Request for Support

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

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

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

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

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!

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

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

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

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

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

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

(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

Produced by Chris

CT results

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

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

(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

(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

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...

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

(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

(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)

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

(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

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

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

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

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

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

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

(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

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

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.

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

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)

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

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.

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

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?

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...

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

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

Nose Bleed and Fatigue

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!

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

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.