4 years..... Did you say 4?

I am not really sure how to start a post when so much time has past since I last wrote about our journey. I know there are things I should share.... I did agree to be transparent about this journey in the hopes that it would bring glory to God and inspire others to keep fighting, one day at a time. But at the same time the things I have to share seem harder to get out then when Mark was really sick and there were medical updates and facts to share. The things that have happened in our journey the last two year (yes 2 YEARS!) have been internal, emotional, mental and involve our whole family. The Lord has been so faithful to our little family. There isn't a need He hasn't met - in His way, in His timing. But there has been deep sadness, great struggles, leaps of faith and daily work in the trenches. I will take the time this summer to write about those months - but tonight I am writing for a specific reason.

My heart is full of peace, joy and overwhelmed with gratitude that we are celebrating tomorrow! Four years ago, on May 18, 2012 we received our first clean bone marrow biopsy - putting Mark into remission from Acute Lymphoblastic Leukemia. We have had many bone marrow biopsy since and all have been clear. We have had MANY physical struggles since that day but never out of remission, and for that we are SO thankful. I wake up next to a miracle every day. Honestly the business and stress of life help me to forget this fact often. But Mark is a miracle. Today we pray in thanksgiving and praise to a Father who has brought us through - who has refined and strengthened us for His purpose.

Mark is doing so well. Minimal medication, doctor appointments are few and far between and he is getting strong! He has been snowboarding, backpacking, motorcycle riding, coaching and is playing on a soccer team and tearing it up! He is fast and pushes hard. (sometimes I have to look away - there is still apart of me that worries and is afraid he will break but it is only a small part of me - thankfully) Most importantly he is enjoying himself and feeling very much ALIVE again! I am so proud of him and so glad to be sharing this life with him. He is not just stronger physically but mentally too. He is learning to deal with less focus and patience than before treatment and succeeding. Working more hours, taking on many more responsibilities at home. He is growing in his relationship with me and his boys while inspiring others to fight. He is taking back his life and the precious things his treatment and cancer stole away - one day at a time. His progress is inspirational - I know how hard he has had to work to be where he is and I'm proud not just of how far he has come but also for how far I know he will go - he's not giving up - we are in this for the long run! We have been given years that others weren't and we are making them count: together, humbly, with honesty and learning to be vulnerable! I love you babe!

___________________________

The following are from previous posts right about this time of year:

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." 

New goal: Year 2 - 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!"
___________________________

Tonight as we reach the Year 4 mark, I would say that this last year was a year for healing. Not like the physical healing we (mostly Mark) had to do over and over - but spiritual, emotional and relational healing. We came home from Seattle a thankful but broken family. In body, spirit and mind. We had survived that first year, were able to focus on living again in year two, began to hope for the future year three but not until this last year did we start to recognize and deal with the tough, deep and lasting stuff. These are the things I will write more about this summer - you will be encouraged to see how God was moving through it all and guiding us.

Goal for YEAR 5?? - Be brave and open.
Open to come alongside others who are enduring a similar struggle. Opening our heart and minds to the awesomeness God has for us. Asking Him for goodness and expecting nothing less. Opening up to be vulnerable, take chances and be confident that life will again be what we make it. Opening up ourselves to the possibilities this life could have for us. When you go through something as traumatic as we did - you tend to see life with limits. It quickly defines time, health and family in a way you weren't quite expecting or were ready to accept. We are learning to throw off and reject those limits. We are investing in us - as a couple, as a family, as survivors and as friends. We will continue to be intentional and make our life, home and schedule one that best serves our unique family. We will take the opportunities given to us with new energy and purpose. We will be brave and "jump" with confidence!

This journey has taught me many, many things. Too many to list - though sometimes when I am struggling to sleep I open a conversation with God and begin to list the times I have seen His hand in my journey. The instances when I know it has been His divine voice, presence or hand teaching me, refining me and breathing hope and love into my soul. I thank him for being a Provider, Healer, Miracle Worker, Comforter, Father and Guide. I say "open conversation" because it often doesn't end.... as I keep reflecting and listing out the countless instances - I drift off into beautiful, blessed sleep to leave God to fill my dreams. He is ever faithful. Ever loving. Trust that. Be thankful. Even for the tough lessons - be thankful for what you have learned and use it to bless others.

Tonight as you read these words - think about your own goal for this next year. Ask the Lord for his opinion. Be brave and be intentional. 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.

More to come... stay tuned.

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!

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!! :)

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.

Long TIME - Busy TIME

It has been a LONG TIME since I have posted. Sorry.
This last 6 weeks + have been a BUSY TIME.

We had a WONDERFUL time with our friends and family celebrating Marks One Year Transplant Anniversary!! It was a LONG TIME coming and we felt so loved and supported. It was really nice to be able to thank everyone who could come - in person. We are BLESSED! 

The day after the celebration we headed out for a LONG week in Seattle. Mark was a champ - making it through so many test and scans with a smile intact. While we didn't doubt it, we were very happy to know that his bone marrow is still 100% free of cancer cells! Praise be to God! The doctors (awesome doctor and nurse team) confirmed what we already knew/guessed:

1. Mark has Graft vs Host Disease (GVHD) in his skin, mouth, gut and lungs.
2. Mark is going to be on prednisone (steroids) for a LONG TIME more. (at least till April 2014)
3. Mark is going to be on immune suppressors (Tacrolimus) for a LONG TIME more. (at least 3 months after successfully completing a steroid taper)
4. Mark needs to be particular about what he eats - trying to continually gain weight, needs to continue to avoid germs and public and needs to continue physical therapy.
5. Mark will not be back to working for a while.
6. Mark is doing really well (all things considered)
7. Mark is beating the odds. He had a nearly 40% chance of NOT living to see his first Transplant anniversary. Thank you Jesus!

Overall Seattle was good. We learned more about what to expect in the future. While some of it still seems scary and NO FUN - I am left with the words of our doctor in my head (read with thick Spanish accent) "Mark you are really plus or minus.... you go home, you live life, you come back and see me in 6 months." By "plus or minus" she means that he doesn't have real bad GVHD nor real good health after a transplant either. He is right in the middle and that is just fine by her. It is just fine by us too! 

We have seen fellow transplanters who have gotten too much GVHD all at once and not survived. We also had to watch our dear transplant friends (Lee and Bekah) walk the road of not enough transplanted cell activity and GVHD to effectively keep Leukemia away. They got the devastating news in mid September that his cancer was back and have since moved back to Seattle (in our/their same apartment) to be part of a trial treatment with good outcomes of remission. He is FIGHTING hard and we are praying and hoping for the best. Please include them in your prayers. They are on a path we know some of and it is HARD, LONG and TOUGH! Pray!!

We had time for a little fun in Seattle - Space needle, dinner with friends, dinner/movie date night.

We have been extremely BUSY. Between school, soccer, cross country, church, Karen working more, Mark manning the home-front, doctor appointments, new drugs, physical therapy, managing drug side effects, trying to keep muscle and fat on Mark and trying not to let the house or my mind fall apart in the mean-time has been a challenge. I am super tired and sometimes grumpy. I am finding it hard to just be happy and let things go.

When Mark got the lung infection and increased GVHD in August followed by Seattle our future became more defined for me. I felt like we were really getting into a groove of happiness and normal-ness in the weeks prior - this summer. When he started not feeling well I had to come to terms again with the fact that Mark/his family is/are going to have to deal with health issues for a LONG TIME. That the life I thought I would always have and planned for would be very different. That for as long as Mark is living (which I pray is LONG and oh so filled with happiness) his doctors and therapy will be a part of our life. That his drugs and their side effects are going to be apart of our lives. All of these things are going to be here to steal our time, sometimes our joy and our sanity. To be truly happy again we are going to have to deal with them and learn to live WITH them. This took the wind out of my sails for a few weeks.... and to be honest I'm not yet sailing forward at full speed. This time it might take me a while. This time it is not about saying "good bye" to Mark any time soon but yet saying "Hello" to the new transplant survivor, strong, drug filled, determined Mark and trying to say "welcome" to this new life of LONG-TERM disease/health management.

The dreamer, planner and detail management part of me is feeling sad and deflated by this realization. At the same time the - pick your self up and find your boot straps, work for a better tomorrow part of me is ready to take on this challenge and "rock what I've got!" I'm trying to tell myself to hang on and keep moving forward. I know better tomorrows lay ahead and soon ALL the parts of me will be ready to take on my life with JOY for tomorrow!

Pray for Mark's health. Pray for my smart, wonderful, silly and brave boys. Pray for my BUSY schedule and for my mind and heart to be encouraged.

I promise not not wait so long to post again.