Well I guess I have to post this week. Most of you know by now that on July 23rd, 2011 at 11:55 p.m., my soul-mate, my love, my best friend and my eternal companion passed away.
My Jeremie...my Jeremie. I miss him terribly, yet feel him by me constantly. To be with him as he passed from this world into another existence was a beautiful and sacred experience. Jeremie is finally not suffering. He finally is at peace. And I like to think of the many things he might be experiencing now that he is not under the constraints of a physical body.
I've made myself quite ill from the last several days. I'm a dork and didn't eat or drink or go to the bathroom for 3 days. You think that I would have had the thought process of needing to feed and take care of basic needs. Amazing how those needs are unnoticed when you don't want to blink your eyes 'cause you might miss something.
Our family was with us this weekend. What a blessing to have everyone, all together. I think this is why Jeremie could go home, he said goodbye.
My sweet mother is staying with me this week as I attempt to prepare for Jeremie's funeral. What a blessing. See...sometimes I do know that I need help.
Jeremie's viewing will be on Friday, 07/29/2011 from 7-9 p.m. at our Stake Center, and the funeral will be on Saturday, 07/30/11 at 1 p.m., same Stake Center. Following the funeral there will be grave-side services in the Ivins City cemetery.
Washington Fields Stake Center
1297 S 3000 E
Washington, UT 84780
Obviously this is a time my sweet kids and myself are really struggling. I'm so grateful for the last year that I got to have with him. I'm grateful for the adventures that we have been able to share in our life. I'm sad because we wanted to do so much. But this life is short, and we aren't meant to be here for eternity. Somehow, some way, some time, I will understand why. Right now I'm just focusing on how he just doesn't hurt anymore. He loved his life, his children and he made me feel like a loved, beautiful princess everyday.
So his funeral arrangements have been made. There is some peace with having that finished. Next will be trying to duct-tape myself together, and keep myself together so that I may continue to live each day as he would have me live it. With intention.
Love you all...
Cori
Monday, July 25, 2011
Tuesday, July 19, 2011
07/19/2011
Well Jeremie was discharged from the hospital. Woo Hoo!!! Took stinking forever! Good heavens. Jeremie is doing really well today. It seems the pain is under control. No small feat!
So the results from yesterdays CT scan. Jeremie has tumors on/in the pleural space in his chest. Tumor on his chest wall and a mass on his adrenal gland, and the numerous tumors we see right under his skin. Needless to say the last couple of treatments with the Dacogen haven't been effective. And that the leukemia is progressing despite treatment and the transplant. We had started backing off of the steroid over the last two weeks, and Jeremie started having stomach problems again (graft vs host disease, without a good anti-leukemia effect).
We had a wonderful, real and thoughtful conversation with our oncologist last night. We have decided to go on IHC's hospice services. This will allow better pain control for Jeremie. In some ways it has freed us. It is like we are just entering the next phase of treatment and our life. I personally feel some pressure that has been lifted. We of course asked The All Pertinent Question (I'm sure you are all wondering as well), what is our time-frame? That question is a question we do not have an answer for. We were told that there isn't a crystal ball. We do know Jeremie's disease is progressing, and we have wonderful nurses and an incredible doctor that will make sure Jeremie will live his life as pain free as possible. And I can't ask for anything more.
Officially being moved to hospice doesn't really change anything in our life. Except access to pain medication/pumps/staff etc at all times. And hopefully no more hospital admissions! So that is kind of it in a nutshell.
We plan to go have some more adventures...and will definitely update them here :-)
Love to all...
Cori & Jeremie
So the results from yesterdays CT scan. Jeremie has tumors on/in the pleural space in his chest. Tumor on his chest wall and a mass on his adrenal gland, and the numerous tumors we see right under his skin. Needless to say the last couple of treatments with the Dacogen haven't been effective. And that the leukemia is progressing despite treatment and the transplant. We had started backing off of the steroid over the last two weeks, and Jeremie started having stomach problems again (graft vs host disease, without a good anti-leukemia effect).
We had a wonderful, real and thoughtful conversation with our oncologist last night. We have decided to go on IHC's hospice services. This will allow better pain control for Jeremie. In some ways it has freed us. It is like we are just entering the next phase of treatment and our life. I personally feel some pressure that has been lifted. We of course asked The All Pertinent Question (I'm sure you are all wondering as well), what is our time-frame? That question is a question we do not have an answer for. We were told that there isn't a crystal ball. We do know Jeremie's disease is progressing, and we have wonderful nurses and an incredible doctor that will make sure Jeremie will live his life as pain free as possible. And I can't ask for anything more.
Officially being moved to hospice doesn't really change anything in our life. Except access to pain medication/pumps/staff etc at all times. And hopefully no more hospital admissions! So that is kind of it in a nutshell.
We plan to go have some more adventures...and will definitely update them here :-)
Love to all...
Cori & Jeremie
Monday, July 18, 2011
07-18-2011
I was going to post yesterday. But it was a hectic crazy day. Jeremie's poor mom has shingles. And she is down for the count with that nasty virus. That disease has literally made her bed ridden for the last two weeks. I feel so bad for her. Plus I had this nagging feeling that I would just end up posting again. And really why add to the writing...you know?
Jeremie has had these tumor like growths popping up on his body over the last several months. Usually they are small, around a 1/2 centimeter in diameter and just under the skin. Most of them have been on his arms. Well about a month ago two big ones pop up on each of his lower legs. One on the front right of his right leg and the other one in the middle of his left calf. The right one is not movable and feels like it is attached to something deeper. They have worried Jeremie and I as his legs feel numb and weak. We of course have brought these up. But again, kind of assumed what they were and that we really weren't going to do anything about them. And in all reality there isn't a whole lot to do about them.
Saturday I felt a small one on his rib cage, and on Sunday I could feel a large on on his left chest, with something underneath it as well. His pain since Friday night has increased to out of control levels. We tried adding a pain patch on Friday night and Sunday night a higher dose pain patch. Today, Monday it was VERY out of control. Called our Doc this morning. Jeremie was going to start his Dacogen treatment today. We went to the infusion clinic to have Jeremie's lab's drawn and my sweet nursing buddy was there. I kind of snagged her and asked if she could call Dr. Lemon to get something for Jeremie's pain. So he received pain medication and then we were off to see Dr. Lemon.
So the easiest course of action and quickest, is to have Jeremie admitted. YUCK! Seriously was working really, really hard on making that NOT happen. But oh well. Jeremie is going to have a CT scan of his abdomen and chest. And he was started on a pain pump (again). This is the part that is the hardest. I'm definitely experiencing some PSTD at the moment. I feel like we are back on the super scary pain pump road that wasn't working so well.
We are both so scared right now. We have had such fun over the last several weeks. And we just aren't ready to give that up. I'm scared about what I need to say to my kids. We keep talking about everything, but I just haven't let it escape from my mouth that it really might be getting close to the end. I of course haven't had a moment of letting that thought go out of my head. But it is different to verbalize it. It makes it a bit more real. I'm really tired of this reality. But I'm also getting to the point of wanting to hear some real, live possibilities of what our future holds for us in the next day, week or month. I truly have no idea what to expect. And trying to nail down what is exactly going on with Jeremie is liking holding on to jello. I know the man has leukemia. But how do these tumors play a role? Do they shorten his time? Are they going to be decreasing quality of life? Is there anything to be done about them? And for the first time I am desperately wanting to know what to expect. Humph! There got it out!
Can we go back to la la land for a minute? I just want to be at home with him. Out of pain. With our kids. Going through our life. I'm so tired. And I just can't imagine how tired my Jeremie is. He just doesn't want to hurt anymore.
Well I wish I could write that everything works as it should, and he is just going to survive with leukemia and we could go about our life (just adjusted), and watch our babies grow together. And make fun of each other when we are really old and wrinkly. Unfortunately he will be forever beautiful, and non-wrinkly. I don't think even Shakespeare could right a tragedy so sad as this.
Sorry to leave on a sad note...off to help Jeremie choke down some barium...
Love to all...
Cori
Jeremie has had these tumor like growths popping up on his body over the last several months. Usually they are small, around a 1/2 centimeter in diameter and just under the skin. Most of them have been on his arms. Well about a month ago two big ones pop up on each of his lower legs. One on the front right of his right leg and the other one in the middle of his left calf. The right one is not movable and feels like it is attached to something deeper. They have worried Jeremie and I as his legs feel numb and weak. We of course have brought these up. But again, kind of assumed what they were and that we really weren't going to do anything about them. And in all reality there isn't a whole lot to do about them.
Saturday I felt a small one on his rib cage, and on Sunday I could feel a large on on his left chest, with something underneath it as well. His pain since Friday night has increased to out of control levels. We tried adding a pain patch on Friday night and Sunday night a higher dose pain patch. Today, Monday it was VERY out of control. Called our Doc this morning. Jeremie was going to start his Dacogen treatment today. We went to the infusion clinic to have Jeremie's lab's drawn and my sweet nursing buddy was there. I kind of snagged her and asked if she could call Dr. Lemon to get something for Jeremie's pain. So he received pain medication and then we were off to see Dr. Lemon.
So the easiest course of action and quickest, is to have Jeremie admitted. YUCK! Seriously was working really, really hard on making that NOT happen. But oh well. Jeremie is going to have a CT scan of his abdomen and chest. And he was started on a pain pump (again). This is the part that is the hardest. I'm definitely experiencing some PSTD at the moment. I feel like we are back on the super scary pain pump road that wasn't working so well.
We are both so scared right now. We have had such fun over the last several weeks. And we just aren't ready to give that up. I'm scared about what I need to say to my kids. We keep talking about everything, but I just haven't let it escape from my mouth that it really might be getting close to the end. I of course haven't had a moment of letting that thought go out of my head. But it is different to verbalize it. It makes it a bit more real. I'm really tired of this reality. But I'm also getting to the point of wanting to hear some real, live possibilities of what our future holds for us in the next day, week or month. I truly have no idea what to expect. And trying to nail down what is exactly going on with Jeremie is liking holding on to jello. I know the man has leukemia. But how do these tumors play a role? Do they shorten his time? Are they going to be decreasing quality of life? Is there anything to be done about them? And for the first time I am desperately wanting to know what to expect. Humph! There got it out!
Can we go back to la la land for a minute? I just want to be at home with him. Out of pain. With our kids. Going through our life. I'm so tired. And I just can't imagine how tired my Jeremie is. He just doesn't want to hurt anymore.
Well I wish I could write that everything works as it should, and he is just going to survive with leukemia and we could go about our life (just adjusted), and watch our babies grow together. And make fun of each other when we are really old and wrinkly. Unfortunately he will be forever beautiful, and non-wrinkly. I don't think even Shakespeare could right a tragedy so sad as this.
Sorry to leave on a sad note...off to help Jeremie choke down some barium...
Love to all...
Cori
Saturday, July 16, 2011
Pictures :-)
Hee hee hee lets see if I figured out how to post our pictures :-)
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Our Family:-)
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Our oldest son Alex...almost 18
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My beautiful daughter Scarlett...15
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My sweet Har-bear (Harrison)...13
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Ahhh...my lil' Jeremie...sweet, sweet baby....10 years old
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My little desert baby Phoenix...mommy & daddy's baby...9 years old
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One of my favorite pictures of all time...captures everything I love about our life....
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This is the one shot...that I asked or had in my brain before we went to have the photos done. I've seen this image in my head when I see Jeremie doing the things he loves. When he leaves this earth this is how I see him leaving...
Kellie...sweet Kellie, you have an amazing gift of capturing children and families...thank you for sharing your gift and capturing my family as I see them everyday...beautiful. http://www.elementsphotographystudio.com/
Love to all....
Cori
Kellie...sweet Kellie, you have an amazing gift of capturing children and families...thank you for sharing your gift and capturing my family as I see them everyday...beautiful. http://www.elementsphotographystudio.com/
Love to all....
Cori
Sunday, July 10, 2011
07/10/2011
I love the theme song to "The Love Boat"...remember that T.V. series? "Love boat...exciting and new...love boat...". That is sort of my theme for today ;-) Ha Ha Ha! I always have the weirdest songs pop up in my head when I start thinking of what is going on at various times. To be so gross, but absolutely on topic, I had that diarrhea song stuck in my head the other day. But that song was stuck in my head because I was thinking of the show "Parenthood", you know the one with Steve Martin in it. I love that show.
Anyway...on to better things besides the scary thoughts in my head. Jeremie has popped up with some interesting things lately. It has been somewhat hard to find my motivation for posting about it. It seems as if I post everything that poor man pops up with I would be writing all day long. And we know how I feel about writing.
So July 4th we got to go to ER again! Seriously the hole stinking day was spent in ER. On Sunday July 3rd, Jeremie was driving the Yukon and said that he needed to tell me something, but that he couldn't because I would make him pull the car over and not allow him to drive. I got that lovely adrenaline feeling pumping through my veins when he said that and just asked him to pull the car over immediately without asking why. He then proceeded to tell me he was having double vision and that he was having difficulty seeing and focusing. Oh man! Heart definitely pumping, having one of those moments of panic. I'm of course immediately thinking "CHLOROMA IN THE BRAIN!". He also told me he was having numbness and tingling in his legs, especially his left leg. Grrrrr!!!!
On July 4th, his left eye would track and move with objects. His right eye would move towards the left, but not the right, so he looked like he had a lazy eye. Very disorienting to look at. He said it was very disorienting to look through! We went to the infusion clinic, and I was starting to get a yucky feeling. I decided to text Dr. Lemon, not panic poor Jeremie. Dr. Lemon who wasn't on call, texted us back and said we had to go to ER and get an MRI immediately. We did what we where told.
We arrived to ER, at least we had a purpose and knew exactly what we needed. In the meantime of being put into a room. Oh yeah...Jeremie had a neutrophil count of 500! And we are in the ER!!!! He had to wear his mask the whole stinking 6 hours! The ER is sooo GROSS! While we where in the room waiting, the infusion clinic nurse called and reported that Jeremie had a critical value level on his potassium and that we needed to go to the ER. Well Howdy! We were already there. How convenient.
So first they did the MRI. I'm thinking yup...chloroma of the brain. And thinking oh my gosh, what is the next few months going to look like now? Jeremie had already been struggling the past week. He had been feeling like everything has been slowly taken from him. His strength...and now his sight...what else was going to be next? Miraculously the MRI can back CLEAN!!!!! WOO HOO!!!!!! Seriously if I could have jumped for joy it would have been 10 stories high. I felt such relief. While waiting for the MRI results. The on-call oncologist spoke with the ER doc and asked if they could repeat the labs. The did a repeat and Jeremie's potassium was actually higher. They wanted to admit him. We of course already talked this out and had a united front of saying NO! Seriously he has leukemia, we know this. Why admit and waste more of our time in the dumb hospital. They gave us a prescription to give Jeremie to get rid of the excess potassium and we went home for fireworks!
Thinking the story is over? Of course it isn't...don't you know our luck yet? As my mother would say if I didn't have bad luck I wouldn't have any at all. We went to see the Doc on Tuesday last week. They can't rule out anything really going on the in the brain, relating to leukemia. The actual nerve that is effecting Jeremie's vision is his right cranial nerve vi (6). This is the nerve that allows the eyes to move laterally or side to side. This is of course the nerve you cannot see on his MRI. While they could rule out large masses or lesions. They cannot rule out a leukemic cause. Since Jeremie didn't have a TIA, ocular stroke or have vascular problems. It leaves leukemia. The opthamologist said the nerve could heal anywhere from 4 weeks to 6 months. Some viruses can also cause this problem. We have also had those ruled out. And what does Jeremie have? Leukemia. Oh and the potassium is still high (the high 5's it was 6.8 for my medical friends out there and his sodium is 120...know why I have a headache now?)
So my gorgeous man is a devil of a pirate. He can orient better if his right eye is covered. We got him a patch :-)...totally adorable too. They can't rule out chloromas or masses on his spine that also might be effecting nerves leading to the brain. And of course there is always a part of you that wants to go running down the rabbit hole to follow Alice, but you have to ask yourself...to what end? What information will this bring. Will we know something different than we know right now? Will it change our direction? Will it bring a better life? Will it cost money, time, energy and cause pain? We already know and knew the answer. Jeremie has leukemia. It is a bit frustrating. 'Cause we have constant reminders that Jeremie has leukemia, there isn't a moment or a day that will go by that we don't have a reminder. He is worn out from it. Tired of it taking little pieces of him and his life he likes to live. I keep saying, "I'm not ready, I'm not ready, I'm just not ready". Even though I know there isn't a loop hole...I keep trying to find one. My brain just won't stop.
Ugh...my heart and mind is a bit heavy. Jeremie had a difficult day Friday. We had to be at the infusion clinic by 8:00 am, then over to the Doc's office by 9:30, then me back at work. Jeremie will have a bad day if he is made to be up and going earlier than 1:00. It wears out his poor body, and breaks my heart. So I have a special request of my family and friends. Please, please, please...do not call him, leave a message or text him before 2:00. He can't turn off his phone as he uses it for a flash light at night. The light from the room disorients him, and he doesn't want to sleep with the eye patch on. If you need something from him or whatever reason you can always call me or text me with your questions or just wait until around 2:00. Thank you!!!
On a happier note. WE HAVE A BACKYARD!!!! Our amazing Ward put our yard in on Saturday. I got up to be helpful with laying sod (was told to expect it to be ready around 8 am to lay). I was out by 8:16 am and the lawn was finished! It is beautiful. I was so excited. It was hard not to go shake Jeremie awake and make him come look at it with me. I probably looked like an idiot. All I could do was stare...so afraid it was going to disappear if I closed my eyes. I spent 5 minutes of my day inside yesterday. I stayed outside the whole day. We ate dinner out there last night and tonight. Jeremie was so excited when he got up. We keep walking around and around it. THANK YOU!!! THANK YOU!!! What an amazing gift. We love being outside. Jeremie loves the back yard and now has a chance to enjoy it :-)
Well I'm gonna go nurse my dumb migraine. Man I'm sick of those...
Love to all of you....
Cori
Anyway...on to better things besides the scary thoughts in my head. Jeremie has popped up with some interesting things lately. It has been somewhat hard to find my motivation for posting about it. It seems as if I post everything that poor man pops up with I would be writing all day long. And we know how I feel about writing.
So July 4th we got to go to ER again! Seriously the hole stinking day was spent in ER. On Sunday July 3rd, Jeremie was driving the Yukon and said that he needed to tell me something, but that he couldn't because I would make him pull the car over and not allow him to drive. I got that lovely adrenaline feeling pumping through my veins when he said that and just asked him to pull the car over immediately without asking why. He then proceeded to tell me he was having double vision and that he was having difficulty seeing and focusing. Oh man! Heart definitely pumping, having one of those moments of panic. I'm of course immediately thinking "CHLOROMA IN THE BRAIN!". He also told me he was having numbness and tingling in his legs, especially his left leg. Grrrrr!!!!
On July 4th, his left eye would track and move with objects. His right eye would move towards the left, but not the right, so he looked like he had a lazy eye. Very disorienting to look at. He said it was very disorienting to look through! We went to the infusion clinic, and I was starting to get a yucky feeling. I decided to text Dr. Lemon, not panic poor Jeremie. Dr. Lemon who wasn't on call, texted us back and said we had to go to ER and get an MRI immediately. We did what we where told.
We arrived to ER, at least we had a purpose and knew exactly what we needed. In the meantime of being put into a room. Oh yeah...Jeremie had a neutrophil count of 500! And we are in the ER!!!! He had to wear his mask the whole stinking 6 hours! The ER is sooo GROSS! While we where in the room waiting, the infusion clinic nurse called and reported that Jeremie had a critical value level on his potassium and that we needed to go to the ER. Well Howdy! We were already there. How convenient.
So first they did the MRI. I'm thinking yup...chloroma of the brain. And thinking oh my gosh, what is the next few months going to look like now? Jeremie had already been struggling the past week. He had been feeling like everything has been slowly taken from him. His strength...and now his sight...what else was going to be next? Miraculously the MRI can back CLEAN!!!!! WOO HOO!!!!!! Seriously if I could have jumped for joy it would have been 10 stories high. I felt such relief. While waiting for the MRI results. The on-call oncologist spoke with the ER doc and asked if they could repeat the labs. The did a repeat and Jeremie's potassium was actually higher. They wanted to admit him. We of course already talked this out and had a united front of saying NO! Seriously he has leukemia, we know this. Why admit and waste more of our time in the dumb hospital. They gave us a prescription to give Jeremie to get rid of the excess potassium and we went home for fireworks!
Thinking the story is over? Of course it isn't...don't you know our luck yet? As my mother would say if I didn't have bad luck I wouldn't have any at all. We went to see the Doc on Tuesday last week. They can't rule out anything really going on the in the brain, relating to leukemia. The actual nerve that is effecting Jeremie's vision is his right cranial nerve vi (6). This is the nerve that allows the eyes to move laterally or side to side. This is of course the nerve you cannot see on his MRI. While they could rule out large masses or lesions. They cannot rule out a leukemic cause. Since Jeremie didn't have a TIA, ocular stroke or have vascular problems. It leaves leukemia. The opthamologist said the nerve could heal anywhere from 4 weeks to 6 months. Some viruses can also cause this problem. We have also had those ruled out. And what does Jeremie have? Leukemia. Oh and the potassium is still high (the high 5's it was 6.8 for my medical friends out there and his sodium is 120...know why I have a headache now?)
So my gorgeous man is a devil of a pirate. He can orient better if his right eye is covered. We got him a patch :-)...totally adorable too. They can't rule out chloromas or masses on his spine that also might be effecting nerves leading to the brain. And of course there is always a part of you that wants to go running down the rabbit hole to follow Alice, but you have to ask yourself...to what end? What information will this bring. Will we know something different than we know right now? Will it change our direction? Will it bring a better life? Will it cost money, time, energy and cause pain? We already know and knew the answer. Jeremie has leukemia. It is a bit frustrating. 'Cause we have constant reminders that Jeremie has leukemia, there isn't a moment or a day that will go by that we don't have a reminder. He is worn out from it. Tired of it taking little pieces of him and his life he likes to live. I keep saying, "I'm not ready, I'm not ready, I'm just not ready". Even though I know there isn't a loop hole...I keep trying to find one. My brain just won't stop.
Ugh...my heart and mind is a bit heavy. Jeremie had a difficult day Friday. We had to be at the infusion clinic by 8:00 am, then over to the Doc's office by 9:30, then me back at work. Jeremie will have a bad day if he is made to be up and going earlier than 1:00. It wears out his poor body, and breaks my heart. So I have a special request of my family and friends. Please, please, please...do not call him, leave a message or text him before 2:00. He can't turn off his phone as he uses it for a flash light at night. The light from the room disorients him, and he doesn't want to sleep with the eye patch on. If you need something from him or whatever reason you can always call me or text me with your questions or just wait until around 2:00. Thank you!!!
On a happier note. WE HAVE A BACKYARD!!!! Our amazing Ward put our yard in on Saturday. I got up to be helpful with laying sod (was told to expect it to be ready around 8 am to lay). I was out by 8:16 am and the lawn was finished! It is beautiful. I was so excited. It was hard not to go shake Jeremie awake and make him come look at it with me. I probably looked like an idiot. All I could do was stare...so afraid it was going to disappear if I closed my eyes. I spent 5 minutes of my day inside yesterday. I stayed outside the whole day. We ate dinner out there last night and tonight. Jeremie was so excited when he got up. We keep walking around and around it. THANK YOU!!! THANK YOU!!! What an amazing gift. We love being outside. Jeremie loves the back yard and now has a chance to enjoy it :-)
Well I'm gonna go nurse my dumb migraine. Man I'm sick of those...
Love to all of you....
Cori
Sunday, July 3, 2011
07/03/2011
Well today, or I should say this weekend has brought up a lot of memories of the last year. July 5th 2010 marks the beginning of our nightmare starting in the emergency room on July 5th (twice) continuing through ER visits on July 7th & 9th. With in between visits with our primary care doctor. Searching for a reason that would explain Jeremie's terrible pain.
In some ways this last year has been the most amazing and touching year of my life, and dare I say even our families life. We have experienced the sharing of love, generosity and kindness that I can't believe we have been the recipients of.
So a quick short snap-shot of our last year...
We had some issues getting into our new home on the expected date of June 14th, 2010. We finally closed on our house on July 7th, 2010. Poor Jeremie, I told him to "act healthy" at the closing. I was sure at that point he was having gallbladder issues. Still wish he was having gallbladder issues.
It was a miracle that we got through the closing, now that I look back on it. He was hurting so bad. We rented a U-Haul truck that night, and started moving stuff over to our new home. Jeremie was too sick. Some of the shop helpers of Saville Furniture helped us load the U-Haul to get it over to our house. Jeremie, through the grace of God was able to help unload the truck, along with one of our new neighbors. This neighbor needs a medal, I decided he is the energizer bunny ;-)
Jeremie went to ER again on July 9th. His poor dad took him for me. I was sick and hurting from a minor surgery I had that day. It was such a mess! That was the night the ER doc told Jeremie not to come back, as they can't find anything wrong with him. Gotta love that. Seriously can't focus on that or I get really cranky. And that was so three weeks ago ;-)
I ended up the next day running over to my two neighbors we had met while building our house. I asked them to come and give Jeremie a blessing. These two men just popped up and ran over. At least I felt a little peace with that.
Monday July 11th I went to clinical. I just couldn't stop thinking about Jeremie. I was researching and researching and researching. I had not requested a copy of Jeremie's labs up to this point. I really just kept believing that everything was coming back normal (well except for the horribly high D-Dimer...which we were told some people walk around with high D-Dimers...seriously they told us that). Noted that one to myself, I never, ever trust that everything is normal, no matter who the person is. Jeremie was not able to go to work as his pain was unbearable. This man had not taken a day off in the 10 years he had been working at the shop. And he had not been to work since July 2nd.
Tuesday July 12th, we had an appointment with our primary care doc, as obviously we couldn't figure out what was going on with Jeremie. At one point in the visit I explained that I was starting to get very upset and paranoid as something was very wrong with my husband. That this isn't him. He pulled up the labs on the computer and said they all show normal, "oh well, all except for his hematocrit". I said "do you think it is normal for a 34 year old man to have low hematocrit?". He replied that no, he didn't, and that we would repeat the labs. Jeremie went home and I went back to work. I decided to obtain a copy of Jeremie's labs.
This is where I kick myself over and over again. Jeremie's labs were only normal on his first ER visit at 2 am on July 5th. Three hours later when we returned to ER, as Jeremie's "virus" (yup that is what they diagnosed him with first) was causing him extreme pain, they had labs pulled again. This is when his labs became abnormal (oh, and every single visit there on out they were abnormal). Grrrr....If I had just asked exactly what they were, not taken their word for it, he wouldn't have hurt for so long.
Doctor Lemon became my hero on July 12th at 4:00 p.m. It took a five minute conversation with him...explaining what was happening with Jeremie and what Jeremie's labs were over the last week for him to know exactly what was wrong with Jeremie. Of course he didn't say what he thought. He just said to bring Jeremie to the 3rd floor of the hospital, he was getting admitted and Jeremie was going to have a bone-marrow biopsy.
That night Jeremie's platelets were so low, along with an out of whack clotting time he was at risk for bleeding to death. Jeremie had sneezed that night and had a terrible bloody nose that was hard to stop. By that morning of July 13th, they knew that Jeremie had leukemia. However at that time they thought he had APML or acute pro-myleocytic leukemia (with that leukemia you look like you have DIC or disseminated intravascular coagulation, you can't clot correctly in your blood, you make tiny little clots and really thin blood, super-duper dangerous). It has a cure rate of 95% and is treated with high dose Vitamin A and chemo. But they were going to have to life-flight Jeremie to LDS hospital as he wasn't hemodynamically stable. Or he could have bled to death.
Over the next few days of being at LDS hospital we learned Jeremie's cytogenetics of his leukemia and began this new and scary road of having cancer at 34, along with a wife and five young children. I love reading about AML because it is "primarily a cancer of elderly men". Yeah right.
This emotional, scary road has been made easier and tolerable by the amazing people we call neighbors and friends. Our ward, although they didn't know us, didn't even know we were LDS came to our rescue. They brought and continue to bring us meals. They help with my kids, picking them up for scouts and activities. They have fasted for us and prayed for us. As a ward they decided to help get our back-yard finished. I can't tell you how touching this is. To be able to enjoy our home to its fullest with my sweet Jeremie here on this earth...is amazing. They are giving their time, talents and generosity, that they just don't have to do. Plus in the heat of this summer. I wish I had words to express the thankfulness in my heart for all of them.
My work has been incredible. What would I do without them? Constantly making sure we are ok. Asking if I need to take time off. And again, people generously making it possible for me to go back and forth to Salt Lake. Through their generosity, I didn't have to worry how to put gas in my gar for the 9 trips during Jeremie's transplant. And specifically my sweet Cedar office making sure I had a Christmas for my babies.
Through all these wonderful, incredible and giving people, I have been eased into being a one income household. I don't know how else it could have been done (not saying it is easy). I'm so grateful, so touched...how could I not see miracles around us. I think God does know us...my sweet mother-in-law feels that we were inspired to come to our neighborhood when we did. I think she is right.
Of course our family...how can I leave out our family? Man...mom, dad and Perry...really, what would I do without you? MeMe and PePe...I know you all would do everything in your power to fix this for us. I mean MeMe...you are working so hard on winning that $33 million! Favorite thing to do is make wish lists for MeMe for when she goes to Vegas ;-)
So stayed tuned for our next anniversary date on July 13th...Jeremie might actually blog that day!
Again, thank you all for being our rays of sunshine through our big dark gray cloud...
Lots of Love,
Cori & Jeremie
In some ways this last year has been the most amazing and touching year of my life, and dare I say even our families life. We have experienced the sharing of love, generosity and kindness that I can't believe we have been the recipients of.
So a quick short snap-shot of our last year...
We had some issues getting into our new home on the expected date of June 14th, 2010. We finally closed on our house on July 7th, 2010. Poor Jeremie, I told him to "act healthy" at the closing. I was sure at that point he was having gallbladder issues. Still wish he was having gallbladder issues.
It was a miracle that we got through the closing, now that I look back on it. He was hurting so bad. We rented a U-Haul truck that night, and started moving stuff over to our new home. Jeremie was too sick. Some of the shop helpers of Saville Furniture helped us load the U-Haul to get it over to our house. Jeremie, through the grace of God was able to help unload the truck, along with one of our new neighbors. This neighbor needs a medal, I decided he is the energizer bunny ;-)
Jeremie went to ER again on July 9th. His poor dad took him for me. I was sick and hurting from a minor surgery I had that day. It was such a mess! That was the night the ER doc told Jeremie not to come back, as they can't find anything wrong with him. Gotta love that. Seriously can't focus on that or I get really cranky. And that was so three weeks ago ;-)
I ended up the next day running over to my two neighbors we had met while building our house. I asked them to come and give Jeremie a blessing. These two men just popped up and ran over. At least I felt a little peace with that.
Monday July 11th I went to clinical. I just couldn't stop thinking about Jeremie. I was researching and researching and researching. I had not requested a copy of Jeremie's labs up to this point. I really just kept believing that everything was coming back normal (well except for the horribly high D-Dimer...which we were told some people walk around with high D-Dimers...seriously they told us that). Noted that one to myself, I never, ever trust that everything is normal, no matter who the person is. Jeremie was not able to go to work as his pain was unbearable. This man had not taken a day off in the 10 years he had been working at the shop. And he had not been to work since July 2nd.
Tuesday July 12th, we had an appointment with our primary care doc, as obviously we couldn't figure out what was going on with Jeremie. At one point in the visit I explained that I was starting to get very upset and paranoid as something was very wrong with my husband. That this isn't him. He pulled up the labs on the computer and said they all show normal, "oh well, all except for his hematocrit". I said "do you think it is normal for a 34 year old man to have low hematocrit?". He replied that no, he didn't, and that we would repeat the labs. Jeremie went home and I went back to work. I decided to obtain a copy of Jeremie's labs.
This is where I kick myself over and over again. Jeremie's labs were only normal on his first ER visit at 2 am on July 5th. Three hours later when we returned to ER, as Jeremie's "virus" (yup that is what they diagnosed him with first) was causing him extreme pain, they had labs pulled again. This is when his labs became abnormal (oh, and every single visit there on out they were abnormal). Grrrr....If I had just asked exactly what they were, not taken their word for it, he wouldn't have hurt for so long.
Doctor Lemon became my hero on July 12th at 4:00 p.m. It took a five minute conversation with him...explaining what was happening with Jeremie and what Jeremie's labs were over the last week for him to know exactly what was wrong with Jeremie. Of course he didn't say what he thought. He just said to bring Jeremie to the 3rd floor of the hospital, he was getting admitted and Jeremie was going to have a bone-marrow biopsy.
That night Jeremie's platelets were so low, along with an out of whack clotting time he was at risk for bleeding to death. Jeremie had sneezed that night and had a terrible bloody nose that was hard to stop. By that morning of July 13th, they knew that Jeremie had leukemia. However at that time they thought he had APML or acute pro-myleocytic leukemia (with that leukemia you look like you have DIC or disseminated intravascular coagulation, you can't clot correctly in your blood, you make tiny little clots and really thin blood, super-duper dangerous). It has a cure rate of 95% and is treated with high dose Vitamin A and chemo. But they were going to have to life-flight Jeremie to LDS hospital as he wasn't hemodynamically stable. Or he could have bled to death.
Over the next few days of being at LDS hospital we learned Jeremie's cytogenetics of his leukemia and began this new and scary road of having cancer at 34, along with a wife and five young children. I love reading about AML because it is "primarily a cancer of elderly men". Yeah right.
This emotional, scary road has been made easier and tolerable by the amazing people we call neighbors and friends. Our ward, although they didn't know us, didn't even know we were LDS came to our rescue. They brought and continue to bring us meals. They help with my kids, picking them up for scouts and activities. They have fasted for us and prayed for us. As a ward they decided to help get our back-yard finished. I can't tell you how touching this is. To be able to enjoy our home to its fullest with my sweet Jeremie here on this earth...is amazing. They are giving their time, talents and generosity, that they just don't have to do. Plus in the heat of this summer. I wish I had words to express the thankfulness in my heart for all of them.
My work has been incredible. What would I do without them? Constantly making sure we are ok. Asking if I need to take time off. And again, people generously making it possible for me to go back and forth to Salt Lake. Through their generosity, I didn't have to worry how to put gas in my gar for the 9 trips during Jeremie's transplant. And specifically my sweet Cedar office making sure I had a Christmas for my babies.
Through all these wonderful, incredible and giving people, I have been eased into being a one income household. I don't know how else it could have been done (not saying it is easy). I'm so grateful, so touched...how could I not see miracles around us. I think God does know us...my sweet mother-in-law feels that we were inspired to come to our neighborhood when we did. I think she is right.
Of course our family...how can I leave out our family? Man...mom, dad and Perry...really, what would I do without you? MeMe and PePe...I know you all would do everything in your power to fix this for us. I mean MeMe...you are working so hard on winning that $33 million! Favorite thing to do is make wish lists for MeMe for when she goes to Vegas ;-)
So stayed tuned for our next anniversary date on July 13th...Jeremie might actually blog that day!
Again, thank you all for being our rays of sunshine through our big dark gray cloud...
Lots of Love,
Cori & Jeremie
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