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.