Day 3 of cord-blood transplant: Things are going ok. Jeremie is having a reaction to the Kepivance. The medication that increases epithelial cells. I guess it isn't uncommon, but it hurts him and causes discomfort. It also causes him to look like he has a tan :-) I nice healthy glow! The medication causes his soles and palms of his feet to hurt, and swell. Even his ears are swollen. Thank goodness the last dose was given last night.
He is swollen everywhere. Hopefully over the next few days it will decrease. He is receiving lasix today to help his body get rid of the excess fluids. Hope it works. I think he will feel better then. For the most part things are going well. Nothing out of the ordinary, nothing too scary. Thank goodness.
His plan today included 2 units of blood and a unit of platelets. I'm feeling like the time has just flown by. Probably because I have to go home tomorrow. It is killing me. I miss my kids so much, and I will miss Jeremie so much. This is the part I didn't want to face yet. How this is going to work out :-(
I will return on the weekends with the kids, until he comes home. I'm terribly needy though (in case no one knew!). I'm not sure what I am supposed to do without him. It is a yucky feeling to feel so pulled in all these directions. I need and miss my babies and wish I didn't have to leave him here. He is being a good sport, and tells me that I need to go home and take care of our kids and our home. It does help me to hear him say that. Because if he said I shouldn't go, I wouldn't be able to tear myself away.
My kids have been amazing! Holding the fort down. Making sure they are going to school, bed, doing laundry. They are amazing. This has been so hard! Being away from them. Not wanting to totally turn their lives upside down. Trying to keep their schedule and life while it is in turmoil. I think that just hurts my soul and Jeremie's as well. Our kids, they are our everything. It is so difficult as they are so young still, and have had to in some ways, grow up super fast because of this ordeal. I desperately want to bring some sunshine in their lives. I'm so grateful for our neighborhood and ward, how they have tried to take our boys to scouts, and keep inviting my sweet Scarlett to activities. It means the world that we are surrounded by such sweet people. Please know how thankful we are for your friendships and love, especially to our children.
I'm hoping once Jeremie is out of the hospital, and in a place of his own, and hopefully healthy enough we can have some fun on the weekends with him, all together. I know how we are all craving to have our family all together. I miss our life, and our routine. Everyday we are closer to having our lives back though :-)
Well poor Jeremie is now struggling with food/liquid going down the gullet...so I better be helpful!
Lots of Love!
Cori
Sunday, February 27, 2011
Friday, February 25, 2011
02-25-2011
Jeremie doing pretty good. Said he is "feeling odd". Not quite right. Poor guy has so much medicine still floating around, no wonder he doesn't feel right. Well we are now in a waiting game. They explained to us that we should/possibly see some graft vs host disease in the next 10 days or so.
Jeremie's pain is significantly better :-) He is going to be on I.V. nutrition for a while. Until he has an appetite. We have a very sweet, very young dietitian intern. She drives me insane. I love people who think this is our first rodeo. Hello! This is like our millionth admission. I think we get it. I wonder why repetition bothers me so much. I guess it drives me nuts when people just like to hear themselves talk. I wonder if she reads the chart? That is the part that bothers me. Read the chart. Come and double check if we have questions or dietary concerns. Don't do the whole repeat of the same ole same ole junk. Blah, blah, blah. It is very patronizing. K...off my soap box :-)
Well I hope we have a lot of the same. Just relaxed days of healing and moving forward :-)
Lots of Love,
Cori
Jeremie's pain is significantly better :-) He is going to be on I.V. nutrition for a while. Until he has an appetite. We have a very sweet, very young dietitian intern. She drives me insane. I love people who think this is our first rodeo. Hello! This is like our millionth admission. I think we get it. I wonder why repetition bothers me so much. I guess it drives me nuts when people just like to hear themselves talk. I wonder if she reads the chart? That is the part that bothers me. Read the chart. Come and double check if we have questions or dietary concerns. Don't do the whole repeat of the same ole same ole junk. Blah, blah, blah. It is very patronizing. K...off my soap box :-)
Well I hope we have a lot of the same. Just relaxed days of healing and moving forward :-)
Lots of Love,
Cori
Thursday, February 24, 2011
Part Three 02-24-2011
The second of the cord-blood stem cells was transfused at 6:00 p.m. today. It was a very large unit. Yay!
Sometimes I realize I don't explain myself or this process well. So I will give it another shot. If you have questions or need me to clarify something, feel free to ask :-)
So in transplanting with cord-blood stem cells (umbilical cord stem-cells). An average adult needs to have two different cord-blood units to obtain the amount of stem cells necessary to increase the odds of achieving a long term remission or cure (they actually base the amount of needed stem cells on the hosts size or per kilogram of body weight). Recent research shows having a large stem cell unit (or 2 cord-blood stem cell units) results in better engraftment, and increased remission rates. This is why children receiving cord-blood transplants only need one unit, they are smaller.
Jeremie's cord-blood stem cells had to be matched to each other and then to Jeremie as well. Thank you to amazing parents that donated their cord-blood, my husbands life is being saved. It is amazing that this technology exists, and we are able to benefit from it.
By the way I asked today about parents donating their umbilical cord blood if they choose. The cute lady from the U of U said they actually had a program that they were asking mothers during delivery if they would consider donating their umbilical cord blood (it is just thrown away, usually). They were sending the units to a California cord-blood bank. It lost funding, and so did they. Darn it.
BUT mom's out there who want to donate can plan to have kits mailed to them before the birth of their baby and donate the cord-blood themselves. Here is more information
http://www.marrow.org/HELP/Donate_Cord_Blood_Share_Life/index.html
Alrighty...Love to all! Jeremie wants to go on a walk NOW!!
Cori
Sometimes I realize I don't explain myself or this process well. So I will give it another shot. If you have questions or need me to clarify something, feel free to ask :-)
So in transplanting with cord-blood stem cells (umbilical cord stem-cells). An average adult needs to have two different cord-blood units to obtain the amount of stem cells necessary to increase the odds of achieving a long term remission or cure (they actually base the amount of needed stem cells on the hosts size or per kilogram of body weight). Recent research shows having a large stem cell unit (or 2 cord-blood stem cell units) results in better engraftment, and increased remission rates. This is why children receiving cord-blood transplants only need one unit, they are smaller.
Jeremie's cord-blood stem cells had to be matched to each other and then to Jeremie as well. Thank you to amazing parents that donated their cord-blood, my husbands life is being saved. It is amazing that this technology exists, and we are able to benefit from it.
By the way I asked today about parents donating their umbilical cord blood if they choose. The cute lady from the U of U said they actually had a program that they were asking mothers during delivery if they would consider donating their umbilical cord blood (it is just thrown away, usually). They were sending the units to a California cord-blood bank. It lost funding, and so did they. Darn it.
BUT mom's out there who want to donate can plan to have kits mailed to them before the birth of their baby and donate the cord-blood themselves. Here is more information
http://www.marrow.org/HELP/Donate_Cord_Blood_Share_Life/index.html
Alrighty...Love to all! Jeremie wants to go on a walk NOW!!
Cori
Part Two 02-24-2011
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
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
*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!
Thursday, February 17, 2011
02/17/2011
Well I have posted a couple of updates/panic attack sharing on my facebook page. So if this is a repeat...sorry.
02/15/2011- Tuesday night was just plain miserable for Jeremie. His pain was at intolerable levels, and then became impossible to handle. Severe pain mixed with high doses of pain medication = delusions. He was angry (uh duh) and not super helpful with his "medical helpers" aka Nurses and CNA's. I stayed at the hotel that night, as we were booked there until Thursday morning. I arrived for his 1st total body irradiation appointment at 0900. I knew Jeremie had been struggling. He called at 4:00 that morning that his pain was out of control, but as we were talking the pain specialists walked in the room. He seemed to have calmed down. Then he called me again to let me know what time the radiation appointment was.
So then I get a call as I just found Jeremie in an exam room (huh?). The call was from his cell-phone. That just plan freaked me out. I answered it and it was his nurse for the day. Jeremie loves this nurse. This nurse really understands us, and we both feel very close to him. He really explains things from his perspective and we respect him tremendously for his honesty. He lays out how the morning has gone. Explains that Jeremie is in the exam room because he is refusing to do the radiation. And they have been working on getting things under control. He said, and I don't think I will ever forget words said like this to me "Get him to do the radiation Cori, or he dies". Uh...okay. Will do. Put on my best psych-nurse hat and went to work.
So how does one tell another person in the most excruciating pain of their life to keep going? How do I and what do I find to motivate him? And the answer was nothing. To him in that moment death was the sweetest gift that could be offered. Except that it couldn't be offered soon enough. I just told him to get up, we were going in and getting it done. And he did. I wish I could say something great and magical happened. In a way it did, cause he just got up. Painstakingly of course. Something that should have taken 40 minutes for the first treatment, took 4 hours. He couldn't stand up. He had to restart several times.
Got a lot of medicine in the poor man. I can't believe he can even stand up with what he is having put in his body to stave off some of the pain. He got through the second treatment. Last night I decided to check out of the hotel early. There was no way we were going to have a morning like that again. So that started with having a good night. I didn't care if I stayed up forever. That morning was just plain awful. My little plans worked well. He had a pretty good night, and a great morning. Considering how the last few days have gone.
He officially has two more days of radiation twice per day. Then Sunday he begins the chemo portion of getting ready for his transplant. I'm hoping as the treatment progress his pain lessens. It seems to be in tiny amounts.
I appreciate the opportunity to share in this manner. It helps me to process things. I know people read it for updates. But this blog is an easier way for me to share. I am allergic to tears, they give me a migraine and make me non-functional for days. Strong emotions are things that are going to have to be dealt with when I have a minute. Right now...don't have a minute. This venue of sharing information, lets me share without the emotional side-effects. So I appreciate it, and all of you for listening to my emotional ramblings while I share.
Lots of Love and appreciation,
Cori
02/15/2011- Tuesday night was just plain miserable for Jeremie. His pain was at intolerable levels, and then became impossible to handle. Severe pain mixed with high doses of pain medication = delusions. He was angry (uh duh) and not super helpful with his "medical helpers" aka Nurses and CNA's. I stayed at the hotel that night, as we were booked there until Thursday morning. I arrived for his 1st total body irradiation appointment at 0900. I knew Jeremie had been struggling. He called at 4:00 that morning that his pain was out of control, but as we were talking the pain specialists walked in the room. He seemed to have calmed down. Then he called me again to let me know what time the radiation appointment was.
So then I get a call as I just found Jeremie in an exam room (huh?). The call was from his cell-phone. That just plan freaked me out. I answered it and it was his nurse for the day. Jeremie loves this nurse. This nurse really understands us, and we both feel very close to him. He really explains things from his perspective and we respect him tremendously for his honesty. He lays out how the morning has gone. Explains that Jeremie is in the exam room because he is refusing to do the radiation. And they have been working on getting things under control. He said, and I don't think I will ever forget words said like this to me "Get him to do the radiation Cori, or he dies". Uh...okay. Will do. Put on my best psych-nurse hat and went to work.
So how does one tell another person in the most excruciating pain of their life to keep going? How do I and what do I find to motivate him? And the answer was nothing. To him in that moment death was the sweetest gift that could be offered. Except that it couldn't be offered soon enough. I just told him to get up, we were going in and getting it done. And he did. I wish I could say something great and magical happened. In a way it did, cause he just got up. Painstakingly of course. Something that should have taken 40 minutes for the first treatment, took 4 hours. He couldn't stand up. He had to restart several times.
Got a lot of medicine in the poor man. I can't believe he can even stand up with what he is having put in his body to stave off some of the pain. He got through the second treatment. Last night I decided to check out of the hotel early. There was no way we were going to have a morning like that again. So that started with having a good night. I didn't care if I stayed up forever. That morning was just plain awful. My little plans worked well. He had a pretty good night, and a great morning. Considering how the last few days have gone.
He officially has two more days of radiation twice per day. Then Sunday he begins the chemo portion of getting ready for his transplant. I'm hoping as the treatment progress his pain lessens. It seems to be in tiny amounts.
I appreciate the opportunity to share in this manner. It helps me to process things. I know people read it for updates. But this blog is an easier way for me to share. I am allergic to tears, they give me a migraine and make me non-functional for days. Strong emotions are things that are going to have to be dealt with when I have a minute. Right now...don't have a minute. This venue of sharing information, lets me share without the emotional side-effects. So I appreciate it, and all of you for listening to my emotional ramblings while I share.
Lots of Love and appreciation,
Cori
Monday, February 14, 2011
02/14/2011
We arrived in Salt Lake last night. We both had a terrible night. We called the on-call oncologist last night to get an increase in pain medication. It didn't really touch Jeremie at all. So no sleep.
We arrived for the pulmonary function test (tests lung function, chemo and radiation affect lung function, need to make sure they aren't in bad shape before we go into transplant). Jeremie was in too much pain to take deep breaths, and we didn't want to "fail" the test. We decided to skip the test and go straight to the BMT (Bone Marrow Transplant) Clinic.
They asked if Jeremie would want to be admitted before Thursday. I of course said "Please! Please! Please!". Jeremie was admitted :-) Put on a different type of pain medication and pump. Pain has definitely decreased to more manageable levels. He was started on the medication to increase epithelial cells along the digestive tract. As these cells are the most susceptible to ulcerations during radiation and chemotherapy causing terrible problems. Usually this medication is given once a day for three days. They are taking the combined dose of those three days and splitting it to give it over two days instead. They are moving his radiation/chemotherapy/transplant date up by one day. It looks like 02/24/2011 is our day for transplant.
And of course we got to go over all the lovely potential problems that can pop up with transplant. That alone just makes you want to run and hide. It definitely isn't morale boosting. Sometimes I am bit nervous that Jeremie is going to change his mind. And of course they throw out "you have until we start radiation to change you mind". That just makes you feel great...NOT. We can't say they didn't warn us.
I guess I think of it a bit differently, than just plain statistical odds. If you think about it, Jeremie and I had Alex as teenagers, were married as teenagers and we are still married (happily), that is super rare! So we are already a statistical oddity. I just say take your statistics and... well you know ;-)
Love to all,
Cori
We arrived for the pulmonary function test (tests lung function, chemo and radiation affect lung function, need to make sure they aren't in bad shape before we go into transplant). Jeremie was in too much pain to take deep breaths, and we didn't want to "fail" the test. We decided to skip the test and go straight to the BMT (Bone Marrow Transplant) Clinic.
They asked if Jeremie would want to be admitted before Thursday. I of course said "Please! Please! Please!". Jeremie was admitted :-) Put on a different type of pain medication and pump. Pain has definitely decreased to more manageable levels. He was started on the medication to increase epithelial cells along the digestive tract. As these cells are the most susceptible to ulcerations during radiation and chemotherapy causing terrible problems. Usually this medication is given once a day for three days. They are taking the combined dose of those three days and splitting it to give it over two days instead. They are moving his radiation/chemotherapy/transplant date up by one day. It looks like 02/24/2011 is our day for transplant.
And of course we got to go over all the lovely potential problems that can pop up with transplant. That alone just makes you want to run and hide. It definitely isn't morale boosting. Sometimes I am bit nervous that Jeremie is going to change his mind. And of course they throw out "you have until we start radiation to change you mind". That just makes you feel great...NOT. We can't say they didn't warn us.
I guess I think of it a bit differently, than just plain statistical odds. If you think about it, Jeremie and I had Alex as teenagers, were married as teenagers and we are still married (happily), that is super rare! So we are already a statistical oddity. I just say take your statistics and... well you know ;-)
Love to all,
Cori
Saturday, February 12, 2011
02/12/2011
The past few days have been exhausting. Jeremie had to be admitted on Wednesday. His pain was out of control. He was admitted and put on a pain pump. Thursday he was released with the pain pump. So we are at home until tomorrow night, when we leave for Salt Lake.
He is sort of a monster, that husband of mine ;-). We are sort of opposites. I'm super conservative and wanted him to be sent to LDS hospital to get this show on the road. Experience has shown us that a couple days of chemo and three treatments of radiation completely get rid of his pain. So that was my thought. Jeremie's thought was to stay home until we were scheduled to go up, and come home on the pain pump. I didn't argue, and he won by default (yup I'm a sucker).
New pain pumps are much easier to program than when I was playing with them as a nurse ;-) So very grateful for this type of technology and that we can be at home. See I'm trying to see his side :-)
I have to laugh because Jeremie's whole reason he wanted to stay home this weekend was for the Pine-wood derby (the one with the scouts). He told our oncologist we had a "big family function" and he didn't want to miss out. Ha Ha Ha!!! Well we are going to postpone pine-wood derby for next year (Jeremie HAS to help with the boys cars!). And I'm taking them to Laser Mania instead. They weren't too sad.
I said a prayer the other day (hope you don't mind I'm getting personal), that I would be able to handle everything coming at us. That I would be able to push him when he needed it and back off when he needed it. It is a difficult thing for me to judge. I have seen and experienced people suffering with pain. I have felt that I was able to help with controlling their pain or help them move through the discomfort. I felt some ability to help. When it comes to Jeremie, I'm desperate though. I hate it when he hurts. I can feel my soul ripping apart when he is suffering. It is terrible to lose my objectivity.
In some ways it has started me down a path of acceptance. I thought I had accepted so much of what I cannot control. I just didn't know if mentally I was going to be able to accept not having him by my side until we were 90 years old. After Wednesday night, I know I cannot stand to see him suffer, just so he is by my side. I thought I learned a lot of this a long time ago. But I'm learning that everything I thought I knew, doesn't apply to Jeremie...as always.
Oh I wish I could fast-forward to Friday afternoon, and hope his pain is gone...
Well next week will be fast and furious. I will try and update as things progress towards transplant. Tentative date for transplant is 02/25/11. Just a couple of days after Phoenix's birthday.
Love you all,
Cori
He is sort of a monster, that husband of mine ;-). We are sort of opposites. I'm super conservative and wanted him to be sent to LDS hospital to get this show on the road. Experience has shown us that a couple days of chemo and three treatments of radiation completely get rid of his pain. So that was my thought. Jeremie's thought was to stay home until we were scheduled to go up, and come home on the pain pump. I didn't argue, and he won by default (yup I'm a sucker).
New pain pumps are much easier to program than when I was playing with them as a nurse ;-) So very grateful for this type of technology and that we can be at home. See I'm trying to see his side :-)
I have to laugh because Jeremie's whole reason he wanted to stay home this weekend was for the Pine-wood derby (the one with the scouts). He told our oncologist we had a "big family function" and he didn't want to miss out. Ha Ha Ha!!! Well we are going to postpone pine-wood derby for next year (Jeremie HAS to help with the boys cars!). And I'm taking them to Laser Mania instead. They weren't too sad.
I said a prayer the other day (hope you don't mind I'm getting personal), that I would be able to handle everything coming at us. That I would be able to push him when he needed it and back off when he needed it. It is a difficult thing for me to judge. I have seen and experienced people suffering with pain. I have felt that I was able to help with controlling their pain or help them move through the discomfort. I felt some ability to help. When it comes to Jeremie, I'm desperate though. I hate it when he hurts. I can feel my soul ripping apart when he is suffering. It is terrible to lose my objectivity.
In some ways it has started me down a path of acceptance. I thought I had accepted so much of what I cannot control. I just didn't know if mentally I was going to be able to accept not having him by my side until we were 90 years old. After Wednesday night, I know I cannot stand to see him suffer, just so he is by my side. I thought I learned a lot of this a long time ago. But I'm learning that everything I thought I knew, doesn't apply to Jeremie...as always.
Oh I wish I could fast-forward to Friday afternoon, and hope his pain is gone...
Well next week will be fast and furious. I will try and update as things progress towards transplant. Tentative date for transplant is 02/25/11. Just a couple of days after Phoenix's birthday.
Love you all,
Cori
Thursday, February 3, 2011
02/03/2011
Alrighty, we heard from LDS in regards to planning the cord-blood transplant. We are TENTATIVELY looking at February 14th'ish to be going to Salt Lake to begin the process. Jeremie will be having multiple tests (repeat) to make sure he is (again) healthy for transplant. It's an insurance thing.
Jeremie has a really difficult leukemia. It likes to "hide" and manifest it self in abnormal ways. Such as making tumors during chemotherapy treatment, hiding in his central nervous system and causing abnormal marrow signal on MRI's. I'm giving this explanation, as to explain why our "good" news doesn't really give us a lot of information. Or something to hang our hat on.
Jeremie's bone-marrow biopsy came back negative (so far, still testing for his specific type of mutation that causes his type of leukemia). They measure this by looking at the number of blasts in his bone-marrow. Blasts are (again...I'm simplistic) new cells (think newborn) that have not differentiated and decided what they are going to be when they grow-up. Of course there are normal blasts in every one's bone-marrow. So the very small piece of bone that they took for biopsy is negative. That doesn't mean it is negative elsewhere in the body. See what I mean, by good news doesn't really give us a lot of info?
To diagnose acute myelocytic leukemia there needs to be 20% or greater blasts in the bone marrow. This is essentially the danger behind leukemia, if your bone marrow fills with blasts and don't grow-up to be platelets, white blood cells, red-blood cells etc (K...really being simplistic but you get the point). Then you have no way to support your cells, tissue, organs and fight infections, etc. This is why leukemia stinks. Jeremie's pain comes from his marrow being "full" of leukemic cells (blasts or immature cells that have trisomy 8 with NPMI mutation- his type of leukemia) that push on the bone from the inside out. The back pain he is experiencing is "symptomatic" of leukemia. See the problem with thinking that a negative bone-marrow biopsy is the sure fire way of see if his leukemia is there or not?
So back to our plan. After a good month of consideration, going to California and pondering, praying and considering every option available. We decided that the cord-blood transplant is the best thing for our family, and for Jeremie.
So of course we still would love your prayers! This is an exciting and scary time. But a time we are full of love and hope. Thank you all for your continued love, and continued prayers.
LOVE!
Cori & Jeremie
Jeremie has a really difficult leukemia. It likes to "hide" and manifest it self in abnormal ways. Such as making tumors during chemotherapy treatment, hiding in his central nervous system and causing abnormal marrow signal on MRI's. I'm giving this explanation, as to explain why our "good" news doesn't really give us a lot of information. Or something to hang our hat on.
Jeremie's bone-marrow biopsy came back negative (so far, still testing for his specific type of mutation that causes his type of leukemia). They measure this by looking at the number of blasts in his bone-marrow. Blasts are (again...I'm simplistic) new cells (think newborn) that have not differentiated and decided what they are going to be when they grow-up. Of course there are normal blasts in every one's bone-marrow. So the very small piece of bone that they took for biopsy is negative. That doesn't mean it is negative elsewhere in the body. See what I mean, by good news doesn't really give us a lot of info?
To diagnose acute myelocytic leukemia there needs to be 20% or greater blasts in the bone marrow. This is essentially the danger behind leukemia, if your bone marrow fills with blasts and don't grow-up to be platelets, white blood cells, red-blood cells etc (K...really being simplistic but you get the point). Then you have no way to support your cells, tissue, organs and fight infections, etc. This is why leukemia stinks. Jeremie's pain comes from his marrow being "full" of leukemic cells (blasts or immature cells that have trisomy 8 with NPMI mutation- his type of leukemia) that push on the bone from the inside out. The back pain he is experiencing is "symptomatic" of leukemia. See the problem with thinking that a negative bone-marrow biopsy is the sure fire way of see if his leukemia is there or not?
So back to our plan. After a good month of consideration, going to California and pondering, praying and considering every option available. We decided that the cord-blood transplant is the best thing for our family, and for Jeremie.
So of course we still would love your prayers! This is an exciting and scary time. But a time we are full of love and hope. Thank you all for your continued love, and continued prayers.
LOVE!
Cori & Jeremie
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