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
Tuesday, February 16, 2010
deliver us from evil.
From the time we got home from U of M on Thursday, I found myself playing a never-ending game of "what if." I tried to stop myself, but I couldn't. I couldn't relax. I felt uneasy. I prayed for direction and peace. Then finally, it was Sunday. Church!
Sometime in my transition to adulthood, or maybe in my commitment to grow in faith, I have acknowledged that church is not effective by just going through the motions. It's about listening, really listening, and actually comprehending what is being read, preached, and prayed. Instead of blindly singing the songs in the hymnal, I now READ the words. What a concept! We sang a song on Sunday that I have sang many times since I was little. But when I sang it this time, it was new. It was perfect and exactly what I needed to hear! The song was, What a Friend We Have in Jesus. Whether you are familiar with the song or you've never heard it, I encourage you to google the lyrics.... and LET GO!
It seems as though no matter how hard we pray, or read devotions, or go to church, somehow negative thoughts and worries seem to find their way in. Satan knows our weaknesses. And when we are weak, he wants to bring us down, and turn us away from the Lord. So, we will have to pray harder! Lord, lead us not into temptation, but deliver us from Evil.
Sometime in my transition to adulthood, or maybe in my commitment to grow in faith, I have acknowledged that church is not effective by just going through the motions. It's about listening, really listening, and actually comprehending what is being read, preached, and prayed. Instead of blindly singing the songs in the hymnal, I now READ the words. What a concept! We sang a song on Sunday that I have sang many times since I was little. But when I sang it this time, it was new. It was perfect and exactly what I needed to hear! The song was, What a Friend We Have in Jesus. Whether you are familiar with the song or you've never heard it, I encourage you to google the lyrics.... and LET GO!
It seems as though no matter how hard we pray, or read devotions, or go to church, somehow negative thoughts and worries seem to find their way in. Satan knows our weaknesses. And when we are weak, he wants to bring us down, and turn us away from the Lord. So, we will have to pray harder! Lord, lead us not into temptation, but deliver us from Evil.
fast forward.
In order to tell you about our recent trip to the University of Michigan as promised, I need to fast forward from September of 2008 (Josh's diagnosis) to the present. I'm hoping I can do this in one clear, concise entry. Well, one clear entry anyway.
first six months.
In my last entry I mentioned "medical advances" that revolutionized the treatment of CML patients. One of the advances is Gleevec. First approved in 2001, Gleevec is an oral pill that effectively treats about 80% of CML cases. While the drug does not "cure" the disease, it targets and turns off the specific proteins in the cancer cells that cause the cancer cells to grow and multiply.
We were thrilled to hear about Gleevec and its success! How wonderful that a drug could treat the cancer and allow Josh to go on with his normal life!
Josh immediately began the treatment and his blood counts went back to a near-normal level. For awhile. Within six months, his white blood counts started rising again and spiked to around 100,000. Josh had his second bone marrow biopsy and some further testing done. We were told that Josh's cancer cells were rejecting the medication. We needed to try something else.
try, try again.
Next up to bat, Sprycel. Discovered in 2006, this extremely powerful pill can only be prescribed to patients who have already tried Gleevec. Its intended results are similar.
Josh's first set of tests came back great. After nearly six months his blood counts were all stable (step 1) and his cytogenetic "chromosome" response (step 2) was at a good spot. Dr. Zakem told us that as long as his cytogenetic response continued to improve, we would be on the track for success!
A few months later, we went back to re-test the cytogenetic response and Josh had his third grueling bone marrow biopsy. Unfortunately, Josh's results showed that his cytogenetic response did not improve. While Josh continued to maintain his normal blood counts (step 1), his "bad" chromosomes (step 2) were not decreasing.
Dr. Zakem advised us that it was time to head down to the University of Michigan Cancer Center to meet with a CML Specialist to be evaluated.
our trip to the big house.
What a day. 2 hours down, 5 hours at the hospital, and 2 hours back. Thankfully, we swung into IKEA on the way home, so we could bring back some fun new furniture along with our ENDLESS supply of new information.
Some things we learned:
*** Dr. Talpaz is a CML extraordinaire! He was part of the initial study and prescription of both Gleevec and Sprycel. He has worked with CML for 30 years. 30 years!!! He moved from MD Anderson in TX to the University of Michigan about four years ago where he is now able to work with Josh. He is a straight shooter and a genius... two things I love.
*** We were transferred to U of M for two reasons. One, they are the best - they have the best doctors, the best knowledge, and a collaborative team. Two, they are the only facility in Michigan that can oversee clinical (experimental) trials if something looks promising for Josh down the road.
*** Josh's current response is okay, but it is not Optimal. Our goal is to eliminate the level of risk and protect Josh from the progression of his disease.
*** I am a talented note taker. Both speedy and precise. This was pointed out by both Dr. Talpaz and my husband. Although this is not relevant to CML directly, it is noteworthy! ;)
*** Josh provided several (and by that I mean 10) vials of blood for more testing. We need to know... Why isn't Josh responding to the medication? Is the disease moving and if so, in what direction? Are we happy or concerned? What is our next step?
*** It is time to become familiar with bone marrow transplant. Although this would be a last step measure, it is never too early to be prepared. Currently, Josh's two brothers are being tested to determine if they are a match. They each have a 25% of being a match. Please go to the Be The Match link on the left of the blog to find out how you can help!
*** Finally, we were told that we are not allowed to have a baby at this time. It is not safe to conceive a child while Josh is on his powerful medication. This is something we were not prepared to hear.
Obviously, we still have a many unanswered questions. And we have some concerns. While we do not know yet what God has in store for us, we do know is that God is in control.
We ask for your prayers - for strength, for healing, and for wisdom for our doctors.
first six months.
In my last entry I mentioned "medical advances" that revolutionized the treatment of CML patients. One of the advances is Gleevec. First approved in 2001, Gleevec is an oral pill that effectively treats about 80% of CML cases. While the drug does not "cure" the disease, it targets and turns off the specific proteins in the cancer cells that cause the cancer cells to grow and multiply.
We were thrilled to hear about Gleevec and its success! How wonderful that a drug could treat the cancer and allow Josh to go on with his normal life!
Josh immediately began the treatment and his blood counts went back to a near-normal level. For awhile. Within six months, his white blood counts started rising again and spiked to around 100,000. Josh had his second bone marrow biopsy and some further testing done. We were told that Josh's cancer cells were rejecting the medication. We needed to try something else.
try, try again.
Next up to bat, Sprycel. Discovered in 2006, this extremely powerful pill can only be prescribed to patients who have already tried Gleevec. Its intended results are similar.
Josh's first set of tests came back great. After nearly six months his blood counts were all stable (step 1) and his cytogenetic "chromosome" response (step 2) was at a good spot. Dr. Zakem told us that as long as his cytogenetic response continued to improve, we would be on the track for success!
A few months later, we went back to re-test the cytogenetic response and Josh had his third grueling bone marrow biopsy. Unfortunately, Josh's results showed that his cytogenetic response did not improve. While Josh continued to maintain his normal blood counts (step 1), his "bad" chromosomes (step 2) were not decreasing.
Dr. Zakem advised us that it was time to head down to the University of Michigan Cancer Center to meet with a CML Specialist to be evaluated.
our trip to the big house.
What a day. 2 hours down, 5 hours at the hospital, and 2 hours back. Thankfully, we swung into IKEA on the way home, so we could bring back some fun new furniture along with our ENDLESS supply of new information.
Some things we learned:
*** Dr. Talpaz is a CML extraordinaire! He was part of the initial study and prescription of both Gleevec and Sprycel. He has worked with CML for 30 years. 30 years!!! He moved from MD Anderson in TX to the University of Michigan about four years ago where he is now able to work with Josh. He is a straight shooter and a genius... two things I love.
*** We were transferred to U of M for two reasons. One, they are the best - they have the best doctors, the best knowledge, and a collaborative team. Two, they are the only facility in Michigan that can oversee clinical (experimental) trials if something looks promising for Josh down the road.
*** Josh's current response is okay, but it is not Optimal. Our goal is to eliminate the level of risk and protect Josh from the progression of his disease.
*** I am a talented note taker. Both speedy and precise. This was pointed out by both Dr. Talpaz and my husband. Although this is not relevant to CML directly, it is noteworthy! ;)
*** Josh provided several (and by that I mean 10) vials of blood for more testing. We need to know... Why isn't Josh responding to the medication? Is the disease moving and if so, in what direction? Are we happy or concerned? What is our next step?
*** It is time to become familiar with bone marrow transplant. Although this would be a last step measure, it is never too early to be prepared. Currently, Josh's two brothers are being tested to determine if they are a match. They each have a 25% of being a match. Please go to the Be The Match link on the left of the blog to find out how you can help!
*** Finally, we were told that we are not allowed to have a baby at this time. It is not safe to conceive a child while Josh is on his powerful medication. This is something we were not prepared to hear.
Obviously, we still have a many unanswered questions. And we have some concerns. While we do not know yet what God has in store for us, we do know is that God is in control.
We ask for your prayers - for strength, for healing, and for wisdom for our doctors.
Saturday, February 13, 2010
chronic. mylogenous. leukemia.
We never knew the meaning of those three words until September 2008. That was the beginning.
September 3. Josh called me. I had just pulled into the parking lot at work. He said that he was in severe pain and I needed to come pick him up. When I arrived, a close friend told me that he'd never seen Josh like this. Something was wrong.
We went to the family doctor who suggested it could be kidney stones. We were sent to Metro Hospital for a CAT scan and some blood work. I remember Josh laying in the hospital bed. We were laughing, being silly, picking out names for our future children. Then, the doctor came in and sat down. The pain that Josh was experiencing was due to an enlarged spleen. His white blood count was 330,000 versus a normal count of 6-10,000. His spleen was working overtime. There were no kidney stones, Josh had Leukemia.
We were paralyzed. I think time may have stopped. I don't think we will ever forget that moment, that room, those words.
They directed us go to the Metro Cancer Center to meet with Dr. Zakem and staff. Fortunately, in our world that was spinning out of control, they grounded us. They told us that there were many recent medical advances that help control certain forms of Leukemia. We had hope!
Josh got his first bone marrow biopsy that day. That was the first and the last time I will ever watch the procedure. Josh was a loopy from the painkillers and decided to share a few choice words. Meanwhile, I nearly fainted.
September 5. We went back to see Dr. Zakem and it was confirmed. Josh had Chronic Mylogenous Leukemia (CML). And so we began the fight.
What is CML?
Leukemia is cancer of the blood and bone marrow. CML is cancer that causes the bone marrow to make too many white blood cells. Many of these white blood cells stop growing and do not function properly. Overtime, they build up and crowd out healthy red blood cells, white blood cells, and platelets. It is called 'chronic' leukemia because it progresses slowly. - CML Alliance
September 3. Josh called me. I had just pulled into the parking lot at work. He said that he was in severe pain and I needed to come pick him up. When I arrived, a close friend told me that he'd never seen Josh like this. Something was wrong.
We went to the family doctor who suggested it could be kidney stones. We were sent to Metro Hospital for a CAT scan and some blood work. I remember Josh laying in the hospital bed. We were laughing, being silly, picking out names for our future children. Then, the doctor came in and sat down. The pain that Josh was experiencing was due to an enlarged spleen. His white blood count was 330,000 versus a normal count of 6-10,000. His spleen was working overtime. There were no kidney stones, Josh had Leukemia.
We were paralyzed. I think time may have stopped. I don't think we will ever forget that moment, that room, those words.
They directed us go to the Metro Cancer Center to meet with Dr. Zakem and staff. Fortunately, in our world that was spinning out of control, they grounded us. They told us that there were many recent medical advances that help control certain forms of Leukemia. We had hope!
Josh got his first bone marrow biopsy that day. That was the first and the last time I will ever watch the procedure. Josh was a loopy from the painkillers and decided to share a few choice words. Meanwhile, I nearly fainted.
September 5. We went back to see Dr. Zakem and it was confirmed. Josh had Chronic Mylogenous Leukemia (CML). And so we began the fight.
What is CML?
Leukemia is cancer of the blood and bone marrow. CML is cancer that causes the bone marrow to make too many white blood cells. Many of these white blood cells stop growing and do not function properly. Overtime, they build up and crowd out healthy red blood cells, white blood cells, and platelets. It is called 'chronic' leukemia because it progresses slowly. - CML Alliance
backwoods boy and a fairytale princess.
Those of you that know me well, know that I am far from a "fairytale princess." But these words are lyrics from a song that represents our beginning. It's our background, our story, and our love. It's one of those songs... the kind where I look over at Josh and he has the same undeniable grin on his face that I have on mine. If you listen to it, you'll understand.
Our journey began when I was a junior in high school. Josh was 20. It was May of 2001 and we met each other driving down the road (Yes, I'm serious). I had never dated anyone at the time. Josh had. Our relationship started slowly because I was "scared" of boys, but Josh was a charmer, a very persistant charmer. I fell hard.
We had struggles along the way like any young couple. I went away for college. There were various break-ups. No matter what happened or how bad things got, we always seemed to find our way back to each other. On January 9, 2009, Josh asked me to marry him. Our wedding day was ten months later, November 7th, 2009. It was the happiest day of my life.
I have been contemplating the idea of a blog for quite sometime. After talking to Josh, we agreed this will be a great outlet for both our joys and our struggles. Please be patient with me as I get started. I am still trying to figure out where to begin!
God's Blessings,
Heidi
Our journey began when I was a junior in high school. Josh was 20. It was May of 2001 and we met each other driving down the road (Yes, I'm serious). I had never dated anyone at the time. Josh had. Our relationship started slowly because I was "scared" of boys, but Josh was a charmer, a very persistant charmer. I fell hard.
We had struggles along the way like any young couple. I went away for college. There were various break-ups. No matter what happened or how bad things got, we always seemed to find our way back to each other. On January 9, 2009, Josh asked me to marry him. Our wedding day was ten months later, November 7th, 2009. It was the happiest day of my life.
I have been contemplating the idea of a blog for quite sometime. After talking to Josh, we agreed this will be a great outlet for both our joys and our struggles. Please be patient with me as I get started. I am still trying to figure out where to begin!
God's Blessings,
Heidi
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