Thank goodness for my family. Chris, Joshua and Dallas have been so very helpful and supportive on a daily basis. We could not and cannot do all this without them.
We go back in to the hospital Monday the 10th for a week of treatment and get to be home for Christmas. Brianne and Chris should be back from NC late Friday. They will need a weekend of rest. Take care everyone and thanks again for the prayers.
Wednesday, November 28, 2007
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.
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.
Monday, November 26, 2007
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.
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.
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