Well we went to see Dr. Lemon on Monday 12/27/10. He made the suggestion of having a PET scan done just to "double" check that this is a lesion or tumor and to check the rest of the body for tumors. This would give us a better idea of what we are really dealing with. It was a great appointment. He really explained everything to us and what the options would involve. And we both left the appointment feeling pretty good about how things were going to proceed. He did tell us there was this minute chance that the "lesion or tumor" would not show up as "hot" on the PET scan, but that would be so remote, and we would deal with that if that happened.
So Jeremie had the PET scan on Wednesday 12/29/10. Dr. Lemon called and explained that the lesion or tumor on Cervical vertebrae # 6 wasn't metabolically active or it wasn't "hot" on the scan. Tumors or cancer take in more energy than other body structures, organs or tissues. So tumors will glow or show "hot" on the scan when they are examined this way (with radioactive dye). As of right now it wasn't metabolically active, and the CT scan didn't see the lesion.
Next week Jeremie will be having a biopsy of the area to see what exactly it is. One of the possibilities is a fungal infection. So of course this is what we are praying for! We don't exactly know how or what our next steps will be. But as always miracles surround us :-)
Jeremie's blood work continues to improve. And he is feeling better each day. His energy is increasing, his headaches are coming on less, and of course he looks magnificent. So we are praying, and feel peace that everything that is supposed to be happening is happening. We are so thankful for an oncologist here in St. George that wants to make such sure of what we are dealing with.
Well we are off to visit Salt Lake...no being admitted to LDS Hospital! Woo Hoo!!! So of course we are looking forward to the weekend of spending time with family and looking forward to the New Year. What ever it may bring.
Keep praying! Keep sending us your positive thoughts! We feel them and need them!
Lots of Love,
Cori & Jeremie
Friday, December 31, 2010
Sunday, December 26, 2010
12/26/2010
Wow...how do I write, what I am about to write. The last few days have been the most difficult of my life. First to start with a positive. We had a wonderful Christmas! Thank you to so many people that I can't even count! The kids just had a blast. Their excitement was catching! Their life and love is the reason for this sweet season. Christmas definitely had a beautiful meaning for us this year.
Yuck...I just hate to write this...
We received a conference call on Wednesday 12/22/10 from LDS Hospital. They had results to share with us from Jeremie's recent testing from the week before. I wasn't prepared for what they had to say. Jeremie has a new tumor on C6 or cervical vertebrae #6 on his spine. The bone marrow biopsies came back as they usually do. Inconclusive was the result of the biopsies, as they still have dead leukemia cells and odd abnormal cells.
They no longer recommend the cord blood transplant. At best, it offers a 10% success rate given the recent results from the MRI. The new tumor grew despite a new chemotherapy induction and 8 intrathecal chemotherapy injections. Their new recommendation was to start weighing quality of life vs quantity of life. Maybe the cord blood transplant would extend his life, but at what cost? There is the option of having the tumor radiated (as it will continue to grow), and use a type of low dose chemotherapy to keep the leukemia "at bay". We were told that this would work from several weeks to several months, depending on the person.
They said that they would still support us in the decision to continue on with the cord blood transplant.
We are meeting with our oncologist tomorrow to discuss what life will look like without the transplant. What are our new expectations? We now know a cure or remission is no longer in the future. On some level knowing this gives some peace. On another, at least for myself...fear. We will be weighing all of the options to what will give Jeremie the best life for the longest amount of time.
I know we have your prayers and your thoughts...We have felt them, and appreciated them, more than you will ever know. I ask at this time, that they will continue.
Love,
Cori
Yuck...I just hate to write this...
We received a conference call on Wednesday 12/22/10 from LDS Hospital. They had results to share with us from Jeremie's recent testing from the week before. I wasn't prepared for what they had to say. Jeremie has a new tumor on C6 or cervical vertebrae #6 on his spine. The bone marrow biopsies came back as they usually do. Inconclusive was the result of the biopsies, as they still have dead leukemia cells and odd abnormal cells.
They no longer recommend the cord blood transplant. At best, it offers a 10% success rate given the recent results from the MRI. The new tumor grew despite a new chemotherapy induction and 8 intrathecal chemotherapy injections. Their new recommendation was to start weighing quality of life vs quantity of life. Maybe the cord blood transplant would extend his life, but at what cost? There is the option of having the tumor radiated (as it will continue to grow), and use a type of low dose chemotherapy to keep the leukemia "at bay". We were told that this would work from several weeks to several months, depending on the person.
They said that they would still support us in the decision to continue on with the cord blood transplant.
We are meeting with our oncologist tomorrow to discuss what life will look like without the transplant. What are our new expectations? We now know a cure or remission is no longer in the future. On some level knowing this gives some peace. On another, at least for myself...fear. We will be weighing all of the options to what will give Jeremie the best life for the longest amount of time.
I know we have your prayers and your thoughts...We have felt them, and appreciated them, more than you will ever know. I ask at this time, that they will continue.
Love,
Cori
Friday, December 17, 2010
12/17/10
Man this blog stuff can be difficult to keep up on sometimes!
It has been crazy busy lately. We went to Salt Lake on Tuesday night. And our fun filled day began early Wednesday 12/15. Jeremie started with giving about 15 vials of blood to test for everything under the sun. Then we were magically whisked away to EKG/ECHO. That turned out well. Then we went for some adventurous times with bilateral bone marrow biopsies. Have I said I am married to an amazing man yet? Holy cow! What a brave person. Only one swear word during the procedure! They were able to obtain the magical fluid aspirate, and obtained two magnificent pieces of bone for biopsy :-)
We then went to eat (finally) both of us had not eaten the whole day! We didn't get out of LDS until 5:30. Then we went back to our gross hotel. By the way I'm never listening to my sweet husbands suggestion of finding a hotel room "on foothill" again! That was horrible!
Thursday was even more crazy. We sat down with a nurse who decided at this stage in our game to tell us what to expect. Huh??? Jeremie has been admitted 5 times! Do we really need this now? Seriously I almost reached across the table to strangle her. I know it is her job but this would have been helpful 5 months ago! Then we got to have a consult with one of our oncologists who laid it all out for us.
It is super scary to hear that they are going to wipe out your husbands bone marrow...FOREVER! I didn't let that totally sink in until this trip. This is forever, it will not "grow" back. I guess this is the point. This is why it is called a transplant. They kill one organ and replace it with another. I don't know why,but it is hitting me why this is so incredibly dangerous. If the "transplant" or graft doesn't take, that is it. I guess that is why there is a 5-15% mortality with just the transplant process. YUCK!
They told us that one of the cord blood donations came from a little boy who is A positive, and the other donation came from a little girl who is O positive. For a little while Jeremie will look like he has three different blood types!!! Isn't that amazing?! I'm so thankful for their parents for donating their cord blood, what a gift. I wish I did the same thing! One of the cord blood stem cell donations will "win" out become the dominating immune system.
It takes on average 21-42 days for the transplant of stem cells to engraft. Jeremie will be started on immuno-suppressants right before the transplant. Then will be monitored for graft vs host disease. We are told we want a little of this to happen. This is when the transplanted cells "attack" the host's cells. This is what will keep leukemia away. They will not recognize those cells as self, and will destroy the leukemia cells. Man, it is so incredible that we do this stuff!
Jeremie's 100 days will begin on the day of transplant. He will be expected to be in Salt Lake for this minimum of days. I'm not looking forward to it. I'm sort of thinking about it, but not really. I'm pulling a Scarlett O'Hara "I will think about that tomorrow".
Our Thursday ended with a lumbar puncture with chemotherapy and a blood patch. Aaaahhh another cure for his horrible headache. Now I just can't sit on him ;-) We left last night around 8:30 p.m. and didn't get home until well after midnight. So happy to be home. He is doing great. Feeling great. Numbers (neutrophils, platelets and hematocrit) are all climbing. This last round of induction chemotherapy didn't make his hair fall out. So he looks fabulous! Of course radiation will change that! Every bloody hair will fall out. Eyebrows and eye lashes included. Jeremie also has four new tattoo's on his back :-( this marks where they need the radiation to go.
Well we are hoping that he continues to feel well and we can enjoy the next 13 days together as a family. Each day a gift.
By the way...thank you to all of those who have blessed my family this holiday season. I can't believe the amazing people I live by, work with and don't even know who have chosen to help our family during Christmas. Through all of this scary stuff, all I feel is the love, support and prayers of everyone around us. It truly gives us strength and is humbling to know we are so loved and thought of.
It has been crazy busy lately. We went to Salt Lake on Tuesday night. And our fun filled day began early Wednesday 12/15. Jeremie started with giving about 15 vials of blood to test for everything under the sun. Then we were magically whisked away to EKG/ECHO. That turned out well. Then we went for some adventurous times with bilateral bone marrow biopsies. Have I said I am married to an amazing man yet? Holy cow! What a brave person. Only one swear word during the procedure! They were able to obtain the magical fluid aspirate, and obtained two magnificent pieces of bone for biopsy :-)
We then went to eat (finally) both of us had not eaten the whole day! We didn't get out of LDS until 5:30. Then we went back to our gross hotel. By the way I'm never listening to my sweet husbands suggestion of finding a hotel room "on foothill" again! That was horrible!
Thursday was even more crazy. We sat down with a nurse who decided at this stage in our game to tell us what to expect. Huh??? Jeremie has been admitted 5 times! Do we really need this now? Seriously I almost reached across the table to strangle her. I know it is her job but this would have been helpful 5 months ago! Then we got to have a consult with one of our oncologists who laid it all out for us.
It is super scary to hear that they are going to wipe out your husbands bone marrow...FOREVER! I didn't let that totally sink in until this trip. This is forever, it will not "grow" back. I guess this is the point. This is why it is called a transplant. They kill one organ and replace it with another. I don't know why,but it is hitting me why this is so incredibly dangerous. If the "transplant" or graft doesn't take, that is it. I guess that is why there is a 5-15% mortality with just the transplant process. YUCK!
They told us that one of the cord blood donations came from a little boy who is A positive, and the other donation came from a little girl who is O positive. For a little while Jeremie will look like he has three different blood types!!! Isn't that amazing?! I'm so thankful for their parents for donating their cord blood, what a gift. I wish I did the same thing! One of the cord blood stem cell donations will "win" out become the dominating immune system.
It takes on average 21-42 days for the transplant of stem cells to engraft. Jeremie will be started on immuno-suppressants right before the transplant. Then will be monitored for graft vs host disease. We are told we want a little of this to happen. This is when the transplanted cells "attack" the host's cells. This is what will keep leukemia away. They will not recognize those cells as self, and will destroy the leukemia cells. Man, it is so incredible that we do this stuff!
Jeremie's 100 days will begin on the day of transplant. He will be expected to be in Salt Lake for this minimum of days. I'm not looking forward to it. I'm sort of thinking about it, but not really. I'm pulling a Scarlett O'Hara "I will think about that tomorrow".
Our Thursday ended with a lumbar puncture with chemotherapy and a blood patch. Aaaahhh another cure for his horrible headache. Now I just can't sit on him ;-) We left last night around 8:30 p.m. and didn't get home until well after midnight. So happy to be home. He is doing great. Feeling great. Numbers (neutrophils, platelets and hematocrit) are all climbing. This last round of induction chemotherapy didn't make his hair fall out. So he looks fabulous! Of course radiation will change that! Every bloody hair will fall out. Eyebrows and eye lashes included. Jeremie also has four new tattoo's on his back :-( this marks where they need the radiation to go.
Well we are hoping that he continues to feel well and we can enjoy the next 13 days together as a family. Each day a gift.
By the way...thank you to all of those who have blessed my family this holiday season. I can't believe the amazing people I live by, work with and don't even know who have chosen to help our family during Christmas. Through all of this scary stuff, all I feel is the love, support and prayers of everyone around us. It truly gives us strength and is humbling to know we are so loved and thought of.
Thursday, December 9, 2010
12/09/10
We heard from LDS hospital today. Our plans have changed...I know weird huh?...didn't expect it. Welcome to my life. Glad over the last few days I had been thinking about not ever making another plan again, because it will just get ruined. I promise I'm not being dramatic.
K...I'm gonna float this out to cyberspace...or common-sense space. I'm by no means an expert in leukemia or in cancer. I will preface with that first. BUT, I'm just shoot'n out an idea here. If one has leukemia, and has received chemotherapy (an induction no less). One would know/think that blood cells are not being made. I mean that is what the chemotherapy did. It killed the bone marrow. And the ability to make blood cells for a bit. SO if you give said person a lumbar puncture, ya know with a needle going into the thecal space and then you took out some fluid and replaced it with chemotherapy, they probably...probably will not heal like someone who doesn't have cancer. You following me? So really, do we need a separate order for a blood patch to be performed. Shouldn't this be common sense? I mean can we just TRY to avoid needless pain and suffering. GRRRRRR!!!! Hoping and praying that tomorrow's intrathecal chemotherapy will go well, and a blood patch will be an answer to his horrible headaches.
Jeremie's numbers are still at around 200 neutrophils. Still very neutropenic. And all of my children have colds. I love my life. Me and antibacterial wipes are good friends. Thank goodness for an upstairs! With separate ventilation, bathroom and T.V. :-) Small blessings.
Alright have that off my chest. Today we received an updated plan (doesn't that sound so P.C.? I know I'm proud of me too). Jeremie is going to Salt Lake on 12/15 Wednesday. He is going to be undergoing a ton of tests, a bilateral bone marrow biopsy (#8 & 9), then being "fitted" for his TBI (total body irradiation). Thursday he has more tests, and will finish the day with his last intrathecal chemotherapy. Then he will go back to LDS hospital on 12/30/10 for a couple of other tests. Admitted on 1/3/2011 to start the process for transplant. With a tentative date of transplant for 01/11/11. So we are going to be home for Christmas.
Still taking it all in. Anxious to get the show on the road, yet scared out of my mind. You know it would just be helpful if he wasn't hurting. Again, this week I realize how much Jeremie does. Poor Alex is getting a fast and hard lesson on taking care of the ins and outs of everyday adult life. Thank goodness for him. Even though every other day I want to shoot the kid. But oh well, I guess under the circumstances he is doing awesome.
Well...until something else decides to change...ta ta for now :-)
K...I'm gonna float this out to cyberspace...or common-sense space. I'm by no means an expert in leukemia or in cancer. I will preface with that first. BUT, I'm just shoot'n out an idea here. If one has leukemia, and has received chemotherapy (an induction no less). One would know/think that blood cells are not being made. I mean that is what the chemotherapy did. It killed the bone marrow. And the ability to make blood cells for a bit. SO if you give said person a lumbar puncture, ya know with a needle going into the thecal space and then you took out some fluid and replaced it with chemotherapy, they probably...probably will not heal like someone who doesn't have cancer. You following me? So really, do we need a separate order for a blood patch to be performed. Shouldn't this be common sense? I mean can we just TRY to avoid needless pain and suffering. GRRRRRR!!!! Hoping and praying that tomorrow's intrathecal chemotherapy will go well, and a blood patch will be an answer to his horrible headaches.
Jeremie's numbers are still at around 200 neutrophils. Still very neutropenic. And all of my children have colds. I love my life. Me and antibacterial wipes are good friends. Thank goodness for an upstairs! With separate ventilation, bathroom and T.V. :-) Small blessings.
Alright have that off my chest. Today we received an updated plan (doesn't that sound so P.C.? I know I'm proud of me too). Jeremie is going to Salt Lake on 12/15 Wednesday. He is going to be undergoing a ton of tests, a bilateral bone marrow biopsy (#8 & 9), then being "fitted" for his TBI (total body irradiation). Thursday he has more tests, and will finish the day with his last intrathecal chemotherapy. Then he will go back to LDS hospital on 12/30/10 for a couple of other tests. Admitted on 1/3/2011 to start the process for transplant. With a tentative date of transplant for 01/11/11. So we are going to be home for Christmas.
Still taking it all in. Anxious to get the show on the road, yet scared out of my mind. You know it would just be helpful if he wasn't hurting. Again, this week I realize how much Jeremie does. Poor Alex is getting a fast and hard lesson on taking care of the ins and outs of everyday adult life. Thank goodness for him. Even though every other day I want to shoot the kid. But oh well, I guess under the circumstances he is doing awesome.
Well...until something else decides to change...ta ta for now :-)
Saturday, December 4, 2010
12/4/10
Past few days have been crazy! We were able to bring Jeremie home on Wednesday. His neutrophils are only at 200. But we coordinated with the infusion clinic and Dr. Lemon for Jeremie to continue his I.V. antibiotics at the infusion clinic everyday. First day home went pretty well. Jeremie was able to eat ok, and get through the day.
Yesterday 12/3/10, Friday, Jeremie had his lumbar puncture and intrathecal chemotherapy administration. He said this one went much better than the one from last week. He was quite sick last night when we brought him home. Rough night. Probably a rough day for him overall. He had to go and have platelets and the I.V. antibiotics before having the lumbar puncture. Then they gave him more platelets before the procedure yesterday as well. Neutrophils still only at 200 :-(
Running my rear end off! Man exhaustion has set in this week. I just die everynight my head hits the pillow. I don't think I even move! I sleep quite well! Decided not to have the boys do basketball this year. I'm sad about this. I just don't have the time to run them to the practices and the games :-(
Jeremie is super dad...just in case no one knew. He did all the running around, taking them everywhere. I'm the parent that coordinates dentist/orthodontist appointments. Make sure they brush their teeth, clean their rooms and nag them about homework. We had such a good coordination in making our large family work, with both of us working.
To all single parents everywhere...YOU ARE AWESOME! I can't do it :-( And thankfully, I get home and do lots of whining and complaining to my sweet Jeremie who just sits and listens and tells me that I'm lucky because I can do this. It makes me smile, because I know he is right.
I'm so used to doing everything I want. I'm spoiled. I get to work in my field of passion. I get to go to school and work on my masters. I get to be the mother of five beautiful children and the wife of an incredible man. But I was only able to "do all of it", because of the incredible man. I always thought I knew that. It has now been driven into me, how much he truly made all of this possible.
Everyday I look at all our many blessings. And can you believe even in the midst of this scary time, all I see are blessings? There are people who I get to surround myself with who love us. Who want to ease the burden. Who bring a smile to our family. I can't believe that there are this many people who I have the pleasure of being close to, who just want to help. And they never stop. They just keep giving.
It helps, it helps to know the love we are surrounded by. Thank you...
Yesterday 12/3/10, Friday, Jeremie had his lumbar puncture and intrathecal chemotherapy administration. He said this one went much better than the one from last week. He was quite sick last night when we brought him home. Rough night. Probably a rough day for him overall. He had to go and have platelets and the I.V. antibiotics before having the lumbar puncture. Then they gave him more platelets before the procedure yesterday as well. Neutrophils still only at 200 :-(
Running my rear end off! Man exhaustion has set in this week. I just die everynight my head hits the pillow. I don't think I even move! I sleep quite well! Decided not to have the boys do basketball this year. I'm sad about this. I just don't have the time to run them to the practices and the games :-(
Jeremie is super dad...just in case no one knew. He did all the running around, taking them everywhere. I'm the parent that coordinates dentist/orthodontist appointments. Make sure they brush their teeth, clean their rooms and nag them about homework. We had such a good coordination in making our large family work, with both of us working.
To all single parents everywhere...YOU ARE AWESOME! I can't do it :-( And thankfully, I get home and do lots of whining and complaining to my sweet Jeremie who just sits and listens and tells me that I'm lucky because I can do this. It makes me smile, because I know he is right.
I'm so used to doing everything I want. I'm spoiled. I get to work in my field of passion. I get to go to school and work on my masters. I get to be the mother of five beautiful children and the wife of an incredible man. But I was only able to "do all of it", because of the incredible man. I always thought I knew that. It has now been driven into me, how much he truly made all of this possible.
Everyday I look at all our many blessings. And can you believe even in the midst of this scary time, all I see are blessings? There are people who I get to surround myself with who love us. Who want to ease the burden. Who bring a smile to our family. I can't believe that there are this many people who I have the pleasure of being close to, who just want to help. And they never stop. They just keep giving.
It helps, it helps to know the love we are surrounded by. Thank you...
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