Please donate if you can and spread the word! The goal for Team "Mark 4 Lee" is to raise $1000 or more!
Monday, October 13, 2014
LIGHT THE NIGHT
Mark will be participating in the "LIGHT THE NIGHT WALK" on the 25th of this month to benefit the Leukemia and Lymphoma Society! Mark will walk along side his friend, Jeff as they represent Team "Mark 4 Lee" - they will be walking to honor of our friend Leland Johnson with a yellow lantern and also to celebrate Mark's own fight with a white lantern!
Please donate if you can and spread the word! The goal for Team "Mark 4 Lee" is to raise $1000 or more!
Please donate if you can and spread the word! The goal for Team "Mark 4 Lee" is to raise $1000 or more!
Sunday, September 21, 2014
Transplant Birthday
It is OFFICIAL - I am a bad blogger! I have failed to keep my promise to keep you up-to-date on Mark and our family. I will try to be better and to catch you up on our wonderful summer but apparently there are no guarantees with me and blogging these days. Hang in there and feel free to ask, write or call for an update. We love to share our "adventure" with others and always ready to share how much God is guiding and blessing us!
I'll start with today. Then I will update you a bit on our life since my last post in April in an UPDATE post coming in the next week or so!
Tonight - this very hour - marks the exact time 2 years ago that Mark started his Bone Marrow Transplant. It took about 3 hours and continued into tomorrow. It was a great night full of different emotions. You can read this post A VERY FULL WEEK to remember where we were at, just days before the transplant. When I read these words it seem SO long ago. Our road has been so long and hard it feels much longer than 2 years.
I am still so very grateful for the gift of LIFE we were all given that night. Those cells were the first step in this long road! Without that 1 donor in 19 million - I don't know what we would have done. All evidence says we would not have a daddy, husband, friend, brother, uncle or son with us today. I will forever be grateful for our donor. We hope to meet him soon - if only virtually or on Skype as he may still be living in Great Brittan. Since it was an international donation we had to wait until we reached the 2 year mark to make contact - we hope to get the go-ahead soon. Please pray that the donor is willing to "meet" us as I have been waiting SO long to tell him how thankful I am for him! I have prayed for this man so often and want to know who he is. I want him to SEE what his sacrifice has blessed us with. I'll keep you updated!
As I think back over the last 2 years I have 2 very different emotions. The first: pain/heartache. The treatment, recovery, collateral damage and GVHD were so hard to walk through. They tested (and continue to test) our love, our relationship and our faith. They challenged us like nothing before. They broke us down and also somehow strengthen us. Maybe these 2+ years didn't so much strengthen us but proved to us - just how strong we are when we rely on Christ! The Lord has truly blessed us. That brings me to the second emotion: Gratitude. I am so grateful for an odds-beating, strong, surviving husband. I am grateful for our donor, for our friends/family/support, and for the lessons along the way. We call them "silver linings." They are the perspectives, lessons or opportunities that we would not have had without leukemia, transplant and battling to survive. Sometimes they are hard to explain but they are there all the same.
Looking forward, I am excited for the opportunity to make memories with 4! When we struggle and doubt we can keep going, we remember that we are being given time that MANY do not get. That we can make memories with 4! A mom, 2 boys and a DAD! A gift we don't forget to give thanks for. One that we do not take for granted. As I type this I weep for those we know who did not get more time, for the loved ones making memories with 1 less. I pray for them often and use the sadness to remind me to be thankful for what I have - to rock what we've got and to never give up hope.
There are still things we struggle with emotionally, mentally and physically - but things are getting better all the time. Mark is STRONG. He is doing really well. This July he went back to work part time! This was a huge step for him and our family. God provided the absolutely perfect opportunity for Mark. We couldn't have designed anything better ourselves. Thank you Jesus! He is enjoying it and getting into the rhythm of it all. I am SO proud of him.
After sending his labs and some test to Seattle - they informed us that we do not need to go back for a 2-year evaluation. He is too healthy to warrant the tests and stress. They will continue to monitor him, and he will, of course, still continue seeing his oncologist here in Spokane - but so far so good. We have a taper schedule for his immune suppression drug. It will take about 18 months to complete the taper if all goes well - but when complete he will be able to get off nearly all his meds and we will be able to take a deep breath of relief. It is a really good indicator of "long-term survival" to completely taper off of the immune suppression drugs. We will celebrate that day for sure!
As we continue to walk in faith, we are thankful to be together tonight and excited to be making future plans - believing that we will be together and healthy to complete them. Happy "Birthday" Mark! I love you and am so glad you are here! Feel the "love"tonight as I am SURE I am not the only one that feels this way! Keep fighting, keep working hard to get back all that this "adventure" has stolen from you and us! We can do it baby! Here's to many more years of rocking what we've got and giving God all the glory!
Stay tuned - this Adventure isn't over yet... in fact it seems to finally be getting good again!! :)
I'll start with today. Then I will update you a bit on our life since my last post in April in an UPDATE post coming in the next week or so!
Tonight - this very hour - marks the exact time 2 years ago that Mark started his Bone Marrow Transplant. It took about 3 hours and continued into tomorrow. It was a great night full of different emotions. You can read this post A VERY FULL WEEK to remember where we were at, just days before the transplant. When I read these words it seem SO long ago. Our road has been so long and hard it feels much longer than 2 years.
I am still so very grateful for the gift of LIFE we were all given that night. Those cells were the first step in this long road! Without that 1 donor in 19 million - I don't know what we would have done. All evidence says we would not have a daddy, husband, friend, brother, uncle or son with us today. I will forever be grateful for our donor. We hope to meet him soon - if only virtually or on Skype as he may still be living in Great Brittan. Since it was an international donation we had to wait until we reached the 2 year mark to make contact - we hope to get the go-ahead soon. Please pray that the donor is willing to "meet" us as I have been waiting SO long to tell him how thankful I am for him! I have prayed for this man so often and want to know who he is. I want him to SEE what his sacrifice has blessed us with. I'll keep you updated!
As I think back over the last 2 years I have 2 very different emotions. The first: pain/heartache. The treatment, recovery, collateral damage and GVHD were so hard to walk through. They tested (and continue to test) our love, our relationship and our faith. They challenged us like nothing before. They broke us down and also somehow strengthen us. Maybe these 2+ years didn't so much strengthen us but proved to us - just how strong we are when we rely on Christ! The Lord has truly blessed us. That brings me to the second emotion: Gratitude. I am so grateful for an odds-beating, strong, surviving husband. I am grateful for our donor, for our friends/family/support, and for the lessons along the way. We call them "silver linings." They are the perspectives, lessons or opportunities that we would not have had without leukemia, transplant and battling to survive. Sometimes they are hard to explain but they are there all the same.
Looking forward, I am excited for the opportunity to make memories with 4! When we struggle and doubt we can keep going, we remember that we are being given time that MANY do not get. That we can make memories with 4! A mom, 2 boys and a DAD! A gift we don't forget to give thanks for. One that we do not take for granted. As I type this I weep for those we know who did not get more time, for the loved ones making memories with 1 less. I pray for them often and use the sadness to remind me to be thankful for what I have - to rock what we've got and to never give up hope.
There are still things we struggle with emotionally, mentally and physically - but things are getting better all the time. Mark is STRONG. He is doing really well. This July he went back to work part time! This was a huge step for him and our family. God provided the absolutely perfect opportunity for Mark. We couldn't have designed anything better ourselves. Thank you Jesus! He is enjoying it and getting into the rhythm of it all. I am SO proud of him.
After sending his labs and some test to Seattle - they informed us that we do not need to go back for a 2-year evaluation. He is too healthy to warrant the tests and stress. They will continue to monitor him, and he will, of course, still continue seeing his oncologist here in Spokane - but so far so good. We have a taper schedule for his immune suppression drug. It will take about 18 months to complete the taper if all goes well - but when complete he will be able to get off nearly all his meds and we will be able to take a deep breath of relief. It is a really good indicator of "long-term survival" to completely taper off of the immune suppression drugs. We will celebrate that day for sure!
As we continue to walk in faith, we are thankful to be together tonight and excited to be making future plans - believing that we will be together and healthy to complete them. Happy "Birthday" Mark! I love you and am so glad you are here! Feel the "love"tonight as I am SURE I am not the only one that feels this way! Keep fighting, keep working hard to get back all that this "adventure" has stolen from you and us! We can do it baby! Here's to many more years of rocking what we've got and giving God all the glory!
Stay tuned - this Adventure isn't over yet... in fact it seems to finally be getting good again!! :)
Monday, April 07, 2014
Catch up @ the 2 YEAR MARK
It has been a long time since I have written. I would like to say it is becuase I am BUSY - but that isn't a good reason. I would like to say it is because there hasn't been enough to write about - but that isn't true. I think the truth is that this life Mark and I have been given is hard and takes work. We have to live through things we don't want to. Things that are no fun to "blog" about. But at the same time we have times of great joy and overwhelming blessing. Those also can be hard to blog about in the shadow of great sorrow. We have been concentrating on living..... we have been reaching hard for the goal of making each day COUNT.
CATCH UP -
November and Thanksgiving came and went. Full of family and memories and really pretty good health for Mark (considering). To be all together with MARK'S WHOLE family around one table was a true blessing!
December was filled with more family memories and wonderful winter things. Christmas together with my family was a welcomed gift over last year! In our home, together, safe, joyful and mostly healthy! WONDERFUL!
January started out strong. Busy at work, boys back to school from Christmas break. New years resolutions, organization and goal setting.
It all came to a GRINDING halt when we got the news that our dear friend, Leland's cancer was back and so was the GVHD! They had fought so HARD and for SO long right beside us that is was devastating. They were so far away in Seattle.... it was rough. They were brave and strong and made the difficult decision to embrace the choice to switch to only comfort care and made a trip with their 3-year-old daughter to Disneyland to see the princesses. He truly powered through and after returning to Seattle one last time he MADE IT HOME. We were hoping for weeks to visit and "say goodbye" We only got 2 days and a few hours with him in the end. It was his wish, their plan together and Gods gift for Lee to be surrounded by friends and family in his own home to bravely, gracefully and peacefully take his final breaths.
The days and weeks that followed were a blur of sorrow mixed with relief. His fight was over. My dear friend and fellow cancer/transplant wife-warrior was also done with her cancer journey. She was done.... but she was alone. She was so brave and strong. She was also broken and still is. In some ways she always will be. Her faith is unwavering and she is COMMITTED to living joyfully and fully because God is with her, here baby girl needs her to and Lee wouldn't be happy with anything less! Remember her in your prayers. Her road is tough.
To quote an earlier post about another dear friends passing. The words apply:
"She is living my worst nightmare - one I have had to image living myself. She is often in my prayers and I am encouraged by her strength and unwavering faith... It has reminded Mark and I to LIVE. To not take for granted the time we have, that life is a gift and it is about serving others."
February was clouded with Lee's passing. It was hard to grasp. It was hard to fully process. I was numb and thankful for Mark's health all at the same time in a crazy bag of mixed emotions. After January my group of fellow transplant/cancer wives was now filled with beautiful, brave and faithful widows - and I was oh so sad and confused at the same time. My Mark was here and their husbands were not. God and I had many talks the weeks after Lee passed about what was fair and what I don't understand about his grace and the challenges of this life. I am working on peace - I'm working through the whys... but one thing I know for sure is I have Mark and each day need to love on him and remember to live-it-up with him!
By mid month we headed to San Diego on a vacation that was planned months before. It was wonderful family time. Best vacation ever! We are blessed! God is good. It was a fun-filled, schedule-packed 7 days that couldn't have been better. It will forever be in all 4 of our memory banks as a time when we were happy, healthy and blessed to be together.
March has been busy. Mark continues to feel better and continues to taper off his steroids. With little to no GVHD. Another past blog post quote, that still holds true:
"There are less days when I am fearful of the "odds" and "likely possible outcomes" always looking for "marked improvement" and more days of hope-filled, God given optimism and dreams of our future together -- and boy, does it feel GOOD!"
That brings us to April and to this night .... the eve of his 2 year leukemia anniversary.
As I look back I found this entry from last year:
Who knew our lives were changing forever?
"I have wished many times that I could go back to the 7th of April 2012 and take a snap shot of my perspective of the future. A snip-it of my outlook of our future without the fear and doubts I now have. Fears and doubts that no matter how hard I try I cannot make go away completely. I know that this is a dumb wish. We can't go back. Things happen in our lives and they mold us and make us who we will be tomorrow. There is no hope in looking back. Hope is for today and for our future. But it would be nice sometimes to just go back to a time when I was ignorant to the fear, damage and heartache cancer brings into your life and never leaves even when the tests show no 'blast cells'."
2 YEARS IS A LONG TIME!
More time that I thought we would have together.
It is a long time to struggle and pray for a different future.
It is a long time to focus on taking it one day at a time.
YET - it isn't long enough time to forget the pain of that first week - after diagnosis. I still feel the pain in my stomach and the wave of grief that comes over me brings tears to my eyes. Funny how time passes, you press forward, struggle, grow, succeed, morn, thrive and live with faith but somethings will forever be burned into your memory. We have come a long way in 2 years and I am optimistic as we start another year as a Cancer SURVIVING family! Mark is leading the way as our anchor, our hope, our daddy and love! We are strong, joyful and looking with faith into the future. We are going after our LIFE! We are rocking what we've got and never forgetting GOD is GOOD and we are THANKFUL!
From last years post:
Year 1 - we were surviving.
"I decided I would give Leukemia one year of our life to mess up.... survive one year. We needed a plan and I knew it would be a long hike. I committed that I would do my best to stay positive and just keep holding on for one year - then I wanted progress and freedom from it all."
Year 2 - new goal: living with purpose.
Saying "YES" as much as I can, focus on experiencing life. We are going to check off our list things we want to do before our kids are grown and we are "old." (a relative term for us now) We are focusing on living - not surviving. It will be a choice we have to make each day, knowing the Holy Spirit is guiding and upholding us each step of the journey!
Year 3 - living for the LONG TERM.
It is time to face the facts people: Mark is reaching goals and beating the odds! Truly beating them. The doctors were honest about our chances of long-term survival and when others around us are proving those horrible odds to be true - Mark is BEATING THEM. He is getting stronger all the time. We still have challenges. There are things to overcome and wade through but we are doing it with our eyes fixed on a target that isn't just one day at a time or even one week. It is 2, 3, even 6 months ahead. It is:
Strength for today and bright hope for tomorrow!
Don't forget to be thankful this week. Take time to be silly, be happy. Give those things of this life that bring you down - only a small part of your time and attention. Fill the rest of your mind and heart with the "good" this life has to offer. Love on your family. Forgive those who bring you grief. Breathe deep and be generous. Play to your strengths and rock what you've got!
We decide who we will be each day: Bitter, angry, compromised and defeated by life's challenges - or filled with the joy from above, choosing to do what we know we should, even though we don't want to - knowing that the Lord will carry us and the result of our choice will lead us to a more rich life.
CATCH UP -
November and Thanksgiving came and went. Full of family and memories and really pretty good health for Mark (considering). To be all together with MARK'S WHOLE family around one table was a true blessing!
December was filled with more family memories and wonderful winter things. Christmas together with my family was a welcomed gift over last year! In our home, together, safe, joyful and mostly healthy! WONDERFUL!
January started out strong. Busy at work, boys back to school from Christmas break. New years resolutions, organization and goal setting.
It all came to a GRINDING halt when we got the news that our dear friend, Leland's cancer was back and so was the GVHD! They had fought so HARD and for SO long right beside us that is was devastating. They were so far away in Seattle.... it was rough. They were brave and strong and made the difficult decision to embrace the choice to switch to only comfort care and made a trip with their 3-year-old daughter to Disneyland to see the princesses. He truly powered through and after returning to Seattle one last time he MADE IT HOME. We were hoping for weeks to visit and "say goodbye" We only got 2 days and a few hours with him in the end. It was his wish, their plan together and Gods gift for Lee to be surrounded by friends and family in his own home to bravely, gracefully and peacefully take his final breaths.
The days and weeks that followed were a blur of sorrow mixed with relief. His fight was over. My dear friend and fellow cancer/transplant wife-warrior was also done with her cancer journey. She was done.... but she was alone. She was so brave and strong. She was also broken and still is. In some ways she always will be. Her faith is unwavering and she is COMMITTED to living joyfully and fully because God is with her, here baby girl needs her to and Lee wouldn't be happy with anything less! Remember her in your prayers. Her road is tough.
To quote an earlier post about another dear friends passing. The words apply:
"She is living my worst nightmare - one I have had to image living myself. She is often in my prayers and I am encouraged by her strength and unwavering faith... It has reminded Mark and I to LIVE. To not take for granted the time we have, that life is a gift and it is about serving others."
February was clouded with Lee's passing. It was hard to grasp. It was hard to fully process. I was numb and thankful for Mark's health all at the same time in a crazy bag of mixed emotions. After January my group of fellow transplant/cancer wives was now filled with beautiful, brave and faithful widows - and I was oh so sad and confused at the same time. My Mark was here and their husbands were not. God and I had many talks the weeks after Lee passed about what was fair and what I don't understand about his grace and the challenges of this life. I am working on peace - I'm working through the whys... but one thing I know for sure is I have Mark and each day need to love on him and remember to live-it-up with him!
By mid month we headed to San Diego on a vacation that was planned months before. It was wonderful family time. Best vacation ever! We are blessed! God is good. It was a fun-filled, schedule-packed 7 days that couldn't have been better. It will forever be in all 4 of our memory banks as a time when we were happy, healthy and blessed to be together.
March has been busy. Mark continues to feel better and continues to taper off his steroids. With little to no GVHD. Another past blog post quote, that still holds true:
"There are less days when I am fearful of the "odds" and "likely possible outcomes" always looking for "marked improvement" and more days of hope-filled, God given optimism and dreams of our future together -- and boy, does it feel GOOD!"
That brings us to April and to this night .... the eve of his 2 year leukemia anniversary.
As I look back I found this entry from last year:
Who knew our lives were changing forever?
"I have wished many times that I could go back to the 7th of April 2012 and take a snap shot of my perspective of the future. A snip-it of my outlook of our future without the fear and doubts I now have. Fears and doubts that no matter how hard I try I cannot make go away completely. I know that this is a dumb wish. We can't go back. Things happen in our lives and they mold us and make us who we will be tomorrow. There is no hope in looking back. Hope is for today and for our future. But it would be nice sometimes to just go back to a time when I was ignorant to the fear, damage and heartache cancer brings into your life and never leaves even when the tests show no 'blast cells'."
2 YEARS IS A LONG TIME!
More time that I thought we would have together.
It is a long time to struggle and pray for a different future.
It is a long time to focus on taking it one day at a time.
YET - it isn't long enough time to forget the pain of that first week - after diagnosis. I still feel the pain in my stomach and the wave of grief that comes over me brings tears to my eyes. Funny how time passes, you press forward, struggle, grow, succeed, morn, thrive and live with faith but somethings will forever be burned into your memory. We have come a long way in 2 years and I am optimistic as we start another year as a Cancer SURVIVING family! Mark is leading the way as our anchor, our hope, our daddy and love! We are strong, joyful and looking with faith into the future. We are going after our LIFE! We are rocking what we've got and never forgetting GOD is GOOD and we are THANKFUL!
From last years post:
Year 1 - we were surviving.
"I decided I would give Leukemia one year of our life to mess up.... survive one year. We needed a plan and I knew it would be a long hike. I committed that I would do my best to stay positive and just keep holding on for one year - then I wanted progress and freedom from it all."
Year 2 - new goal: living with purpose.
Saying "YES" as much as I can, focus on experiencing life. We are going to check off our list things we want to do before our kids are grown and we are "old." (a relative term for us now) We are focusing on living - not surviving. It will be a choice we have to make each day, knowing the Holy Spirit is guiding and upholding us each step of the journey!
Year 3 - living for the LONG TERM.
It is time to face the facts people: Mark is reaching goals and beating the odds! Truly beating them. The doctors were honest about our chances of long-term survival and when others around us are proving those horrible odds to be true - Mark is BEATING THEM. He is getting stronger all the time. We still have challenges. There are things to overcome and wade through but we are doing it with our eyes fixed on a target that isn't just one day at a time or even one week. It is 2, 3, even 6 months ahead. It is:
Strength for today and bright hope for tomorrow!
Don't forget to be thankful this week. Take time to be silly, be happy. Give those things of this life that bring you down - only a small part of your time and attention. Fill the rest of your mind and heart with the "good" this life has to offer. Love on your family. Forgive those who bring you grief. Breathe deep and be generous. Play to your strengths and rock what you've got!
We decide who we will be each day: Bitter, angry, compromised and defeated by life's challenges - or filled with the joy from above, choosing to do what we know we should, even though we don't want to - knowing that the Lord will carry us and the result of our choice will lead us to a more rich life.
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