Bri vs. A.L.L.

Request for Support

2008-09-07T14:55:00.006-04:00

Bri's Mom here: Greetings Everyone,
I hope that this note finds you all well and enjoying our precious gift of Life. It has been a long while since I last communicated with many of you. Since Brianne passed away in June, I have struggled with all the effects that grief brings. The reality of losing Beez remains very painful. I compartmentalize; take care of my responsibilities and then when I allow myself to reflect and revisit I still grieve deeply. The loss of my girl feels like a deep hole of emptiness and sorrow. It is something that only God can touch to get through the pain but the heartache remains daily. often find myself crying out to God saying "I just want her back" knowing that is a prayer that will not be answered. I hold on to Hope and someday I 'll be with my girl again, hearing her laugh, seeing her beautiful smile and hugging the stuffing out of her. Well, enough of the sad song. Beez often pleaded with me to not remain sad after she's gone and to please live, really liveeach day. She was an excellent role model of that for me as she enjoyed life with great joy and loved completely!
I am writing now to ask for your consideration and support of a dear childhood friend of Brianne, Chris and Joshua's, Jonathon Brown. Jon has entered and committed himself to run the Marine Corps. Marathon in Washington, D.C. to raise money for Leukemia and Lymphoma research in memory of our Beez. We know Brianne wanted us as a family to support this cause and we are committing our future days to support research in hopes for a cure someday. Please consider sending even a very small gift to support his run. Just a ten dollar donation would help as Jon is still 1,000.00 short of his $3,500.00 goal.
Please read his web page and letter and give what you are able to give. Thank You so very much for your time and consideration. Blessings to you and your family

Website
http://pages.teamintraining.org/nc/corps08/jbrownyqag

See the letter attached from Jonathon Brown as he explains how he was lead to run 26 miles and commit himself to this cause. Again, thank you

Hard Day

2008-06-27T15:31:00.002-04:00

Today has been a very rough day. I sense something very heavy within me physically and emotionally. I know it's there and nagging at me but I stuff it til the "appropiatte time" mostly at night when all is quiet and everyones retired to their rooms. But now I just checked the mail, got a card from a friend or two, read the words of love and beautiful memories regarding Beez and I loose it. It's a good thing, a very good thing, actually a cherished thing I treasure to read the memories that people who love her remember and share with us. I do love hearing about her escapades, fond memories, the "life and times" so to speak of "my favorite". So I wanted to jot a quick THANK YOU for all who have sent me/us a note with your fond memories of Brianne, Beez, Bri or Briannicles to some (We teased her often regarding her many names, mostly though about how those who didn't know her would call her Brianna. She couldn't stand to be called Brianna! It was worse than nails scratching a chalkboard to her). Anyway, thank you again for your very kind sentiments, memories, prayers and expressions of love. They are TRUELY helping us all.
Sincerely, Brenda

Lil bishun

2008-06-22T22:35:00.002-04:00

That's what my girl used to say when she just absolutely had zero gumption, energy or simply very little ambition "lil bishun" to do anything. We often used different words to communicate our thoughts, feelings, etc. God I miss her terribly.
Well I am in the negative on lil bishun scale. Not feeling up to much of anything. Holding on though. Doing the next thing but nothing creative or sharing. So keep on checking the blog, maybe in the next week or two will be able to get some pics together. As I said before Chris is having a very hard time getting through the picture video of Bri, it just hurt so ---- much. We miss her beautiful smile her loving spirit her witty banter and her sweet voice. Gotta go, can't see through the tears to type anymore. Bless You and Thx for the prayers.
Brenda

A Season of Grief

2008-06-11T20:58:00.003-04:00

We will post some things in the days to come. Presently we are coping, grieving and "doing the next thing". Christopher is working on a pictorial memorial that is beautiful but difficult to finish as you can imagine. Please check back later. The notes people have sent with memories and what Bri meant to them has been incredibly encouraging and comforting. Thank You and please send more so we can compile them.

On a personal note:
One week has passed. I have not posted as words fail me. One of my very precious treasures is gone from me and I grieve. I have never known such sorrow. At times I am comforted by Gods words and promises. Other times, nothing seems to satisfy the deep longing for my daughter/best friends prescence. Embracing the finality, the reality is excruciating. Anxiety, remorse and sorrow replaces hope. Eventually, the overwhelmingness of it all washes away as the tears stream down. I am left with nothing but God, just as it should be.

A Grievous Loss & A Better Place

2008-06-05T13:39:00.012-04:00

Last night, Wednesday, around 8 PM, Brianne passed away and is now with God. She no longer is in pain or hurting, and our hearts and minds are still reeling. We thank everyone out there for your prayers and support throughout all of this and continue to ask for prayer. Per Brianne's request, we will not be having a memorial or funeral service and she'll be cremated and her ashes scattered in the Smoky Mountains of North Carolina in the Fall and at the first snow. In lieu of flowers, we would ask people to either send gifts to the home address below or support our friend Jon Brown who is running a marathon in honor of Brianne and raising money for the Leukemia & Lymphoma Society. The Leukemia & Lymphoma Society and the American Cancer Society have been very supportive, helpful, and provide an invaluable service.

Re. the Party - it was a smashing success and a wonderful time of fellowship, food, and fun. We had around 200 people that came, and we wound up running out of name stickers, had cars parked all up and down our street and neighboring streets, and have lots of leftovers. Thanks to all who helped out and especially to Liz who is an amazing coordinator, mover, shaker, and friend.

Within the next few days, we will post some pictures from the Brianne-abration, some info. about the party, and a few of the letters written to Brianne. Thanks again for everything ya'll out there have been to us and to Bri. We love ya'll.

If you want to contact us, you may write us at:
The Tsavatewas
539 Moss Hill Dr.
Macon GA 31204

call or email:
Chris (478-361-3507) & thecigarstoreindian@gmail.com
Mom (229-506-3221) & btsavatewa@yahoo.com
Joshua (478-737-4178) & jtsavatewa2002@yahoo.com

P.S. Please continue to email pictures to Chris at thecigarstoreindian@gmail.com

The Brianne-abration!

2008-06-01T22:39:00.016-04:00

Time: Wednesday, June 4th, AD 2008, 2PM EST-Until (staying late is perfectly fine and encouraged)
Where: Chris & Dallas' house
Who: Any and everyone
What: Party w/ Brianne and her peeps.
Themes: Come in your favorite Bri-esque attire (ie: three t-shirts, a trucker hat, or something Bohemian). Also: a theme will be to mingle and meet strangers sharing your BRI experience, because Brianne never met a stranger.

Our address is:

539 Moss Hill Dr
Macon GA 31204

and here are links to google maps for how to get there:

Directions if coming from the North (Atlanta down I-75):

Directions if coming from the South (S. GA up I-75)

Thanks to everyone who has offered to help, and if you still wish to help, but have not contacted us, please contact Liz Collins about helping out by emailing her at lizacollins84@hotmail.com or downhere4him@yahoo.com or call her @ 478-318-2714. Please continue to email pictures to Chris @ thecigarstoreindian@gmail.com.

Please direct any and all questions about the Brianne-abration you may have to Liz.

Life Celebration Party Plans

2008-06-01T16:07:00.001-04:00

Because of Brianne's setbacks and the medical staffs information and we are currently thinking that she may not have much time left. We've moved from her having 3-5 weeks, to possibly having only 1-2 weeks and now only a few quality days. With her weakened immune system and the infections in her (the pneumonia, septicimia, & the fungal infection on her skin), in being realistic, we have to face the possibility of less time than originally thought. Because of that, we are going to move up the life celebration party to Wednesday.

Regarding the party: We've had trouble finding a place to have it, so we are just going to have it at the house. Some of the specifics are in flux right now and we'll have it firmly nailed down by Monday night. We're looking to do a bunch of different stuff and have a lot of Brianne's favorites foods and activities. We would like to get some help in getting people to purchase certain things simply because it's a bit of a logistical nightmare to get together all of the stuff and we're a bit busy right now. If you are willing/able to do something please email Chris at thecigarstoreindian@gmail.com, and include your name & phone number and we'll assign something for you (of course, after conversing with you). Having the party is kind of her last wish, and we really want to have it and have many people come.

Also, please let others know about this new development and the date change. We will be emailing and calling people, and some people don't read the blog and/or we don't have their contact info. Thanks again and we need your prayers. Also, keep the pictures via email coming to Chris at thecigarstoreindian@gmail.com. If you have any old-school, non-digital pictures, bring them to the celebration party and we'll put them up on the walls.

Health Update

2008-06-01T13:04:00.002-04:00

Brianne had a setback Saturday, and we were not able to go to North Carolina. Instead, we are going to be staying in the Emory hospital until the middle of next week and will probably return to Macon by Wednesday or Thursday. We are still intending to have the life celebration party on Saturday.

Brianne's health has deteriorated rapidly over the past 36 hours and she is very weak, tired, sore, and ill. She started developing some sores on her skin on Tuesday and Wednesday and over the past 2 days, they've appeared over all of her body. The sores are due to her weakened immune system and come from a blood infection. The Doctor said the sores should continue to multiply and probably won't go away. The sores look kind of like chicken pox, but they don't itch and are just painful. The sores are not contagious and come from a fungus that every person has, that a normal person's immune system takes care of. We just want everyone to be aware of her appearance, so as not to be shocked or scared.

(Moms addition) Bri is looking forward with delight to her party and is trying to hold on. I know everyone is praying and we bear testimony to the power of prayer as it is what is sustaining and giving hope and peace at this overwhelming time. We have the rough sketch of plans for the party and will be posting the details later today. If you have pictures email them to thecigarstoreindian@gmail.com . Thanks again for everything.

A Different Phase

2008-05-30T10:51:00.004-04:00

We've spent the last week intensely waiting and the weeks before waiting for this day. We now know where we're going and Brianne will not be undergoing any more chem treatments and will only have 1-2 good weeks and a few weeks after that. We met with the Doctor last night and he told us that her leukemic blasts in her bone marrow are at 70% and another round of chemo wouldn't lower it enough to go to transplant (it would have to be below 10% to do the bone marrow transplant). The last week has been tough as we've waited for numerous test results to come back and it's incredibly difficult to be facing the idea of Brianne dying.

Because her type of leukemia replicates so quickly, she will only have a few weeks, and she should get out of the hospital Saturday. We are going on a trip to North Carolina for a few days and will return to Macon by the middle of next week and Brianne asks to have no visitors at this time. We are planning to have a "life celebration party" in lieu of a funeral/memorial service and it is scheduled to occur on Saturday, June 7th in Macon. More details will follow.

Brianne is at peace with what's happening and has expressed her sense of peace numerous times. She's been incredibly strong and a calming force for all of us. We thank you for your prayers and continue to ask for prayer as we go through this difficult time. Pray for a continued peace, God's comforting hand, and for Brianne's physical comfort as her physical condition worsens.

We will also be making several requests to help out with this celebration, as many of you have indicated that you want to help, but an immediate request we want everyone to send pictures of brianne, or you with brianne, etc to one central location....Chris' email thecigarstoreindian@gmail.com thanks for all your assistance.

Waiting

2008-05-28T10:45:00.004-04:00

We thought today we might be in a place where we could share some solid answers however, that is not the case. Yesterday we spoke with the doctor regarding Bri's decision. He said he needed to run a few tests to: 1. Determine the cause of Bri's pain (wanting to rule out pancreatitis, gallstones, liver, etc. ) 2: Stabilize her medication regime, explore options and 3: Gather some additional data surrounding her leukemic blasts in her blood and marrow. So yesterday CT's and ultrasounds were done. This morning she had a bone marrow biopsy as they want some solid data on the blast level in the marrow. The doctor indicated that he wanted Bri and us to have as much information as possible to evaluate. He is now satisfied with Bri's level of competence in decision making as she has improved. The nausea and vomiting has subsided and her alertness is increased. In a few days we will give more details but right now we are asking for continued peace and prayer for the family.

The doctor said Bri needs to remain a few more days. She can have visitors however, presently she is in need of rest to gain some strength, so right now the visits should be short. Additionally, if you have been sick or exposed to someone who has been sick (cold, flu, etc.) please save you visit for another time. If you plan on visiting call either Bri's, Brenda, Joshua or Chris by cell phone to let them know you would like to come. Also, be careful to not wear any perfumes or cologne as it triggers nausea. We are at Emory University Hospital room 622E.

The prayers and communication of love, encouragement, hope and peace have been like a "balm to our souls" We are being sustained and kept by Gods amazing Grace and we know that we know that we know "the prayers of a righteous man availeth much"

Bless you all and thank you.

Update

2008-05-26T22:53:00.002-04:00

We talked with the Doctor today (Friday 5-23) and we don’t have much time left to make a decision regarding what step we’ll take. Brianne has to ultimately make the decision regarding her own treatment, but she’s faced with two options: she can have another round of chemo. Or she can stop. This last round has made her leukemia blasts and white blood cells drop dramatically, but she is still not in remission. Her problem with nausea is continuing and they don’t know what is making her so nauseous (it could be something in her stomach, so they are stopping several nausea medicines and giving her some stomach medicines).
With another round of chemo, she could go into remission, but the chances are very small. The problem with another round of chemo is; the intense illness that follows, the cumulative effect of the chemo on her organs/body and Brianne has indicated that she is tired of the extreme illness, vomiting, nausea, and being “out of her own mind.” The Doctor said many patients just get tired of living in a constant state of illness and elect to stop treatment when the chance of success is very small. On the 14th of May, we passed the eighth month since Brianne’s diagnosis and she has been on very strong chemos and clinical trials for most of that time with little success in putting her leukemia in remission long enough to do a bone marrow transplant. Her chance of going into remission is further compounded by the fact that her ALL leukemia variant is a 4-11 translocation of her bone marrow DNA (where the 4 & 11 chromosomes have swapped places). She also has another genetic variation (MLL gene) that complicates stuff.
If Brianne elects to stop treatment, she’ll probably only have 1-2 “good” weeks. Even if she stops treatment, there’s no guarantee that the nausea will go away (again since it could be caused by a stomach issue). Because her kind of leukemia is such a fast kind, it would likely grow very quickly and give her only a few weeks left to live. The leukemia works by rapidly producing white blood cells and immature white blood cells called blasts, both of which change the normal blood ratio. As the disease progresses and the blood gets crowded out, most patients die from massive bleeding, an infection (pneumonia), or the brain shutting down from getting crowded out by the blasts.
We are kind of in the same spot we were a week and a half ago, except this time we are faced with making a decision about which path to go. We won’t have to or be able to make a decision until Tuesday or Wednesday but it’s a very tuff decision and Brianne needs to be in her right mind to make it. Right now we need lots of prayer for Brianne’s decision, health, frame of mind and our family coping.

UPDATE: Sunday night. Brianne had a much improved day Saturday. She was alert more and the vomiting has stopped. She is in a lot of pain which they are treating. She is aware of what decision she needs to make. We (Mom and Bri) talked and prayed Saturday night and Bri has a peace about the situation she will hold it in her heart for now but she said she a knowing and we will share with the doctor and others by Wednesday. We should be in the hospital until Thursday and then we will share plans for the next few weeks.

If you need to contact us please leave a comment or note. Brenda’s email address is btsavatewa@yahoo.com.

Thank You, Thank You Thank You for your prayers and love.

Update from the Hospital

2008-05-21T14:47:00.003-04:00

(I just realized that it says at the bottom of the post it says who posted, so I no longer have to put my name):

Brianne is about the exact same. They are going to change up her nausea medicine today, hoping that it will makeher less nauseous and more alert; they are also changing her pain medicine. Basically, she's been asleep all the time and throwing up when she's awake, and they're trying to keep her awake more. We still won't know anything about what will happen till Thursday or Friday.

Pictures of Bri

2008-05-18T14:10:00.001-04:00

Produced by Chris

CT results

2008-05-18T08:04:00.002-04:00

The CT showed the spot in her lungs where pneumonia resides has increased a little in size. The Dr. said not to be concerned, this is common for her situation. Due to the complexity of anti-biotics they want to keep her awhile longer. The nausea and sleepiness remains. If you have called or emailed her she will get back to you as soon as she is up to it.

Update from Brenda

2008-05-17T08:32:00.002-04:00

We wanted to post some new pictures but my mind lately has been surrounded by "confusion and delay". Hopefully, I can get them posted by the first of the week.

This has been a very rough week for all of us but certainly more for Bri as she endures the physical aspects of weakness and pain. She is nausated regularly and is throwing up and as a result has barely eaten in the past 11 days and is only drinking water. They are giving lots of meds to help with the nausea but it has not been eliminated. The strongest med, Ativan, causes her to sleep. She is very weak and tired. Since Tuesday, she has slept probably 20 hours out of every 24 hour day. They think it's the cumulative effect of all the chemo and the last dose given on Tuesday. Unfortunately, this round will be much harder on her. A CT scan was done yesterday to see how the pneumonia has responded. Good news is she has been fever free for 48 hours and that is a TERRIFIC sign. If a few other things fall into place she may be able to go home soon (the Hope Lodge and hopefully home a little bit).

On Thursday, We had a conversation with Dr. Heffner our hematologist/oncologist regarding treatment and care. I asked some questions that were difficult to say the least. In summary this was the last chemo treatment. If this chemo does not reduce the leukemic blasts to transplant level AND her other systems stable, there will not be a transplant. Without transplant, her leukemia is terminal. We will know the results by next Thursday. Should the chemo not work, then decisions will be made by Bri regarding quality of care and end of life options. I apologize for being so blunt and factual but it is the medical reality of where she is. We believe that you who are her family and friends who love and care about her should know.

I cannot, at this time, elaborate or reflect as it is far too overwhelming. The bottom line is we trust and believe God. We grieve and we hold onto Hope. I pray for a miracle that looks like healing for Bri here on earth. A miracle will happen that I know one way or another it will happen.

Time For Prayer

2008-05-13T21:54:00.002-04:00

(Joshua reporting):

Brianne needs a lot of prayer right now - she's about the same, but we're facing a dire situation regarding the bone marrow transplant and the leukemia. The doctors told her on Thursday that they have about a 1 month window to do the bone marrow transplant, and if they don't do within a month, then they probably won't be able to do it. A number of factors are involved including: keeping the donor on standby for so long, the amount of chemo Brianne has had already & the side effects, and the fact that they've given her most of the chemotherapies that work for her kind of leukemia and they haven't yet worked as they wanted. So we need to pray for a miracle: that she'd go into remission, gain strength, and that they'd be able to do the bone marrow transplant. She received chemotherapy today and it's the last that she'll get until they make a decision about what will happen in the future. She won't get any more chemo over the next few weeks and it's especially important that today's dose has the desired impact of putting her into remission.

In other news for Brianne: her sharp pain in her side has gone away and the pneumonia is pretty much under control. They didn't put in the new pic-lines until yesterday, and that went without any major problems. She is still pretty sickly, tired, and fatigued. The chemo she got today made her throw-up twice and made her very nauseous. They won't let her out of the hospital for a few more days as she still has a fever and until that goes down, she'll be stuck there.

Still in the Hospital & in pain

2008-05-08T09:17:00.003-04:00

(Joshua Reporting):

Brianne is not doing well - she's in a lot pain, very tired, and just plain not well. She's been having trouble breathing because of the pneumonia and is in a lot of pain. They took her to get x-rays yesterday for her lungs and chest. She's having a very sharp pain in her side that keeps her from sleeping and makes her very uncomfortable. The PA said the pain is probably in her lung and comes from a combination of the pneumonia and the lung biopsy they did on Monday (or Tuesday?).

They're going to up her pain medicine and try to get her feeling better, but in the meantime, she's very upset, hyperventilating, and just struggling. She also has a fever, and we don't know when they'll be letting her out. It's really hard seeing her like this - she's like a weak, drowsy, wheezing, zombie.

(Update)
They'll be putting a new tripled lumen IJ/EJ line line in for Brianne that'll feed right into the jugular. It's a relatively minor procedure that they'll do in her room this afternoon. The nurse said the old tunneled pick line could be causing the infection and quite often the pic lines cause infections for patients. The new line will also have three things (the old one had 2) - i don't know the official title for "things," but she has these lines that they've put into her chest so they can giver her blood and medicine and now she'll have 3 instead of 2 so they can give her more blood and medicines (this was a planned addition and is not b/c of the pneumonia). All of this can be a bit confusing - especially when you read about it instead of seeing it.

Also - the nurse said that she'll likely be in the hospital for 1-2 weeks, so she probably has another week, but could get out sooner - it all depends on how she reacts to the medicines and

The One with the Test Results

2008-05-05T19:12:00.003-04:00

Good Evening,
This is Brenda reporting.

We just found out that Bri has strep in her blood and pneumonia. She will be getting a lung biopsy tomorrow to determine if it is fungal. They will not be doing the scheduled bone marrow biopsy as her blood work stills shows leukemic cells and therefore is not needed. They said although she did show some response to the chemotherapy it is not as much as is needed to proceed with transplant. She will need another round of chemo next week. She feels very sick today.

She is getting more scared as am I. I am praying and crying out to God. I know He is present and will never leave or forsake us but, it still hurts. Occasionally fear tries to plague us and blocks out the light/life we know lives within us. We pray and hold on to God. We feel, sense and know the prayers of all our friends/family is sustaining, strengthening and comforting us. thank You so very very much. It is His love that truly sustains us and we are thankful to be recipients of that expression through His body of you, our dearest of friends/family.

Thank You to all who have visited, sent cards, notes and calls as it is encouraging to her. If you are in or going through Atlanta please come by for a minute if you can. You can call me to see if she is up for a visit. Bless you all, we will update again in a few days.

The One From The Hospital...

2008-05-03T19:14:00.002-04:00

So after waiting for hours in the ER I was finally admitted at 3:30 am this morning. I was sooo tired. I still am. Anyway, I'm here at Emory doing my sick thing. :) I kind of feel like I have the flu. All achy, sore, and fever-ish. I have a cold so I know I'm fighting that. The blood cultures haven't "grown" anything yet which is great news. That means so far no infection!!! I'm on IV antibiotics and fluids to help keep my fevers down. We aren't sure what's going on, so the doctor wants to keep me a few days for observation. I'm trying to stay positive. I am very tired these days. I don't know what has happened to all my energy. I think someone stole it... I'm pursuing what leads I have. Thanks for all your prayers. My brother has been so helpful with keeping this blog updated. I have a hard time with that b/c I get so tired so quickly. That is why my posts are so short. :) Ya'll take care. And enjoy the rest of the weekend.

E.R. Visit

2008-05-03T00:23:00.002-04:00

(Joshua reporting):

Brianne is back in Atlanta for the weekend, and she decided to spice things up by running a fever. She has not been feeling well all day, and if she gets a fever she has to check into the hospital, so right now shes' getting checked in at the ER and will be whisked away to the E wing for observation, medicine, and being awakened every hour or so by the nurses.

Pray for her as she of course didn't want to be hospitalized again. Pray that the infection isn't serious, will not cause a major setback, and that she'll be back at the Hope Lodge soon.

Home for a Few Days

2008-05-01T20:30:00.002-04:00

(Joshua Reporting):

Brianne came to Macon Wednesday and will be here until here appointment on Friday (tomorrow). She's been doing well as far as feeling sick and being sick, but this week she's just been very tired and not well but not sick. While not having fun, it's better than being sick.

We met with the doctor on Tuesday and discussed what's the plan and here it is: Brianne will have another bone marrow biopsy on Monday (the 5th). They will continue to monitor her counts to decide about chemo and the transplant, with Brianne likely getting chemo sometime the following week (the 12th-16th). The transplant is tentatively schedule in the 1-2 month window, again depending on her blood and what it tells them.

Again - be in prayer for her spirit, health, blood, and that they can do the transplant soon.

No real news or anything big, we're just waiting and will be doing that over the next few weeks.

FREEDOM!!!!!!! (In my best Mel Gibson voice)

2008-04-24T22:19:00.002-04:00

Brianne's getting out on Friday and will return to the Hope Lodge. She's disappointed because she wasn't let out today, but they wanted to observe her overnight and make sure everything's ok. She's responded well to this round of chemo, with fewer side effects than in the past. It's still wait and see till probably early next week to see what the plans are.

Update

2008-04-23T22:03:00.004-04:00

(Joshua posting):

Sorry about the delay - no one really felt like doing this the past few days, so I've been drafted to update the online world.

Bad news - On Friday, the doctors told Brianne that her blood indicated the leukemia still remained and they'd have to give her more chemo and reassess her situation. She was quite upset and came home to Macon for Saturday and Sunday, and we hung out for the weekend and she visited with her friend Leeann. On Monday, they re-admitted her to the hospital and began chemo on Tuesday. She received chemo on Tuesday, Wednesday, and tomorrow (Thursday) will be the last day, with Brianne getting released on Thursday evening or Friday. This round has not been as bad on her as some of the past rounds and she's in better spirits and better physically. We'll have to wait and see till next week what the long/short term plan is; it mostly depends on what her bloodwork says.

The chemo she got this week is part of a clinical trial one of the Doctors here is heading up, and they'll have to check her blood and strength to decide the future: Basically, they have to get her leukemia levels to a very low level AND she has to be physically strong before they can do the transplant - this is almost a conundrum because after she gets chemo, she's very weak and by the time she gets her strength back, the leukemia has come back. During February, when she was on schedule to get her transplant, she was both strong and had very low leukemia levels, but they waited a bit too long to start the transplant and the leukemia came back. They should be able to get the levels low and head towards transplant, it's just that this time, they'll have to be more vigilant and watchful and pull the transplant trigger as soon as possible.

Today (Wednesday) was her Birthday and she was happy and sad. She had some visitors which helped her spirits, but she's still dealing with the anger/frustration and unknown. One thing I was thinking about today is how so much of this process is a trial-and-error ordeal. They put Brianne on one regiment for a while and it works, then it doesn't, so they do something else. Despite our advances in modern medicine, so much of it is limited in what it can accomplish - most importantly, they can't address the spiritual/emotional aspect of this whole ordeal, although Emory does have chaplains and counselors for patients. I'm also struck by the fact that so much is unknown such as: will she be in the hospital next week?, how long till the transplant?, how many more setbacks?, how much more "trial-and-error?", will she still be fighting this in a year, six months, 3 years, etc.?, and the list goes on.
- All of it just drives me to a sense of despair, helplessness, and utter uselessness. I'm nearly constantly reminded of God's sovereignty in all situations AND his immense love for His children: two critically important thing to remember. God is in control and He knows what He's doing, and that gives me comfort although I'm still fearful and scared. The words from the hymn "All must be well" have brought me some comfort over the past few days:

All Must Be Well

1. Through the love of God our Savior, All will be well
Free and changeless is His favor, All is well
Precious is the blood that healed us
Perfect is the grace that sealed us
Strong the hand stretched forth to shield us
All must be well

2. Though we pass through tribulation, All will be well
Ours is such a full salvation, All is well
Happy still in God confiding
Fruitful if in Christ abiding
Steadfast through the Spirit's guiding
All must be well

3. We expect a bright tomorrow; All will be well
Faith can sing through days of sorrow, All is well
On our Father's love relying
Jesus every need supplying
Yes in living or in dying
All must be well

Our situation of "being well" does not depend on how hard we believe or how much work we do, but in how much Christ believed and the work He did - two things which will never change and can never be erased. Our own belief and work collapse like a house of cards in the slightest of breezes, but we have a firm foundation that holds onto US even when we let go and flee, and the shepherd goes looking for the one lost sheep because His love is so deep for that one. We are not well because we have money, power, status, looks, or any other fleeting thing or even because we have uber-faith (or the outward appearance with which we convince others and ourselves of our sincerity), but are only happy when we are with Christ, and it's a happiness/wellness that can't be taken away b/c it's Christ that has done the work, not ourselves. You can listen to a clip of that hymn here (the link is actually to the site for a CD and if you click on song #10, you can hear the song (the rest of them are pretty good too, if you're interested)).

P.S. - Sorry if this blog is too long, but you don't have to read it :)

The One where we are Holding our Breath

2008-04-17T08:11:00.003-04:00

Brenda posting today

They did a bone marrow biopsy yesterday to see what effect the chemo has had. If the marrow is leukemia free then we proceed with transplant on April 30th. We are holding onto HOPE. It is important that Bri stay as healthy as possible. We had another family adjustment/stretching as Calvin, Tyler and I have had the flu. I haven't been able to see Bri in almost two weeks now. I developed sinusitis and bronchitis so it has pushed back my being able to be with her. It is very hard not to be with my girl but we cannot take ANY risks which may compromise her health. The boys as usual have been very helpful in taking care of her.
If anyone would like to visit (Must be healthy, not recently exposed to colds/virus)Bri now would be a good time. If you would like to be Bri's caregiver for a day staying overnight at the Hope Lodge just let me know via email btsavatewa@yahoo.com or call 229-506-3221.
We always thank God for your support, prayers and encouragement. We will let you know the results asap.

Life

2008-04-10T19:50:00.002-04:00

Hello to all. I know it has been quite some time since I have posted. I am sorry. I hope that this finds everyone well. After what seemed to be an endless fight, I am finally feeling better. As you have read in my mom's post, sickness has filled my days and nights. I just couldn't seem to shake the awful feeling of weakness, tiredness, and exhaustion. I spent many nights in tears because I just didn't feel like I had the strength to go on, to keep fighting. I screamed at God. I was so angry about the relapse and all I could think was how unfair all of this was. One thing that God showed me through all of that was that I was right. I didn't have the strength to do this. To fight this thing on my own. I HAD to rely on Him and Him alone. He showed me that this trial is meant for more than my own spiritual growth but to minister to others and support others through their trials. I felt so unworthy and unprepared for such a task. I cried and cried...and then it was as if someone had wrapped their arms around me. I literally felt a comfort beyond any physical thing. It was a feeling of love and support. God lifted me up. He lifted my head and held me. I can't describe how amazing it felt. I just knew He would pull me out and through. I have been holding on to that. That I know is truth. My spirits are higher, but my blood counts are not. Please continue to pray for physical strength. I need it now more than ever. God bless. I love you all.

The Mange

2008-04-08T17:24:00.002-04:00

Joshua reporting:

Brianne doesn't have mange, but she's starting to lose her hair again and it's coming out in patches, making her look like she has mange.

She's doing a lot better and they're talking about letting her out on Wednesday or Thursday and she'd only have to come back to the clinic every day to receive the remaining antibiotic treatments. She'll still have to stay in Atlanta and will be in the hope lodge. She's especially doing well with her spirit and demeanor which have which have both greatly improved.

We'll let you know if they let her out.

The One where we are Back in the Hospital

2008-04-04T21:31:00.003-04:00

Post by Bri's Mom, Brenda

Last Thursday was a VERY LONG DAY. Bri started her day at 9 am in the clinic for blood, platelets, fluids, potassium and some antibiotics as she began running a temperature. We were the last ones to leave the clinic at 7:45 pm. She was sleep deprived and achy all over. By the time we got to the Lodge she was ready to fall in the bed and sleep. Just as she got snuggled in her bed I took her temperature, it was 102.6. We took it four times and I checked my temp to be sure the thermometer worked. It worked. We both knew what it meant, a call to the doctor and admission to the hospital. Bri was discouraged, disheartened, and a little scared. We did get some good news and were very fortunate to get the last bed on 7E at 10:00 that evening. Thankfully we were able to go thru the ER to the room where she spent the rest of the evening getting poked, plugged, pumped and prodded. She got everything infused in her except sleep.

Her temp finally broke Saturday morning. We found out she had a bacterial infection in her blood and a strep infection. She has been getting more blood and platelets every other day. Last night she had another prolonged nosebleed that discouraged her meaning her platelets keep dropping. She has had diarrhea for two weeks now resulting in dehydration. Last week they ordered home health to give her daily infusions of fluids at the Lodge to keep her hydrated. She has had no appetite and lost 23 lbs in ten days. Additionally, she has open sores in her mouth. Thankfully, they have something to give her for every thing she is going thru. But the side effects of all the meds keep her nauseated. We also found out she will have to be in hospital for awhile as she will need 14 days of iv vancomyician

So, as you can see Bri gets down. We do feel the prayers of friends and family and we cannot say thank you enough. We know we have to just get through and hold on to God through it all. We do trust God and are learning more about accessing His presence through the pain. It is just VERY hard at times and thats all there is to it. We can take a natural pain reliever such as Tylenol or oxycodone for physical ailments (and that she does) but we have to just experience the pain of what we were predestined to go through. I don't like it but, I pray for healing and cry out to God for my Beez. At times I am comforted by Gods presence, words of truth, prayer, the kindness of others through calls, prayers, cards, and visits. But sometimes we just simply have to hurt. Knowing we are loved and cared for by others is often enough to help us through. We know you are out there praying for us and loving us. Thank You.

Will give another update in a few days.

Update

2008-04-02T21:35:00.002-04:00

Brianne is getting better today and was a bit cheerful and energetic today. She was feeling better until this evening and crashed, but it's still nice to see some improvement in energy and disposition.

She started getting fluids today from the home health nurse and that went well without any problems. Otherwise, it was a pretty uneventful day.

Joshua

2008-04-01T22:32:00.002-04:00

Schedule:
Bri goes to the clinic every other day for labs, Dr., Infusion, tx. She went today, got more platelets, iv fluids and they are ordering home health to give her iv fluids at the lodge to help with the dehydration. She has lost 24 lbs. in 10 days. As they told us they will be watching her closely.
Visits:
Any day she is not at the Clinic which this upcoming week is Wed 2, Fri 4., Sun 6., Tues. 8, Thurs. 10, Sat. 12. We have lots of other appts. coming up but have not gotten those yet. If you would like to come see the Bri. Just call one of us to see how it works out. Brenda 229-506-3221 and Joshua 478-737-4178. Bri would love visitors, just making sure she is well enough. Visits at this time should be short.

The Hope Lodge

2008-03-30T20:23:00.004-04:00

(Joshua Reporting):

Well, Brianne got out on Wednesday and has spent the last few days here at the Hope Lodge. The Hope Lodge is an amazing facility set up by the American Cancer Society and is totally free with a doctor's order. It has 34 units with 2 beds in each unit (1 for the patient and 1 for the caregiver), a large spacious kitchen and common areas, is close to Emory's campus, is rather secluded, and has a beautiful view of the nearby woods - you'd never think you're in the middle of Atlanta. When I first came up here on Thursday, I was overwhelmed by the place - it's an amazing blessing. The staff here is great and the other patients are welcoming, friendly, and great for conversation.

Update on physical health. Brianne's leukemia is back and right now she is recovering from the chemo she got last week. She's been exhausted all weekend and sickly. She'll get up for a few minutes to walk downstairs or walk around and before long she is too tired or has to go the bathroom. She's barely eaten and is mostly only drinking water and gatorade. This morning, we spent 6 hours at the clinic getting 2 bags of blood, fluids, potassium, and platelets. She perked up for a little bit after getting fluids, but was tired again within an hour or two.

Emotional/mental/spiritual health. As you know and can tell from her last post, this entire ordeal has been very trying and the last two weeks have been really disappointing as the transplant date was pushed back again and Brianne hated having to have chemo AGAIN.

Keep her in your prayers for physical strength as the side effects from the chemo can be devastating. Also pray that she would feel God's love and presence through this hard time (we know it's there, it's just sometimes hard to feel/see). This morning she met Ann Something from Smyrna who was diagnosed with ALL leukemia last week and the two of them had a really good talk about God, faith, and illness - it's a wonderful thing to see the people God puts in our lives especially when we really need them. Those wonderful people include all of y'all out there in computer land - she really appreciates your prayers, letters, comments et al. Here's her address for the Hope Lodge:

Brianne Tsavatewa Room 212
1552 Shoup Court
Decatur GA 30033

Joshua signing off. - (Also - you can click on the title "Hope Lodge" and it'll take you to the Decatur Hope Lodge website)

Unsettled

2008-03-25T11:12:00.004-04:00

I'm so unsettled. My mind, my body, and my emotions. I just need something solid to hold on to. I turn to God and pray, but there is a frustration because I can't see Him. I can't physically be held by Him. I'm so angry and I just want this to be over. Oh, God I cry out to you. Hold your child. Please Lord wrap me in your arms. Give me the strength I need to carry on. It seems too hard to keep pressing on. It feels so overwhelming. Heal me Father God. I need You more than anything in this world.

Shocked

2008-03-24T15:26:00.002-04:00

Hello, This is Brenda, Bri's Mom.

Friday afternoon the doctor told us the lab results and comparisons to Tuesdays lab and biopsy. Her white count had doubled in two days and her leukemia blasts were around 30%. I was shocked and just broke down crying as I asked does this mean what I think it does? The doctor said it is a very agressive leukemia with poor prognosis and we need to be just as agressive in treatment. He went on to explain what treatment should look like and to expect they may keep her in the hospital until transplant. Additionally, if all goes well without major complications the earliest time transplant is possible is four weeks. We are praying for the four weeks. As more info comes we will update you.

I just can't believe it.

2008-03-23T20:00:00.002-04:00

By now I'm sure the majority of you all have received an email from my mom about the return of my leukemia. This insane turn of events has thrown me for some loop. I was admitted again to Emory University Hospital. This time for the long haul. I wasn't aware that I would be staying here for an extended amount of time. Over the next few days I will have more information I'm sure about what the time line is going to look like, but my doctor did say that they will most likely not be sending me back home. It could be six weeks before I get out of here. I will be posting things that I need or fun things I would want. Mostly I need and your prayers. This chemo that I am undergoing right now is taking full affect on my body. It causes me to be extremely tired and I am constantly worn out. I am so tired right now. I will finish with this tomorrow. Sorry for the short ending. Check out Isaiah 40:28, "Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and His understanding no one can fathom."

Bad News

2008-03-19T19:39:00.005-04:00

Hello Everyone, This is Bri's Mom.

It has been a long while since I posted. However, I am reaching out in a time of need with a request for prayer. Brianne was really doing well and preparing for her bone marrow transplant set for April 9th. She has been undergoing all the preparation, tests and procedures. Last week we had a very rough day with the radiologist upon hearing the finality of her not ever being able to conceive a child due to the chemo and radiation that is coming. We grieved and have been practicing acceptance in the light of what we are hoping for.... a cure. We hold on to Hope.Yesterday, Bri had a bone marrow biopsy and the doctor expressed some concerns they discovered. He called us today with the results/confirmation....The cancer is back....... We were told she will not be able to proceed with transplant on the 9th, she has to undergo another type of treatment and will be admitted to Emory tomorrow. In asking the doctor what happened he explained with her chromosome abnormality, the prognosis has always been poor, no cure with chemo alone, therefore transplant is the only possible cure. They just could not predict the very fast rate of return while we were preparing for transplant. Obviously, it is a very fast replicating cancer. The new treatment plan is intensive 5 day chemotherapy in-patient with a different type of chemo and very close monitoring, then allowing her body systems to recover and gain strength. As soon as she is cleared (which could be a matter of several weeks) then move to transplant as soon as possible. The requirements for transplant are: Must be in remission and system (organs) ready (recovered from effects of chemo). We are all shocked as things had been going so smoothly and this was the last thing we expected. Fear has gripped me and is wreaking a little havoc in my thoughts. We had been told how serious her diagnosis was, the prognosis and treatment expectations but everything was going so well and I just felt like everything was going to be okay. I do believe that it will be okay but as I said I have been jolted into the reality of the relentless disease of cancer.
All this being said, I am asking for your prayers, I thank you in advance for them. Again, I thank you for all your support and prayers. By the way, even though it is hard at times to hold on to Hope, I know I can rest in the assurance that Hope holds on to us, He always has and He always will. Each of you are a part of that same Hope and I thank you for being there for us. Bless You all. Will share more later.

A Final Date (Hopefully)

2008-03-07T11:29:00.000-05:00

I got "good" news yesterday morning. The donor has finally confirmed and they have reset my transplant date. The new date is April 9th (well, five days after that). This pushes everything back, but at least this time it is final. I start back next week going to the doctor every couple of days and I have an entire day of testing coming up. I wish it was a test over the material that has just been taught, but no. There is no way to prepare for these test. A day of EKG's, ECHO's, pulmonary function tests, physical, CT scans, blood tests, bone marrow biopsy's, and lumbar punctures (spinal taps). All of this in one day...aren't I lucky. I hope that things will go smoothly. I'd really be grateful if you could keep me in your thoughts and prayers on that day (March 18). Other than fighting the cancer my life has been pretty much the same as it has been. I have joined a writing group up in Atlanta. I had forgotten how much I loved to write and share my thoughts with others. There is a safety in exposing yourself to strangers. We have fun. All the other writers are older than me and have much more experience than I, but we still learn from each other. :) I love it. I have some fun news. If you haven't seen me in a while I guess this won't be as exciting for you, but I'm sharing none-the-less. My hair is growing back! Not just on my head, but my eyebrows are coming back and I have a tiny little fuzz on my forearms... no leg hair, armpit hair, or eyelashes yet. :( But I'm super excited about my hair growing back. I'm not longer Lex Luther (the Kevin Spacey version). The funny thing is that it seems to be coming back lighter. Hmmm...could we have a blonde Indian on our hands...?

Today in Atlanta

2008-02-26T17:55:00.002-05:00

Mom and I got up at 5 this morning to make my 8 am appointment in Atlanta at the clinic. Yuck! The traffic was awful and the weather seemed to match. Needless to say we ended up being 40 minutes late (that's right 3 hours to drive from Macon to Atlanta). So good stuff going on. The doctor said I'm looking really healthy. My counts are great...and I'm doing great for pre-transplant. My tentative date for Bone Marrow Transplant (BMT) is March 19th. We are waiting on confirmation from the donor and until we have that everything is tentative. We will all be more secure when it is all set. I think the whole family is anxious (I know I am). They say that the BMT is really anti-climactic. Big build up and follow up but the actual transplant is really simple; just like a blood transfusion (and I've lost count of how many of those I've had not to mention all the units of platelets I've received). The nurses call the transplant date your "other birthday." It's amazing. Someone out there is giving me the chance to keep going. God blesses. I'm feeling really great. I have been walking lots lately. I thing I'm starting to settle into this whole thing. I'm not as anxious. I'm realizing what a huge opportunity this is for God to teach me something and to allow Him to work in my life. I am so thankful. I'm thankful for all of ya'lls support, prayers, and continued thoughts. I pray that I am able to one day pass the blessing you all have been to me on to others. Thank you again and much love.

2008-02-21T15:27:00.002-05:00

Hello all. I am sorry that it has been such a long time since I've posted. I really have slacked off here lately. I just returned from a two day trip to NC. I loved every second of my visit. Joshua drove me up to Sylva (aka James's and Judy's) on Monday and then on Wednesday night after youth group (8:30 pm) we left and drove back here to Macon. I got to see some very wonderful and special people while I was up there and it reminded me how much I missed living up in NC. I can't wait till this is all behind me and I can go back home. :) This trip was very different from my previous NC trip b/c I simply got to visit. No fussing with IHS (Indian Health Services). :) Hooray! The doctor's have said that March 19th is the big day for my transplant. Everyday that passes I seem to get more and more anxious. I really don't know how to react to everything that has happened over the past several months. It seems as though it has all gone by so quickly that I haven't had time to figure anything out. Thank you again for all your continued prayers and thoughts.

Update

2008-02-05T22:26:00.000-05:00

Joshua reporting:

So it's been about 2 weeks since our last update. Sorry about the lack of updates and information.

They've scheduled Brianne for a bone marrow transplant on March 10th and the donor is a 10 out of 10 match which is really good. They're working on finalizing all the details with the donor and will be running a bunch of tests on Brianne in preparation for the transplant. The doctors have stopped giving Brianne chemo. so she can gain some strength and stamina in preparation for the transplant as it should be pretty grueling. She's also taken the last of the steroids she had been given which will give her a better mood as the steroids tend to make her irritable (I don't know if she wanted me to say that, but it's true). Getting off both chemo and steroids is really good b/c of her mood and strength.

In other good news, Brianne was approved by Emory's charity care program which will help to cover most of the expenses of the hospitalization and treatments.

So we have two big praises: date for transplant and money so that's great, but keep her in your prayers as anticipation, fear, and apprehension build before the transplant day. Also pray that she'll be gaining physical strength and continuing to remain strong emotionally and spiritually. We're excited about having a transplant date and on the 14th of February we'll be meeting with the transplant team to discuss the transplant and "aftermath."

Joshua checking out

Is it actually happening?

2008-01-25T21:47:00.000-05:00

As some of you may know, I am back up at Emory right now. I have spent the last 5 days here receiving even more chemo. (For those keeping track: Part 3A of the Hyper-CVAD) I was sitting here today thinking about how different life is for me now. I just could bring myself to believe that all of this is actually happening. Early this week I received a phone call from the transplant coordinator, Cheryl. She wanted to tell me that everything had been approved and after she found out what my doctors had planed for the rest of my treatment that she could set up all the appointments and dates for the bone marrow transplant, but until we have specifics all she could give me was an estimation. The tentative date for transplant will be March 10th. It is later than we were told originally, but we trust that God has a purpose for having us wait. I have to be honest. I don't think I've ever been so afraid in my life. When the doctors first told me that transplant will be my only option for a cure I was confused and unsure of what that really meant. Now that I've had time to mull that over in my head it seems to be all I can think about. This is it. This is my last chance. I am so scared right now. I want to say that I trust God through this all, but sometimes I just can't see Him. I just feel so alone. In my heart I know that truth, but isn't it okay to want the feelings too? Please continue praying. I need it now so very much.

It's been awhile...

2008-01-15T10:26:00.000-05:00

I haven't posted in awhile and I'm sorry. :( This week has been really hard. This last round of chemo made 5 rounds and the medications build up in my system. My body is having trouble recovering. I've had to have whole blood and platelets about every third day since I got out of the hospital. These kind of things really discourage me. My white blood cell count still isn't rising. Hopefully the bone marrow transplant will be soon. We asked about it the last time I was in Atlanta with the doctor, he said we should be getting some answers soon. I hope that your new year has been wonderful. Thank you so much for your prayers and support.

A happy evening

2008-01-14T19:06:00.000-05:00

A Happy evening in NC having dinner with Christopher and my dear mountain friends

Nose Bleed and Fatigue

2008-01-08T18:47:00.000-05:00

Joshua reporting (again):

Brianne had a pretty bad nose bleed yesterday and spent most of the day at the hospital (after just getting out). The ordeal made her very tired and down. After the nose bleed, Brianne began feeling sad and thinking more about leukemia, the side effects, and the general state of her being which was a bit depressing. Keep her in your prayers for the physical, spiritual, and emotional side effects of this entire affair. She has a doctor's appointment on Thursday and maybe we'll get some good news and a possible date for transplant.

Free At Last!

2008-01-06T20:17:00.000-05:00

Joshua reporting:

Brianne got out today and was very happy to be freed. She was hoping to get out yesterday, but had to remain b/c the levels of chemo were still too high, so they kept her an extra day and gave her some more medicine to lower the levels. She was feeling lonely and sad after being in the hospital for the week - it's not too much fun to be cooped up in the hospital. She also didn't eat anything all week as she was nauseas and sick most of the time. We're happy she's home and starting to feel better - both physically and emotionally. She has an appointment Tuesday and maybe we'll find out more about the Stem Cell Transplant (specifically when).

Back in the Hospital

2008-01-01T15:11:00.000-05:00

Happy New Year!!! I'm back up here at Emory getting the second round of the "b" part of my Hyper-CVAD chemo treatment. I'll be here until Saturday. I talked with my doctor today and since the holidays they haven't been having regular meetings but starting back on Monday they will be discussing setting a date for my transplant. Hopefully we will be getting answers soon about exactly when everything will be starting. I find it harder to keep posting. Things don't really change much these days. When I get out of the hospital I go home and just hang out. Mom says I could clean my room. (ha! Like that's going to happen.) Nothing exciting going on in my life. I have really started to miss working. :( Mom has been telling me about how this is good for me. Learning how to be still, but it has been hard. I hope that every one's holidays were fun. Thanks for your continuing prayers.

Good News?

2007-12-19T22:03:00.000-05:00

I have good news. Right before I went into the hospital last Monday I had a Bone Marrow Biopsy ("loads of fun," I bled on the resident), and yesterday we got those results back. I am technically in remission! :) We are so excited. If you have been reading and keeping up with this blog you may know that my cancer isn't curable with chemo only. So, we know that the cancer will be returning as it did in the past (unless there is a miracle). But the good news is that, as I continue with chemo, if the cancer stays like it is right now my body is in a perfect place for the transplant. I'm sure there is a better way to say that, but I'm really tired right now, so I guess that will do. :) I'm really happy about the results, but it still sucks that I have to keep doing the chemo. I go very early tomorrow morning to Atlanta to have more chemo and another doctors appointment. Thanks so much for your continuing support and prayers. Happy Christmas!!!!

My Rickman Reservoir

2007-12-14T15:54:00.000-05:00

Sick and Tired

2007-12-14T13:27:00.000-05:00

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

Back from NC

2007-12-11T11:23:00.000-05:00

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!

The Looooooonnnnggg Day

2007-12-05T22:30:00.000-05:00

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.

To understand the imposible.

2007-11-28T22:55:00.000-05:00

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

2007-11-28T20:40:00.000-05:00

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

2007-11-26T09:28:00.000-05:00

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

2007-11-22T17:55:00.000-05:00

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

2007-11-18T21:49:00.000-05:00

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

2007-11-14T12:02:00.000-05:00

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.

2007-11-11T00:28:00.000-05:00

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.

Hard Days

2007-11-05T23:08:00.000-05:00

I'm sorry I haven't posted in a few days. When I came home on Saturday I wasn't feeling well at all. I had been totally wiped out from the new chemo. Sunday morning I spent very sick to my stomach and just feeling puny. By the afternoon though I began to feel much better. This morning mom took me out to the mall to walk around and get a change of scenery. Monday mornings are a great time to go to the mall by the way, no one is there. :) But just as I was paying for something I got a nosebleed. Never a good thing. I had been having some bleeding since last night, but then with the nosebleed we had to call the doctor. I was really upset because I know that if lab results came back saying my platelets were low I was going to have to be admitted again for another transfusion. I spent all afternoon sitting and waiting. The crazy thing is that this is going to be my new normal. The labs did come back okay so the doctor at Emory said I just may need to come back to the clinic a day early. I have an appointment on Wednesday, but they said they may want to see me tomorrow. I feel puny now, tired and just frustrated because I have absolutely no control over what my blood is doing. Oh , well. Keep praying please. Things are really hard right now. The new chemo is very hard and is making me very sick. I love you all. God bless.

Going Home Again

2007-11-03T09:11:00.001-04:00

Well, after spending an exhausting week in the hospital I get to go home. I found out this week what my new chemo is going to look like. It's going to be hard. The beginning of the week was okay, but towards the end I began to feel sick often. I will be back in the hospital around turkey day. Woo hoo. Hospital Thanksgiving Food!!! I can't wait. :) Thanks for your prayers. I will probably post again today when I get home. When I can sit down and sort out my head. I'll give some more detailed information about what is going to be going on with the new treatment program. TTFN.

Just the Facts

2007-10-27T16:33:00.000-04:00

Just a few fill ins for everyone. The Dr. called Brianne Thursday evening with the treatment teams recommendation. She begins the new treatment protocol this Monday at the hospital, Emory, and will be inpatient for a week depending on healthy she remains. The change in treatment protocol is due to a 1% level of leukemic cells remaining in her bone marrow. Although 1% sounds good, it is relative due to many other factors, most importantly it is not where she should or had expected for her to be at this point due to the type of previous aggressive treatment. The main factor that must be considered and is directing treatment has to do with her chromosome 11 abnormality which indicates her being at high risk for the leukemia replicating and returning. Therefore, the doctor/team says it is in her best interest to begin preparation for bone marrow transplant. This is a very lengthy and involved treatment and will involve several months preparing. We do not have details at this time and have many more questions than we have information to share. As we find out more during the weeks to come we will provide more information. We know we will have more frequent hospital stays and outpatient travelling through the weeks ahead. Again, will know more later and share what we know.

What we do know. Fact #1 "Brianne is His workmanship created for good things in Christ" Fact#2 the chromosome 11 abnormality is no surprise to the Creator and Redeemer and Healer of ALL things. (the pun very much intended) Fact#3 "Thus says the Lord who created you who formed you: Be not afraid, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. For I-AM the Lord your God…You are precious in my sight, and honored, and I love you… Be not afraid, for I am with you… Isaiah 43

I have found comfort in many scriptures but ran across this truth yesterday and was brought again to a place of peace within. "Not grace to bar what is not bliss, Nor flight from all distress, but this, The grace that orders our trouble and pain and then in the darkness is there to sustain. Grace is secure. And no failure or suffering or struggle, darkness or trouble can keep us from God's secure grace. It remains. It endures. And by grace we are kept. By grace, and grace alone... (J. Piper)

Thank You seems such an inadequate word to convey our appreciation for the love and prayers shown to us but please know how grateful and thankful we are for all of you being a part of our lives.

With Sincere Thanks, Brenda and the Indians

Certain

2007-10-26T17:50:00.001-04:00

I'm sure now. I'm sure that I don't understand why God allows somethings to happen. I am sure that God will sustain me through this and through the rest of my life. I am sure that there is a reason for this battle. I got the call from the doctor. I will have to return to Emory for another stay in the hospital. This time will only be for 5-7 days (depending on my cell counts). The doctors have been running tests and doing studies and have found an abnormality in my 11th chromosome which puts me in a high risk bracket for my type of leukemia. Translation: that even if the chemo knocks out the cancer this time around (which it didn't do with this last treatment protocol) the chances of the leukemia returning are at a much higher percentile. I will be undergoing a bone marrow transplant. On Monday afternoon I will return to Emory in Atlanta for a short stay (hopefully) to begin a new chemo treatment regimen. I will be spending the majority of those days hooked up to an IV receiving continual chemo medications. I'm NOT looking forward to this. As I will not be at the hospital for long I shouldn't receive mail there. My Macon address is still the primary. I will post my bedside number when I get it, but ask for no calls before 9am and after 8 pm. With this bout of chemo, I am going in not as strong as the last time, so I am anticipating some illness. This treatment will be much harder than the last as it is much stronger. So I am asking for continued prayers of strength and wellness. After I am released I will be coming back to Macon and then the doctors anticipate that I will only have to return to Emory twice a week for my out-patient treatment. This out-patient treatment will be done in two cycles, an A-cycle and a B-cycle for 21 days each. This will be preparing my body for the transplant. Please pray for possible donors, matches, and for God's will to be done, shown, and understood in this situation. Thanks so much for everything. I love you all. And miss you all. Please feel free to email me at any time.

Uncertain

2007-10-24T16:40:00.000-04:00

Well, I went to see the doctor Tuesday. And I still don't have any more answers today than I had last week. We are unsure of what the next move in my treatment will be. The doctors have said that I am still showing active leukemia cells in my body and with that in mind, I am going to have to come off of this particular study and protocol for treatment. As it is not in my best interest to continue with just chemo, they are saying that I most likely will be looking at a bone marrow transplant. I'm not excited about this possibility. But as I stated earlier, we are still really unsure of what the next move is since we are waiting back on some more test results. We should be getting those answers today... So please keep praying. I've been feeling very lost and uncertain about where God is taking me and how all of this is going to work out. Physically, I really think the medicines are catching up with me. I'm very very tired often and in some pain, but I press on. I often don't really feel like myself, just kind of lost and confused and discombobulated. When we hear from the doctors there will be a full report and what the next move will be. Many of you have asked about being tested to see if you are a possible match to be a donor. I don't know how you get tested, but I am going to find out. And will post those answers here as soon as I know. Thanks to all of you and I love you and miss you.

Tuesday is the day

2007-10-21T22:15:00.000-04:00

This weekend has been so full. My entire family has been here all weekend. Both brothers, the grandmother, the Tyler, the mother, the sister-in-law, the step-dad, and the sicky. Full house. It has been wonderful. It has also been stressful. I went to Atlanta on Thursday and had all those wonderful procedures done that I've learned to just love (NOT). I have an appointment Tuesday with the doctor to discuss my treatment options based on the results from my biopsy. I also have chemo scheduled for that day, so needless to say I'm excited. HA! So, Tuesday is the day. Be praying for amazing things Tuesday. I am.

Bad Day

2007-10-18T16:48:00.000-04:00

Today has been a not so good day. I had an appointment in Atlanta this morning at 8:30 am. Gross. First I went to the lab for blood tests. My blood counts were very good. The doctor was very pleased. Then on to see the doctor. It was a quick visit, but she cleared me and said I look great. Then the hard part came. I knew that I was going to be having chemo today and a bone marrow biopsy, but they surprised me with a spinal tap/lumbar puncture. My spinal fluid was clear which is what you want. :) When they did my biopsy they had to pull several times so I am in quite a lot of pain. I am going to be spending my afternoon and evening being a baby. :) I'm very excited because my entire family will be here in Macon with me this weekend. I can't wait to see them all. I have another appointment in Atlanta on Tuesday morning. I will be meeting with my doctor and his P.A. to work out my treatment plan. We thought we would have that today, but we have to wait on the results from the biopsy. So be praying for good things in my marrow. The harder it is for them to see the cancer cells the better. :)

At home?

2007-10-17T01:07:00.000-04:00

Today is Tuesday (even though technically it is Wednesday). I have been "home" a total of two days and it is wonderful. I love being with my family. As many of you have read in previous posts, I have been living in North Carolina for the past year in the small town I had moved to Georgia from many years ago. Sylva. Since I need help with many different areas of my care (my family would say I just need help, period), it behooved me to "move" back to Macon Georgia and live with my family. I am still contact-able. The address here is 539 Moss Hill Drive Macon GA 31204. Also, I check my email hourly (really I do). I would prefer not to have tons of calls right now. I am tired often and I do not answer my phone if I don't recognize the number. This new transition is going to be very hard. I am a very hard person to live with, even before the illness. Your prayers for me and my family have been so important. I am living with my mother, little brother, and grandmother. I am going to be well looked after. :) On Thursday I will be returning to Atlanta to start my out-patient treatment. I have to be in Atlanta by 8 am for labs, chemo, and a bone marrow biopsy. Pray for strength through another biopsy. Thank you so much for all the wonderful cards, messages, emails, calls, prayers, and thoughts, they keep my attitude positive and that helps me stay strong. I love you all.

Home

2007-10-14T11:07:00.000-04:00

I'm going home!! The doctors are letting me go home today!! I am so excited. I am feeling great and everything looks good.

Coming Home

2007-10-13T21:22:00.000-04:00

I just wanted to let everyone know that the doctors are sending me home this week. :) I am so happy. I can't wait to get home. Maybe I'll be able to sleep and actually rest. LoL!!! They haven't said exactly what day, but I do know by Thursday at the latest. I have my first clinic visit Thursday. They will be checking my blood counts to determine the send off date. My red blood cell count is high- yay! My platelets are stable- yay! But my white blood cell count has plateaued- eeek! So, focus thoughts and prayers on a raised white blood cell count. I really need them to fight off infection as I transfer back into the "real" world. I'm gonna be one of those funny people at Wal-Mart with a blue mask on and gloves!!!! :) I can't express how much it has meant to me to receive positive feedback here and in all the wonderful notes, cards, and letters in my room. I love you all. And I will continue to post here as I move back home. The doctors will be drawing up a treatment plan based on my next bone marrow biopsy. This plan will tell me how many times a week I'll have to go to the clinic for out-patient chemo. The thought is about 3-4 times a week, but we still aren't positive. Thanks again for all of ya'lls support and love.

Long Days, Short Nights

2007-10-11T15:48:00.000-04:00

I'm sorry I haven't posted in a few days. Even though I only have IV chemo once a week, I get loads of pills daily and they are really building up in my system. I've not been feeling well these past few days. The doctors say that it is normal with the steroids, and many different chemicals that I'll be sore and sick. It's expected. The doctor spoke with me today about my blood counts and they are all up. Good news. So, even though I don't FEEL good, my body is fighting back. :) Today I received my last in-patient chemo treatment. Next week I'll have a bone marrow biopsy on Thursday and then we will be looking at breaking out! The doctors say that I maybe out as early as next weekend. So maybe only one more week. I'll keep you posted as to the exact date, but it is coming. I can't wait. I've been in the hospital about a month and that is a long time. Ahhh! Thanks for keeping me in your prayers.

Good Days

2007-10-08T19:43:00.000-04:00

As the treatment continues I'm really starting to appreciate days like today. I woke up this morning with only a little bit of "sickness." After waking up, I walked around the unit for about 45 mins. It was so nice to get up and move around. As time moves on and the medicines build up in my system, I can really tell how they affect my body. My joints ache constantly and inside my bones are very sensitive and weak. The doctors say it is a combination between the steroids building up in my system and my marrow trying to rejuvenate itself. So, yay for the pain. My body is trying to fix itself. That is good news! The doctors have moved me to increased precautions with contact and having visitors. You must now check in with the nurses before coming to my room. It is for my protection. So I'm just reminding everyone that it might be best to call before popping in for a visit. I love having visitors, but as things are moving on, it is getting harder on me to have so much activity. I find that just doing daily things make me tired and in pain. I do appreciate all the love, prayers, and encouraging thoughts that I receive here daily. I can't wait until the doctors release me and I can come and visit with all you wonderful and faithful friends. If you like you can call my bedside anytime before 9 pm. (I try to get into bed by then) I am always awake by 8 am (I have no choice...the techs start making their rounds. :). All of my contact info is listed here on the site. Thank you again for your prayers. I really can use them at this time. The shock has started to wear off and now the reality of what is going on is starting to set in. I am becoming more and more aware of the fight I have ahead of me. I will press on. Please keep praying for strength and faith. I love you all so much. And thank you for standing with me in this hard time.

Friday

2007-10-05T20:00:00.001-04:00

Tonight's post will be short. I have been in a lot of pain today as a result of the biopsy yesterday. Also the chemo drugs have caused me to feel sick to my stomach. Yuck. I am adding the pictures from yesterday. My mom shaved my head for me. I hope that they bring a smile to your face. :)

Today

2007-10-04T21:48:00.000-04:00

Today was a tough day. It was very nice though that my mom was able to be here with me all afternoon. I'm already feeling the effects of the chemo treatment. Tired, yucky, and sick to my stomach, but I'm encouraged because the doctors say that my body is accepting all the drugs very well. The doctors did not have to preform a lumbar puncture today. Good news. :) And the biopsy went "smoothly." Thank you for your prayers. I really felt them today. Oh, ps. I'm bald now.

Day 18

2007-10-03T16:06:00.000-04:00

Today makes day 18 at Emory University Hospital. After spending this much time in one room you would think I would be tired. Well, I am. Haha. At this point in treatment the best way to describe how I feel is tired. The medicine is building up in my system and is really starting to affect me. Tomorrow will be another big day. I have a bone marrow biopsy, spinal tap/ lumbar puncture, and IV chemo. Today I'm just spending resting. My mom did get to come up yesterday and today! :) My stepdad also made a surprise visit along with Ronnie and Tommy Dampier. Thank you for all your thoughts and prayers. Miss you all.

Nonsense

2007-10-01T11:41:00.000-04:00

I have the pleasure of possessing an active imagination. After spending weeks in a single room can your imagination be asked to remain still and quiet? Mine will certainly not. I keep rolling over and over in my mind the past weeks events and how they came to be. After spending time on the phone talking with many friends and loved ones, I've decided to document my feelings and multiple responses to this life changing news. One question that seems to be reoccurring is what did you first think when the doctors said it was leukemia? To be honest I don't know. I received the diagnosis on Friday, but it was really on Thursday that I think I knew. When they said that they would have to test for leukemia I just sort of knew that is what it was. I wasn't scared, confused, or even angry. I was very okay with it. Looking back that is how I would have wanted it to go. What can you do really? Say no thanks I'll take something else. I had a problem set before me and instead of shirking it off, I accepted. My life has always been full of some kind of drama or another. It would be a shame now, if just because I'm confined to four walls, should that change. With lunacy running high in my family I easily became the cherry on the top. I never wished for some trauma to run my life a muck, but I would be lying not to say that traumatic experiences highlight the lives of those who I admire and call great. I am, for lack of a better expression, excited about the changes this disease will and had brought into my life. For one thing, I have lost weight. I know that is shallow and pathetic, but it makes me smile. For anyone who truly knows me, they know that my self image is less than sterling. Over the past week I've lost a total of 8lbs and 6 oz. (A baby) Also, in the area of losing things, my hair has decided that a vacation is long overdue. I was combing it out and when I say out. I mean ....out. I huge chunk fell to the sink. I cried. But then, all of a sudden I was okay with it. It all became so clear. Then medicine wasn't just pills anymore. The chemo wasn't just fluid anymore. The pain wasn't just temporary anymore. The climax had come and it was real. It was at that moment that I was angry. That moment when confusion had decided to fall. It was at that moment that I was scared that I couldn't do this. I got into the shower and cried. All I wanted at that moment was someone to hold me. Someone to tell me that I was going to be okay. No one was here. My family was in Macon, Birmingham, and Jackson. My friends were taking care of their responsibilities and I was alone. I felt sorry for myself. I was alone and by what I could tell, no one really cared. As I got out of the shower, still crying, it hit me. I am not alone. How could I have ever forgotten? How could I have not known to run into God's hands? After spewing off rhetoric about knowing God has a plan for all this, how could I be so blind? Just like in a movie, I crawled into my bed, wet hair and all, pulled the covers tight up to my chin, and I cried into God's arms. No day is like the one before it even though the same things happen everyday.

Big Brother to the Rescue

2007-09-28T18:35:00.000-04:00

Greetings everyone, I am posting for Brianne as she is tired, not feeling well today and without a computer for a few days. I have been unable to see my Beez as I have had a terribly nagging cold/sinus infection for a week now. Due to the immuno-suppressed systems of the leukemia patients, I am not allowed to visit. It has been very difficult not being with Brianne but, she has had numerous emails, calls and dear friends visit this week. Thankfully, Christopher (Big Brother) was able to leave UAB Wednesday and stayed with Beez at the hospital. I was very thankful he could be with Brianne as Thursday another lumbar/spinal tap with chemo was scheduled. She was also surprised with the announcement of needing to perform another bone marrow biopsy. This one ended up being much more painful than the others, probably due to a weakened system. Christopher said she did remarkably well as he watched the painful procedure in supportive empathy. We should have some results next week and information on her ALL subtype.
We have had a few very encouraging reports to share. Today, during the biopsy they were able to aspirate some fluid from her bone marrow. That is an improvement as in the previous biopsies they were unable to aspirate fluid (due to numerous and tightly packed cancer cells). The spinal fluid was clear and that is a very good sign. Also, her doctor said they have been watching her cells and see a decrease in the cancer cells, so the chemo is doing it's work.
Brianne has had several good days but since Thursdays events and a double chemo treatment she was very tired, achy, weak and nauseated today. She will get a few days break from chemo and punctures for the time being. One week down, two more to go with the inpatient treatment. The prayers from everyone are evident and carrying us through with constant hope. I am overwhelmingly amazed at the supernatural peace that has kept me grounded. Due to our humanness, questions occasionally loom but I always end up resting in the promises of a Faithful Father.
Brianne has really enjoyed getting mail at the hospital so I am giving you the contact information again.
The number to call at her bedside is 404-712-3615. Her mailing address is Brianne Tsavatewa room 615E c/o Emory Hospital 1364 Clifton Rd. NE Atlanta, Ga 30322.
Thanks again everyone for your prayers, love and support.
Brenda Tsavatewa-Lester

Wednesday 9/26

2007-09-26T20:47:00.000-04:00

Dr. Heffner came by this morning and spoke with me about how well I'm responding to treatment. I have been on fluids 24 hours a day for the past week to flush out my kidneys. The doctor says I can now come off of them. YES!! I'll be "free." Tomorrow I have another chemo treatment and a lumbar puncture. Woo, can't wait. Tomorrow will be a hard one so please keep me in your prayers.

Week 3 Has Officially Started

2007-09-25T09:38:00.000-04:00

It is amazing how much can change in such a short period of time. Three weeks ago I was making plans for the Halloween costume contest at work, and now I'm making plans on when I'm going to receive blood. It has been hard to be completely honest with my feelings about this whole situation. Sitting around the hospital is giving me time to think. I haven't ever given myself time to learn how to just be. I am always running around, working, schooling, or just doing something to occupy my time. I've come to realize that I don't know how to be alone with myself. I get antsy and bored after 10 mins of alone time. What kind of life is that? (Rhetorical question) There is this theme that keeps coming to mind. That God is working now more on what going on in my heart than my body. I made this revelation. It isn't so much that I'm afraid to be who I am. It is that I don't really know who I am. So, I'm searching. What a way to start, eh? There will be more to come I'm sure. I still have 3 more weeks of this. :) If anyone is just itching to send something...I don't have any music. For those of you who know me best, you know that I can't live without music. Send me a link to a great song on youtube or a link to a great song on itunes... I miss you all. I love you all. And thank you for being there for me.

Monday 9/24

2007-09-24T14:52:00.000-04:00

The doctors are saying good things about how I'm responding to treatment. They say that my body is accepting the chemo well, and it's working. I am still going to have to stay for the long haul, but at least I have some good news. :) I am tired often. The medicine that I'm on I guess is making me tired. Oh, well. It is a small price to pay. Tonight will be short and sweet. I am really in need of some good rest. Hopefully tonight I will get that. I love you all. Thank you for keeping me in your prayers.

A Post for You

2007-09-23T14:31:00.001-04:00

Today I had another chemo treatment. As I was scanning through reading some of what I have written and the comments posted I was overwhelmed. I was overwhelmed with the thoughts and prayers that you all have so selflessly given to me. This time in my life is trying and everyday there seems to be a new struggle, but never once have I had to doubt that I was loved. Never once have I had to doubt that someone out there (in the vast world of cyberland) was praying for me. Today I just wanted to thank you all for your love, support, and prayers. I have bad days. Today isn't so great, but I can rest in knowing that there are only so many hours in day. Tomorrow will be new and different. This post is for you. A virtual toast to your wonderful and kind thoughts. Thank you.

Today makes Four or a Week

2007-09-22T19:52:00.001-04:00

Even though today is only the fourth day in the intense chemo regimen I'm on, it makes a full seven days that I've spent at Emory University Hospital. Already I'm getting antsy and fidgety. I still have at least another three weeks here and I'm not really sure how I'm going to fill my time. This blog has proved to be very helpful indeed. Yesterday I was kind of in a funk and that funk hasn't really lifted yet. Today I had several visitors. Liz, Ashley, Tim, and Bo were all here checking out the invalid making sure that I hadn't jumped ship yet. Also, I had a very pleasant surprise when an old high school buddy, George. It is nice to have visitors but at about 4 pm and everyone had cleared out (with the exception of Bo) I passed out. I couldn't believe how tired I was. It was so nice just to sleep for an entire hour without interruption. See, I don't think most people realize how hard it is to actually sleep in a hospital. Between being hooked up to fluids that make you pee every 15 mins., getting your vitals checked, and having doctors and nurses looking down your ears, nose, and throat it is impossible to rest. Well, I'm really tired. So I think that will be all for tonight.

Another day turns to Three

2007-09-21T18:27:00.000-04:00

After spending all day doing nothing I've realized something my mom has been telling me forever. I don't know how to be alone. This time alone has been really good for me. Most of my prayer life has consisted of me just talking to God. Today I spent about 45 mins. just sitting and listening or trying to listen. I know 45 mins. doesn't seem like a long time, but for someone like me who is always going, doing, and then going some more it was. I also spent some time with a minister who works here at the hospital. It is always so cool to me how you can not know some one but if you are both Christians you have this automatic connection, then of course I've never met a stranger. LoL. I didn't have anything on the schedule for today except take an obscene number of pills. So I navigated over to Yahoo!Music. I love music. I'm sure that some one got a great show today. I had my blinds up and I was breakin' it down in my hospital room. Snap Yo Finger feat. E40 and Sean Paul by Lil' John, Umbrella by Rihanna, Pop Lock and Drop it by Huey, A Bay Bay by Hurricane Chris just to name a few. I think that when I get out of the hospital I'm going to take a dance class. :) Today was a little rough though. I had quite a bit of nausea. I can tell this is going to be hard. Please keep me in your prayers. I really appreciate all the response I've been getting. I love and miss all of ya'll. I am so excited though about how this story is going to end. As many of you know me well, you know that it is just like me to go all out. I don't ever do something half ass (woops :). I thank God for all of ya'll. Good Night!

Day Two Comes to an End

2007-09-20T17:07:00.000-04:00

It is about 5 pm and still no chemo. Since the main drug in my chemo is a steroid and it is so late in the day, I'll most likely be up most of the night. (I hope somewhere there is a Will and Grace marathon). Today has been pretty uneventful which has been wonderful. The pharmacist was up here talking with me this afternoon about all the drugs I will be on, the side effects, and then all the drugs all be on to counter act the side effects of the other drugs. I can't wait for my body to become a human chemistry project. :) I did get pretty bored today. It is hard sometimes being here because my room looks so much like a hospital room. My mom and my brother Christopher bought me two posters, one of David Beckham and one of a boat on some beautiful water with a neat quote. "Life is not measured by the number of breaths we take but by the moments that take our breath away." I do however have a great view. When I look out my window I can see all these beautiful trees and the skyline of Atlanta. It is really pretty. There is also a soccer field right outside my window, it's nice. Well, I'm getting sleepy. There will be more tomorrow.

Today was the first

2007-09-19T19:25:00.000-04:00

Today was the first day of chemo, though tomorrow it really becomes hard core. I started my fight with a L.P. (Lumbar Puncture) and then the doctor inserted a shot of chemo into my spine. One of the most painful things I've ever had to go through (almost as bad as a bone marrow biopsy). I'm kind of at a loss as what to tell everyone. I've been so caught up in going and taking action that my emotions have taken a back seat. It seems that everyday I have some new procedure to do. One day it is an e.k.g and then getting two units of whole blood and then the next it is getting platelets and chemo. Everyday is different and tiring. The one thing that seems to remain constant is that I have a very hard time sleeping. I don't know if it is the stress of all the sudden changes, or the new environment, but something is keeping me awake at night. I have been able to use this time though to connect with God. I find myself tossing and turning as if my physical body is imitating the struggle I'm going through with God. All of the age old questions are there; why this, why now, why me? I have a firm belief that God has a plan for everything. I hold tight to that every time I doubt His divine purpose. I don't want to sound preachy or cliche', but truth is steadfast. My brother gave me this example which really helped me out. See, life is like a quilt. While we are on earth we see what's underneath, the criss-crosses, the back-stitches, and the mistakes. But when we get to Heaven, we see what God sees- a beautiful complete work of art. And right now this disease may look to me like a double-cross-back-stitch, but I can't wait to see what design God has just brought me into. I've spent the last ten months cleaning up, growing up, and moving closer to God. I thought that life would be peaches after I had a year clean. I would be "a mature adult." More now then ever before have I been able to see God preparing me for this battle. I have the hope to persevere, I have the wisdom to cry out for help, and I have the faith that Christ has not brought me this far to simply let me go. I have good days and bad days, but the beautiful thing about that is that my friends and my family love me through it all. I will fight. "I can do all things through Christ Jesus who strengthens me."

How It All Began

2007-09-19T14:07:00.000-04:00

A synopsis of the last weeks events written by Mom.

Greetings All (in more ways than one as you will see), I wanted to provide some details of how this whole thing started and update our dear friends and family. Brianne has been living and working in our old home place, Sylva, NC for the past year. She began attending my Alma mater Western Carolina University in the Fall of 06. Beez hit a bump in her academic road, put school aside for the time being and began working full time for Wal-Mart in December where she is now a customer service manager. In the meantime she has been developing new relationships and deepening old ones with some church family/friends. Faithful as always, God placed some beautiful people in her life to show His unfailing love for her.

The past 10 months have been an incredible journey for her of grace, faith, love, truth, anger, pain, struggle, acceptance, joy, more love, and more grace. I am beginning to see how God was not only healing but strengthening and (unbenownst to us) preparing her foundationally for a new experience in Faith and Trust. This new path will be filled with a wide range of experiences, emotions and physical changes.

On Sunday September 9th Brianne experienced very sharp pains in her abdomen. They were so severe that a trip to the ER was needed. The ER doctor ran the usual labs, gave her pain medicine and ruled out appendicitis. She was told her platelets were very low and she needed to follow up with her family doctor that week. The next day Brianne was driving down to Macon Georgia as the pain continued. She saw her doctor on Tuesday morning and they performed an ultrasound which revealed and enlarged spleen and she was sent to the hospital for a CT scan. Beez came home and awaited results from the doctor. The call came saying her spleen was very enlarged and her platelet count had dropped critically low. She had to be admitted immediately for a transfusion and further testing. Tuesday evening Beez was in the hospital for what the doctor thought was a very severe case of mono. On Wednesday, the results were negative for mono and other disorders so the next plan was to test for Leukemia. Needless to say we were all shocked to hear of the possibility of Leukemia and we focused our thoughts and prayers on staying positive until we knew for sure. Brianne had a bone marrow biopsy in which they were not able to aspirate any fluid and that was not a good sign. Late Friday afternoon the oncologist told us that my Beez had Leukemia. We did not yet know the type but were told that she needed to be transferred right away to a specialized cancer treatment center. We chose Emory and thankfully Emory had a bed and a physician to accept her right away. She was transferred late that night and that's where she is now.

It has been a real whirlwind of events and quite a shocking discovery for us all. On Saturday, the doctor told us that another bone marrow biopsy needed to be done to determine the type. They knew it was acute and not chronic but whether it was ALL or AML had yet to be determined. They explained that she displayed markers for both. So again we waited and hoped for the best. On Tuesday afternoon we were given a definitive diagnosis of acute lymphoblastic leukemia, ALL. So now, let the treatment begin. We have gathered information, asked numerous questions and searched out the search engines to find all that we can about ALL. There are links attached to this site for additional information. Some very positive things can be said for the treatment and recovery rate of people diagnosed with ALL. Brianne will be getting a very aggressive treatment regime. Once again, and much to Brianne's dismay, even though she is an adult, she will be treated as a child. The pediatric treatment plan is the best and most successful course of action to take. We are very pleased with the medical staff here and specifically her doctors.

Brianne and the rest of us will be posting information from time to time to keep everyone updated on her progress and plan of care. There are few things I need to mention about visitation and such. She cannot receive flowers or fresh fruit/vegetables. No visitors under the age of six and no perfumes or strong colonges on her visitors. This is due to immuno risks and nausea/vomitting related to strong smells. More information will be provided later regarding details of treatment but she will be in-patient here at Emory for a minimum of three weeks.

The number to call at her bedside is 404-712-3615. Her mailing address is Brianne Tsavatewa room 615E c/o Emory Hospital 1364 Clifton Rd. NE Atlanta, Ga 30322.

Thank You for all your love, prayers and support. We are very blessed that you are a part of our lives.