It's been a little bit since the last post so I thought I would let you know what the latest is.
Connie was all set to go home on Sat. discharge papers in hand and was ready to walk out of there and head home. They took her temperature one last time and she was running a 100.7 fever. :-( The doctor came in and said with with fever there would be no going home. Later that night she spiked a temp of around 103 and continued to run a high fever yesterday along with being sick to her stomach.
Today she was doing a bit better and her temp and gone down to around 101, but she is exhausted and has been sleeping as much as possible (when you are sick and in the hospital they don't let you get a lot of sleep like you would if you were home, they are in all throughout the day and night taking your temperature and pushing a variety of meds, so not a lot of rest to be had.)
With her running such a high temp and being sick the doctors have pushed back her being able to go home for at least a couple of weeks. As you can imagine Connie was devastated by this news.
Please keep Connie and Ron in your thoughts and prayers.
Monday, September 27, 2010
Thursday, September 23, 2010
Chemo, Round 3, Done.
There have had a few inquiries asking how Connie is doing. I know we have not posted anything since Connie was moved to the U of W Medical Center and accepted in the clinical trial through the Seattle Cancer Care Alliance.
Connie is doing ok; she received her last Chemo treatment today for this round. There were a few side effects along the way, but nothing that was considered a complication. She is scheduled to receive her “magic cells” tomorrow and if that goes smooth, they will let her go home for a few days. Of course this is what we are hoping for, some time home with her husband, her sons and her little dog. Just getting a little of ‘normal’ back into her life.
This week Connie’s son from Texas and her brother from Utah were in town and I know seeing them meant a lot to Connie.
Connie is scheduled for a ‘bone marrow biopsy’ around October 3rd or 4th, this will tell the doctors what level her Leukemic cells are at. We are hoping she will have gotten to the “zero” that will put her in remission.
Please know that as much as Connie would like to see friends and family if she goes home, they are essentially sending her home with no immune system, so visits will be even more limited than they are now.
Again Connie and her family thank you for everything everyone has done for them these past 7 weeks, you are all a blessing to her.
Connie is doing ok; she received her last Chemo treatment today for this round. There were a few side effects along the way, but nothing that was considered a complication. She is scheduled to receive her “magic cells” tomorrow and if that goes smooth, they will let her go home for a few days. Of course this is what we are hoping for, some time home with her husband, her sons and her little dog. Just getting a little of ‘normal’ back into her life.
This week Connie’s son from Texas and her brother from Utah were in town and I know seeing them meant a lot to Connie.
Connie is scheduled for a ‘bone marrow biopsy’ around October 3rd or 4th, this will tell the doctors what level her Leukemic cells are at. We are hoping she will have gotten to the “zero” that will put her in remission.
Please know that as much as Connie would like to see friends and family if she goes home, they are essentially sending her home with no immune system, so visits will be even more limited than they are now.
Again Connie and her family thank you for everything everyone has done for them these past 7 weeks, you are all a blessing to her.
Friday, September 17, 2010
She's In!!!
It has been a long couple days waiting to find out if Connie would be allowed into the clinical trial due to the fungal infection that she has in her lungs. Dr Estey "The Goodfather" as they call him went to bat for Connie and she was approved today for the clinical trial and will start chemo tomorrow.
Connie was very happy when she got the news and is anxious to get started, they have had a very good success rate with this clinical trial, so we are hopeful that this will do the trick and get her to ZERO.
Connie was very happy when she got the news and is anxious to get started, they have had a very good success rate with this clinical trial, so we are hopeful that this will do the trick and get her to ZERO.
Thursday, September 16, 2010
Car Wash Rescheduled to Oct 3rd
The Car Wash had to be re-scheduled due to a work conflict with Connie's Boeing family. Please note it will now be on October 3rd at the Mill Creek Les Schwab.
Seattle Cancer Care Alliance - A New Beginning
Yesterday was Connie's first full day at UW Medical Center (all inpatient treatment for the Cancer Care Alliance happens at UW). We had the chance to meet with a couple different doctors that discussed their recommendations for Connie's treatment. Here is what we know at this point.
They would like to start Connie on a clinical trial they call GCLAC. It is two different types of chemo drugs (Cytarabine and Clofarabine) which would be followed by what they call "magic cells" (I'll explain more about those later). At this point they are not sure when they will start the chemo. Connie has been running fevers at night which they think may be a result of a fungal infection she has in her lungs. This is very common in patients that have received chemo. One more test will be run today (a broncoscopy) to try to narrow down the specific fungus. If they were to start the chemo and not figure out what was going on with the lungs it could make the lung situation worse, which would not be good, so we wait.
Once they are able to start the chemo she will have 5 days of chemo for an hour or two a day, and then on day 6 she will get the "magic cells" and potentially, if everything goes well, there is a chance that Connie may be able to go home 7 to 8 days after treatment starts. It will be key that she does not run a fever and has no complications during treatment. So keep your fingers crossed, and say your prayers that everything goes well and she can go home for a few days. Once again as it was the last time, day 14 will be the big day. On or around day 14 she will get a bone marrow biopsy and we will find out what her counts are at. Of course zero leukemic cells is the goal.
With the latest move down to SCCA and the other two treatments not being successful it is looking like she will be needing a bone marrow transplant once they get her into remission. Her siblings will be tested and if there is no match there, then they will look at the bone marrow donor registry for a match. At this point there is no need for others to get tested, but if there is we will certainly let you know.
I know Connie and Ron thank you for all your love and support, please continue to keep them in your prayers.
They would like to start Connie on a clinical trial they call GCLAC. It is two different types of chemo drugs (Cytarabine and Clofarabine) which would be followed by what they call "magic cells" (I'll explain more about those later). At this point they are not sure when they will start the chemo. Connie has been running fevers at night which they think may be a result of a fungal infection she has in her lungs. This is very common in patients that have received chemo. One more test will be run today (a broncoscopy) to try to narrow down the specific fungus. If they were to start the chemo and not figure out what was going on with the lungs it could make the lung situation worse, which would not be good, so we wait.
Once they are able to start the chemo she will have 5 days of chemo for an hour or two a day, and then on day 6 she will get the "magic cells" and potentially, if everything goes well, there is a chance that Connie may be able to go home 7 to 8 days after treatment starts. It will be key that she does not run a fever and has no complications during treatment. So keep your fingers crossed, and say your prayers that everything goes well and she can go home for a few days. Once again as it was the last time, day 14 will be the big day. On or around day 14 she will get a bone marrow biopsy and we will find out what her counts are at. Of course zero leukemic cells is the goal.
With the latest move down to SCCA and the other two treatments not being successful it is looking like she will be needing a bone marrow transplant once they get her into remission. Her siblings will be tested and if there is no match there, then they will look at the bone marrow donor registry for a match. At this point there is no need for others to get tested, but if there is we will certainly let you know.
So now onto the "magic cells". When we were told she would be getting "magic cells" we thought, ok, what are these magic cell things? As it was explained to me. We have something called hematopaietic stem cells (HSC) and all of the blood cells in our body stem from these. They go through a variety of phases but then eventually end up as white blood cells, red blood cells, and platelets. By using cord blood they were able to reproduce what they call short term repopulating cells (STRC), this is the stage before the cells turn into white, red, platelets, etc. What the "magic cells" do is help bone marrow recover faster and blood cells to produce faster. I attached a diagram that the doctor drew for us so you can get an idea of the progression of a stem cell.
We are currently waiting for the doctor to come in today to see what his thoughts are on the lung infection and when we think she may be starting chemo. Once we know more you will know.
If you would like to send anything to Connie please send it to the house and Ron will bring it down to her. If you need their address please drop me an e-mail and I can send it to you. Since we don't know at this point how long she will be in the hospital we don't want things to get sent her and not receive them. As for visitors, at this point she is pretty wiped out, and we don't what to risk her catching anything, so visitors are still very limited. If and when this changes we will let you know.
Tuesday, September 14, 2010
Car Wash Fundraiser for Connie
Connie's Boeing family has organized a Car Wash for Connie Chose . I am sure everyone will need their car washed and will make a donation.
It will be on September 19th at Les Schwab at 13223 Bothell - Everett Highway, Mill Creek
Thank you so much from Connie and her family, you are amazing friends!
It will be on September 19th at Les Schwab at 13223 Bothell - Everett Highway, Mill Creek
Thank you so much from Connie and her family, you are amazing friends!
Day 43
Just a quick update to let you all know that Connie is being moved to UW Medical Center today to start/continue her treatment through the Seattle Cancer Care Alliance.
We don't know too much about her treatment at this point but as soon as we do we will let you know.
Stacie
We don't know too much about her treatment at this point but as soon as we do we will let you know.
Stacie
Sunday, September 12, 2010
Day 41
I am so sorry I have not sent anything out sooner. I know you thoughts, and prayers, and good wishes have all been for me to have my zero count and I wished I could have sent this earlier, but the stuffing got knocked out of me.
A little history: When my first induction chemo was finished, I went down from 40% leukemia cells to 20%. It wasn't the numbers we wanted, so that very night we started a second induction of chemo; I saw it as a maddening fourteen day delay. At that time, we asked the doctor what were the chances of seeing zero after the second induction. Doctors hate to give percentages, but finally he relented and said about 80% of the patients achieve zero and most of the other 20% fall between 4% and 1%. (which they say is usually good enough to say you have achieved remission and will clean up in the consolidation phase) OK, with odds like that, you'd play in Vegas all night long.
Never being able to leave well enough alone, I asked what if my count is cut in half again, like last time, and it is 10%? "10%", he said, "would be very, very, bad."
My number was 20. No reduction at all.
When he learned the news, of course, we were devastated. We wanted to know the next step......and, at this point, they don't really know. The doctors here work very closely with the Seattle Cancer Care Alliance and they are turning my care over to them.
Good News: I may be able to go hoe as early as Thursday. They are giving me medicine in the fatty tissues of my stomach that is supposed to stimulate my bone marrow to produce good white cells. It also makes your bones ache like mad, but I don't care. If I can get my white blood count to 1; I CAN GO HOME!!! :-)
I just want a small piece of normal back. Right now I'm running on empty, but give me some time at home, and I will be ready to lead the charge.
I don't want you to think this has damaged my faith......IT HAS NOT. God and I had different ideas. I feel He is very close to me now, nudging me up. My new prayer: Please let Your will me done and grant me the strength and wisdom to keep up.
I want to thank everyone who has been so generous to Ron and me. When I get a little more strength back, I hope to send out thank you notes, but right now, I'm too weak so please forgive me. You all are such a wonderful blessing to have in my life, I'm not sure I could have made it this far without you. Thank you.
With Love and Gratitude,
Connie
A little history: When my first induction chemo was finished, I went down from 40% leukemia cells to 20%. It wasn't the numbers we wanted, so that very night we started a second induction of chemo; I saw it as a maddening fourteen day delay. At that time, we asked the doctor what were the chances of seeing zero after the second induction. Doctors hate to give percentages, but finally he relented and said about 80% of the patients achieve zero and most of the other 20% fall between 4% and 1%. (which they say is usually good enough to say you have achieved remission and will clean up in the consolidation phase) OK, with odds like that, you'd play in Vegas all night long.
Never being able to leave well enough alone, I asked what if my count is cut in half again, like last time, and it is 10%? "10%", he said, "would be very, very, bad."
My number was 20. No reduction at all.
When he learned the news, of course, we were devastated. We wanted to know the next step......and, at this point, they don't really know. The doctors here work very closely with the Seattle Cancer Care Alliance and they are turning my care over to them.
Good News: I may be able to go hoe as early as Thursday. They are giving me medicine in the fatty tissues of my stomach that is supposed to stimulate my bone marrow to produce good white cells. It also makes your bones ache like mad, but I don't care. If I can get my white blood count to 1; I CAN GO HOME!!! :-)
I just want a small piece of normal back. Right now I'm running on empty, but give me some time at home, and I will be ready to lead the charge.
I don't want you to think this has damaged my faith......IT HAS NOT. God and I had different ideas. I feel He is very close to me now, nudging me up. My new prayer: Please let Your will me done and grant me the strength and wisdom to keep up.
I want to thank everyone who has been so generous to Ron and me. When I get a little more strength back, I hope to send out thank you notes, but right now, I'm too weak so please forgive me. You all are such a wonderful blessing to have in my life, I'm not sure I could have made it this far without you. Thank you.
With Love and Gratitude,
Connie
Wednesday, September 8, 2010
The Fight Continues
Well I know most of you have been waiting anxiously, like us, to find out the results to Connie's bone marrow biopsy. Well unfortunately it was not the results that we wanted. The biopsy showed that 20% of Connie's remaining cells (which are very few at this point due to the two round of chemo) are still leukemic.
So what does this mean. Well it means the fight continues, but it will probably continue at Seattle Cancer Care Alliance. The first step is to get her white blood cell count back up so she can go home from the hospital for a little while. As you can imagine having your world confined to the 7th floor of a hospital can get very old very fast. So physically and mentally they need to give her a break from the treatment and let her go home. It is going to take at least a week or two to get her counts back up so she can go home, then she may only be home for a few days before heading down to the Cancer Care Alliance, but really anytime at home is good at this point. Although Connie was very disappointed when she heard the numbers were not down, just hearing that she is able to go home for a little bit was a big relief to her.
At this point we do not know what the next treatment will be, but I imagine we will be finding out in the the next couple weeks. As you can imagine Connie and all of us are very disappointed with the news. But as I said the fight continues and I know she is going to beat this thing, it is just going to take a bit longer than we wanted.
Please keep Connie, Ron, Steven and David in your thoughts and prayers.
Stacie
So what does this mean. Well it means the fight continues, but it will probably continue at Seattle Cancer Care Alliance. The first step is to get her white blood cell count back up so she can go home from the hospital for a little while. As you can imagine having your world confined to the 7th floor of a hospital can get very old very fast. So physically and mentally they need to give her a break from the treatment and let her go home. It is going to take at least a week or two to get her counts back up so she can go home, then she may only be home for a few days before heading down to the Cancer Care Alliance, but really anytime at home is good at this point. Although Connie was very disappointed when she heard the numbers were not down, just hearing that she is able to go home for a little bit was a big relief to her.
At this point we do not know what the next treatment will be, but I imagine we will be finding out in the the next couple weeks. As you can imagine Connie and all of us are very disappointed with the news. But as I said the fight continues and I know she is going to beat this thing, it is just going to take a bit longer than we wanted.
Please keep Connie, Ron, Steven and David in your thoughts and prayers.
Stacie
Thursday, September 2, 2010
One Month
Yikes! If someone would have told me one month ago I would be in a hospital, I would have said, "YOU'RE CRAZY!" :-) I think it's a good thing I'm so tired otherwise I'd be climbing the walls; planning an escape; tying bed sheets together.
I'm proud to say I have not started watching daytime television......but I could be only weeks away from Jerry Springer or Judge something or other. It would be sad to beat leukemia only to lose my brain, so I'm fighting it.
I am essentially bald now. Ron calls be Peach Head. He has big heartedly offered to wax my noggin, but I declined his generous offer. The only hair that continues to hang on is anything you might pay to have waxed. My legs are very European.
I am reading like crazy; my Bible; my Kindle (which I love, love, love!), good magazines and trashy (Will Jennifer Aniston really steal Brad back??). I'm doing everything the Doctors tell me, rinsing my mouth, walking the halls (with a mask), eating well (OK it is hospital food, but not too bad) and trying to keep my spirts up.
Zero leukemia cells are still the first goal and I think everyone who has included me in their prayers and well wishes. I can feel your support and love from here. I miss and cherish all of you, and someday, when I'm back to my old, mundane, ordinary life, I hope I can repay a small part of your kindness.
With love and so much gratitude,
Connie
Wednesday, September 1, 2010
Day 28
I have finished my second induction chemotherapy tonight and I couldn't be happier! No more Fred! (That's what my sister named the IV pole I was dragging around everywhere I went for seven days). It may seem like a small thing, but I feel so free and no more toxins are being pumped into my body. Take that Ms. XXXX.
The doctors have told me they are amazed how well I'm tolerating the treatments. I'm bald, I'm tired, but I don't feel sick. I'm sure it's all your prayers and well wishes that are keeping me buoyed up. THANK YOU!
I understand many of you have given blood. I want you to know you are literally saving lives. I personally could not survive this without transfusions from very good people just like you. I was trimming my fingernails the other morning and the nurses came in and asked me to put the nail clipper down and please stay in bed. I guess the lab called and my platelet count was seven. Normal is 150-400. You platelets are what help clot your blood. Anyway, I received a platelet transfusion that morning and I have also had two transfusions of red blood cells. So thank you, thank you, thank you from the bottom of my heart.
Seven more days for the chemo to finish knocking out the leukemia cells and I will have my next bone marrow biopsy. I'm not sure if that will be Tuesday or Wednesday, but I should have the results no later than Thursday September 9th. I am confident this time it will be ZERO......but please keep me in your prayers. if everything goes as it is supposed to, and it will, I will have two or three more weeks at the hospital while my body builds up my immune system and then it's HOME!!! Dorothy was right, "There is no place like home."
There are no words that can express the joy and gratitude I feel knowing I have such wonderful people pulling and praying for me. You are my strength and my greatest blessing.
With Love,
Connie
The doctors have told me they are amazed how well I'm tolerating the treatments. I'm bald, I'm tired, but I don't feel sick. I'm sure it's all your prayers and well wishes that are keeping me buoyed up. THANK YOU!
I understand many of you have given blood. I want you to know you are literally saving lives. I personally could not survive this without transfusions from very good people just like you. I was trimming my fingernails the other morning and the nurses came in and asked me to put the nail clipper down and please stay in bed. I guess the lab called and my platelet count was seven. Normal is 150-400. You platelets are what help clot your blood. Anyway, I received a platelet transfusion that morning and I have also had two transfusions of red blood cells. So thank you, thank you, thank you from the bottom of my heart.
Seven more days for the chemo to finish knocking out the leukemia cells and I will have my next bone marrow biopsy. I'm not sure if that will be Tuesday or Wednesday, but I should have the results no later than Thursday September 9th. I am confident this time it will be ZERO......but please keep me in your prayers. if everything goes as it is supposed to, and it will, I will have two or three more weeks at the hospital while my body builds up my immune system and then it's HOME!!! Dorothy was right, "There is no place like home."
There are no words that can express the joy and gratitude I feel knowing I have such wonderful people pulling and praying for me. You are my strength and my greatest blessing.
With Love,
Connie
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