I am sorry that you are experiencing these hardships. I often wish that I could trade you places, but I would never be able to handle your situation the way you do. You are the strongest person I know. You are a rock, standing tough against the storm.
I know that somewhere inside your mountainous exterior there are some areas that are crumbling. And that is okay. You are allowed to feel weak and scared sometimes. I will be here whenever you need to let go.
Do you know the best thing about beat up rocks? Over time they develop a unique character that sets them apart from all other rocks. Those rocks are the special ones. They are the ones that you somehow notice among all of the other rocks and the dirt. Those rocks are the ones that you always seem to find and bring home to me .... to show off their beauty.
I love you.
Thursday, April 8, 2010
Monday, April 5, 2010
let it shine!
I'm back!!!
Wow! I know that it has been a LONG while. For the last several week's I have tried to go back to "normalcy," whatever that means... I did not want to think about the Leukemia part of our life, so I avoided it where I could. I have been meaning to write for weeks now. After a little encouragement from friends, family, and my amazing husband, today I am ready to share our recent news. I hope you have time because there is a lot of it.
After our last trip to the University of Michigan, we learned several things. Josh's brothers and his mother were not bone marrow matches. We are still waiting to hear the results on his father. The transplant team at U of M then searched the Be The Match National Bone Marrow Registry and found a couple 10 out of 10 matches. The first match, was a young male, which is the BEST you can have. He went to his first screening and for some reason was deferred. Something that he said made them think he would not pass all of the pre-tests. We have not heard anything else back about the next match. We continue to pray and pray that he or she is a good candidate, so we can have some sense of relief. Please pray with us!
U of M completed their testing on Joshua's blood. The reason that his CML cells are not responding to the medications is inconclusive. There is no explanation. Josh has always been a unique individual, so for some reason, we are not surprised! In re-testing Josh's genetics, they found a slight increase in CML cells. Our doctor's have advised us that we are still at a decent spot, but the risk has increased. We need to take action sooner than later.
We went back down to U of M on March 19th. That day was another hard day. We met with both Dr. Talpaz, the CML expert, and Dr. Choi, the transplant expert. Both of the doctors advised us that our next step is a bone marrow transplant. We need to be ready in 6-8 weeks. Heat filled my entire body. My heart was breaking.
As an over-analytical person, I started asking every question imaginable. This was not rationale! It was too soon. We are not prepared! What are the risks? What is the procedure? How long will Josh have to live in seclusion? And when I got to my final questions, You guys are the best, right? Everything is going to be okay??, my eyes filled with tears. I looked over at Josh and his were the same. There are no guaranties with a bone marrow transplant. They are very risky and every person is different. There is a 50% chance of survival in the first year. 50%. This is my husband we're talking about here, the love of my life. Oh God, please don't take him away from me. I felt numb the entire way home.
That night we called our best friends. And as always, they were there. We tell them often, but never enough, that we are truly blessed to have them in our lives.
One week later, Josh's mom called down to U of M to check in and see where they were at with things. They mentioned that Dr. Talpaz was attempting to squeeze Josh into a clinical (experimental) study for a drug that is showing good results. The chances were very slim and the waiting list was very long. But due to his outstanding reputation, he was able to pull some strings. Joshua walked up the driveway on that beautiful Friday evening and told me the news. He got in! Do you ever hear your body sing??? Well it is a lovely sound! Now, I must tell you, the chances of this drug working for Josh are not great. This drug is similar to the last two drugs he was on. But, a small chance is still a chance and WE WILL TAKE IT! He starts the drug on April 12th and we are enthusiastically hopeful! They are giving the new medication one month to show results. If there are no results, we move straight back to the transplant.
Now, let's go back to that sunny Friday. There is another reason why it was such a joyous day. Friday was exactly two weeks before the clinical trial begins. Two weeks is the exact amount of time that Josh needed to be off of his current medicine before it would be completely out of his system. When the drug is completely out of his system, we can safely freeze Josh's baby-making serum. Which means... WE can have BABIES someday!!! Praise the Lord for miracles!
At this point, I am not going to go into all of the complicated details of transplant. We will cross that bridge IF we get there. For now, let's pray that we don't! We have an action packed year of activities planned and we don't want to miss a thing!
Thank you for continuing to check in! Thank you for continuing to pray! We love you and your support means the world.
As for me, I am going to focus on keeping my chin up and my spirit high! There always seems to be a flicker of Light at the end of the tunnel!
God's blessings!
Heidi
Wow! I know that it has been a LONG while. For the last several week's I have tried to go back to "normalcy," whatever that means... I did not want to think about the Leukemia part of our life, so I avoided it where I could. I have been meaning to write for weeks now. After a little encouragement from friends, family, and my amazing husband, today I am ready to share our recent news. I hope you have time because there is a lot of it.
After our last trip to the University of Michigan, we learned several things. Josh's brothers and his mother were not bone marrow matches. We are still waiting to hear the results on his father. The transplant team at U of M then searched the Be The Match National Bone Marrow Registry and found a couple 10 out of 10 matches. The first match, was a young male, which is the BEST you can have. He went to his first screening and for some reason was deferred. Something that he said made them think he would not pass all of the pre-tests. We have not heard anything else back about the next match. We continue to pray and pray that he or she is a good candidate, so we can have some sense of relief. Please pray with us!
U of M completed their testing on Joshua's blood. The reason that his CML cells are not responding to the medications is inconclusive. There is no explanation. Josh has always been a unique individual, so for some reason, we are not surprised! In re-testing Josh's genetics, they found a slight increase in CML cells. Our doctor's have advised us that we are still at a decent spot, but the risk has increased. We need to take action sooner than later.
We went back down to U of M on March 19th. That day was another hard day. We met with both Dr. Talpaz, the CML expert, and Dr. Choi, the transplant expert. Both of the doctors advised us that our next step is a bone marrow transplant. We need to be ready in 6-8 weeks. Heat filled my entire body. My heart was breaking.
As an over-analytical person, I started asking every question imaginable. This was not rationale! It was too soon. We are not prepared! What are the risks? What is the procedure? How long will Josh have to live in seclusion? And when I got to my final questions, You guys are the best, right? Everything is going to be okay??, my eyes filled with tears. I looked over at Josh and his were the same. There are no guaranties with a bone marrow transplant. They are very risky and every person is different. There is a 50% chance of survival in the first year. 50%. This is my husband we're talking about here, the love of my life. Oh God, please don't take him away from me. I felt numb the entire way home.
That night we called our best friends. And as always, they were there. We tell them often, but never enough, that we are truly blessed to have them in our lives.
One week later, Josh's mom called down to U of M to check in and see where they were at with things. They mentioned that Dr. Talpaz was attempting to squeeze Josh into a clinical (experimental) study for a drug that is showing good results. The chances were very slim and the waiting list was very long. But due to his outstanding reputation, he was able to pull some strings. Joshua walked up the driveway on that beautiful Friday evening and told me the news. He got in! Do you ever hear your body sing??? Well it is a lovely sound! Now, I must tell you, the chances of this drug working for Josh are not great. This drug is similar to the last two drugs he was on. But, a small chance is still a chance and WE WILL TAKE IT! He starts the drug on April 12th and we are enthusiastically hopeful! They are giving the new medication one month to show results. If there are no results, we move straight back to the transplant.
Now, let's go back to that sunny Friday. There is another reason why it was such a joyous day. Friday was exactly two weeks before the clinical trial begins. Two weeks is the exact amount of time that Josh needed to be off of his current medicine before it would be completely out of his system. When the drug is completely out of his system, we can safely freeze Josh's baby-making serum. Which means... WE can have BABIES someday!!! Praise the Lord for miracles!
At this point, I am not going to go into all of the complicated details of transplant. We will cross that bridge IF we get there. For now, let's pray that we don't! We have an action packed year of activities planned and we don't want to miss a thing!
Thank you for continuing to check in! Thank you for continuing to pray! We love you and your support means the world.
As for me, I am going to focus on keeping my chin up and my spirit high! There always seems to be a flicker of Light at the end of the tunnel!
God's blessings!
Heidi
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