01/29/2011

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