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
Subscribe to:
Posts (Atom)