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...
Monday, November 29, 2010
11-29-10
Jeremie is still in DRMC. I'm a bit grouchy. I realize it is a bit of PTSD...so I'm gonna try and chill. Jeremie will be released from DRMC when his neutrophil count is above 500. And he will get to come home. Yesterday he had a CBC w/differential (that means it measures all the componets of his blood, like red blood cells, platelets and then it differentiates between the different types and amounts of white blood cells). His absolute neutrophil count (or ANC) is 0.2 or 200 neutrophils. That was YESTERDAY!!!!
Today they said they were at 200. Well that is funny, cause they DIDN'T PULL IT!!!! They only obtained a CBC WITHOUT a DIFFERENTIAL!!!
Quick rant...I am part of the medical profession. I take this very seriously. I NEVER say I do or did something and pass it off as true. IT IS A LIE if you didn't do it. I have heard lies like this before. When they told me Jeremie's blood tests all came back normal for 8 straight days, UNTIL I CHECKED THEM AND THEY WERE NEVER NORMAL!!! This is when I lost all trust and total belief in Doc and nurses. They stood by and didn't do their job. They let my husband suffer in pain, didn't consult with a hematologist, and LIED that they went over the labs, and said they WERE NORMAL. Jeremie was dying from leukemia and they said he was NORMAL.
I promised I would never make the mistake of not asking exactly what the numbers were. I would never make the mistake of just sitting back and passively letting them take the lead. I don't have a full trust anymore. So I have a HUGE problem with people telling me things that aren't true, or don't make sense. I feel that they are hiding information. This increases the mistrust...DON'T DO IT!
I bring it up with the nurse today that a CBC was pulled but not with the diff. She looks at me a bit panicked. I explained that his being able to come home is contingent upon knowing what his neutrophil count is. So it needs to be ran. She kind of leaves and says ok...we will send for it. I'M EXHAUSTED at this junk. It drives me nuts! Really? Really? Does this need to be this difficult??!!!
Whew...I'm breathing, breathing...feeling better
Today they said they were at 200. Well that is funny, cause they DIDN'T PULL IT!!!! They only obtained a CBC WITHOUT a DIFFERENTIAL!!!
Quick rant...I am part of the medical profession. I take this very seriously. I NEVER say I do or did something and pass it off as true. IT IS A LIE if you didn't do it. I have heard lies like this before. When they told me Jeremie's blood tests all came back normal for 8 straight days, UNTIL I CHECKED THEM AND THEY WERE NEVER NORMAL!!! This is when I lost all trust and total belief in Doc and nurses. They stood by and didn't do their job. They let my husband suffer in pain, didn't consult with a hematologist, and LIED that they went over the labs, and said they WERE NORMAL. Jeremie was dying from leukemia and they said he was NORMAL.
I promised I would never make the mistake of not asking exactly what the numbers were. I would never make the mistake of just sitting back and passively letting them take the lead. I don't have a full trust anymore. So I have a HUGE problem with people telling me things that aren't true, or don't make sense. I feel that they are hiding information. This increases the mistrust...DON'T DO IT!
I bring it up with the nurse today that a CBC was pulled but not with the diff. She looks at me a bit panicked. I explained that his being able to come home is contingent upon knowing what his neutrophil count is. So it needs to be ran. She kind of leaves and says ok...we will send for it. I'M EXHAUSTED at this junk. It drives me nuts! Really? Really? Does this need to be this difficult??!!!
Whew...I'm breathing, breathing...feeling better
Friday, November 26, 2010
11/26/10
Jeremie was given several units of platelets today. And a whole lot of Dilaudid. He had the lumbar puncture today as well. Said it HURT horribly. The worse one ever! His neutrophils are at 300! Woo Hoo!!! On paper the man looks amazing. Just not in real life :-(
He is very drugged. I don't love that. Snowing people makes me sad. So I asked him if he could slow down a bit on the I.V. pain meds a bit. He is going to accommodate my wishes ;-)
A lot of the pain is coming from his poor throat. Which he says Dilaudid takes it away instantly. But leaves him incoherent. He has a mouth wash, that has lidocaine in it. But he doesn't love it. We got behind on the Noxifill when he was in Salt Lake for induction. It is a great anti fungal. He doesn't have an immune system to fight fungal infections at the moment. Hopefully taking his medication regularly, doing perfect mouth care, and having his immune system come back will help quickly.
The immune system is amazing, and when it isn't working...uh...just yucky.
I'm pretty much torturing the kids today. Making them clean up their gross rooms and helping clean up the house. I went to the laundry mat and washed all the bedding in the house. Scrubbed my room down. And have it ready for him to come home :-) Have I said I like having him close by. This rocks. I truly can do everything I need to do :-)
Thanksgiving was nice. Just terribly sad without my buddy :-( Food was good. Went home and crashed! Kids did a cute little Thanksgiving skit. It made me laugh so hard! They did a great job, given that they wrote, practiced and did the play within 3 hours. They had fun hanging with their cousins.
Praying that Jeremie doesn't have any complications related to the lumbar puncture this time. Praying that his neutrophils continue to increase, and that he will get to come home tomorrow. Praying that his pain will leave him, and he can focus on gaining strength. Oh please, oh please, oh please...
He is very drugged. I don't love that. Snowing people makes me sad. So I asked him if he could slow down a bit on the I.V. pain meds a bit. He is going to accommodate my wishes ;-)
A lot of the pain is coming from his poor throat. Which he says Dilaudid takes it away instantly. But leaves him incoherent. He has a mouth wash, that has lidocaine in it. But he doesn't love it. We got behind on the Noxifill when he was in Salt Lake for induction. It is a great anti fungal. He doesn't have an immune system to fight fungal infections at the moment. Hopefully taking his medication regularly, doing perfect mouth care, and having his immune system come back will help quickly.
The immune system is amazing, and when it isn't working...uh...just yucky.
I'm pretty much torturing the kids today. Making them clean up their gross rooms and helping clean up the house. I went to the laundry mat and washed all the bedding in the house. Scrubbed my room down. And have it ready for him to come home :-) Have I said I like having him close by. This rocks. I truly can do everything I need to do :-)
Thanksgiving was nice. Just terribly sad without my buddy :-( Food was good. Went home and crashed! Kids did a cute little Thanksgiving skit. It made me laugh so hard! They did a great job, given that they wrote, practiced and did the play within 3 hours. They had fun hanging with their cousins.
Praying that Jeremie doesn't have any complications related to the lumbar puncture this time. Praying that his neutrophils continue to increase, and that he will get to come home tomorrow. Praying that his pain will leave him, and he can focus on gaining strength. Oh please, oh please, oh please...
Thursday, November 25, 2010
Thanksgiving :-)
Ha Ha Ha...I have to laugh today. I think Jeremie is doing better! He is sitting up and speaking to me and looking at me with his "angry face". He is soooo loaded on Dilaudid it isn't funny. His throat hurts...he wants pain meds...his head hurts...he wants pain meds....he doesn't even know what he is asking for! I don't think he can comprehend the conversation we are having!
I think he is having rebound headaches from the hourly Dilaudid, then asking for more pain meds! Then he complains of nausea and is demanding more Zofran. Zofran hasn't done anything for him in the 5 months we have been going through this. But I think this is all his brain can remember right now. I asked him if he could ask for Ativan, when his head hurts next time, and take it easy on the pain meds. Slowly I think we can get him back to earth ;-)
I like DRMC for a couple of reasons. I know the charge nurse...she is one of my most favorite people on this earth. I had the pleasure of working with her when I worked in Mesquite. She is an incredible nurse, and lovely person. I like that it is close to home. Much easier on me...after all this is about me ;-)
What I don't love is that Leukemia is not their specialty. They don't have the working knowledge of this disease process. So giving Jeremie hourly Dilaudid is sweet, but I need him coherent. I want to see how much progress we are really making. PLUS it makes him a bit nuts. For their own sake, they need to chill on it. Second Zofran sucks. It just doesn't work. LDS gives it just for fun, they give it just to try it out. But quickly move to other methods without waiting for Jeremie to give directions on what might work. And right now, he can't remember the names or words of medications that work for his pain or nausea. Third, they have no idea how high risk Leukemia is. How quickly this changes, what this looks like on a patient, and what they could anticipate with a patient like this. And that sucks. Of course I use to be part of this mentality...and still wish I didn't know or anticipate how this process was going to go.
Jeremie wasn't able to have the lumbar puncture yesterday due to his platelet levels. They need to be around 75,000 to do the lumbar puncture. They got them to 45,000 and ran out of irradiated platelets. Again the danger of being in Southern Utah. It is like they are giving us a lesson in why we don't want to be here. He isn't in immediate danger, but it puts a damper on moving forward with his treatments.
Jeremie has been having fevers (called neutropenic fevers). His blood is cultured after these fevers to see what grows out. So far it has been nothing. The body will produce fevers if the neutrophils fall below normal. While he is having these fevers he is being treated with high dose I.V. antibiotics to help prevent minor/major infections. He has to stay in the hospital until his neutrophil count is above 500. Right now they are at 100. Not to bad considering it was Tuesday when they went to zero and by Wednesday they decided to start growing back. Much faster this time :-) Woo Hoo!!!
I know he doesn't think so. But he really is doing much better. He is sitting up, drinking, taking his medication. Having long conversations with me. I see a 100% improvement. Aaaahhh I'm so thankful to him. I sure adore this man. I go a couple of days without the ability to talk to him and I feel so lost! He is my constant check point for my ok-ness. Am I being a good mom? Do you want me to do this? My day sucked...what do you think? Should I grow out my hair? Do I look fatter today? How should I put these things on the table? Seriously...I don't know how I'm able to do anything ;-)
I think I was ok when he was first diagnosed. I was there with him. I saw him go through the first induction. I was able to talk to him, get feedback and see him progress through these last few months. Even if he was miserable. I could talk to him. We could see the next hurdle, hold hands and jump.
After the last hurdle of tumors, leukemia in the CNS, bone-marrow transplant...was still ok. Still could see how we could jump holding hands. Giving and receiving feedback from each other. The last visit to Salt Lake. He couldn't hold my hand to jump over the hurdle. It hurt him. He couldn't talk or make eye contact with me. He just hurt, and seemed to be disappearing.
That is when it faded...my being ok. My strength, my determination, my energy. I couldn't do it. I didn't know this lost, sad and lonely empty feeling. I didn't know if I was going to be able to check myself out of this. For the first time, someone said "are you ok?". Nope, nope I'm not ok. I don't know how to make it ok, and it just isn't ok. It took 5 months. I really don't think I was in denial. I just was looking in Jeremie's face everyday. I was able to talk to him. I could hear and see he was doing this and going to beat it. When I didn't have it, his words or eyes.., it all, every single word, possibility and fear came screaming into my head. That wasn't very nice.
Maybe that is why I see an improvement. Maybe Jeremie doesn't "feel" the improvement, but I do :-)
I think he is having rebound headaches from the hourly Dilaudid, then asking for more pain meds! Then he complains of nausea and is demanding more Zofran. Zofran hasn't done anything for him in the 5 months we have been going through this. But I think this is all his brain can remember right now. I asked him if he could ask for Ativan, when his head hurts next time, and take it easy on the pain meds. Slowly I think we can get him back to earth ;-)
I like DRMC for a couple of reasons. I know the charge nurse...she is one of my most favorite people on this earth. I had the pleasure of working with her when I worked in Mesquite. She is an incredible nurse, and lovely person. I like that it is close to home. Much easier on me...after all this is about me ;-)
What I don't love is that Leukemia is not their specialty. They don't have the working knowledge of this disease process. So giving Jeremie hourly Dilaudid is sweet, but I need him coherent. I want to see how much progress we are really making. PLUS it makes him a bit nuts. For their own sake, they need to chill on it. Second Zofran sucks. It just doesn't work. LDS gives it just for fun, they give it just to try it out. But quickly move to other methods without waiting for Jeremie to give directions on what might work. And right now, he can't remember the names or words of medications that work for his pain or nausea. Third, they have no idea how high risk Leukemia is. How quickly this changes, what this looks like on a patient, and what they could anticipate with a patient like this. And that sucks. Of course I use to be part of this mentality...and still wish I didn't know or anticipate how this process was going to go.
Jeremie wasn't able to have the lumbar puncture yesterday due to his platelet levels. They need to be around 75,000 to do the lumbar puncture. They got them to 45,000 and ran out of irradiated platelets. Again the danger of being in Southern Utah. It is like they are giving us a lesson in why we don't want to be here. He isn't in immediate danger, but it puts a damper on moving forward with his treatments.
Jeremie has been having fevers (called neutropenic fevers). His blood is cultured after these fevers to see what grows out. So far it has been nothing. The body will produce fevers if the neutrophils fall below normal. While he is having these fevers he is being treated with high dose I.V. antibiotics to help prevent minor/major infections. He has to stay in the hospital until his neutrophil count is above 500. Right now they are at 100. Not to bad considering it was Tuesday when they went to zero and by Wednesday they decided to start growing back. Much faster this time :-) Woo Hoo!!!
I know he doesn't think so. But he really is doing much better. He is sitting up, drinking, taking his medication. Having long conversations with me. I see a 100% improvement. Aaaahhh I'm so thankful to him. I sure adore this man. I go a couple of days without the ability to talk to him and I feel so lost! He is my constant check point for my ok-ness. Am I being a good mom? Do you want me to do this? My day sucked...what do you think? Should I grow out my hair? Do I look fatter today? How should I put these things on the table? Seriously...I don't know how I'm able to do anything ;-)
I think I was ok when he was first diagnosed. I was there with him. I saw him go through the first induction. I was able to talk to him, get feedback and see him progress through these last few months. Even if he was miserable. I could talk to him. We could see the next hurdle, hold hands and jump.
After the last hurdle of tumors, leukemia in the CNS, bone-marrow transplant...was still ok. Still could see how we could jump holding hands. Giving and receiving feedback from each other. The last visit to Salt Lake. He couldn't hold my hand to jump over the hurdle. It hurt him. He couldn't talk or make eye contact with me. He just hurt, and seemed to be disappearing.
That is when it faded...my being ok. My strength, my determination, my energy. I couldn't do it. I didn't know this lost, sad and lonely empty feeling. I didn't know if I was going to be able to check myself out of this. For the first time, someone said "are you ok?". Nope, nope I'm not ok. I don't know how to make it ok, and it just isn't ok. It took 5 months. I really don't think I was in denial. I just was looking in Jeremie's face everyday. I was able to talk to him. I could hear and see he was doing this and going to beat it. When I didn't have it, his words or eyes.., it all, every single word, possibility and fear came screaming into my head. That wasn't very nice.
Maybe that is why I see an improvement. Maybe Jeremie doesn't "feel" the improvement, but I do :-)
Wednesday, November 24, 2010
11/24/10
The last few days have been eventful. Jeremie was admitted to Dixie Regional Medical Center yesterday. After spending the afternoon at Dr. Lemons office obtaining fluids and pain medication. Jeremie is now neutropenic (absolute neutrophil count is zero), meaning absolutely no ability to fight off any infection. He had a fever that morning (sigh...). I went to work, and he went to work getting better. Dr. Lemon decided to admit him as he had a fever, needed blood and platelets and was needing and using a lot of pain medication.
He was supposed to have a lumbar puncture today, but it was put on hold until Friday/Saturday. For unknown reasons...grrrr. Super frustrating. I was very relieved he was admitted. He needed the support and medication for his horrible head pain.
He said things were ok today. Just feeling the head pain. I am very frustrated they didn't do the lumbar puncture and the blood patch today. That might help cure this stupid headache. GRRRR!!!! He wants to come home. He is waiting to hear back from Dr. Lemon to see if he can be discharged. Last night I was told by Dr. Lemon that he would be consulting with the team in Salt Lake about the fevers and the possibility of keeping him with antiobiotics on board or releasing him home with antibiotics. We wait to hear....
I hate it, I am terribly busy today. And I loved it. Running, running and running. It feels good to solve or fix something or just put one hour a head of another hour. I wish Jeremie could have some release or escape. Praying his headache is finally letting up and he can have a more enjoyable weekend with us. It is much better to have him in the hospital here, instead of in Salt Lake! I can do this! Tuck him in at night AND tuck my babies in AND go to work. Exhausting but doable...without painful guilt of being away from Jeremie or the kids.
And tomorrow is turkey day. I have so many things to be grateful for :-)
He was supposed to have a lumbar puncture today, but it was put on hold until Friday/Saturday. For unknown reasons...grrrr. Super frustrating. I was very relieved he was admitted. He needed the support and medication for his horrible head pain.
He said things were ok today. Just feeling the head pain. I am very frustrated they didn't do the lumbar puncture and the blood patch today. That might help cure this stupid headache. GRRRR!!!! He wants to come home. He is waiting to hear back from Dr. Lemon to see if he can be discharged. Last night I was told by Dr. Lemon that he would be consulting with the team in Salt Lake about the fevers and the possibility of keeping him with antiobiotics on board or releasing him home with antibiotics. We wait to hear....
I hate it, I am terribly busy today. And I loved it. Running, running and running. It feels good to solve or fix something or just put one hour a head of another hour. I wish Jeremie could have some release or escape. Praying his headache is finally letting up and he can have a more enjoyable weekend with us. It is much better to have him in the hospital here, instead of in Salt Lake! I can do this! Tuck him in at night AND tuck my babies in AND go to work. Exhausting but doable...without painful guilt of being away from Jeremie or the kids.
And tomorrow is turkey day. I have so many things to be grateful for :-)
Monday, November 22, 2010
11/22/10- Day 8 re-induction- Day 3 at home
Woke up just not wanting to do this day today. My bed was feeling wonderful, and for a brief moment all was so well. That stupid alarm clock just kept going off. Grrrr! I was not looking forward to today. I didn't feel prepared to go over everything with my clinical instructor. And I'm not particularly fabulous at focusing at this time in my life.
But a ray of sunshine picked me up this morning to head to Cedar. Oh Miss Amy you are a rock star! Aaaah decompressing my brain and all my worries on this poor soul! She has no idea what a true blessing and friend she is. By the time we got to Cedar I was still a little shaky but not trying to figure out how we could get run off the road. And my desperate prayer for a horrible snow storm didn't pan out! Dang it!
Oh..I just think about entering that building. It is like going to my moms. Warm, welcoming and comforting. The most incredible people I have the honor of working with and learning beside. Truly amazing. I got to have 2 hugs right off the bat! I love that I just have to say "it's ok". And they hear all that is behind that "ok". Working where I work and who I have the opportunity to work with is a different animal compared to the rest of the world. Maybe it is mental health. It is pretty real in there. Offers are true, and not trite. Love is true and given freely. Feedback is given without disdain or without thoughts of tearing you down. And they always want to know what "really" is going on. Not the fluff, or a smile...the real down and dirty. I LOVE IT! It hurts of course, but it makes it easier to get out and think about it with sounding boards to help. Of course they are quite trained in this ability ;-) it is after all what they do.
My clinical instructor- time, didn't go well. I will not be able to use the site I have been using. This is going to be causing a delay in finishing my STUPID MASTERS PROGRAM!!!!! Until about March. UGH! I'm so tired of it I just could SPIT!
Called Jeremie's sweet Nurse Jen at Dr. Lemons Clinic. Left a message, explaining how Jeremie is hurting like crazy, can't sit up, isn't holding anything down. And if they could please take his labs there (usually I don't like them there, it costs me $60, as opposed to free at IHC, but I didn't want him suffering going to other facilities just to save $60). Jeremie text me when he was at Dr. Lemons. They had him laying down. Given some I.V. pain medications along with more anti-nausea and 2 large bags of fluids. Aaaahhhhh! I could feel so much relief. I could breath. He will go back into Dr. Lemons tomorrow for more fluids. Then on Wednesday he will have a blood patch placed at the last lumbar puncture site (hope it will help with the headaches) and then will have platelets given (now need to keep above 75,000 due to the weekly lumbar puncture). Then will have another lumbar puncture with chemotherapy.
Jeremie is officially neutropenic, meaning that his neutrophils have dropped below normal. They are at 100 (normal is above 1500). So his immune system is in the tank. NO SICKIES ALOUD!!!! So I scrubbed down the bedroom and have made a forbidden rule of no children in the room.
He seems to be doing a little bit better. He is sitting up a bit, and walking a bit. Ate some ice cream, and Gatorade. I think we are back on the Twinkies diet...small food full of fat/calories. It works amazingly well. Along side some Gatorade and sprite and the occasional ice cream with raspberries :-)
Good Day with the peeps....Jeremie doing better...I think I can smile today :-)
But a ray of sunshine picked me up this morning to head to Cedar. Oh Miss Amy you are a rock star! Aaaah decompressing my brain and all my worries on this poor soul! She has no idea what a true blessing and friend she is. By the time we got to Cedar I was still a little shaky but not trying to figure out how we could get run off the road. And my desperate prayer for a horrible snow storm didn't pan out! Dang it!
Oh..I just think about entering that building. It is like going to my moms. Warm, welcoming and comforting. The most incredible people I have the honor of working with and learning beside. Truly amazing. I got to have 2 hugs right off the bat! I love that I just have to say "it's ok". And they hear all that is behind that "ok". Working where I work and who I have the opportunity to work with is a different animal compared to the rest of the world. Maybe it is mental health. It is pretty real in there. Offers are true, and not trite. Love is true and given freely. Feedback is given without disdain or without thoughts of tearing you down. And they always want to know what "really" is going on. Not the fluff, or a smile...the real down and dirty. I LOVE IT! It hurts of course, but it makes it easier to get out and think about it with sounding boards to help. Of course they are quite trained in this ability ;-) it is after all what they do.
My clinical instructor- time, didn't go well. I will not be able to use the site I have been using. This is going to be causing a delay in finishing my STUPID MASTERS PROGRAM!!!!! Until about March. UGH! I'm so tired of it I just could SPIT!
Called Jeremie's sweet Nurse Jen at Dr. Lemons Clinic. Left a message, explaining how Jeremie is hurting like crazy, can't sit up, isn't holding anything down. And if they could please take his labs there (usually I don't like them there, it costs me $60, as opposed to free at IHC, but I didn't want him suffering going to other facilities just to save $60). Jeremie text me when he was at Dr. Lemons. They had him laying down. Given some I.V. pain medications along with more anti-nausea and 2 large bags of fluids. Aaaahhhhh! I could feel so much relief. I could breath. He will go back into Dr. Lemons tomorrow for more fluids. Then on Wednesday he will have a blood patch placed at the last lumbar puncture site (hope it will help with the headaches) and then will have platelets given (now need to keep above 75,000 due to the weekly lumbar puncture). Then will have another lumbar puncture with chemotherapy.
Jeremie is officially neutropenic, meaning that his neutrophils have dropped below normal. They are at 100 (normal is above 1500). So his immune system is in the tank. NO SICKIES ALOUD!!!! So I scrubbed down the bedroom and have made a forbidden rule of no children in the room.
He seems to be doing a little bit better. He is sitting up a bit, and walking a bit. Ate some ice cream, and Gatorade. I think we are back on the Twinkies diet...small food full of fat/calories. It works amazingly well. Along side some Gatorade and sprite and the occasional ice cream with raspberries :-)
Good Day with the peeps....Jeremie doing better...I think I can smile today :-)
Sunday, November 21, 2010
Day 7 of re-induction (We're home)
Jeremie was discharged yesterday. Looking back I just don't think he was ready. He isn't doing too well. His Doc's seem to think he is "fine". They let us go home. He still isn't able to sit up, without severe head pain. His poor little hands are swollen. And he definitly has more than a "hint" of a rash from the chemotherapy. He won't drink or eat much. I'm getting a little cranky with it. He needs to flush this stuff out of him. UGH!!! I just don't know what to do.
My clinical coordinator and advisor is coming tomorrow to go over my clinical site and meet my preceptor. And "certify" the site. I'm so worried right now I can't even think about what I need to prepare for right now. I'm writing a budget for a paper for school. YUCK...and I just don't care.
Breathing....breathing....breathing...I guess that is all I can do huh?
Please keep us in your prayers. Pray that his head is relieved soon. That he can feel a little more normal. Thank you.
My clinical coordinator and advisor is coming tomorrow to go over my clinical site and meet my preceptor. And "certify" the site. I'm so worried right now I can't even think about what I need to prepare for right now. I'm writing a budget for a paper for school. YUCK...and I just don't care.
Breathing....breathing....breathing...I guess that is all I can do huh?
Please keep us in your prayers. Pray that his head is relieved soon. That he can feel a little more normal. Thank you.
Friday, November 19, 2010
Day 4 of reinduction
Jeremie is pretty ill from the headache caused from the air pockets in his brain. We are going to stay one more day in the hospital (THANK GOODNESS). Hopefully get his pain under control. This just breaks my heart.
I had a breakdown last night. Yup I have them. I usually don't share them with others. Unfortunately mine started in the elevator. There was Jeremie's nurse for the day. She was getting ready to go home. She was so sweet. I love nurses, this is why I am one. She just let me cry, and booger up her shoulder. Just listening, and holding me. She is amazing. I'm so happy we have her today too.
I'm so overwhelmed with so many things. And yet I have no control, so I have this peace. I just have to be, and be here.
I'm getting panicked at not being home. I miss the kids. I need to be by them. So does their daddy. Hopefully tomorrow.
I had a breakdown last night. Yup I have them. I usually don't share them with others. Unfortunately mine started in the elevator. There was Jeremie's nurse for the day. She was getting ready to go home. She was so sweet. I love nurses, this is why I am one. She just let me cry, and booger up her shoulder. Just listening, and holding me. She is amazing. I'm so happy we have her today too.
I'm so overwhelmed with so many things. And yet I have no control, so I have this peace. I just have to be, and be here.
I'm getting panicked at not being home. I miss the kids. I need to be by them. So does their daddy. Hopefully tomorrow.
Thursday, November 18, 2010
GRRRR...
Sweet Jeremie had to go to have his lumbar puncture today and they decided to do an MRI to rule out a "cause" to his headache.
They were late taking him down to have the lumbar puncture, then he went immediately to MRI. It was several hours before he was back to the room. He said it went pretty well. Called the nurse to get some pain medication for his headache. He was able to enjoy a couple of minutes in silence.
Around 4:00 one of our Oncologist and a P.A. (not my favorite one...blah!) came in the room...followed by my brother-in-law. They promptly announced that the MRI was back and that it showed a sub-arachnoid bleed. And he was immediately being sent down to CT. As MRI wasn't the greatest tool to see bleeds with. They said it was possibly an aneurysm or a blood vessel problem caused by the leukemia. I was scared out of my mind. They said they would be consulting with Neurology immediately and would have the neurologist and the neurosurgeon come talk to us.
Jeremie went down to CT...mind you he had just returned from having a lumbar puncture (needs to stay flat for a minimum of 2 hours to prevent spinal headache), then an MRI, now was being wheeled down for CT. He wasn't in the happiest of moods. While he was gone the oncologist let us know that he spoke with the neurosurgeon who said he was "underwhelmed" by what he saw on the MRI, but that the CT will say what is going on.
Jeremie came back from CT. They ordered platelets as his had fallen to 99,000 (not to bad...not bad enough to get platelets). They wanted to prevent a bleeding problem from having low platelets. So whatever...they ordered platelets. It isn't like it was gonna hurt him. We saw the neurologist who did her assessment. Jeremie's only symptom of a problem is an unrelenting headache.
Doc's ok Chemo to be hung...which was supposed to be started at 1:00 p.m. today. Didn't get started until after 5:00 p.m. But oh well, it isn't looking like we are going anywhere tomorrow :-(
Oncologist practically skips in the room! It is AIR! The CT came back with AIR! Which is totally abnormal, but isn't blood! No broken blood vessel or aneurysm! WOO HOO!!!! They think maybe the air came from the lumbar puncture on Monday!!! And the good news keeps coming. The lumbar puncture came back with ZERO leukemia cells! *\o/*...doing a dance...oh yeah! Aaaaahhhhhhh I can breathe. I think I just aged by 20 years. I'M gonna be the one admitted for a stroke soon!
It was nice to have Robin here for the whole roller coaster ride :-) I don't think he thought so, but it was nice to share the scary up and down mess of our lives right now! Or maybe I was just happy I wasn't alone this time.
They were late taking him down to have the lumbar puncture, then he went immediately to MRI. It was several hours before he was back to the room. He said it went pretty well. Called the nurse to get some pain medication for his headache. He was able to enjoy a couple of minutes in silence.
Around 4:00 one of our Oncologist and a P.A. (not my favorite one...blah!) came in the room...followed by my brother-in-law. They promptly announced that the MRI was back and that it showed a sub-arachnoid bleed. And he was immediately being sent down to CT. As MRI wasn't the greatest tool to see bleeds with. They said it was possibly an aneurysm or a blood vessel problem caused by the leukemia. I was scared out of my mind. They said they would be consulting with Neurology immediately and would have the neurologist and the neurosurgeon come talk to us.
Jeremie went down to CT...mind you he had just returned from having a lumbar puncture (needs to stay flat for a minimum of 2 hours to prevent spinal headache), then an MRI, now was being wheeled down for CT. He wasn't in the happiest of moods. While he was gone the oncologist let us know that he spoke with the neurosurgeon who said he was "underwhelmed" by what he saw on the MRI, but that the CT will say what is going on.
Jeremie came back from CT. They ordered platelets as his had fallen to 99,000 (not to bad...not bad enough to get platelets). They wanted to prevent a bleeding problem from having low platelets. So whatever...they ordered platelets. It isn't like it was gonna hurt him. We saw the neurologist who did her assessment. Jeremie's only symptom of a problem is an unrelenting headache.
Doc's ok Chemo to be hung...which was supposed to be started at 1:00 p.m. today. Didn't get started until after 5:00 p.m. But oh well, it isn't looking like we are going anywhere tomorrow :-(
Oncologist practically skips in the room! It is AIR! The CT came back with AIR! Which is totally abnormal, but isn't blood! No broken blood vessel or aneurysm! WOO HOO!!!! They think maybe the air came from the lumbar puncture on Monday!!! And the good news keeps coming. The lumbar puncture came back with ZERO leukemia cells! *\o/*...doing a dance...oh yeah! Aaaaahhhhhhh I can breathe. I think I just aged by 20 years. I'M gonna be the one admitted for a stroke soon!
It was nice to have Robin here for the whole roller coaster ride :-) I don't think he thought so, but it was nice to share the scary up and down mess of our lives right now! Or maybe I was just happy I wasn't alone this time.
Day 3 of re-induction
Jeremie is having another lumbar puncture today. The last one performed on Monday came back with "rare suspicious looking cells". Most likely leukemia. So this means that he will be getting twice weekly lumbar punctures with chemotherapy. YUCKY! The chemotherapy placed intrathecally (in the thecal space in the spinal column) did do its job. He went from having 9 cells in the "field of vision" or what they saw under the microscope. To one cell in the field of vision. So progress or "headway" as they say it is being made.
He has a "hint" of a rash...last time this was a major side-effect and was quite miserable. We are hoping it doesn't get worse. Unfortunately, he is pretty sick. Nausea/Vomiting last night, along with a pretty massive headache. Part of the chemotherapy regimen this time involves pre-medication with steroids and Tylenol. To head off some of the side-effects. Yet the awesome steroids make him pretty miserable. And seriously amp'd up!
Spoke with the radiation oncologist last night. It was quite informative. A little daunting, and scary. But appreciative that he took the time to explain exactly what to expect and how it will work. I don't think it helped the headache part of last night.
Our insurance approved the testing of cord blood. So a sample of the cord blood is being sent to LDS hospital for additional testing to insure it is a match for Jeremie. He had to have an echo, EKG and a pulmonary function test to make sure he was healthy enough to have a transplant. He is all clear.
We are looking at around 4 weeks to transplant. Looks like we will be in Salt Lake for Christmas. Not very happy about this. We were looking forward to having Christmas at our house this year :-( But oh well, rather have a healthy honey then be at home.
Hopefully we get to come home on Friday :-) He should be able to do the twice weekly lumbar punctures in St. George. He will do this until transplant.
He has a "hint" of a rash...last time this was a major side-effect and was quite miserable. We are hoping it doesn't get worse. Unfortunately, he is pretty sick. Nausea/Vomiting last night, along with a pretty massive headache. Part of the chemotherapy regimen this time involves pre-medication with steroids and Tylenol. To head off some of the side-effects. Yet the awesome steroids make him pretty miserable. And seriously amp'd up!
Spoke with the radiation oncologist last night. It was quite informative. A little daunting, and scary. But appreciative that he took the time to explain exactly what to expect and how it will work. I don't think it helped the headache part of last night.
Our insurance approved the testing of cord blood. So a sample of the cord blood is being sent to LDS hospital for additional testing to insure it is a match for Jeremie. He had to have an echo, EKG and a pulmonary function test to make sure he was healthy enough to have a transplant. He is all clear.
We are looking at around 4 weeks to transplant. Looks like we will be in Salt Lake for Christmas. Not very happy about this. We were looking forward to having Christmas at our house this year :-( But oh well, rather have a healthy honey then be at home.
Hopefully we get to come home on Friday :-) He should be able to do the twice weekly lumbar punctures in St. George. He will do this until transplant.
Wednesday, November 17, 2010
Thankful
So THANKFUL for our families. They are amazing. We always knew we had an amazing family. We knew that they have always supported us, through whatever trial we may be going through. And believe it or not, this isn't our first trial ;-)
So THANKFUL for my job...and of course it is easy to say that. BUT I work with the most amazing people. The 2 doc's I work with, Amy the APRN, Sally and Shar, and of course my friend and Supervisor Lori. How would I be able to be with Jeremie like I am without their support. And I can't say it doesn't hurt to work with therapists either. I have been able to take advantage of many "hallway" therapy sessions. And I'm so thankful for the clients I get to serve. They are angels on earth. AMAZING people!
So THANKFUL for Dr. Lemon in St. George and his amazing staff. They are incredible the way they work with Jeremie. He is treated like a rock star. Plus the clinic is in Ivins. Just beautiful :-)
So THANKFUL for LDS hospital and all the oncologists and nurses. We know them all now. They have been happy with us, disappointed with us and are fighting along side of us. Just to have them on our side is AMAZING!
So THANKFUL for the customers and friends that Jeremie has encountered, they have helped us in so many ways. Having everyone's prayers and good thoughts are touching. I'm thankful and amazed at the people that have been standing by our side. You never know with difficult times who is going to be there to help pick you back up. And again, I'm amazed who keeps showing up to give us support and love.
So THANKFUL for my children. I knew they were amazing, talented, smart, incredible people (cause that is how I'm raising them...ha ha ha). But Alex takes Scarlett to school every morning at 7:00 am, then helps the little boys get ready for school when he gets home from dropping Scarlett off at Tuacahn. Then he goes to the Shop and works. Then he picks up Scarlett from Tuacahn. And then goes to school himself for a couple of hours. He is working on his GED. Harrison is amazing as well. On his own he wakes up at 6:25 to get ready, and catch the bus for school. He helps with keeping the house picked up and torturing the little boys ;-) after all they don't want to feel out of sorts. And my Jeremie Jr. and Phoenix...those sweet little guys. Get up without complaint, shower and get ready every morning. They help out with the house (making a mess) and cleaning it up! They are so sweet. The turmoil and chaos in their lives is unimaginable. I have never had to experience what they have. They have risen to this occasion.
So THANKFUL....Just so thankful for all the gifts of everyday.
So THANKFUL for my job...and of course it is easy to say that. BUT I work with the most amazing people. The 2 doc's I work with, Amy the APRN, Sally and Shar, and of course my friend and Supervisor Lori. How would I be able to be with Jeremie like I am without their support. And I can't say it doesn't hurt to work with therapists either. I have been able to take advantage of many "hallway" therapy sessions. And I'm so thankful for the clients I get to serve. They are angels on earth. AMAZING people!
So THANKFUL for Dr. Lemon in St. George and his amazing staff. They are incredible the way they work with Jeremie. He is treated like a rock star. Plus the clinic is in Ivins. Just beautiful :-)
So THANKFUL for LDS hospital and all the oncologists and nurses. We know them all now. They have been happy with us, disappointed with us and are fighting along side of us. Just to have them on our side is AMAZING!
So THANKFUL for the customers and friends that Jeremie has encountered, they have helped us in so many ways. Having everyone's prayers and good thoughts are touching. I'm thankful and amazed at the people that have been standing by our side. You never know with difficult times who is going to be there to help pick you back up. And again, I'm amazed who keeps showing up to give us support and love.
So THANKFUL for my children. I knew they were amazing, talented, smart, incredible people (cause that is how I'm raising them...ha ha ha). But Alex takes Scarlett to school every morning at 7:00 am, then helps the little boys get ready for school when he gets home from dropping Scarlett off at Tuacahn. Then he goes to the Shop and works. Then he picks up Scarlett from Tuacahn. And then goes to school himself for a couple of hours. He is working on his GED. Harrison is amazing as well. On his own he wakes up at 6:25 to get ready, and catch the bus for school. He helps with keeping the house picked up and torturing the little boys ;-) after all they don't want to feel out of sorts. And my Jeremie Jr. and Phoenix...those sweet little guys. Get up without complaint, shower and get ready every morning. They help out with the house (making a mess) and cleaning it up! They are so sweet. The turmoil and chaos in their lives is unimaginable. I have never had to experience what they have. They have risen to this occasion.
So THANKFUL....Just so thankful for all the gifts of everyday.
Tuesday, November 16, 2010
Day 2 Re-Induction
We had our favorite oncologist come in to speak to us. I LOVE HER! She is so blunt and honest. She is self described as a pessimist "always sees the glass as half-empty". I appreciate this, because I don't like fluff or B.S. when a life is on the line. I like upfront honesty. Worst case scenario is what I want to hear. I know it is morbid, but I can prepare my heart that way.
She told us that Jeremie is "unique". They have never seen anything quite like him. AML with CNS involvement is rare. And like in prior posts his presentation is weird. The leukemia cells in his CNS were of the same cytology, meaning that they were the same type of leukemia. They cannot give us a prognosis, due to Jeremie's unique presentation. But they are taking out the big guns...
The plan involves Jeremie finishing this induction of chemotherapy. Hopefully taking him home, and having him hit his "nader" or zero count at home. We have an awesome routine with Dr. Lemon and the infusion clinic at IHC in St. George (THEY ROCK!). It helps when one of your good friends works at the infusion clinic and is an awesome nurse! I feel that he is in such good hands.
Then we wait for a phone call telling us to return to Salt Lake for the transplant.
With the transplant, there will be a 6 treatment regimen of total body irradiation (TBI), with concentration of irradiation on the cranium and spinal column. This "extra" process of irradiation increases the chance of complete remission in the CNS, which will increase remission/cure percentage. Again cannot give us an exact prognosis.
Next, another treatment regimen of chemotherapy. These treatments are to prepare the bone marrow to have the graft transplanted. The graft will be transfused. It will naturally find its way to the bone, coat it and then find its way into the bone marrow growing and becoming (hopefully) a new immune system capable of kicking any new leukemia's bum.
He will stay in the hospital after the transplant for 4-6 weeks, until his numbers or "counts" come back. These are his platelets, red blood cells and neutrophils. They are the main focus of our life at this time :-) Then will begin the 100 days of being outpatient, but close to LDS hospital. YUCK...still trying to find a way out of this one. I'm a believer of finding "loop" holes ;-)
So the yucky part. This is our last ditch effort. This is throwing everything at him and the kitchen sink, in hopes of achieving a long term remission/cure. If this does not give us remission or cure. Or if his leukemia comes back despite all of this. We don't have any more rabbits to pull out of the hat. Knowing this is scary, to be honest. And it was hard to hear. And again, we don't have a clear percentage of if/how this will work with Jeremie and his unique leukemia.
She told us that Jeremie is "unique". They have never seen anything quite like him. AML with CNS involvement is rare. And like in prior posts his presentation is weird. The leukemia cells in his CNS were of the same cytology, meaning that they were the same type of leukemia. They cannot give us a prognosis, due to Jeremie's unique presentation. But they are taking out the big guns...
The plan involves Jeremie finishing this induction of chemotherapy. Hopefully taking him home, and having him hit his "nader" or zero count at home. We have an awesome routine with Dr. Lemon and the infusion clinic at IHC in St. George (THEY ROCK!). It helps when one of your good friends works at the infusion clinic and is an awesome nurse! I feel that he is in such good hands.
Then we wait for a phone call telling us to return to Salt Lake for the transplant.
With the transplant, there will be a 6 treatment regimen of total body irradiation (TBI), with concentration of irradiation on the cranium and spinal column. This "extra" process of irradiation increases the chance of complete remission in the CNS, which will increase remission/cure percentage. Again cannot give us an exact prognosis.
Next, another treatment regimen of chemotherapy. These treatments are to prepare the bone marrow to have the graft transplanted. The graft will be transfused. It will naturally find its way to the bone, coat it and then find its way into the bone marrow growing and becoming (hopefully) a new immune system capable of kicking any new leukemia's bum.
He will stay in the hospital after the transplant for 4-6 weeks, until his numbers or "counts" come back. These are his platelets, red blood cells and neutrophils. They are the main focus of our life at this time :-) Then will begin the 100 days of being outpatient, but close to LDS hospital. YUCK...still trying to find a way out of this one. I'm a believer of finding "loop" holes ;-)
So the yucky part. This is our last ditch effort. This is throwing everything at him and the kitchen sink, in hopes of achieving a long term remission/cure. If this does not give us remission or cure. Or if his leukemia comes back despite all of this. We don't have any more rabbits to pull out of the hat. Knowing this is scary, to be honest. And it was hard to hear. And again, we don't have a clear percentage of if/how this will work with Jeremie and his unique leukemia.
Monday, November 15, 2010
November 15...
So we are in Salt Lake. YUCK!!!
K...so I have decided that God is teaching me patience and flexibility. I really can't think of another reason? Because I really don't understand the chaos or lack of organization that is involved in this process!!! I will warn you that I will vent...so beware ;-)
We went to the BMT (Bone Marrow Transplant) outpatient clinic. Jeremie had blood drawn. And then we sat in a room for 2 hours waiting. Waiting for what? I really can't tell you. We had fun looking at People and US magazine's. Definitely took our minds off our own stuff going on :-) Our not so favorite P.A. came in to do an assessment. Why she goes up my spine...I actually could tell you, but you would think less of me ;-) Kidding! She just doesn't have the best bed-side manner.
Then one of the oncologists came in and told us our game plan. What is by far the most frustrating thing about this whole process (and I'm not afraid to give feedback)...is their lack of planning and communication. They have the necessary staff, protocols and equipment, just not the actual skills. Grrrr! Anyway...The Doc came in and explained that Jeremie would be starting on a "different" type of chemotherapy. This would run for 5 days. And then we would get to go home. Jeremie will do a lumbar puncture with chemotherapy treatment. If the sample comes back clear of leukemia, Jeremie will have weekly lumbar punctures with chemotherapy until the bone marrow transplant.
They are working on having my insurance cover the cost of HLA testing for umbilical cord transplant. They have matches. Now just have to see how "close" of a match they are. They want to move quickly on the bone marrow transplant. We are still super scared of this process. We have no idea on what to expect.
We spoke with our oncologist in St. George. He was positive about following Jeremie after the transplant. However, this will be determined by how Jeremie does afterward. The difficulty lies in having enough irradiated blood and platelets that match Jeremie at any given time. This is difficult as they expire, are expensive and you just don't have any idea. In a large city like Salt Lake it is not difficult to come by the quantity Jeremie might need. In St. George however, it can possibly be life-threatening if they "run out" or they expire. So we would wait to see how Jeremie recovers. Cross fingers he just does fabulous after transplant, the graft does great and he recovers fast!
Alrighty...news changes fast...so will attempt to keep up todate!
K...so I have decided that God is teaching me patience and flexibility. I really can't think of another reason? Because I really don't understand the chaos or lack of organization that is involved in this process!!! I will warn you that I will vent...so beware ;-)
We went to the BMT (Bone Marrow Transplant) outpatient clinic. Jeremie had blood drawn. And then we sat in a room for 2 hours waiting. Waiting for what? I really can't tell you. We had fun looking at People and US magazine's. Definitely took our minds off our own stuff going on :-) Our not so favorite P.A. came in to do an assessment. Why she goes up my spine...I actually could tell you, but you would think less of me ;-) Kidding! She just doesn't have the best bed-side manner.
Then one of the oncologists came in and told us our game plan. What is by far the most frustrating thing about this whole process (and I'm not afraid to give feedback)...is their lack of planning and communication. They have the necessary staff, protocols and equipment, just not the actual skills. Grrrr! Anyway...The Doc came in and explained that Jeremie would be starting on a "different" type of chemotherapy. This would run for 5 days. And then we would get to go home. Jeremie will do a lumbar puncture with chemotherapy treatment. If the sample comes back clear of leukemia, Jeremie will have weekly lumbar punctures with chemotherapy until the bone marrow transplant.
They are working on having my insurance cover the cost of HLA testing for umbilical cord transplant. They have matches. Now just have to see how "close" of a match they are. They want to move quickly on the bone marrow transplant. We are still super scared of this process. We have no idea on what to expect.
We spoke with our oncologist in St. George. He was positive about following Jeremie after the transplant. However, this will be determined by how Jeremie does afterward. The difficulty lies in having enough irradiated blood and platelets that match Jeremie at any given time. This is difficult as they expire, are expensive and you just don't have any idea. In a large city like Salt Lake it is not difficult to come by the quantity Jeremie might need. In St. George however, it can possibly be life-threatening if they "run out" or they expire. So we would wait to see how Jeremie recovers. Cross fingers he just does fabulous after transplant, the graft does great and he recovers fast!
Alrighty...news changes fast...so will attempt to keep up todate!
Thursday, November 11, 2010
Week of November 8
We did find out that the bilateral biopsies were clear of leukemia. So no leukemia in his actual bone marrow. It is localized to the CNS at this time.
We had a phone call yesterday telling us of our potential plans. We are to be in Salt Lake on 11/15/10 @ 1:00. Jeremie will have another lumbar puncture with chemotherapy administered intrathecally. Will most likely start another induction chemotherapy on Tuesday. They are changing the mix of chemotherapy. He will do 2 different types. One for 5 days the other for 14 days. We may be able to come home to finish the chemo after the 5 days of treatment. Or at least they are checking into it for us.
They are prepping Jeremie for a bone marrow transplant. Once they do the bone marrow transplant he will be in the hospital for 4-6 weeks, waiting for the "new" immune system to start working. After the hospital stay, we are looking at Jeremie staying in Salt Lake for 100 days after the transplant. Again, hoping somehow he can come home to do maintenance. He has an appointment with our oncologist in St. George tomorrow. We are hoping that he might be able to follow Jeremie once he is discharged from the bone marrow transplant. Cross your fingers that this is a possibility.
We had a phone call yesterday telling us of our potential plans. We are to be in Salt Lake on 11/15/10 @ 1:00. Jeremie will have another lumbar puncture with chemotherapy administered intrathecally. Will most likely start another induction chemotherapy on Tuesday. They are changing the mix of chemotherapy. He will do 2 different types. One for 5 days the other for 14 days. We may be able to come home to finish the chemo after the 5 days of treatment. Or at least they are checking into it for us.
They are prepping Jeremie for a bone marrow transplant. Once they do the bone marrow transplant he will be in the hospital for 4-6 weeks, waiting for the "new" immune system to start working. After the hospital stay, we are looking at Jeremie staying in Salt Lake for 100 days after the transplant. Again, hoping somehow he can come home to do maintenance. He has an appointment with our oncologist in St. George tomorrow. We are hoping that he might be able to follow Jeremie once he is discharged from the bone marrow transplant. Cross your fingers that this is a possibility.
Fast Forward...
We went to Salt Lake on 11/1/10 to begin the 3rd round of consolidation chemo. Almost done!!! Jeremie over the last few weeks had been feeling some pretty bad back and shoulder pain. Every time he would hiccup or burp it would double him over. I hated it! It scared me. I just wanted to bubble wrap him and put him in bed. But I swear he has ADHD...he will not stay down for long.
Our oncologist in St. George sent Jeremie in for an MRI to look at his right shoulder as he was having horrible pain. At first they thought it was a blood clot. The MRI showed torn muscles, and "leukemic infiltrate". But it was explained to us that this could just be his bone marrow regenerating. And it looks odd on MRI. Jeremie was scheduled for another bone marrow biopsy with our St. George oncologists. Who wanted to be a "Rebel" and do his own biopsy. He was able to "get aspirate". The glorious fluid that was going to tell us that he was going to be better!
The bone marrow biopsy came back on 10/25/10. We got the call from Dr. Lemon our oncologists here. He said that the results were again inconclusive. Huh? The aspirate looked great, no signs of leukemia or blasts that weren't supposed to be there. But the cells obtained from the bone marrow biopsy looked "weird". Yup...another Dr. using the word "weird" to explain the silly looking odd malformed immature cells that were now in the marrow along with "dead" leukemia cells. GRRRR. Pretty much had a heart attack for 2 solid days as we awaited the cytology reports on these stinking weird cells.
The call came from LDS, from our coordinator Rachel. She reported that the cells were not leukemia!!! Woo Hoo!! So relieved. We were on schedule to come in 11/1/10 at 1:00 so that we could go to MRI for follow-up on the pain he was having in his arm and back, and then a bilateral bone marrow biopsy. Yuck! At this point we where excited to be giving cells to the pathologist at LDS. She was used to looking at Jeremie's odd cells. She wouldn't over react and tell us crazy things such as "weird" or possibly leukemia (or would she?). Then he would start his 3rd consolidation chemotherapy.
Was able to have a very pleasant weekend. Had a wonderful Halloween with the kids. Jeremie was a rock star and took the 3 younger boys trick-or-treating. I stayed at home and passed out candy. We finished the night at MeMe & PePe's. Such a wonderful night!!! Our Sunday was awesome! Just relaxed. Unpacked my last 4 boxes, and put them away.
Left for Salt Lake at 9:00 a.m., it was a bit crazy trying to get out of St. George. Phoenix was having a come-apart about having to go to school. And decided he lost his shoes. Found shoes...grrrr! Hectic makes me cranky. Gave Alex a list of things to make sure he does, then texted the other kids their instructions.
Arrived to Salt Lake 25 mintues late!!! Ran into MRI, of course forgot all the paper work from Snow Canyon Clinic. Had to call and have faxed to them. It was a comparison of the last MRI. Jeremie the trooper went through the MRI.
Went to the Bone Marrow Transplant Clinic at LDS. We were pretty ok then. Just thought we were getting ready for a bone marrow biopsy. Jeremie making sure the poor P.A. knew that he has a high tolerance to pain meds so make sure they work! They admitted Jeremie, and I ran downstairs to grab his pillows and his luggage. I was on the phone with Scarlett making sure everyone got home on time, when Jeremie was trying to call me on the other line. I didn't answer on time. I called back, he sounded upset and wanted me to hurry.
Got my buns up to his room as fast as I could. Of course he is on the 8th floor at LDS. Grrrr. I am thinking that he is upset because they are starting the biopsy and he doesn't have his wife or pillows before they begin. I run into the room and the P.A., nurse and one of our oncologists is there. Weird? I can see Jeremie isn't very happy. Still atributing this to the bilateral bone-marrow biopsy thing.
The doc turns around to me and reports that they found 2 leukemic tumors and 4 compression fractured vertebrae. The tumors are located at T4 and T10 (T means Thoracic). They are ordering a biopsy and a lumbar puncture "you already had a lumbar puncture...right?" Uh no he has never had a lumbar puncture. The nurse "are you sure". Uh yeah I'm sure, would have totally remembered that very invasive super difficult procedure being done on my poor spouse. On to the bone-marrow biopsy. That actually went quite well for once. Not violent. Jeremie adequately medicated and comfortable. And they were able to obtain aspirate. One blessing at this point.
Did not start chemotherapy that night. If by some small chance it was an infection, can't start chemo! Biopsy was supposed to be Tuesday morning. It ended up being Tuesday afternoon. The radiologist at one point gave us hope. During the 4,000 CT scans performed during the biopsy to direct the needle into the very small space in his back, they didn't think the "mass" was coming from the marrow in the vertebrae. So they sampled the "soft tissue" area coming off of the vertebrae. I had the unique pleasure of listening to every difficult word coming from this procedure. It killed me, hearing how difficult this was. It was supposed to be a 30 minute procedure. It turned into 2 hours and 45 minutes. They almost gave up. They were able to get the sample! The radiologists said it "looked more like an extramedullary hematopoiesis. I was so excited! That really could be it. He has been so anemic, maybe it is his body's response to anemia and the bone marrow being so cranky. Oh hope...hope...hope.
Wednesday...11/3/10. Hopes are dashed. They are leukemia. We have to do a lumbar puncture now. Lumbar puncture scheduled and performed on Thursday (said we would be surprised if Leukemia is present). Leukemia is in the CNS. No answers on what came first, or last. No answers on how or why. The only answer...is radiation for the tumors. Then our long term plan is bone marrow transplant. And oh by the way it will have to be an umbilical cord transplant because we can't find a good match. Oh sigh. And the fear sets in.
Thursday 11/4/10. Jeremie is simulated for radiation (or fitted). He is given 6 "freckle" size tattoos. They are to help mark where the radiation is going to "shoot" him. We are discharged from the hospital. We decided to go to Park City to stay. It was so awesome! It felt like a get-away weekend!
Friday 11/5/10. First treatment given. Jeremie did pretty good. Three hours later the nausea/vomitting set in along with exhaustion. Poor man. Just pooped!
Saturday morning. Was able to call up to the bone marrow unit and get a prescription for the nausea and vomitting that he usually only uses during chemo. Now it is going to be a long term fixture. The rad tech's said there shouldn't be a lot of side-effects with this "low of radiation". But when you are shooting it right through his stomach, common sense tells you otherwise. Jeremie counts how long each "shot" takes. A total of 58 seconds! Weird huh! They tell us that he should be out of significant pain by Sunday. Cool!
Sunday morning. Last dose of radiation in Salt Lake. They are really sweet. They helped get everything set up for continuing the radiation in St. George. Jeremie will have 7-10 treatments in total. We leave for home today. Oh I miss the kids! I miss work! I miss everything I ever took advantage of!
Our oncologist in St. George sent Jeremie in for an MRI to look at his right shoulder as he was having horrible pain. At first they thought it was a blood clot. The MRI showed torn muscles, and "leukemic infiltrate". But it was explained to us that this could just be his bone marrow regenerating. And it looks odd on MRI. Jeremie was scheduled for another bone marrow biopsy with our St. George oncologists. Who wanted to be a "Rebel" and do his own biopsy. He was able to "get aspirate". The glorious fluid that was going to tell us that he was going to be better!
The bone marrow biopsy came back on 10/25/10. We got the call from Dr. Lemon our oncologists here. He said that the results were again inconclusive. Huh? The aspirate looked great, no signs of leukemia or blasts that weren't supposed to be there. But the cells obtained from the bone marrow biopsy looked "weird". Yup...another Dr. using the word "weird" to explain the silly looking odd malformed immature cells that were now in the marrow along with "dead" leukemia cells. GRRRR. Pretty much had a heart attack for 2 solid days as we awaited the cytology reports on these stinking weird cells.
The call came from LDS, from our coordinator Rachel. She reported that the cells were not leukemia!!! Woo Hoo!! So relieved. We were on schedule to come in 11/1/10 at 1:00 so that we could go to MRI for follow-up on the pain he was having in his arm and back, and then a bilateral bone marrow biopsy. Yuck! At this point we where excited to be giving cells to the pathologist at LDS. She was used to looking at Jeremie's odd cells. She wouldn't over react and tell us crazy things such as "weird" or possibly leukemia (or would she?). Then he would start his 3rd consolidation chemotherapy.
Was able to have a very pleasant weekend. Had a wonderful Halloween with the kids. Jeremie was a rock star and took the 3 younger boys trick-or-treating. I stayed at home and passed out candy. We finished the night at MeMe & PePe's. Such a wonderful night!!! Our Sunday was awesome! Just relaxed. Unpacked my last 4 boxes, and put them away.
Left for Salt Lake at 9:00 a.m., it was a bit crazy trying to get out of St. George. Phoenix was having a come-apart about having to go to school. And decided he lost his shoes. Found shoes...grrrr! Hectic makes me cranky. Gave Alex a list of things to make sure he does, then texted the other kids their instructions.
Arrived to Salt Lake 25 mintues late!!! Ran into MRI, of course forgot all the paper work from Snow Canyon Clinic. Had to call and have faxed to them. It was a comparison of the last MRI. Jeremie the trooper went through the MRI.
Went to the Bone Marrow Transplant Clinic at LDS. We were pretty ok then. Just thought we were getting ready for a bone marrow biopsy. Jeremie making sure the poor P.A. knew that he has a high tolerance to pain meds so make sure they work! They admitted Jeremie, and I ran downstairs to grab his pillows and his luggage. I was on the phone with Scarlett making sure everyone got home on time, when Jeremie was trying to call me on the other line. I didn't answer on time. I called back, he sounded upset and wanted me to hurry.
Got my buns up to his room as fast as I could. Of course he is on the 8th floor at LDS. Grrrr. I am thinking that he is upset because they are starting the biopsy and he doesn't have his wife or pillows before they begin. I run into the room and the P.A., nurse and one of our oncologists is there. Weird? I can see Jeremie isn't very happy. Still atributing this to the bilateral bone-marrow biopsy thing.
The doc turns around to me and reports that they found 2 leukemic tumors and 4 compression fractured vertebrae. The tumors are located at T4 and T10 (T means Thoracic). They are ordering a biopsy and a lumbar puncture "you already had a lumbar puncture...right?" Uh no he has never had a lumbar puncture. The nurse "are you sure". Uh yeah I'm sure, would have totally remembered that very invasive super difficult procedure being done on my poor spouse. On to the bone-marrow biopsy. That actually went quite well for once. Not violent. Jeremie adequately medicated and comfortable. And they were able to obtain aspirate. One blessing at this point.
Did not start chemotherapy that night. If by some small chance it was an infection, can't start chemo! Biopsy was supposed to be Tuesday morning. It ended up being Tuesday afternoon. The radiologist at one point gave us hope. During the 4,000 CT scans performed during the biopsy to direct the needle into the very small space in his back, they didn't think the "mass" was coming from the marrow in the vertebrae. So they sampled the "soft tissue" area coming off of the vertebrae. I had the unique pleasure of listening to every difficult word coming from this procedure. It killed me, hearing how difficult this was. It was supposed to be a 30 minute procedure. It turned into 2 hours and 45 minutes. They almost gave up. They were able to get the sample! The radiologists said it "looked more like an extramedullary hematopoiesis. I was so excited! That really could be it. He has been so anemic, maybe it is his body's response to anemia and the bone marrow being so cranky. Oh hope...hope...hope.
Wednesday...11/3/10. Hopes are dashed. They are leukemia. We have to do a lumbar puncture now. Lumbar puncture scheduled and performed on Thursday (said we would be surprised if Leukemia is present). Leukemia is in the CNS. No answers on what came first, or last. No answers on how or why. The only answer...is radiation for the tumors. Then our long term plan is bone marrow transplant. And oh by the way it will have to be an umbilical cord transplant because we can't find a good match. Oh sigh. And the fear sets in.
Thursday 11/4/10. Jeremie is simulated for radiation (or fitted). He is given 6 "freckle" size tattoos. They are to help mark where the radiation is going to "shoot" him. We are discharged from the hospital. We decided to go to Park City to stay. It was so awesome! It felt like a get-away weekend!
Friday 11/5/10. First treatment given. Jeremie did pretty good. Three hours later the nausea/vomitting set in along with exhaustion. Poor man. Just pooped!
Saturday morning. Was able to call up to the bone marrow unit and get a prescription for the nausea and vomitting that he usually only uses during chemo. Now it is going to be a long term fixture. The rad tech's said there shouldn't be a lot of side-effects with this "low of radiation". But when you are shooting it right through his stomach, common sense tells you otherwise. Jeremie counts how long each "shot" takes. A total of 58 seconds! Weird huh! They tell us that he should be out of significant pain by Sunday. Cool!
Sunday morning. Last dose of radiation in Salt Lake. They are really sweet. They helped get everything set up for continuing the radiation in St. George. Jeremie will have 7-10 treatments in total. We leave for home today. Oh I miss the kids! I miss work! I miss everything I ever took advantage of!
Update...what is going on?
This is a continuation of basically my facebook update's. The blog is much easier to use. I can have REALLY long posts if I want (kidding!). But all kidding a side it is easier to control and manipulate than a social network site ;-) Plus you don't have to be a facebook member to read a blog :-)
Jeremie was diagnosed with Acute Myelocytic Leukemia on 07/13/10. He was life-flighted to LDS hospital the next day. He was not hemodynamically stable (meaning that his platelets were falling and Dixie Regional didn't know if they could handle it). We were given the choice of going to Hunstman or LDS's new bone marrow and transplant / acute leukemia unit. My insurance company made the choice for us. They covered LDS 100% and Hunstman 40%. We feel we are in wonderful hands.
It was thought that Jeremie had Acute Promyelocytic Leukemia (APML) when he was diagnosed, as he was presenting with DIC (Disseminated Intravascular Coagulation) a scary condition in which the body cannot control clotting mechanisms (to put it in its most simplistic explanation...and I'm into simplistic). Basically the treatment for that was high dose Vitamin A along with some chemo. With a 95% cure rate. We could do that!!!
07/15/10- Nope not APML. It is AML with trisomy 8 which puts Jeremie in the "intermediate risk" category. Meaning 50% long term remission/cure with chemotherapy alone. Or 50% long term remission/cure with bone marrow transplant. And of course Jeremie presents with this form of leukemia as "weird". It is most common in men over the age of 65. And usually not with the associated DIC. Oh and their isn't a lot of "literature" to go with this particular gene mutation with leukemia. Yay! (Again, I'm putting it into its most simplistic form)
The decision to go with "just" chemotherapy alone was made. Due to the similar percentage of remission/cure. But chemotherapy alone is a whole lot easier to go through, then getting ready for a transplant. A transplant would require a longer treatment period, along with a 6-10% mortality rate with going through the process of getting ready to have the transplant.
Jeremie's brother Robin was tested to "see" if he was a match. "Just in case" a transplant was needed in the future...kind of like an insurance policy. He wasn't a match :-( But we were told that Jeremie would probably have a 95% chance of finding an unrelated bone marrow match on the registry.
Jeremie went through his Induction chemotherapy like a champ. In fact they were going to do it again! But he started having some problems tolerating antibiotics, developed diabetes insipidus (not really diabetes, but makes you go to the bathroom and feel crazy thirsty...it is a brain thing, not a sugar/insulin thing). Developed 3 different rashes from Vancomycin, Tobramycin and Imipenem. Imipenem was the culprit behind the diabetes insipidus (we think?). So needless to say he did great with Chemo and not so great with antibiotics. He developed a small bowel infection during this time as well. So the poor man was on TPN (artifical nutrition, given through his port or I.V. access). He didn't mind at the time. He didn't have to worry about calorie counts :-)
He spent exactly 30 days in the hospital from 07/13/10 to 08/13/10. He came home for 10 days. It was glorious!!! We had just closed on our new home on 07/07/10 and a week later he was in LDS with Leukemia!!! CRAZY! So we worked a bit on our home, and spent nice time together as a family. It was heaven.
He started consolidation chemotherapy on 08/23/10. That went pretty well. Always a learning experience. He had to see how he would tolerate this type of chemo. Before it was given over 7 solid days, a constant drip. This time they give high dose over 2 hours, stop, wait 12 hours, give it again over 2 hours and then give him a 36 hour break. They do this cycle twice over 6 days. He did become pretty sick the first round. Finally learned by the end how to control and treat the nausea/vomitting. Isn't it cool that he was able to, that this is a possibility?
Brought him home. I was scared to death! I liked the security of the hospital! But we managed! He went a couple of time a week to have his blood drawn and saw our oncologist here in St. George once a week. We had to increase the frequency of blood draws during the week as he did have an instance of very low platelets (8,000, normal is 150-400,000) they like to keep his platelets above 20,000. He seems to feel more ill when his platelets are really low as well.
So before starting the first round of consolidation (there are 4 by the way). He had another bone marrow biopsy. This biopsy came back as "weird". It didn't show any signs of live leukemia, but it was packed with "dead" leukemia cells. Your body doesn't really appreciate having waste built up in it. So while it was good they were dead, why were they still there? And they were unable to obtain "aspirate" from the bone marrow (the fluid that would give us a LOT of information) The normal protocol is to have the biopsy before the first round of consolidation chemo and then another biopsy after finishing all rounds of consolidation chemo. Nope not Jeremie. He had a repeat biopsy before each treatment of consolidation. Each biopsy, except the last one (that is a different story) came back as similar. Dead leukemia cells, and no aspirate. The decision was that Jeremie is "weird". He isn't showing signs of disease. His blood counts come back up after chemo, just as they like. So we move forward.
Part of the recovery process after consolidation is starting on a medication called Neupogen. It stimulates growth of the new white blood cells. That way he can have an immune system. And it does it fast! But there is a major side-effect. PAIN! It scared us both to death when this pain started, as it was just like his leukemic pain he had before he was diagnosed. Learned that it was normal. And after discontinuing the medication for 5 days the pain should decrease. Whew...super scary!!!
We were getting pretty comfortable with how things were going. We didn't have anxiety with the consolidaton chemo anymore. We knew all nurses, and Doc's. We knew each clinic from SLC to St. George. We knew how Jeremie's body responded to the medications, etc. The new normal wasn't so crappy after all. We could do this...
Jeremie was diagnosed with Acute Myelocytic Leukemia on 07/13/10. He was life-flighted to LDS hospital the next day. He was not hemodynamically stable (meaning that his platelets were falling and Dixie Regional didn't know if they could handle it). We were given the choice of going to Hunstman or LDS's new bone marrow and transplant / acute leukemia unit. My insurance company made the choice for us. They covered LDS 100% and Hunstman 40%. We feel we are in wonderful hands.
It was thought that Jeremie had Acute Promyelocytic Leukemia (APML) when he was diagnosed, as he was presenting with DIC (Disseminated Intravascular Coagulation) a scary condition in which the body cannot control clotting mechanisms (to put it in its most simplistic explanation...and I'm into simplistic). Basically the treatment for that was high dose Vitamin A along with some chemo. With a 95% cure rate. We could do that!!!
07/15/10- Nope not APML. It is AML with trisomy 8 which puts Jeremie in the "intermediate risk" category. Meaning 50% long term remission/cure with chemotherapy alone. Or 50% long term remission/cure with bone marrow transplant. And of course Jeremie presents with this form of leukemia as "weird". It is most common in men over the age of 65. And usually not with the associated DIC. Oh and their isn't a lot of "literature" to go with this particular gene mutation with leukemia. Yay! (Again, I'm putting it into its most simplistic form)
The decision to go with "just" chemotherapy alone was made. Due to the similar percentage of remission/cure. But chemotherapy alone is a whole lot easier to go through, then getting ready for a transplant. A transplant would require a longer treatment period, along with a 6-10% mortality rate with going through the process of getting ready to have the transplant.
Jeremie's brother Robin was tested to "see" if he was a match. "Just in case" a transplant was needed in the future...kind of like an insurance policy. He wasn't a match :-( But we were told that Jeremie would probably have a 95% chance of finding an unrelated bone marrow match on the registry.
Jeremie went through his Induction chemotherapy like a champ. In fact they were going to do it again! But he started having some problems tolerating antibiotics, developed diabetes insipidus (not really diabetes, but makes you go to the bathroom and feel crazy thirsty...it is a brain thing, not a sugar/insulin thing). Developed 3 different rashes from Vancomycin, Tobramycin and Imipenem. Imipenem was the culprit behind the diabetes insipidus (we think?). So needless to say he did great with Chemo and not so great with antibiotics. He developed a small bowel infection during this time as well. So the poor man was on TPN (artifical nutrition, given through his port or I.V. access). He didn't mind at the time. He didn't have to worry about calorie counts :-)
He spent exactly 30 days in the hospital from 07/13/10 to 08/13/10. He came home for 10 days. It was glorious!!! We had just closed on our new home on 07/07/10 and a week later he was in LDS with Leukemia!!! CRAZY! So we worked a bit on our home, and spent nice time together as a family. It was heaven.
He started consolidation chemotherapy on 08/23/10. That went pretty well. Always a learning experience. He had to see how he would tolerate this type of chemo. Before it was given over 7 solid days, a constant drip. This time they give high dose over 2 hours, stop, wait 12 hours, give it again over 2 hours and then give him a 36 hour break. They do this cycle twice over 6 days. He did become pretty sick the first round. Finally learned by the end how to control and treat the nausea/vomitting. Isn't it cool that he was able to, that this is a possibility?
Brought him home. I was scared to death! I liked the security of the hospital! But we managed! He went a couple of time a week to have his blood drawn and saw our oncologist here in St. George once a week. We had to increase the frequency of blood draws during the week as he did have an instance of very low platelets (8,000, normal is 150-400,000) they like to keep his platelets above 20,000. He seems to feel more ill when his platelets are really low as well.
So before starting the first round of consolidation (there are 4 by the way). He had another bone marrow biopsy. This biopsy came back as "weird". It didn't show any signs of live leukemia, but it was packed with "dead" leukemia cells. Your body doesn't really appreciate having waste built up in it. So while it was good they were dead, why were they still there? And they were unable to obtain "aspirate" from the bone marrow (the fluid that would give us a LOT of information) The normal protocol is to have the biopsy before the first round of consolidation chemo and then another biopsy after finishing all rounds of consolidation chemo. Nope not Jeremie. He had a repeat biopsy before each treatment of consolidation. Each biopsy, except the last one (that is a different story) came back as similar. Dead leukemia cells, and no aspirate. The decision was that Jeremie is "weird". He isn't showing signs of disease. His blood counts come back up after chemo, just as they like. So we move forward.
Part of the recovery process after consolidation is starting on a medication called Neupogen. It stimulates growth of the new white blood cells. That way he can have an immune system. And it does it fast! But there is a major side-effect. PAIN! It scared us both to death when this pain started, as it was just like his leukemic pain he had before he was diagnosed. Learned that it was normal. And after discontinuing the medication for 5 days the pain should decrease. Whew...super scary!!!
We were getting pretty comfortable with how things were going. We didn't have anxiety with the consolidaton chemo anymore. We knew all nurses, and Doc's. We knew each clinic from SLC to St. George. We knew how Jeremie's body responded to the medications, etc. The new normal wasn't so crappy after all. We could do this...
Tuesday, November 9, 2010
DKMS Bone Marrow Registry
You could be the cure for someone's cancer...
Yup...you, you could hold the key to someone's future, someone's extra time with their family and friends. It isn't everyday that a single person could actually CURE cancer.
Please
Please go to http://www.dkmsamericas.org/
Please Register
Please swab your cheeks (takes 2 minutes) and send back in postage paid envelop.
That is it! You are now registered to help cure someone's leukemia.
Love,
Cori
Yup...you, you could hold the key to someone's future, someone's extra time with their family and friends. It isn't everyday that a single person could actually CURE cancer.
Please
Please go to http://www.dkmsamericas.org/
Please Register
Please swab your cheeks (takes 2 minutes) and send back in postage paid envelop.
That is it! You are now registered to help cure someone's leukemia.
Love,
Cori
Monday, November 8, 2010
New beginnings
Hello to all of you! If you have found yourself at this blog, then more than likely you were directed here by a post on either Jeremie Saville or Cori Saville's facebook.
My name is Casey Cassell. I created this blog for Cori and Jeremie to keep their family and friends up to date on Jeremie's ongoing Leukemia treatment.
As many of you know Jeremie was diagnosed with Leukemia in July, just a week after they closed on their dream home. With all that's going on with Jeremie, he is unable to work. Which means not only is that hard on him artistically, since he makes some of the most beautiful furniture I've ever seen, but it also takes it's toll on their family financially.
My mom and I decided that a lot of you want to help. We have created a paypal account to accept donations in Cori and Jeremie's names. This account was created to help them with every day life, providing a good Christmas for their children, and Jeremie's medical bills. It took a bit to convince them this was a good idea. But unless you know me, you don't know my power of persuasion. ;-)
I realize as well that times are tough and not very many have a lot to give other than good energy and prayers. Please know those are always accepted! But if you do have a spare bit of change to donate please do. They greatly appreciate it.
After this post, Cori and Jeremie will be updating themselves. This will give both of them a place to update their friends and family, let out their frustration, or just talk about their every day life with their amazing kids.
But if you could help please donate.
Thank you for all your prayers, positive energy, and support!
My name is Casey Cassell. I created this blog for Cori and Jeremie to keep their family and friends up to date on Jeremie's ongoing Leukemia treatment.
As many of you know Jeremie was diagnosed with Leukemia in July, just a week after they closed on their dream home. With all that's going on with Jeremie, he is unable to work. Which means not only is that hard on him artistically, since he makes some of the most beautiful furniture I've ever seen, but it also takes it's toll on their family financially.
My mom and I decided that a lot of you want to help. We have created a paypal account to accept donations in Cori and Jeremie's names. This account was created to help them with every day life, providing a good Christmas for their children, and Jeremie's medical bills. It took a bit to convince them this was a good idea. But unless you know me, you don't know my power of persuasion. ;-)
I realize as well that times are tough and not very many have a lot to give other than good energy and prayers. Please know those are always accepted! But if you do have a spare bit of change to donate please do. They greatly appreciate it.
After this post, Cori and Jeremie will be updating themselves. This will give both of them a place to update their friends and family, let out their frustration, or just talk about their every day life with their amazing kids.
But if you could help please donate.
Thank you for all your prayers, positive energy, and support!
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