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.