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.
Monday, May 26, 2008
Wednesday, May 21, 2008
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.
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.
Sunday, May 18, 2008
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.
Saturday, May 17, 2008
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.
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.
Tuesday, May 13, 2008
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.
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.
Thursday, May 8, 2008
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
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
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