At 1:45 this afternoon Jeremie's first cord-blood stem cell transplant was transfused. It went awesome! It was so neat. The medical technician from the University of Utah was so cute. She was just as excited as we were. The cells survived being thawed with 96% of the stem cells viable. It is a large, healthy sample :-) Jeremie didn't have any terrible reactions and slept through the procedure. Sort of against his will. They had to give him a bunch of pre-meds to help with any adverse reaction he might have.
Our next transfusion will be around 5'ish. It takes approximately 3 hours to get the cells ready for transplant. They have to be thawed, the cells tested to see how they survived the thaw, and cell counts taken. They had to wait to give the go-ahead to start the thawing process, to see how Jeremie handled the first transfusion. Since he did great, the call was made and they are in process.
He will have to be started on TPN (total parenteral nutrition) or I.V. nutrition. He isn't getting his calorie counts in and they need him to stay strong. So he will be started on that later in the evening. He also will be getting platelets as his are down to around 14,000.
I'm not quite sure why...but I'm just excited. I feel we are on the right course...that or I'm reacting to everyone's excitement around me ;-)
Love to all,
Cori
Thursday, February 24, 2011
*02-24-2011*
This is now going to be such a significant day in our lives. A special day, full of hope and healing.
While all the nurses here at LDS are AMAZING, and I'm so appreciative of all of them. Jeremie is ecstatic that he has his favorite nurse on this special day. And he is truly making a difference at keeping our nerves settled! He let us know that one of the cord-blood stem cells is from Italy, possibly Rome. And one from here in the United States. Kind of like Jeremie, his mom is from Europe (France) and his dad from the United States.
Both sets of cells are here at LDS. Our small "bag" which is still a good size sample, is 25 mL in volume. It will have different additives and medications added to the bag that will be infused. The two different cord-blood cells will be transfused at different times. He has to be pre-medicated before each transfusion, similar to when he receives blood. To avoid any "transfusion" reactions. The "transplant" will be transfused exactly like he would receive a blood transfusion, right into his port. Just like he receives all fluids and medications :-). Nothing to hard, or different from any other day. Kind of anti-climatic huh?
They are doing a different protocol for Jeremie. He received a couple more doses of irradiation, and stronger chemotherapy. And started a couple of days earlier on his anti-graft vs host disease meds.
There is a definite air of excitement today. I think they are just as excited and hopeful for this to work. Again, amazing minds, experience, skills and compassion are on our side here. We feel so loved and supported.
Well there will probably more updates throughout the day as we progress...
Lots of Love,
Cori
While all the nurses here at LDS are AMAZING, and I'm so appreciative of all of them. Jeremie is ecstatic that he has his favorite nurse on this special day. And he is truly making a difference at keeping our nerves settled! He let us know that one of the cord-blood stem cells is from Italy, possibly Rome. And one from here in the United States. Kind of like Jeremie, his mom is from Europe (France) and his dad from the United States.
Both sets of cells are here at LDS. Our small "bag" which is still a good size sample, is 25 mL in volume. It will have different additives and medications added to the bag that will be infused. The two different cord-blood cells will be transfused at different times. He has to be pre-medicated before each transfusion, similar to when he receives blood. To avoid any "transfusion" reactions. The "transplant" will be transfused exactly like he would receive a blood transfusion, right into his port. Just like he receives all fluids and medications :-). Nothing to hard, or different from any other day. Kind of anti-climatic huh?
They are doing a different protocol for Jeremie. He received a couple more doses of irradiation, and stronger chemotherapy. And started a couple of days earlier on his anti-graft vs host disease meds.
There is a definite air of excitement today. I think they are just as excited and hopeful for this to work. Again, amazing minds, experience, skills and compassion are on our side here. We feel so loved and supported.
Well there will probably more updates throughout the day as we progress...
Lots of Love,
Cori
Wednesday, February 23, 2011
02/23/2011
Today is the day of rest. Meaning no chemo or irradiation for Jeremie. He said he had a terrible night. Up and down. This was the night, for some reason I totally and completely loss consciousness. I mean knocked out! I must have been completely exhausted. I woke up thinking we had a great night! Poor Jeremie!
He is doing great though today. A couple of bags off of the I.V. poll, very good for the morale. Makes you think you are moving forward. He is definitely weaker from the chemo and irradiation. He is super man though. I can't believe how his body is beaten up and he keeps getting up again, and again.
Talked a lot to the nurse last night. They are great at letting us know what to expect. It is different to hear it from the people taking care of the patients, compared to hearing the "statistics" or "possibilities" from the Doc's. So we feel adequately prepared not to be disappointed when the transplant happens and Jeremie isn't magically better. Even after his numbers return his body will still be working hard to heal from the great insult to get him ready for this transplant.
Aahhh he is my sunshine...amazing person to be around. His strength is infectious. Well tomorrow is the big day! They said the cells should be ready for transfusion around 11:00'ish. Keep up the prayers. Pray the cells engraft and everything goes as smooth as it possibly can.
Love to all!
Cori
He is doing great though today. A couple of bags off of the I.V. poll, very good for the morale. Makes you think you are moving forward. He is definitely weaker from the chemo and irradiation. He is super man though. I can't believe how his body is beaten up and he keeps getting up again, and again.
Talked a lot to the nurse last night. They are great at letting us know what to expect. It is different to hear it from the people taking care of the patients, compared to hearing the "statistics" or "possibilities" from the Doc's. So we feel adequately prepared not to be disappointed when the transplant happens and Jeremie isn't magically better. Even after his numbers return his body will still be working hard to heal from the great insult to get him ready for this transplant.
Aahhh he is my sunshine...amazing person to be around. His strength is infectious. Well tomorrow is the big day! They said the cells should be ready for transfusion around 11:00'ish. Keep up the prayers. Pray the cells engraft and everything goes as smooth as it possibly can.
Love to all!
Cori
Tuesday, February 22, 2011
02/22/2011
Jeremie had a great evening. Went and got him some Olive Garden for dinner. He ate great :-) And we enjoyed our evening. We had a great nurse with us last night. He was the nurse Jeremie had on his first night here (first diagnosis). On his first admission he told him that he thought God personally touched his hands for the kind work he did. Hee hee hee. I reminded the nurse last night. He blushed about 4 different shades of red :-)
Our night did not go well at all. It was pretty miserable. Jeremie started violently throwing up around midnight. And he was also started on several of the new I.V. anti-graft vs host disease meds. So between throwing-up and trying to get the pumps to stop their incessant beeping it was a loud, miserable night. I felt so bad. He didn't know when it was going to hit him. So I tried hard to always have a clean up-chuck bucket. No one likes to throw-up in their throw-up...ewwww.
We finally got a handle on it around noon today. He is on around the clock anti-nausea med's. They make him so groggy and tired. He slept a little. I started falling asleep no matter where I was. If I was sitting up propped against the wall or the bathroom or the chair. I've never been like that! I slept the best in a little ball on the chair :-)
He has a weird side-effect from one of the chemotherapy's. It makes him hiccup...a lot! One of the oncologist showed us a acupuncture technique on his back to help slow it down. We are going to keep trying it ;-), maybe it will work. His "old" pain has decreased significantly. In that regard it is nice to see him move easier. Before he couldn't get out of his bed without help. And he was so bent over in pain. Now he is easily bouncing out of bed, albeit to run to the bathroom.
We never know what kind of day it is going to be. And boy, things sure change in a heart beat. We are still on schedule for transplant on Thursday :-) Jeremie's numbers are taking a nose-dive. He had to have blood yesterday. But his platelets are around 47,000 today. His neutrophils are down to around 500. Officially he is at risk for a lot of infections. He is on 2 different antibiotics, an anti fungal, and high-dose anti-viral. Hopefully we can keep him healthy during this scary process. Around 22-42 days is the average it will take for his transplant to give us some healthy new blood cells, platelets and neutrophils :-)
Well that is all for now :-)
Love,
Cori
Our night did not go well at all. It was pretty miserable. Jeremie started violently throwing up around midnight. And he was also started on several of the new I.V. anti-graft vs host disease meds. So between throwing-up and trying to get the pumps to stop their incessant beeping it was a loud, miserable night. I felt so bad. He didn't know when it was going to hit him. So I tried hard to always have a clean up-chuck bucket. No one likes to throw-up in their throw-up...ewwww.
We finally got a handle on it around noon today. He is on around the clock anti-nausea med's. They make him so groggy and tired. He slept a little. I started falling asleep no matter where I was. If I was sitting up propped against the wall or the bathroom or the chair. I've never been like that! I slept the best in a little ball on the chair :-)
He has a weird side-effect from one of the chemotherapy's. It makes him hiccup...a lot! One of the oncologist showed us a acupuncture technique on his back to help slow it down. We are going to keep trying it ;-), maybe it will work. His "old" pain has decreased significantly. In that regard it is nice to see him move easier. Before he couldn't get out of his bed without help. And he was so bent over in pain. Now he is easily bouncing out of bed, albeit to run to the bathroom.
We never know what kind of day it is going to be. And boy, things sure change in a heart beat. We are still on schedule for transplant on Thursday :-) Jeremie's numbers are taking a nose-dive. He had to have blood yesterday. But his platelets are around 47,000 today. His neutrophils are down to around 500. Officially he is at risk for a lot of infections. He is on 2 different antibiotics, an anti fungal, and high-dose anti-viral. Hopefully we can keep him healthy during this scary process. Around 22-42 days is the average it will take for his transplant to give us some healthy new blood cells, platelets and neutrophils :-)
Well that is all for now :-)
Love,
Cori
Monday, February 21, 2011
02/21/2011
Happy Birthday Phoenix! The big 9! Woo Hoo!!! We sure miss you doll baby! All we have been doing lately is chit-chatting about our wonderful children. What a crazy and scary time in their life this must be. I have no way to comprehend how this feels to small children. They are courageous, smart and loving kids.
Alex, Scarlett, Harrison, Jeremie Jr., and Phoenix, you all amaze your parents. We don't now what we did right to have such incredible people in our lives. Your dad misses the richness and fullness that you provide. We are never bored are we? We are so proud of how you all have chosen to help our family at this time. Running the household, making sure you all are fed, and going to school. Despite having something scary and out of control happening to our family. We both love you more than we could possibly ever say or do. And Thank You ALL :-)
Jeremie is beginning day two of his chemotherapy treatment. Today it is mixed with a different type of chemo, and he is beginning his medications that will decrease the incidence of graft-vs-host disease, when he is receives his cord-blood transplant on Thursday. He is starting to feel the effects from irradiation and the chemo. Total exhaustion and some nausea. He is achy and sore, but reports that the searing, bone-crushing pain that he was having has gone. He is quite alert today, and seems more like my Jeremie.
Tomorrow we will be adding more anti-graft-vs-host disease drugs, and it will be our last day of chemotherapy. Wednesday no chemo or radiation :-). Thursday...our day of miracles. Although each day has been a miracle.
We were asked when making the decision about cord-blood transplant to consider quality of life vs quantity of life. At that time it was thought that a cord-blood transplant would decrease his quality of life, and maybe just extend his life a little. Well as you noticed we took over a month to make this decision. And right now, with just the irradiation and chemotherapy I know for sure we made the right decision, and it has increased his quality of life, and as a consequence it will possibly extend his life. I'm praying as always that this will be our magic bullet. But grateful that if it isn't, that his pain is leaving his body.
Lots of Love,
Cori
Alex, Scarlett, Harrison, Jeremie Jr., and Phoenix, you all amaze your parents. We don't now what we did right to have such incredible people in our lives. Your dad misses the richness and fullness that you provide. We are never bored are we? We are so proud of how you all have chosen to help our family at this time. Running the household, making sure you all are fed, and going to school. Despite having something scary and out of control happening to our family. We both love you more than we could possibly ever say or do. And Thank You ALL :-)
Jeremie is beginning day two of his chemotherapy treatment. Today it is mixed with a different type of chemo, and he is beginning his medications that will decrease the incidence of graft-vs-host disease, when he is receives his cord-blood transplant on Thursday. He is starting to feel the effects from irradiation and the chemo. Total exhaustion and some nausea. He is achy and sore, but reports that the searing, bone-crushing pain that he was having has gone. He is quite alert today, and seems more like my Jeremie.
Tomorrow we will be adding more anti-graft-vs-host disease drugs, and it will be our last day of chemotherapy. Wednesday no chemo or radiation :-). Thursday...our day of miracles. Although each day has been a miracle.
We were asked when making the decision about cord-blood transplant to consider quality of life vs quantity of life. At that time it was thought that a cord-blood transplant would decrease his quality of life, and maybe just extend his life a little. Well as you noticed we took over a month to make this decision. And right now, with just the irradiation and chemotherapy I know for sure we made the right decision, and it has increased his quality of life, and as a consequence it will possibly extend his life. I'm praying as always that this will be our magic bullet. But grateful that if it isn't, that his pain is leaving his body.
Lots of Love,
Cori
Sunday, February 20, 2011
02/20/2011
Today has been a good day. Jeremie is doing pretty well. Today he started chemotherapy. It went quite well. No major side-effects. He is dead tired, but moving around better and better. And is more coherent now.
He tells me that he sees our children at his side at all times. That if he doesn't stare right at him he can see his PePe from France. He makes me laugh in his sleep, as he is disciplining our children constantly. I wonder if during sleep he is "visiting" them, and seeing all the naughty things they are up to ;-)
I appreciate the comfort that it seems to bring him. I've always known we are surrounded by angels, and this is how they are manifesting themselves to him. Such comfort and a sense of normalcy that it gives his heart.
We heard incredibly sad news today. One of the neatest and dearest people that we have known passed away today from cancer. Brother and Sister Bengzten our thoughts and prayers are with you at this time. We love you so much. Brother Bengzten was instrumental in Jeremie and I going to the temple and becoming sealed for time and all eternity. They were wonderful, supporting and loving neighbors. Their example of love, marriage and service touch us to this day. All I can seem to see in my mind his his never ending smile. Love you and your family at this difficult time.
Love to all, and thank you for your continued love and prayers,
Cori
He tells me that he sees our children at his side at all times. That if he doesn't stare right at him he can see his PePe from France. He makes me laugh in his sleep, as he is disciplining our children constantly. I wonder if during sleep he is "visiting" them, and seeing all the naughty things they are up to ;-)
I appreciate the comfort that it seems to bring him. I've always known we are surrounded by angels, and this is how they are manifesting themselves to him. Such comfort and a sense of normalcy that it gives his heart.
We heard incredibly sad news today. One of the neatest and dearest people that we have known passed away today from cancer. Brother and Sister Bengzten our thoughts and prayers are with you at this time. We love you so much. Brother Bengzten was instrumental in Jeremie and I going to the temple and becoming sealed for time and all eternity. They were wonderful, supporting and loving neighbors. Their example of love, marriage and service touch us to this day. All I can seem to see in my mind his his never ending smile. Love you and your family at this difficult time.
Love to all, and thank you for your continued love and prayers,
Cori
Friday, February 18, 2011
No title...more emotional junk
I'm totally using this as an outlet...just to warn you. I'm amazed at how writing things out calms me down. Helps my IQ to return to normal.
We will start off with the days events. Jeremie completed another 2 treatments of total body irradiation (TBI). He is doing so much better. He has been eating, no major nausea or side-effects from radiation (yet). Tomorrow is the last 2 treatments. Then on Sunday we begin the chemo. He is more clear today. Not needing so much medication. This is nice. I have missed chitter-chatting away at him. Maybe that is why he needs meds??? Hmmmm??? :-) Although he decided to tell me that I was plump in the center and attempted to poke me! I looked at him and asked what did he mean by that, and he looked sad and said if I was going to be rude then I should go back to bed! And promptly shut his eyes and was asleep! Gotta love pain meds. And yes, I am obviously going to remind him about my plump center!
So on to my rant. I think the unit is chalk full of leukemia patients. And I don't think the nurses are coping well. That is my first observation. I don't know what they are telling each other in report, but when they come into Jeremie's room they are a bit hyper, eyes darting everywhere, and seem a bit nervous. They chill out by the afternoon, and things work themselves out. The nurse leaves a bit less anxious. Or so it appears. So we begin the next cycle, the night nurse. Seriously??? Are we going to go through this again. Even before the nurse enters...which by the way it took 2 hrs and 45 minutes from when she got on shift to come in. The aid brought - and I kid you not, the largest monitoring system - probably from 1982 - into Jeremie's room so they could "monitor" Jeremie's O2 levels in ICU!!! Now??? NOW!!! WE ARE GOING TO DO THIS!!! EARTH TO ANYONE!!!! HELLO!!! HE IS FINALLY STABLE!!! Oh LORD, please, please, please help me find logic in this INSANE FREAKING PLANET!!!!
The night nurse, who usually I LOVE, comes in, can tell that she too has been given the "over exaggerated report". I've worked with nurses like this (DRIVES ME INSANE). This, this is why every encounter with a patient/client, I take a breathe leave my crap and what non-sense I have carrying around with me from the day (or report) and deal with my day. Thank you again Mrs. Atkinson (awesome nursing instructor).
I think the last few days are getting to me...Having a new nurse orienting to LDS Hospital, not even this floor, with us every bloody night...AND I'M EXPLAINING CRAP TO HER! Seriously she was going to give the I.V. Ativan in the line that is like 7 feet from Jeremie's body. Uh Duh sister, he has two open lumens on his freaking port near his chest. Don't make it take 2 hours to get to him that way. Where are they learning this crap??? Grrrrr.
Then student nurses everyday...which I don't totally mind, except when their preceptors send them in when clearly we need the person with the STINKING LICENSE!!!! Ok...another thing that drives me nuts with nurses. NOT BEING ORGANIZED! Come on! There is no excuse. You have 4 patients! Organize yourself and your day. Don't be reactive to your pumps, control them and know when they are going to be empty. I mean hello...it gives you how long it will take to be empty when you program the stinking thing. WRITE IT DOWN! Oh AND READ the CHART!!!! If the CNA came and did vitals, read them, don't redo them. I told the orienting nurse this 6 times in the last 3 evenings that the vitals were already done. Lets not disturb Jeremie any more than we have to, thank you very much!!!!!!!!!!!!!
K...I think I'm becoming calmer. I think. For the most part it is going good. I'm trying to see from their point of view. I know I'm a nurse and with the student nurses and orientee's this probably causes some performance anxiety. I really try to walk away during procedures and give room and privacy. This is their field of expertise. I respect it. I'm just experiencing things from a different side. And not loving the chaos of it.
Oh but do you know who rocks! The pain specialty nurses. The sweet nurse today gave us her cell phone to call her this weekend if we have any issues. She just listened to Jeremie, made the adjustments he was trying to explain to her about (by the way we have tried explaining what we are after for the last week, and it took talking to the right person to get what we are after). In the end the adjustments Jeremie is requesting will actually start decreasing his need and demand for pain medication. It just is set up to better deal when his pain is the worst, and when he is the sleepiest.
Alrighty...now the hot air is out. Feeling better. Now I won't think about it over and over ;-)
-Cori (for some reason I wanted to say "Peace Out -Cori" Ha ha ha...so not like me. K...the sleeplessness if finally kicking in!
We will start off with the days events. Jeremie completed another 2 treatments of total body irradiation (TBI). He is doing so much better. He has been eating, no major nausea or side-effects from radiation (yet). Tomorrow is the last 2 treatments. Then on Sunday we begin the chemo. He is more clear today. Not needing so much medication. This is nice. I have missed chitter-chatting away at him. Maybe that is why he needs meds??? Hmmmm??? :-) Although he decided to tell me that I was plump in the center and attempted to poke me! I looked at him and asked what did he mean by that, and he looked sad and said if I was going to be rude then I should go back to bed! And promptly shut his eyes and was asleep! Gotta love pain meds. And yes, I am obviously going to remind him about my plump center!
So on to my rant. I think the unit is chalk full of leukemia patients. And I don't think the nurses are coping well. That is my first observation. I don't know what they are telling each other in report, but when they come into Jeremie's room they are a bit hyper, eyes darting everywhere, and seem a bit nervous. They chill out by the afternoon, and things work themselves out. The nurse leaves a bit less anxious. Or so it appears. So we begin the next cycle, the night nurse. Seriously??? Are we going to go through this again. Even before the nurse enters...which by the way it took 2 hrs and 45 minutes from when she got on shift to come in. The aid brought - and I kid you not, the largest monitoring system - probably from 1982 - into Jeremie's room so they could "monitor" Jeremie's O2 levels in ICU!!! Now??? NOW!!! WE ARE GOING TO DO THIS!!! EARTH TO ANYONE!!!! HELLO!!! HE IS FINALLY STABLE!!! Oh LORD, please, please, please help me find logic in this INSANE FREAKING PLANET!!!!
The night nurse, who usually I LOVE, comes in, can tell that she too has been given the "over exaggerated report". I've worked with nurses like this (DRIVES ME INSANE). This, this is why every encounter with a patient/client, I take a breathe leave my crap and what non-sense I have carrying around with me from the day (or report) and deal with my day. Thank you again Mrs. Atkinson (awesome nursing instructor).
I think the last few days are getting to me...Having a new nurse orienting to LDS Hospital, not even this floor, with us every bloody night...AND I'M EXPLAINING CRAP TO HER! Seriously she was going to give the I.V. Ativan in the line that is like 7 feet from Jeremie's body. Uh Duh sister, he has two open lumens on his freaking port near his chest. Don't make it take 2 hours to get to him that way. Where are they learning this crap??? Grrrrr.
Then student nurses everyday...which I don't totally mind, except when their preceptors send them in when clearly we need the person with the STINKING LICENSE!!!! Ok...another thing that drives me nuts with nurses. NOT BEING ORGANIZED! Come on! There is no excuse. You have 4 patients! Organize yourself and your day. Don't be reactive to your pumps, control them and know when they are going to be empty. I mean hello...it gives you how long it will take to be empty when you program the stinking thing. WRITE IT DOWN! Oh AND READ the CHART!!!! If the CNA came and did vitals, read them, don't redo them. I told the orienting nurse this 6 times in the last 3 evenings that the vitals were already done. Lets not disturb Jeremie any more than we have to, thank you very much!!!!!!!!!!!!!
K...I think I'm becoming calmer. I think. For the most part it is going good. I'm trying to see from their point of view. I know I'm a nurse and with the student nurses and orientee's this probably causes some performance anxiety. I really try to walk away during procedures and give room and privacy. This is their field of expertise. I respect it. I'm just experiencing things from a different side. And not loving the chaos of it.
Oh but do you know who rocks! The pain specialty nurses. The sweet nurse today gave us her cell phone to call her this weekend if we have any issues. She just listened to Jeremie, made the adjustments he was trying to explain to her about (by the way we have tried explaining what we are after for the last week, and it took talking to the right person to get what we are after). In the end the adjustments Jeremie is requesting will actually start decreasing his need and demand for pain medication. It just is set up to better deal when his pain is the worst, and when he is the sleepiest.
Alrighty...now the hot air is out. Feeling better. Now I won't think about it over and over ;-)
-Cori (for some reason I wanted to say "Peace Out -Cori" Ha ha ha...so not like me. K...the sleeplessness if finally kicking in!
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