Jeremie has had bad back pain starting on Monday, when we were in California. I also woke up with a stiff back, shoulders and neck. I attributed my discomfort from the horrific bed we slept in. Jeremie's seemed a bit different. And of course any new pain with Jeremie makes my hair stand on end, anticipating the worse thing it could possibly be. We did bring up the discomfort Jeremie was having to the Doc at City of Hope. When we left we knew we would be having new orders for an MRI of his thoracic, cervical and lumbar spine, and also a bone marrow biopsy.
Jeremie went in Wednesday evening for the MRI. Back pain still pretty severe. Thank goodness for pain medication! LDS called Thursday morning, as they had received my message from Tuesday regarding the cord-blood transplant. Our coordinator explained that they would receive results from Jeremie's bone-marrow biopsy by Wednesday next week, if he had the bone-marrow with our oncologist on Monday 1/31/11. And we would hear from them then, with how to proceed. I did explain that we had an MRI done the night before. They would have access to the results as well.
Our oncologist here in St. George called on Thursday evening, explaining that the MRI showed leukemia in the marrow space in the spine. And that we should act as quickly as possible to move towards cord-blood transplant. We didn't have the time to figure out which type of chemo to use if we decided to go with the "containment strategy", as the leukemia is aggressive.
We will still have our bone-marrow biopsy done here in St. George on Monday. And I am assuming we will then hear from LDS on Wednesday with our plan. It is scary as we both just want to get it done and over with. Decision made, now lets go. But of course it just doesn't happen that way. I can only imagine the discussions and planning that are having to take place.
Jeremie is more positive about going through the transplant procedure. We both understand the risks and benefits completely. And it has been a blessing to have a month to discuss all the pros and cons with it. And even though I didn't love California or was very impressed, we learned a great deal. My biggest hope to have, is that Jeremie will have peace with the decisions that he has to make. I of course weigh in ;-) But it is so important to me that he discovers, and moves through this process with peace. When none of the options are great, it makes the decisions so difficult. And his biggest fear is somehow letting me or our kids down. Crazy isn't it? I explain, and hope that he can tell he isn't capable of letting us down. No matter his choice in how to proceed.
I'm starting to recognize triggers of extreme emotion lately. It is good, but difficult for me to share feedback without coming across as hurtful or mean. It is a horrible personality flaw! My latest trigger is the phrase "keep fighting". I know that it is said with love, and hope, and a sense that we can conquer. It also implies control, where none exists. It it is a dagger in my heart to hear these words (I know silly huh?).
I know that my sweet Jeremie struggles with the perception of him giving up if he doesn't make this choice or that choice. So when I hear or someone tells me to not give up the fight...what fight? There is not an entity we have control of. We aren't running a race and have to keep our feet moving. We have no control over the events of cancer and how it chooses to unfold. We have choices and consequences. We have love, faith, hope and commitment to our family and our beliefs. There is no fight. There is no such thing as giving up. There is existence and acceptance. I also understand that we live with this everyday. There isn't a moment that doesn't go by that leukemia isn't on our minds, and we get to see what it causes. We live with the miracles of cancer and the sadness.
I share these thoughts, as I hope that we can have sensitivity in this scary time. That we can focus on whatever unfolds. I love you all so much, the thoughts, love, prayers, support everything, everyone does and has continued to do...is amazing! And so appreciated. I don't know what we would do if we didn't know we had your love and prayers at this time. I can't tell you what it feels like...what a miracle!
Lots of Love,
Cori
Saturday, January 29, 2011
Tuesday, January 25, 2011
01/25/2011
We had our appointment at City of Hope yesterday.
First...I HATE CALIFORNIA! EWWWW... NEVER will I do that again! That was awful. I now know why everyone moves from there. YUCK!
K...moving on. We arrived at City of Hope. First impression...gross and very dirty. Want to hear another issue I have with the medical profession? Please bear in mind I work in this profession. ZERO CUSTOMER SERVICE. If you want your hospital to be considered the best of the best. Please hire someone to do the cleaning. Please do not make cancer patients pay for Valet parking. Please do not make them stand in line like cattle awaiting slaughter. Not a very good first impression! Next, I know you do this every day but it isn't every day that people are fighting for their lives and offering themselves up to you to poison them. Please give them the courtesy of explaining the process and again, having some customer service. Whew...I think I can move on now.
Next we met with an oncologist. His demeanor was that of a scared cat caught in the corner by a large dog. Oh quick, another issue I have...if you have a three inch size record that has been sent...please don't waste our precious time with you asking for a repeat of everything you should have read before you even saw us!!!!! Grrrr. So once we got to repeat our now infamous story that is in a very large chart, we finally were able to ask some questions.
"His" recommendation was "if" you are disease free, then go towards the transplant route. Knowing the details of the cord-blood transplant, his opinion was that this was a good route to go. "IF" Jeremie is disease free, then a cord-blood transplant would give him approximately 40-50% cure rate. "IF" the disease comes back within two years of transplant, then move to a containment strategy. "IF" we really wanted to see if the 9/10 donor bone marrow match was a preferable match, instead of cord-blood, then Jeremie needs to do another consolidation with Clofarabine (chemotherapy) ASAP with another bone-marrow biopsy and MRI of T & C spines. Meanwhile testing where the mismatch is on the donor bone marrow. Or "IF" Jeremie is disease free then going a head with the cord-blood transplant as soon as possible.
So we didn't receive any magical or Ah-Ha news (yes, we were secretly hoping). It definitely gives us more faith in LDS hospital. Jeremie feels better about possibly going down the transplant route. And we can stay in network with our insurance and move on with this process.
Called our oncologist office today and set up an appointment for a bone-marrow biopsy. Called and left a message to consult/conference call with LDS to see their thoughts and opinions. Now just waiting to move on. Jeremie isn't feeling the best. His back has started hurting again. We are hoping it has been because of all the time we have been in the car over the last two days. My gut says it isn't because of that. Course my gut is paranoid these days.
And by the way...since I'm on a rant today. I work for an agency that primarily works with medicaid-only clients. I know my clients don't have another choice in providers, I know they don't want to come in, and I know that it is a scary process. Everyone I work with is exceptional in the service and commitment they have to our population. Our buildings are clean, beautiful and welcoming. AND OUR CLIENTELE DOESN'T HAVE A CHOICE. So if you want people to come to your place of business by CHOICE, have some customer service and professionalism. Grrrr!
Can you tell when I'm stressed were I like to take my frustration out at??? ;-) I seriously need to exercise!
Well until we have more news....
Love,
Cori
First...I HATE CALIFORNIA! EWWWW... NEVER will I do that again! That was awful. I now know why everyone moves from there. YUCK!
K...moving on. We arrived at City of Hope. First impression...gross and very dirty. Want to hear another issue I have with the medical profession? Please bear in mind I work in this profession. ZERO CUSTOMER SERVICE. If you want your hospital to be considered the best of the best. Please hire someone to do the cleaning. Please do not make cancer patients pay for Valet parking. Please do not make them stand in line like cattle awaiting slaughter. Not a very good first impression! Next, I know you do this every day but it isn't every day that people are fighting for their lives and offering themselves up to you to poison them. Please give them the courtesy of explaining the process and again, having some customer service. Whew...I think I can move on now.
Next we met with an oncologist. His demeanor was that of a scared cat caught in the corner by a large dog. Oh quick, another issue I have...if you have a three inch size record that has been sent...please don't waste our precious time with you asking for a repeat of everything you should have read before you even saw us!!!!! Grrrr. So once we got to repeat our now infamous story that is in a very large chart, we finally were able to ask some questions.
"His" recommendation was "if" you are disease free, then go towards the transplant route. Knowing the details of the cord-blood transplant, his opinion was that this was a good route to go. "IF" Jeremie is disease free, then a cord-blood transplant would give him approximately 40-50% cure rate. "IF" the disease comes back within two years of transplant, then move to a containment strategy. "IF" we really wanted to see if the 9/10 donor bone marrow match was a preferable match, instead of cord-blood, then Jeremie needs to do another consolidation with Clofarabine (chemotherapy) ASAP with another bone-marrow biopsy and MRI of T & C spines. Meanwhile testing where the mismatch is on the donor bone marrow. Or "IF" Jeremie is disease free then going a head with the cord-blood transplant as soon as possible.
So we didn't receive any magical or Ah-Ha news (yes, we were secretly hoping). It definitely gives us more faith in LDS hospital. Jeremie feels better about possibly going down the transplant route. And we can stay in network with our insurance and move on with this process.
Called our oncologist office today and set up an appointment for a bone-marrow biopsy. Called and left a message to consult/conference call with LDS to see their thoughts and opinions. Now just waiting to move on. Jeremie isn't feeling the best. His back has started hurting again. We are hoping it has been because of all the time we have been in the car over the last two days. My gut says it isn't because of that. Course my gut is paranoid these days.
And by the way...since I'm on a rant today. I work for an agency that primarily works with medicaid-only clients. I know my clients don't have another choice in providers, I know they don't want to come in, and I know that it is a scary process. Everyone I work with is exceptional in the service and commitment they have to our population. Our buildings are clean, beautiful and welcoming. AND OUR CLIENTELE DOESN'T HAVE A CHOICE. So if you want people to come to your place of business by CHOICE, have some customer service and professionalism. Grrrr!
Can you tell when I'm stressed were I like to take my frustration out at??? ;-) I seriously need to exercise!
Well until we have more news....
Love,
Cori
Saturday, January 22, 2011
01/22/2011
I like La La Land...it has been such a nice place to live in the last few weeks. So very scared of the reality that is going to be smacking us in the face on Monday. Sort of happy that Jeremie hasn't been having 3 times per week blood work. Don't have to micro-obsess about every stinking number.
Jeremie continues to look as fabulous as ever. I think it takes people by surprise :-) And scares me to death. There are parts in my heart that just can't take it anymore. I just want to pretend this was all a joke, and we just get to continue living our lives. I can't tell you what a reprieve it has been the last month. Just to have our Daddy all to ourselves. I forgot what it had been like to get so annoyed with him ;-) hee hee hee.
Whew...having a teary day. Getting nervous and anxious about going to California. I've never been to California. So that will be another adventure we get to share together. The kids are going to be staying behind. PePe and MeMe (Jeremie's parents) are super busy at the shop and need Alex. Scarlett and the boys have school, so they are choosing to sleep at home. I just can't stand being away and separating myself from either my husband or my babies. It stinks having to choose all the time. Yet I feel so blessed that the kids are older, pretty self sufficient (which I'm not appreciating), and have proven time and time again how responsible they are. But I've also told the neighbors to make sure my house doesn't burn down ;-) I think that helps!
It is funny...but I'm having the hardest time right now. I think about the last several months and felt I could move through all the various emotions and fear. And now I'm panicking?? What is up with that?? I think it is because of the unknown...it is a theory anyway. So if you hear of stories of me needing my own psychiatric help, you will know why ;-)
Please, continue your prayers! Especially over the next several days...we believe in miracles :-)
Love,
Cori
Jeremie continues to look as fabulous as ever. I think it takes people by surprise :-) And scares me to death. There are parts in my heart that just can't take it anymore. I just want to pretend this was all a joke, and we just get to continue living our lives. I can't tell you what a reprieve it has been the last month. Just to have our Daddy all to ourselves. I forgot what it had been like to get so annoyed with him ;-) hee hee hee.
Whew...having a teary day. Getting nervous and anxious about going to California. I've never been to California. So that will be another adventure we get to share together. The kids are going to be staying behind. PePe and MeMe (Jeremie's parents) are super busy at the shop and need Alex. Scarlett and the boys have school, so they are choosing to sleep at home. I just can't stand being away and separating myself from either my husband or my babies. It stinks having to choose all the time. Yet I feel so blessed that the kids are older, pretty self sufficient (which I'm not appreciating), and have proven time and time again how responsible they are. But I've also told the neighbors to make sure my house doesn't burn down ;-) I think that helps!
It is funny...but I'm having the hardest time right now. I think about the last several months and felt I could move through all the various emotions and fear. And now I'm panicking?? What is up with that?? I think it is because of the unknown...it is a theory anyway. So if you hear of stories of me needing my own psychiatric help, you will know why ;-)
Please, continue your prayers! Especially over the next several days...we believe in miracles :-)
Love,
Cori
Monday, January 17, 2011
01/17/11
We heard from City of Hope hospital on Friday 1/14/11. We have our appointment scheduled for 1/24/11 :-)
With the very preliminary data that they have received so far, they are thinking a bone-marrow transplant would be best. But not cord-blood transplant. They are thinking (again with the very limited information they have) that the closest match (9 out of 10) would be better than a cord-blood transplant.
City of Hope is out of our network for our insurance. So we have a pretty big deductible, and then it doesn't cover a whole heck of a lot afterwards. And City of Hope already warned us that a bone marrow transplant through them would not be covered at all by our insurance.
So we are hoping that we can gleam a lot of information from them. Make a decision on the best treatment that will give Jeremie the longest, quality of life possible and keep our treatment in Utah.
Jeremie's numbers aren't the best at the moment. Platelets are falling, but still in a range that doesn't require transfusions. He is feeling pretty good. Of course he has periods of fatigue and exhaustion. But he is the little train that could ;-) He has been so busy putting our house together. It just looks amazing. I love seeing our dreams become reality.
He is quite difficult to sit on when he feels at all ok. His motorcycle was "finally" fixed. So he has been trying to spend as much time riding it. It makes my heart just swell. It used to make it bleed in plain fear, but I truly know now what this gives him.
Each day is a blessing. Each moment is treasured and we are loving our life. Thank you all for your continued love and prayers. Really we feel them :-)
Love,
Cori
With the very preliminary data that they have received so far, they are thinking a bone-marrow transplant would be best. But not cord-blood transplant. They are thinking (again with the very limited information they have) that the closest match (9 out of 10) would be better than a cord-blood transplant.
City of Hope is out of our network for our insurance. So we have a pretty big deductible, and then it doesn't cover a whole heck of a lot afterwards. And City of Hope already warned us that a bone marrow transplant through them would not be covered at all by our insurance.
So we are hoping that we can gleam a lot of information from them. Make a decision on the best treatment that will give Jeremie the longest, quality of life possible and keep our treatment in Utah.
Jeremie's numbers aren't the best at the moment. Platelets are falling, but still in a range that doesn't require transfusions. He is feeling pretty good. Of course he has periods of fatigue and exhaustion. But he is the little train that could ;-) He has been so busy putting our house together. It just looks amazing. I love seeing our dreams become reality.
He is quite difficult to sit on when he feels at all ok. His motorcycle was "finally" fixed. So he has been trying to spend as much time riding it. It makes my heart just swell. It used to make it bleed in plain fear, but I truly know now what this gives him.
Each day is a blessing. Each moment is treasured and we are loving our life. Thank you all for your continued love and prayers. Really we feel them :-)
Love,
Cori
Friday, January 7, 2011
01/07/2011
Drum Roll Please....
BIOPSY on C6 is NEGATIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Yup I'm screaming that! WOO HOO!!!!
Pretty yucky biopsy. Poor Jeremie, was a bit rough on him. But of course he made it through like the hero he is. Not everyone can say they have had a bone marrow biopsy on the cervical vertebrae!
A-M-A-Z-I-N-G!!!
So what exactly does this all mean? We really don't know. What we do know is that there isn't a metabolically active tumor or lesion on his cervical vertebrae. We know that that the sample that was taken was negative for leukemia. His blood work looks great and increasing to normal everyday. We know that right now...technically, he "looks" like he is in remission.
Our oncologist here is recommending a 2nd opinion at City of Hope Hospital in California. He sent the referral today and was speaking with them today. I'm working on seeing if and what our insurance will cover of the 2nd opinion.
So not a lot of "news" or plans to share, because we don't really have them. BUT...I feel that we are seeing and experiencing miracles :-)
It is so nice that my sweet spouse is feeling good. He hasn't felt this great in months. That, in and of its self is a miracle.
Thank you, THANK YOU, THANK YOU to ALL of YOU who pray for us everyday, and fast for us! WE FEEL IT! We know our prayers are heard, no matter the outcome of all of this. We know we are loved, and feel comforted everyday by the amazing blessing everyone is around us.
Love,
Cori
BIOPSY on C6 is NEGATIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Yup I'm screaming that! WOO HOO!!!!
Pretty yucky biopsy. Poor Jeremie, was a bit rough on him. But of course he made it through like the hero he is. Not everyone can say they have had a bone marrow biopsy on the cervical vertebrae!
A-M-A-Z-I-N-G!!!
So what exactly does this all mean? We really don't know. What we do know is that there isn't a metabolically active tumor or lesion on his cervical vertebrae. We know that that the sample that was taken was negative for leukemia. His blood work looks great and increasing to normal everyday. We know that right now...technically, he "looks" like he is in remission.
Our oncologist here is recommending a 2nd opinion at City of Hope Hospital in California. He sent the referral today and was speaking with them today. I'm working on seeing if and what our insurance will cover of the 2nd opinion.
So not a lot of "news" or plans to share, because we don't really have them. BUT...I feel that we are seeing and experiencing miracles :-)
It is so nice that my sweet spouse is feeling good. He hasn't felt this great in months. That, in and of its self is a miracle.
Thank you, THANK YOU, THANK YOU to ALL of YOU who pray for us everyday, and fast for us! WE FEEL IT! We know our prayers are heard, no matter the outcome of all of this. We know we are loved, and feel comforted everyday by the amazing blessing everyone is around us.
Love,
Cori
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