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.