JEREMIE HAS BEEN DISCHARGED!!! Woo Hoo!!! We sprung him yesterday. After a whirl-wind of decisions to be made very quickly (gotta love LDS), Jeremie decided it would be best to stay with my parents. They live in sugarhouse, a 15 minute drive from LDS hospital. And 3 adults are home during the day and available to Jeremie no matter the day or time. So we went to my moms yesterday. We had a fun night. I took a nap yesterday. Ate really good food...aaahhh love my mothers finger-steaks and french-fries! And got settled in.
I came home today via a Delta Flight. Had to think fast and leave Jeremie a vehicle. Even though he has my dad to drive him around. There will come a time when Jeremie will feel up to driving around. So I got to fly into the new airport. Very pretty by they way. Could see my house while landing.
Jeremie is super exhausted and very weak still. He has made such great improvements over the last several weeks, that aren't anything short of a miracle. But it is different seeing someone outside the hospital environment and expecting them to "just be themselves". I think 6 weeks in the hospital is enough. It is time to do some serious healing now. He ate and drank better than he has in several weeks.
My sweet mom and dad were given instructions on how to change Jeremie's IV fluids. And tonight was the test run. Mom and Jeremie did great!!! I think I could hear my mom shaking via her voice! Poor thing. She did fabulous though! I am quite jealous that they have my sweet Jeremie at their house every night. Right now I am upset for moving from Salt Lake. Ugh! But happy that we have the opportunity we do. So I will quit whining.
Of course I have evil plans stirring in my head. Always do! So I am scheming that in a couple of weeks, when Jeremie's blood levels have stabilized, and he no longer requires transfusions. And his graft vs host disease is stable or non-existent, I am going to BEG, BEG for him to come home early. So I am praying by Easter to have all oncologists in Salt Lake and here in St. George on board with a plan that involves him home sooner rather than later. Please pray with me that this can happen! I know, how can I ask so much, when so much has been given...but I'm asking anyway ;-)
Jeremie's white-blood cells are all normal. And his platelets are starting to stick around longer. And his red-blood cells are actually starting to increase on their own. Right now there is debate on whether or not his liver enzymes being increased is a product of medication or slight graft vs host disease. And whether or not his constant nausea is related to graft vs host disease as well. If it is graft vs host disease, there really isn't anything they can do about it. BUT this is why he has to stay in SLC, to see if these problems increase. I'm hoping with increased food/fluids he can get rid of the excess medication causing havoc in his body. That is my theory anyway. Yup...back to my theories.
Well that is pretty much it. Things couldn't be going better. Excited for Jeremie to gain strength and come home!
Lots of Love,
Cori
Tuesday, March 29, 2011
Sunday, March 27, 2011
03-27-2011
Jeremie is doing pretty good. His White-blood cells and neutrophils are all within the normal range. Still waiting for the stubborn platelets to start growing on their own. They are trying to stick around longer, which is a good sign. Having platelets about every other day now. Red-blood cells are starting to increase on their own! Yay!
Jeremie still struggles with eating and keeping food down. It is the one hold-up that is keeping him at the hospital. Right now it is the only thing still hanging on his I.V. pole. They have made everything else pill form. The worry is, if he can't keep any food down he won't keep pills down, and that can cause any minor graft vs host disease to become a major problem. So cross fingers we can figure this nutrition nightmare out. We are going to try some Ensure today. He has tried the boost, and has never done well with it. But we use Ensure at home and he does much better.
If we can get him to keep 1200-1500 calories going and staying with him, he can possibly be released tomorrow! I think he has several problems that contribute to this eating-keeping-food-down-problem. I think it is his pain patch. I think it is too high. I think it is the cyclosporine (the anti-rejection med). And I think it is because his little tummy has shrunk from the lack of trying food for the last month. They are going to decrease the amount of medicine the patch is giving him (yay!), and I think moving him to nutrition with large amounts of calories for a small size is the way to get all his calories in.
Another theory...I just don't think the pain patch is the best thing. I know he is achy and sore. But he isn't moving a whole lot either. Siting/lying all day long is going to take a toll on your body. Covering it up with pain meds is not the greatest idea, in my opinion. So we went walking this morning, and I have given us an assignment to go this afternoon and evening as well. Pray he doesn't divorce me after this!
Well things are going relatively well for the most part. Just fine-tuning the details. Your continued prayers are so appreciated and needed. We know this is what is getting us through these challenges. They are felt, and I feel so thankful for all of you...
Love,
Cori
Jeremie still struggles with eating and keeping food down. It is the one hold-up that is keeping him at the hospital. Right now it is the only thing still hanging on his I.V. pole. They have made everything else pill form. The worry is, if he can't keep any food down he won't keep pills down, and that can cause any minor graft vs host disease to become a major problem. So cross fingers we can figure this nutrition nightmare out. We are going to try some Ensure today. He has tried the boost, and has never done well with it. But we use Ensure at home and he does much better.
If we can get him to keep 1200-1500 calories going and staying with him, he can possibly be released tomorrow! I think he has several problems that contribute to this eating-keeping-food-down-problem. I think it is his pain patch. I think it is too high. I think it is the cyclosporine (the anti-rejection med). And I think it is because his little tummy has shrunk from the lack of trying food for the last month. They are going to decrease the amount of medicine the patch is giving him (yay!), and I think moving him to nutrition with large amounts of calories for a small size is the way to get all his calories in.
Another theory...I just don't think the pain patch is the best thing. I know he is achy and sore. But he isn't moving a whole lot either. Siting/lying all day long is going to take a toll on your body. Covering it up with pain meds is not the greatest idea, in my opinion. So we went walking this morning, and I have given us an assignment to go this afternoon and evening as well. Pray he doesn't divorce me after this!
Well things are going relatively well for the most part. Just fine-tuning the details. Your continued prayers are so appreciated and needed. We know this is what is getting us through these challenges. They are felt, and I feel so thankful for all of you...
Love,
Cori
Monday, March 21, 2011
03/21/2011
Super-duper Yay!!!! Jeremie's neutrophils are at 1400 today!!!! Only 400 more and they will be at normal levels!!! WOO HOO *\o/* !!!! Go blood cells, go blood cells, go! White-blood cells are at 2000! He is now off of the antibiotics. Going off of Lovenox (blood thinner), as he promised to walk 3 times a day. And his TPN is cut in half, to leave room for him to begin eating on his own. Progress is so awesome!!!!
Oh I'm so excited I just could burst!!! I'm having delusions of grandeur that maybe if his blood (platelets and red-blood cells) stabalize and start to grow on his own that I could bring him home. It is a tiny little prayer I have. That he doesn't have to stay there the full 100 days. But I definitely wouldn't feel comfortable with him down here if he was still requiring the amount of platelets and red-blood cells that he is requiring. But...just but...if he could start growing those on his own....hmmmmm. Oh it would be to good to even wish for! So I will be happy with him being discharged from the hospital and in his own space right by it.
Just floating in air!!!
Love,
Cori
Oh I'm so excited I just could burst!!! I'm having delusions of grandeur that maybe if his blood (platelets and red-blood cells) stabalize and start to grow on his own that I could bring him home. It is a tiny little prayer I have. That he doesn't have to stay there the full 100 days. But I definitely wouldn't feel comfortable with him down here if he was still requiring the amount of platelets and red-blood cells that he is requiring. But...just but...if he could start growing those on his own....hmmmmm. Oh it would be to good to even wish for! So I will be happy with him being discharged from the hospital and in his own space right by it.
Just floating in air!!!
Love,
Cori
Sunday, March 20, 2011
03-20-11
Day 24 of Transplant and Jeremie has 1300 white blood cells, 900 neutrophils....can any one say ENGRAFTMENT!!! SO very happy for my Jeremie! He is doing wonderfully! Next the red-blood cell and platelets lines will kick into gear and he will be making a lot more on his own.
He did great with sampling some food yesterday or practicing. It didn't hurt his throat. It did make him slightly nauseous, but ya' know he hasn't had anything solid in his stomach for 3 weeks. So I have to keep reminding him to be patient.
We also talked about the scary, dreaded, jinx'd word "DISCHARGE"...I was so scared to be bringing it up! But Jeremie is engrafting, doing well and I don't want to get caught off guard one day, with "we are done come get him". So I asked an approximate time frame. I was told probably around 2 weeks he will be ready to be discharged! Woo Hoo!!!! So excited. Now I need to really get my buns into gear and find an apartment for him. Luckily the small search I have done pulled up a lot of apartments in the avenue's in the price range we are looking for. This week I will be talking lots and arranging times to look through them when I come next weekend. I'm hoping somehow, someway Jeremie will be able to go with me on a couple of these. As long as his numbers are holding, and maybe, just maybe he is off the TPN. Then perhaps we could talk them into letting him out of the hospital for a minute.
Well keep up the prayers...they are getting us through this!
Lots of Love,
Cori
He did great with sampling some food yesterday or practicing. It didn't hurt his throat. It did make him slightly nauseous, but ya' know he hasn't had anything solid in his stomach for 3 weeks. So I have to keep reminding him to be patient.
We also talked about the scary, dreaded, jinx'd word "DISCHARGE"...I was so scared to be bringing it up! But Jeremie is engrafting, doing well and I don't want to get caught off guard one day, with "we are done come get him". So I asked an approximate time frame. I was told probably around 2 weeks he will be ready to be discharged! Woo Hoo!!!! So excited. Now I need to really get my buns into gear and find an apartment for him. Luckily the small search I have done pulled up a lot of apartments in the avenue's in the price range we are looking for. This week I will be talking lots and arranging times to look through them when I come next weekend. I'm hoping somehow, someway Jeremie will be able to go with me on a couple of these. As long as his numbers are holding, and maybe, just maybe he is off the TPN. Then perhaps we could talk them into letting him out of the hospital for a minute.
Well keep up the prayers...they are getting us through this!
Lots of Love,
Cori
Saturday, March 19, 2011
03-19-2011
I'm smiling today. So happy to be here with Jeremie. Makes me feel like myself. I have missed him. I think I have missed harassing the poor man more though! Got to have a long cuddle session last night. I didn't even mind the confined space of a twin size hospital bed. Just felt nice to hold on to him. Makes me realize it isn't just a dream.
We had a float nurse last night. Poor thing, she obviously was a great nurse, but this is a complicated floor. So I just whispered in Jeremie's ear to have patience. She is safe, and double checking and asking questions if she doesn't know. My kind of Nurse! It made me feel safe. Of course they are in the room a million times a night. And again, I'm sleeping through it! Weird world!
Jeremie was given platelets this morning. I checked his labs. White blood (WBC) count is 1100, neutrophil count (ANC) is 500, and monophil count is 300!!! Yay! Those are some awesome labs! Explains why his eyes are starting to heal. His left eye is so much better. Last week it was completely swollen shut. This week no swelling and only a tiny little hemorrhage is there. The right eye isn't swollen at all, but still has a medium size hemorrhage. He is looking healthier and healthier every time I see him. Oh and he still has some eyebrows!!! Praying they stay! This is a big deal to him :-)
So our goal this week is to start practicing food going down the gullet. Nice and slow, it would be nice if by next weekend he could work up to be eating several times a day without nausea or vomiting. Slow and sure are the course. And we wonder why he is happy to see me go? ;-)
Love you all,
Cori
We had a float nurse last night. Poor thing, she obviously was a great nurse, but this is a complicated floor. So I just whispered in Jeremie's ear to have patience. She is safe, and double checking and asking questions if she doesn't know. My kind of Nurse! It made me feel safe. Of course they are in the room a million times a night. And again, I'm sleeping through it! Weird world!
Jeremie was given platelets this morning. I checked his labs. White blood (WBC) count is 1100, neutrophil count (ANC) is 500, and monophil count is 300!!! Yay! Those are some awesome labs! Explains why his eyes are starting to heal. His left eye is so much better. Last week it was completely swollen shut. This week no swelling and only a tiny little hemorrhage is there. The right eye isn't swollen at all, but still has a medium size hemorrhage. He is looking healthier and healthier every time I see him. Oh and he still has some eyebrows!!! Praying they stay! This is a big deal to him :-)
So our goal this week is to start practicing food going down the gullet. Nice and slow, it would be nice if by next weekend he could work up to be eating several times a day without nausea or vomiting. Slow and sure are the course. And we wonder why he is happy to see me go? ;-)
Love you all,
Cori
Thursday, March 17, 2011
03/17/2011
Happy St. Patricks Day!!
And what a happy day it is. Jeremie's white blood cells are at 500, his neutrophils are at 200! Things are definitely progressing.
I even got to hear annoyance in his voice today. Haven't heard that forever. It is terrible...it made me smile! I was excited to hear emotion in his voice. And super happy it wasn't directed towards me
:-)...Yay! He had a very inept nurse today. I like her personality, but unfortunately it is precisely that, that drives Jeremie crazy. She is sort of flaky, and comes off scattered. Jeremie is the opposite of this personality. So it drives him crazy! Plus she really is scattered. Nice, but scattered. And again, the type of nurse that is very reactive to whatever situation is presented. Meaning the I.V. pumps run her.
I'm getting excited to go again. Excited to drive him crazy :-) I'm hoping he can start eating more this weekend. Maybe switch to oral med's again. That way it will free up some "pump" space, and maybe it won't take all day to get his platelets and blood into him. Plus it is good "practice" on his tummy :-)
Yes...I have goals...hee hee hee.
I'm getting super nervous because I need to start studying something other than leukemia. I'm supposed to start clinical again. Eck...just the thought is making my stomach turn. But I need to get school done. I can't stand it hanging over my head any more. Hopefully by the time Jeremie is home I will be done...cross your fingers!
Well...until next time
Cori
And what a happy day it is. Jeremie's white blood cells are at 500, his neutrophils are at 200! Things are definitely progressing.
I even got to hear annoyance in his voice today. Haven't heard that forever. It is terrible...it made me smile! I was excited to hear emotion in his voice. And super happy it wasn't directed towards me
:-)...Yay! He had a very inept nurse today. I like her personality, but unfortunately it is precisely that, that drives Jeremie crazy. She is sort of flaky, and comes off scattered. Jeremie is the opposite of this personality. So it drives him crazy! Plus she really is scattered. Nice, but scattered. And again, the type of nurse that is very reactive to whatever situation is presented. Meaning the I.V. pumps run her.
I'm getting excited to go again. Excited to drive him crazy :-) I'm hoping he can start eating more this weekend. Maybe switch to oral med's again. That way it will free up some "pump" space, and maybe it won't take all day to get his platelets and blood into him. Plus it is good "practice" on his tummy :-)
Yes...I have goals...hee hee hee.
I'm getting super nervous because I need to start studying something other than leukemia. I'm supposed to start clinical again. Eck...just the thought is making my stomach turn. But I need to get school done. I can't stand it hanging over my head any more. Hopefully by the time Jeremie is home I will be done...cross your fingers!
Well...until next time
Cori
Wednesday, March 16, 2011
03/16/2011
So just as soon as I updated the last blog, we looked at Jeremie's labs. He had 24 cells (per field of vision) the last several days had been 9 cells, 4 cells. So a jump to 24 made us quite happy! And then he suddenly had 100 neutrophils. Of course we were excited, so was the P.A. and the Doc. But we also were holding our breaths. It could have been a fluke. These cells might not be there tomorrow. But he was probably starting to engraft.
Well, so we waited until Sunday. Still had the hundred neutrophils, but then he had 28 cells! Woo Hoo definitely didn't look like a fluke. By Monday Jeremie still had his 100 neutrophils, then 100 monophils, and 34 cells counted! Officially starting to engraft!!!!! He started engrafting on day 16! A full 6 days before the average! SO EXCITED!!!
Jeremie still has a rough road a head. But it feels so good to be excited for once. I have loved talking to him more and more. I have missed him so much! His poor throat, mixed with a lot of pain medication really kept me from conversing with him. And I was definitely sensory deprived! I need to talk to him! This whole week I have felt like I was on a cloud. Just being able to talk to him has been heaven sent. I realize how my mood is affected by how well he is doing. I'm tired of being in a bad mood ;-).
Jeremie is still receiving blood products of some sort (platelets, red-blood cells) every day. He is also still on TPN (I.V. nutrition), and the pain pump. So definitely have some work to do. He seems up to the challenge though :-). Nothing we haven't been through, though. He is amazing that sweet husband of mine. I'm looking forward to the next couple of weeks. He has been through so much. He deserves to have something go his way.
Now I'm actually getting excited for him to be home and on his motorcycle...that never would have come out of my mouth before. But I'm excited to see that sweet grin on his face. And him running into the house on a Friday, coming home from work saying "that was the most amazing ride!!!". I won't even have a heart attack that he was on the stupid machine. Not after going through this!
I can't even tell you how excited I am for summer! A hot, sun-filled St. George summer! We will all be home! I remember a time in July, when Jeremie was first diagnosed with leukemia. He started having fevers. His temp had risen to 104 degrees. He was starting to shake. Shaking is terrible when you have a fever. It raises your body temperature even more. At 104 and rising it could have sent him into a seizure.
This is where Jeremie learned the art of meditation. I asked him to close his eyes and think about a hot St. George summer. Not just a hot St. George summer, but on his motorcycle with a t-shirt on, feeling the sun beat down on his arms. I asked him to remember how he felt (he used to tell me he was a lizard, and loved the heat, felt invigorated by it on his bike, of course I thought he was nuts, but right now I was using it!). I asked him to feel the radiator blowing the heat onto his legs when he would sit at a stop light in the heat (and he thought I never listened!). His shaking stopped. He had total control over his body with his amazing mind. And who said labor coaching could only be used for women in labor?? ;-) It is an amazing memory for me. I have seen him use his mind power now over and over again. And it makes me so excited to feel the warm heat for myself.
Aaahhhh...just excited for the next couple of months. I've been so afraid to feel excited. But I'm gonna enjoy it for a minute...
Love to all,
Cori
Well, so we waited until Sunday. Still had the hundred neutrophils, but then he had 28 cells! Woo Hoo definitely didn't look like a fluke. By Monday Jeremie still had his 100 neutrophils, then 100 monophils, and 34 cells counted! Officially starting to engraft!!!!! He started engrafting on day 16! A full 6 days before the average! SO EXCITED!!!
Jeremie still has a rough road a head. But it feels so good to be excited for once. I have loved talking to him more and more. I have missed him so much! His poor throat, mixed with a lot of pain medication really kept me from conversing with him. And I was definitely sensory deprived! I need to talk to him! This whole week I have felt like I was on a cloud. Just being able to talk to him has been heaven sent. I realize how my mood is affected by how well he is doing. I'm tired of being in a bad mood ;-).
Jeremie is still receiving blood products of some sort (platelets, red-blood cells) every day. He is also still on TPN (I.V. nutrition), and the pain pump. So definitely have some work to do. He seems up to the challenge though :-). Nothing we haven't been through, though. He is amazing that sweet husband of mine. I'm looking forward to the next couple of weeks. He has been through so much. He deserves to have something go his way.
Now I'm actually getting excited for him to be home and on his motorcycle...that never would have come out of my mouth before. But I'm excited to see that sweet grin on his face. And him running into the house on a Friday, coming home from work saying "that was the most amazing ride!!!". I won't even have a heart attack that he was on the stupid machine. Not after going through this!
I can't even tell you how excited I am for summer! A hot, sun-filled St. George summer! We will all be home! I remember a time in July, when Jeremie was first diagnosed with leukemia. He started having fevers. His temp had risen to 104 degrees. He was starting to shake. Shaking is terrible when you have a fever. It raises your body temperature even more. At 104 and rising it could have sent him into a seizure.
This is where Jeremie learned the art of meditation. I asked him to close his eyes and think about a hot St. George summer. Not just a hot St. George summer, but on his motorcycle with a t-shirt on, feeling the sun beat down on his arms. I asked him to remember how he felt (he used to tell me he was a lizard, and loved the heat, felt invigorated by it on his bike, of course I thought he was nuts, but right now I was using it!). I asked him to feel the radiator blowing the heat onto his legs when he would sit at a stop light in the heat (and he thought I never listened!). His shaking stopped. He had total control over his body with his amazing mind. And who said labor coaching could only be used for women in labor?? ;-) It is an amazing memory for me. I have seen him use his mind power now over and over again. And it makes me so excited to feel the warm heat for myself.
Aaahhhh...just excited for the next couple of months. I've been so afraid to feel excited. But I'm gonna enjoy it for a minute...
Love to all,
Cori
Saturday, March 12, 2011
03-12-2011
Yay...arrived in Salt Lake. So happy to be near my sweet Jeremie. My bed was already made up too :-)
Luckily I didn't wake him when I arrived at 11:00 p.m., he was getting some blood work done, some more antibiotics hung and was wide awake. I got to enjoy laying by him and holding him. It felt so good, I can't believe it was real.
Slept pretty good too. They are definitely in his room more during the night. But I think I have learned to tune them out (finally!), or I'm happy they are here and checking on him. Could be both!
I spoke with one of the oncologists yesterday. She wanted to give me an update. She said Jeremie is stable. Jeremie looks miserable and is miserable. She explained that he has a staph infection (on his skin). His poor skin is in terrible shape. He has rashes, swelling, dry skin and flaking. All normal for this stage of the game. She said it wasn't uncommon for him to have a staph infection given the state of his skin. So they added another antibiotic. Poor guy was started on Vancomycin. Yuck! You can give Jeremie chemo and radiation and he does pretty good. Give him an antibiotic and the man just feels terrible. Vancomycin has to be ran very slow with Jeremie, otherwise he turns into a big rash and pink all over.
So his poor right eye is swollen shut, due to the violent nature in which he expels the contents of his stomach (i.e he throws up). And his left eye is also blood shot and swollen. He is very puffy and is retaining some fluid. Again was told to expect this, and this isn't outside their range of normal for transplant patients. His mouth/throat still hurts him quite a bit. As does his legs. I'm thinking he possibly has some gout action going on again. I asked if they could run a uric acid level, just to be sure.
He told everyone yesterday that I was coming and that I would kick his bum into gear! I laughed! So I get to be the mean wife and make him walk, stretch, shower and do lots of mouth care today. I look forward to the challenge! Ha Ha Ha. I already gave him a time limit for him to rest. I'm hoping we can get into a routine of self care before I leave. He needs to be stretching his poor legs, walking and maintaining strength. I'm afraid that the last several weeks he hasn't been walking and exercising as much as he should, and he is quite weak from being in bed. Probably another reason his legs hurt so bad.
He is so sweet and patient. He is miserable yet he looks to see what he can do to make me comfortable! He is a darling to his medical helpers. Although I'm afraid I would be very cranky! I can't believe how much patience one person can have. This is a terrible ordeal to go through. And it amazes me that many people survive and find cure with this regimen. I can also see why many choose not to do it or don't survive. I'm amazed at Jeremie's strength. I stand in awe.
This is definitely the low period for him...and expected. I gotta keep reminding myself of that! This is expected, this is what we were warned of, this is what we feared and this is what is being worked through. Doesn't make it easier, but it does help me breathe.
When we were signing our lives away (felt like it anyway) to begin this process of transplant. We talked about all the possibilities with our oncologists. How to proceed if the leukemia comes back during this process. How to proceed if Jeremie needed ICU support. How to proceed if Jeremie "needed" ICU support, but transplant wasn't working like hoped. Basically we talked about all possibilities and how we wanted to go through this process. It was a wonderful conversation. We came away feeling understood and supported, no matter the outcome.
When the oncologist called me yesterday she brought up the possibility of Jeremie being admitted to ICU. She said he is stable now, but that can change in a heart beat. She said she would recommend ICU treatment if he needed it. Meaning that he is doing well with the transplant, looks to be disease free and ICU treatment would help in his healing during this process. It made me feel more relaxed to be honest. I don't want him to end up in ICU, but it is nice to know if he was sent there it would be for giving this transplant the best chance in working.
So many different levels of stress. Needing him to be in remission, and give the transplanted cells time to grow and work. Needing him to be infection free so he can stay strong. Needing him to stay physically strong so he can get through this. Whew...just a couple more weeks of waiting. Jeremie is at day 16. Approximately 6-26 days until we should see signs of engraftment. They will be looking for an increase in white blood cells, specifically neutrophils. And he will not be needing platelets and red-blood cells like he does now. He will start producing his own. He will then be able to start the healing process on his body. Things will change rapidly from that point on.
Well that is all for now...
Love,
Cori
Luckily I didn't wake him when I arrived at 11:00 p.m., he was getting some blood work done, some more antibiotics hung and was wide awake. I got to enjoy laying by him and holding him. It felt so good, I can't believe it was real.
Slept pretty good too. They are definitely in his room more during the night. But I think I have learned to tune them out (finally!), or I'm happy they are here and checking on him. Could be both!
I spoke with one of the oncologists yesterday. She wanted to give me an update. She said Jeremie is stable. Jeremie looks miserable and is miserable. She explained that he has a staph infection (on his skin). His poor skin is in terrible shape. He has rashes, swelling, dry skin and flaking. All normal for this stage of the game. She said it wasn't uncommon for him to have a staph infection given the state of his skin. So they added another antibiotic. Poor guy was started on Vancomycin. Yuck! You can give Jeremie chemo and radiation and he does pretty good. Give him an antibiotic and the man just feels terrible. Vancomycin has to be ran very slow with Jeremie, otherwise he turns into a big rash and pink all over.
So his poor right eye is swollen shut, due to the violent nature in which he expels the contents of his stomach (i.e he throws up). And his left eye is also blood shot and swollen. He is very puffy and is retaining some fluid. Again was told to expect this, and this isn't outside their range of normal for transplant patients. His mouth/throat still hurts him quite a bit. As does his legs. I'm thinking he possibly has some gout action going on again. I asked if they could run a uric acid level, just to be sure.
He told everyone yesterday that I was coming and that I would kick his bum into gear! I laughed! So I get to be the mean wife and make him walk, stretch, shower and do lots of mouth care today. I look forward to the challenge! Ha Ha Ha. I already gave him a time limit for him to rest. I'm hoping we can get into a routine of self care before I leave. He needs to be stretching his poor legs, walking and maintaining strength. I'm afraid that the last several weeks he hasn't been walking and exercising as much as he should, and he is quite weak from being in bed. Probably another reason his legs hurt so bad.
He is so sweet and patient. He is miserable yet he looks to see what he can do to make me comfortable! He is a darling to his medical helpers. Although I'm afraid I would be very cranky! I can't believe how much patience one person can have. This is a terrible ordeal to go through. And it amazes me that many people survive and find cure with this regimen. I can also see why many choose not to do it or don't survive. I'm amazed at Jeremie's strength. I stand in awe.
This is definitely the low period for him...and expected. I gotta keep reminding myself of that! This is expected, this is what we were warned of, this is what we feared and this is what is being worked through. Doesn't make it easier, but it does help me breathe.
When we were signing our lives away (felt like it anyway) to begin this process of transplant. We talked about all the possibilities with our oncologists. How to proceed if the leukemia comes back during this process. How to proceed if Jeremie needed ICU support. How to proceed if Jeremie "needed" ICU support, but transplant wasn't working like hoped. Basically we talked about all possibilities and how we wanted to go through this process. It was a wonderful conversation. We came away feeling understood and supported, no matter the outcome.
When the oncologist called me yesterday she brought up the possibility of Jeremie being admitted to ICU. She said he is stable now, but that can change in a heart beat. She said she would recommend ICU treatment if he needed it. Meaning that he is doing well with the transplant, looks to be disease free and ICU treatment would help in his healing during this process. It made me feel more relaxed to be honest. I don't want him to end up in ICU, but it is nice to know if he was sent there it would be for giving this transplant the best chance in working.
So many different levels of stress. Needing him to be in remission, and give the transplanted cells time to grow and work. Needing him to be infection free so he can stay strong. Needing him to stay physically strong so he can get through this. Whew...just a couple more weeks of waiting. Jeremie is at day 16. Approximately 6-26 days until we should see signs of engraftment. They will be looking for an increase in white blood cells, specifically neutrophils. And he will not be needing platelets and red-blood cells like he does now. He will start producing his own. He will then be able to start the healing process on his body. Things will change rapidly from that point on.
Well that is all for now...
Love,
Cori
Monday, March 7, 2011
03/07/2011
This last week has been so crazy busy. Trying to get caught up last week with family/work/house was an adventure. Attemtping to sleep alone in my bed was another. I don't quite think I slept longer than 2-4 hours each night. So exhaustion is starting to rear its ugly head. I think that is why my ability to cope is waning.
We (meaning the 5 little monsters and myself) went up to Salt Lake on Friday night. We didn't end up getting out of St. George until 8 p.m. So we didn't get into Salt Lake until around midnight. Thank goodness for Alex he drove until Nephi until he was too tired to drive. It is nice to have another driver in the family. I am looking forward to Scarlett getting her permit :-).
We then went over to the hospital Saturday morning. My Jeremie spoils and protects me. I've kind of suspected it, but now I know for sure. This whole last week I have called him several times a day. He did tell me it was difficult to talk, but that he was doing fine. I started emailing him during the day to tell about the kids and my yucky sleep, and how much I miss him. That way he didn't feel obligated to chit-chat with his needy wife. I also knew he had lost his hair as last week when I was saying goodbye his hair was in my hands. But I wasn't prepared for how pale, tired and just plain worn out my poor baby was. It just took me by surprise. I don't know why...I mean we have been down this road before. I will admit it shook me. The kids and I just stayed a little while. Then I took my kids to my moms.
Scarlett and I were able to spend several quite hours with him while he slept. It was a needed break for me. I enjoy pressing the silence button on his I.V. pumps, pressing the call button when his infusions are complete and being there when his eyes do open. But all too soon it ended. It is very difficult to bring all the kids up to Salt Lake and really spend the time I feel I need to spend with him. So the kids and I discussed on the way home of them staying in St. George during the weekends. They are so good to their mom :-)
I just want to hold him close. Let him rest. And watch him heal. He really is doing quite well. Everyone on his medical team reports that things are just as they are supposed to be. That doesn't make it easy on him or his friends/family. But he is on the right track. His numbers are still zero...don't really expect any changes from that end for at least another 11-30 days. So they continue to support him with blood tranfusions & platelets. He has quite a bit of mouth/throat pain caused from sores. They are starting to heal. But his poor body just takes forever. It will speed up expotentially once his blood counts return. He still has the pain pump, and is experiencing the whole nausea/vomitting side of cancer treatment.
I will probably only update weekly while things are at a "stand still" or stable. Of course I will update with any news or changes.
Lots of Love,
Cori
We (meaning the 5 little monsters and myself) went up to Salt Lake on Friday night. We didn't end up getting out of St. George until 8 p.m. So we didn't get into Salt Lake until around midnight. Thank goodness for Alex he drove until Nephi until he was too tired to drive. It is nice to have another driver in the family. I am looking forward to Scarlett getting her permit :-).
We then went over to the hospital Saturday morning. My Jeremie spoils and protects me. I've kind of suspected it, but now I know for sure. This whole last week I have called him several times a day. He did tell me it was difficult to talk, but that he was doing fine. I started emailing him during the day to tell about the kids and my yucky sleep, and how much I miss him. That way he didn't feel obligated to chit-chat with his needy wife. I also knew he had lost his hair as last week when I was saying goodbye his hair was in my hands. But I wasn't prepared for how pale, tired and just plain worn out my poor baby was. It just took me by surprise. I don't know why...I mean we have been down this road before. I will admit it shook me. The kids and I just stayed a little while. Then I took my kids to my moms.
Scarlett and I were able to spend several quite hours with him while he slept. It was a needed break for me. I enjoy pressing the silence button on his I.V. pumps, pressing the call button when his infusions are complete and being there when his eyes do open. But all too soon it ended. It is very difficult to bring all the kids up to Salt Lake and really spend the time I feel I need to spend with him. So the kids and I discussed on the way home of them staying in St. George during the weekends. They are so good to their mom :-)
I just want to hold him close. Let him rest. And watch him heal. He really is doing quite well. Everyone on his medical team reports that things are just as they are supposed to be. That doesn't make it easy on him or his friends/family. But he is on the right track. His numbers are still zero...don't really expect any changes from that end for at least another 11-30 days. So they continue to support him with blood tranfusions & platelets. He has quite a bit of mouth/throat pain caused from sores. They are starting to heal. But his poor body just takes forever. It will speed up expotentially once his blood counts return. He still has the pain pump, and is experiencing the whole nausea/vomitting side of cancer treatment.
I will probably only update weekly while things are at a "stand still" or stable. Of course I will update with any news or changes.
Lots of Love,
Cori
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