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.

Health Update + Party Time

The not-so fun stuff:
I realize the last update did not include much about Mark's health. Since about the end of July we have been noticing some out-of-the-ordinary symptoms. Nothing too big but they started to create quite a long list. About the third week of August, Mark started having lung pain and fevers as well as some significant weight loss.

Those symptoms, added to the long list, were enough to make our Oncologist order a CT scan - which resulted in a pneumonia (fluid in lungs) diagnosis. Antibiotic medication followed with little change to Marks pain and coughing. Next, Mark got to enjoy a lung scope - they took samples of fluid and tissue. The evening after the lung scope, fevers sent us to the ER and we were admitted to the hospital for 2 days. ALL the different doctors got a chance to look at Mark closely - even involving the Seattle Super Doctors - we now have some answers.

Mark has Graft vs Host Disease (GVHD) of the lungs. Treatment is high dose steroids. We are glad to have his symptoms figured out and feel more in control with a protocol to follow - but we do not enjoy the side effects of the steroids. Prednisone (in these doses) make you feel hyperactive and like everything is amplified. It is hard to focus and rest. If things are loud they seem REALLY loud to Mark. If something is a little annoying it is SUPER annoying to Mark. We have been here before, we know how to handle this. Lots of teamwork and understanding. We use patience and humor and do just fine. Mark is actually talking at "Karen speed" these days! (hard to believe, I know!)

We are headed to Seattle on the 23rd of this month for Mark's 1 year post-transplant review. We will have lots of tests done and ask questions of the Super Doctors to find out more about Lung GVHD in the long term. Those doctors have seen this many times before and will have lots of info for us.

_______________________

Now for the fun stuff:
We are excited to host a party for Mark's 1 year post-transplant anniversary! See the invite below and PLEASE come! The more the merrier! We want to say "thank you" to all the donors and supporters we've been blessed to have this past year. Please spread the word. All are invited - let's make this a great day of celebration and thanksgiving for everyone who has followed us on this journey and been apart of our story this past year!

Summer and Rocking What We've Got!

Sorry that my last post was so long ago - seriously too long - before Memorial day?! (I have lots to share that I've been storing up until I had enough time free to write... might want to get a snack... you'll be here a while)

When I was a teenager something fun I used to do to distinguish "Summer-time" was to wear my flip-flops everyday and only order iced rather than hot coffees, between Memorial Day and Labor Day. This "summer" has been distinguished differently. While I have still worn my flip-flops a lot and consumed plenty of iced coffees - we have been busying LIVING… our goal this year. We've been trying to live purposely, make new friendships, strengthen our family and find opportunities to laugh and play together.

We started the summer by welcoming our dear friends, The Johnson family, home from their Seattle BM transplant. Lee coming home was an answer to prayer! Having Bekah and Lee with us through the Leukemia and bone marrow transplant journey has been such a blessing. Bekah always understands, supports, offers a shoulder for crying, sarcasm for cheer, hugs for comfort and encouraging chats that end up pointing us both toward Jesus and toward positive attitudes about our lives and our "boys". Lee and Mark have a bond like no other. They have both been to a very similar dark place and made it to the other side. A bond that is hard to understand - but a bond all the same. Thank you Jesus for the Johnson's.

By the second week of June the boys were done with school. Mark and the boys have enjoyed mini golf, I-Max movies and carnival rides with their summer passes to Riverfront Park. They did swimming lessons at the Y. We celebrated Father's day at home together. My heart was full of gratitude. We were an intact family with a wonderful (mostly healthy) daddy to celebrate and love on. It was great.

Summer hair cuts.

June ended and July started while we were on vacation to the Washington coast. We stayed for a few days, did lots of beach playing, beach fire with hotdogs and s'mores, fireworks and a little time with Grandpa and Grandma Snyder. A quick trip to the Oregon Zoo and back home wrapped up a PERFECT family vacation. Mark's birthday had new meaning this year. Made us think about how thankful we are to have another year and what potential we have to make the next year awesome. Mark's favorite gift = a Remote Control Car! The boys then got a retro-fitted 20-year-old RC car from Grandpa Schlatter and really enjoy racing with daddy out front of our house in the warm summer evenings. There was a week of Vacation Bible School and a long weekend for the boys at Grandma and Grandpa Snyders in the middle of July. Mark and I also celebrated our 11th wedding anniversary in style and had a great time. Much improvement over last year's 10 year anniversary in the U of W ER all night. (I can smile about it now!) Elijah enjoyed T-ball through the end of July. He did a great job and had a bunch of fun. WOW July was BUSY!

 

11th Anniversary!

August was here before we knew it. Both boys had their tonsils removed and we all enjoyed about 10 days of down time. Eating popsicles, watching movies and just being a family. We are quickly approaching back to school time. Trying to cram a few more things into our summer. This momma still has a few tricks up her sleeve - at least one giant water balloon fight, some yummy BBQ dinners and of course several more evenings of popsicles on the porch!

The summer was not all "highs" we did have a few lows. One being when a fellow transplanter, a truly wonderful Christian man, husband and father - was ushered out of this life and his failing body to the streets of Heaven. The following was a tough couple of weeks. It still brings tears to my eyes when I think of his dear wife and children. 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. Their relationship, his outlook on life and love for his children and others have inspired me. 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.

Another TRUTH this journey has brought to light for me is that life is about "them." It is about making life awesome for those around us. Encouraging our children. Serving our family. Honoring our husbands and loving everyone as much as we can. It is our job to encourage, problem solve, be strong and steer others toward the Giver of unending joy.  If at the end of our lives "they" can say we tried our best to do all of those things to honor our Creator - then I can't imaging anything better.

A lesson I am continuing to learn: We have the ability to decide. Even when you don't like the hand you are dealt you can still choose to be happy. You CAN find joy. Once you set your mind on being happy something wonderful happens = you become happy. God made our minds strong and powerful. When we put on a smile and tell ourselves it will be alright - we CAN be happy. I'm committed to being happy. I know that you can be too!

The more that I focus on my attitude, the path my life has taken, the power I have to change my situation and the grace that God gives us to try again and again to get it right; the more I am sure of a few things:

• I know that I was wonderfully made. I was made to be creative. My soul is alive when I am creating.
• I was made with a large aptitude for JOY. I can usually always find something to be positive about. To find joy in the midst of pain I know is a gift from God.
• I am an inviter. I like to include others and bring them happiness. It doesn't matter if they can't come or won't join in…. I still invite and invite again. I enjoy sharing my life and getting to know how others live. Life is GOOD we need to share it with others. 
• I can change the mood of those around me with my attitude. When I choose to be happy those around me benefit too. There is pain in this life but there is always two choices of how to react to it. Choose wisely - there is a lot riding on it!

Take some time this week to focus on your life, your strengths and the things that make you feel alive. Realize that you were wonderfully created by a God that has good things in store for you. My advice… rock what you got, rock who you are.

One year ago this week, we were moving to Seattle for Mark's bone marrow transplant. Mark was undergoing SO many tests and getting ready to prep his body to receive the new stem cells. I am tempted to look back and be sad. To re-live those days and feel all over again the pain that we came through. But instead I am choosing to look forward! To September 21, 2013 and celebrating the one year anniversary of Transplant. Rejoicing that my boys have their daddy and I have a husband by my side. Looking forward to a life full of moments to give to others. To spread joy and to LIVE together.

Don't miss a chance to give this week. Don't forget to be thankful, 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. Breath deep and be generous. Play to your strengths and rock what you've got!

Seen & Learned Vol. 1 + Remission Anniversary

I told you I would share things I've seen and learned this past year. Ways that I have seen God move, things I have experienced to know Gods word to be true. Things that have challenged me to live more intentionally...

Keep giving me hope for a better day
Keep giving me love to find a way
Through this heaviness I feel
I just need someone to say, everything's okay

Woke my weary head
Crawled out of my bed
And I said, "Oh, how do I go on?"
Nothing's going right, shadow's took the light
And I said, "Oh, how do I go on?"

Sometimes I need a little sunshine
And sometimes I need you

Hope for a better day
A little love to find a way
Through this heaviness I feel
I just need someone to say, everything's okay
(Everything's Okay, Lenka)

I've learned that this is literally the voice of many wives, mothers, sisters and daughters out there that have to deal with the serious illness of their loved one each day. They are serving, loving and praying someone though the darkest part of their life. They are relying on everything they've got and the hope that when all they have runs out - they will be able to just stand and hold on. To stand tall enough and long enough for the storm to pass.

This realization came only through seeing it first hand. Being right there with these women and knowing their fear, pain and weariness. Yet also their strength, determination and humor. God made women STRONG and He is faithful to uphold us.

I am blessed by the women's stories I have read, and blessed by the woman I have met on this journey. I thank them for their words and pray that those who read our story and my honest thoughts will be blessed in return. There is a great deal of need for compassion in this world. Pray for those that are hurting, grieving, enduring and healing. Take time this week to think of others before yourself, be team-players, and DON'T complain! If you put it into perspective I bet you don't really have that much to complain about. Embrace an attitude of joy and thankfulness. Choose to share love each day. Be SO thankful for the blessings and health you have.

We are thankful in the Snyder house that as of last week we now have a husband and daddy 1 year in remission from Leukemia! It has been ONE WHOLE YEAR since they have found even a trace of Leukemia in his marrow. He is getting stronger everyday! He even started running on the treadmill in physical therapy - a huge accomplishment since he hasn't been able to do so for over a year! I am so proud of him and SO encouraged by his effort and strength!

Mark has embraced this current phase in life. He has become a stay-at-home-dad most weekdays and is making them most of them. It may not be what he would have chosen or seen himself doing but he is sure finding his groove. He has a summer full of FUN planned for his boys. He is working on physical strength as well as physical and mental stamina each week - with the hope of returning to, at least part-time, work this fall. Things are starting to balance out and for the first time in over a year I find myself day-dreaming again about our future as a family. 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!

Life can get tough - really tough but you CAN endure. You CAN rise above. You CAN choose to trust God. You CAN find your boot straps and pull yourself up. You CAN keep going and not give-in to the doubt and fear that this world would like to fool us into believing is our only option.

It is with joy-filled tears (knowing what God has brought us through) that I tell you - "Don't be defined by your circumstances, by the challenges ahead of you - persevere! Trust God to lead you, embrace His way of living and NOTHING will keep you down. Stand tall and know you are strong enough!"

ONE YEAR LATER...

When I think back over the memories I have of this past year - many are foggy. There was sadness, fear, JOY, darkness, being really tired, hope, friendship, love, despair, faith … IT HAS BEEN A FULL YEAR. It seems to have gone by quickly - but at the same time I have such painful memories of when I wanted nothing more than time to pass faster and things to change quickly - yet they dragged on for weeks. I have so much emotion wrapped up in this past year - it is hard to express exactly how I am feeling about hitting the one year mark. What I do know is that my heart is overjoyed to say:

MARK SNYDER IS ALIVE and LEUKEMIA FREE!!

One year ago -
Easter morning, April 8th, I was sitting beside by husbands bed in the ER. He was laying as still as possible to try and work though the radiating full-body pain he had been experiencing for hours. Once my children were picked up by Grandma and Grandpa by lunch time - It was so quite. I was praying. Praying for peace, for direction for the doctors and praying to be home soon. "HOME SOON." - What a thought! I don't know how many hundreds of times this year I have thought I want to just: "be at home with Mark." Little did I know that we were starting a 41-day hospitalization followed by months and months of being in and out of the hospitals and cancer clinics - plus spending 5 months in Seattle for a bone marrow transplant.

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 leaves even after it appears to be gone.

Over the next two days...
Mark would undergo every test I have ever heard referenced on a TV medical show. They were looking at everything. From a simple nose/throat swap to using every type of scanning and X-ray machine - even a bone marrow biopsy. By Monday afternoon it was clear we were dealing with something serious. Wednesday morning the 11th of April, we had our first of what I call "tunnel vision" conversations. Our oncologist came in and delivered the Leukemia diagnosis and the whole room shrank. My vision narrowed until all I could hear and process where the words rapidly coming out of his mouth. My guard went up, my adrenaline was cranking and I went into crisis-management mode. I did not know then but I would have many more of these "tunnel vision" experiences over the next year as we learned the full scope of what was going on in Mark's body and how challenging the "treatment" was. Not to mention all the "side effects" that come with it.

Was I sad and scared? Yes. Did I want to fold up in a ball and cry? Yes. But there was no time for that - there were treatments to discuss, plans to make, calendars and charts to create.... could I color-code and organize cancer away? Oh yeah, and I had a husband to comfort and help focus in. I needed to let him know I was right by his side, I wasn't going anywhere and there was NOTHING we couldn't beat with God on our side. That NO matter what happened - we were going to be alright. Our lives had always "worked out" so far - why should we doubt now! No, we were going to take this head-on and not look back. We had work to do baby! TO GOD BE THE GLORY we are going to move forward in His strength! We weren't as bad off as Job and he was able to praise God!

I remember memorizing lots of information that I was being told and reading those first few days, making lots of plans and praying A LOT. I went home Wednesday night - spent some time reading about the miracle healings in the new testament. I have had a unwavering faith in God since my teenage years. I knew that when I needed the miracle power of God in my life, healing or otherwise, all I had to do was ask. I had the "faith as small as a mustard seed" I knelt by my bed and pulled out my "trump" card. I asked God for my miracle: Move the Leukemia mountain! Mark needed complete and immediate healing. Do something great God and shock those Dr.s - I want them to come back in disbelief, the cancer has left him - HE IS FINE and he can go home!

I went to the hospital the next day - it didn't happen. 
No Miracle... yet. I was sad. I kept praying and asking God for help. Each day knowing the Holy Spirit was guiding and upholding me. Keeping both Mark and I going. It wasn't until several days, even a week or so later, after the diagnosis fog lifted - that I realized what God was saying back to us. "I love you and Mark so much. Do you see all the things I put in place for you before this happened? I LOVE YOU. I knew this challenge was coming and I'm right here, and will be every step of the way" Even though I had the faith, the mountain in front of us could not be moved because God was holding it down with is thumb saying, "I need both of you to walk over it, you are strong enough - I will provide a way" As I accepted the path we would have to walk, I started praying for opportunities for God to "make it worth it." I will walk it Lord but you better use it!

The Lord is faithful!!
I can't tell you how true that statement is! God has taught us a lot on this mountain journey together. If I listed all the things he has taught us, all of the people we were able to meet and encourage along our journey, tell you all the stories of those that have encouraged us and about all of the provision and promises he has delivered - my post would be SO long. I will take the next couple of weeks and post a sort of retrospective review of many of the things we have seen and experienced from God on this year long hike. Stay tuned...

Beating cancer is tough!
Not only does it require lots of mental strength and stamina but an overwhelming sense of optimism that you can make it to the other side. It takes an unwavering faith in the Great Healer and the support of your Dr.s, family and friends. But then when you actually achieve remission and feel as if you have "arrived" on the other side you look down and realize - yes, you are ALIVE…. and oh so thankful - but you are broken. Things in your head don't work so well. Your focus and emotions are wacky. Your body is beat up. Your feet (in Mark's case) are numb and awkward leaving you with many challenges to overcome. Cancer leaves you worn and tattered. You are torn between OVERWHELMING thankfulness for life and the heartbreak that there is no guarantee how long it will last. You're thankful for the blessing of more time to watch your children grow, to love your wife, to LIVE but you are also left with the side effects. The collateral damage of remission and the "treatment" that just don't end. Things improve or change but they just don't go away. There is no "back to normal." It is tough.

Is it possible to be optimistic and find JOY among all the heartbreak and fear? Is it possible to embrace the hope God gives us for our future? Is it possible to rise each day and attack your day experiencing everything you can? Is it possible to stay positive and encourage others with your experiences? YES! - but it is all hard! It's a daily choice: to embrace your life, going forward with the joy of His spirit. Mark and I are both committed to choosing a positive grace filled outlook on life, and each day choosing it again.

Last year we were surviving.
In May of last year I decided I would give Leukemia one year of our life to mess up. For those of you who know me I know this makes you smile. Leave it to Karen to limit cancer. To put it in a box and give it a label and time frame. Yep! I'm not sure what I though I would do if we didn't reach remission and get though treatment by the one year mark... count to 5? Give it a time out? Who knows... what I do know is that I was giving it One year. I could 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.

As we hit the one year mark - I have a 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!

So here's to the next year of our journey - being in remmsision from Leukemia and a bone marrow transplant survivor! May it be filled with blessings beyond measure and may we grow in our relationship with the Lord and as a family!


May the Lord bless each of you that reads this testimony (blog) and the families you represent. May you be strengthened in your faith by seeing what God has done for us and may you embrace the JOY the Holy Spirit has for you - no matter what your situation or circumstance may be. God is good, ALL the time, and oh so worthy of all the Glory and Praise we can give.

Meeting Goals - Beating Odds

Mark is eating more, gaining weight, getting more energy back and feeling up to doing a lot more things. The neuropathy in his feet cause him balance issues and pain but he is being strong and making the best of it. Mark's skin GVHD rash is holding steady, yet so is the steroid level. We started tapering the steroids this week and will continue for the next 10 weeks or so. Please, Please, Please stay away rash. I am holding on to the quote from our wonderful Blue team head nurse back in Seattle "..... eventually the new stem cells/immune system and Mark's skin will make nice." Oh I'm waiting for that day, because that will mean that the 34+ pills he has to take each day will be greatly reduced. He will be feeling better, weighing more, filled with more energy and mental/emotional stability - and that much closer to feeling "normal" again!

With twice weekly physical therapy and oncology/blood draw once a week PLUS daily IV's, doing lots to help out at home, eating well, drinking his water and working out - he is staying busy! One goal we have not just met but surpassed this month.... NO hospitalization in February! (I made the goal of no more than 7 days a month in the hospital after our infection/hospital stay in January.) We are on the right track for sure!

Meeting goals.... Beating the odds - that's my new motto. 

I am renewed in my efforts to keep my JOY alive and TACKLE the life that is before us. I have always been the type of person that goes after what she wants. I'm a planner. I pick the goal and go after it with all I have. I'm not sure why I let myself think that I don't have to do that any more. Or that I don't WANT to?

I'm committed to do all I can to make my little family's life the best. I've said before - I don't like the odds that come with Leukemia (even if in remission) - or with bone marrow transplants! But they are just odds. Let's all commit to being people that beat the odds: who try hard everyday for their family, who don't fear the worst, who put their trust in an almighty power, not putting ourselves first, not giving up or giving in - BUT having hope for a future rich in love and joy from the LORD. 

I plan on putting one more thing on my list of accomplished goals... Supporting Mark faithfully and doing all I can to help his body beat the odds! 

Please keep praying for Gods touch. Some days are hard, but we are seeing more improvement all the time. Long road but I'm up for it and most days Mark is too.... but if you know me at all - you know that on the days he doesn't feel up for it - I'm dragging him along or carrying him if I have to!

Doing "fine"

We have good days.... we have tough days... But there are more good days than not.

I'll update more on health later... for now Click link below and enjoy:

http://youtu.be/9ylnx0NA9X4

Pep Talk

Mark is doing pretty good. Day by day, week by week - we just keep trying. Working hard and trying to find Joy each day. Not much has changed. His pain from the Viral meningitis is all but gone, skin GVHD is stable, energy level is declining as he tapers off the steroids but overall he is doing good. Slow progress, but doing good.

I wanted to share some solutions I've found lately:

When I'm....

Tired.... breath deep.

Unmotivated... pray.

Hungry but not meal time... drink water.

Saddened by life's unavoidable twists... pray.

Board..... wait, I'm never board!! Too much to do.

Tired of talking about it all... read God's promises.

Out of answers... listen and then go to sleep.

Frustrated by the things I can not change... find the JOY.

Scared about the future... pray, write and breath.

Follow the link below to watch a great little video that I really enjoyed.

Some of my favorite quotes:

 

The world needs you. Stop being boring! 

I'm on your team. Be on my team.  

Not cool, Robert Frost! 
But what if there really were two paths? I want to be in the one that leads to awesome. 
What will be your Space Jam? What will you create to make the world awesome? 

We can cry about it, or we can dance about it. 
We were made to be awesome!

You've just been pep talked!

Home

We are home!! I brought Mark home last night. YEAH!! I am so happy to have him home and feeling better. The virus is still affecting him. He has some headache pain and nausea but feeling much better than the start of the week or last weekend.

Continue to pray that he fully recovers from viral meningitis (the official diagnosis) and gets back to working on strength and weight building. Thanks for your prayers and well wishes. We are so thankful to have such a large support system.

While I would like to say that this was our "LAST" time in the hospital - I am coming to realize that the hospital will now be a part of our "new normal." At least until Mark is off of all of his immune suppression drugs..... New Goal: no more than 7 days a month in the hospital! I am some-what teasing, but at the same time it might be a realistic goal for us right now.

I am slowly working on convincing myself that this is our new life. It was easier to just power though in Seattle. Strange city, new apartment and consumed with medical care. But back home it seems so odd that Mark is still so sick and that we have to try and do all of our normal activities (work, school, church, small group, hanging out with family and friends, cooking and cleaning, etc....) AND oncology and physical therapy appointment, blood draws, IV's + all the medication, eating plan and working out at home. It is a lot of work and scheduling to make it all happen - but more than that - it seems so weird and strange to be doing it all here back home. I don't like it very much but I am trying to stay positive and work some fun, joy-filled family time in between it all. There are also chunks of time set aside for Karen. I know that I need time for me to relax. I also know that even if there are bad days and I don't always like what I have to do - I can keep this family going with help from family and friends, as long as I keep my eyes on Christ and lean on the Holy Spirit.

I have to remind myself often of these truths:
We love each other
There are brighter days ahead of us
I am strong enough
God loves us
He will continue to provide all we need
I am strong enough
My children are sweet & beautiful and just need love, encouragement and structure
My husband will feel better soon
I am strong enough
Joy can be found each day

Progress??

Well, after days of tests and waiting for cultures we now know Mark does not have anything super serious or anything bacterial. Everyone can stop wearing masks and gowns in the room.

The doctors are leaning towards viral meningitis. For most people the treatment would just be literally "go home take an aspirin and call the dr if you feel worse" it would run its corse in a few days. With Marks immune system suppressed it will take longer and require hospitalization so that he can be monitored closely. The fevers and headaches are the most concerning right now. Our dr has brought in a neurologist for his opinion. The Drs are in agreement that the plan is to watch him close for the next two days for improvement. The goal is to see the fevers stop and pain subside - which would get him off the morphine pump. Then we can talk about going home. Just a waiting game now.

Continue to pray for health and rest. Pray for the doctors to be sharp and not miss anything. Pray for my parents as they have the boys for me. Pray for my energy and attitude.

Sometimes you're up, and.....

Sometimes you're down.
Into the ER at 1:00 Friday morning. Mark started having headaches on tuesday that got longer and stronger until really painful + fever by thursday night. Called Dr. then headed to ER. Spinal tap, brain MRI, belly ultrasound, blood test, urine test, nose swap.... seems like hundred tests later - we know it isn't any of the "serious" things that they were concerned about but won't know until Sunday afternoon when we get the spinal fluid cultures back what type of virus infection we are dealing with. Strong antibiotics, fluids, fever reducer and strong pain meds are all in the works until then. We are settling in and mark is sleeping lots. Will be in hospital "couple of days" .... We'll see what that really turns out to be. Boys are with my parents. We are doing "fine".

For now, please pray for clear answers on tests. Alert minds for the Drs to pick up on anything and everything they need to. Pray for effective treatment and no complications of GVHD with this infection. Pray for peace and rest for us all. Thank you.

New Years! + Back to "Normal"?!?

NEW YEARS
New years service in my home church, sitting among my church family, singing Great is Thy Faithfulness, tears running down my face and glad to be home!

Great is Thy faithfulness, oh God my Father;

There is no shadow of turning with Thee;

Thou changest not, Thy compassions, they fail not;

As Thou hast been, Thou forever wilt be.

Great is Thy faithfulness! Great is Thy faithfulness!

Morning by morning new mercies I see.

All I have needed Thy hand hath provided;

Great is Thy faithfulness, Lord, unto me!

Pardon for sin and a peace that endureth

Thine own dear presence to cheer and to guide;

Strength for today and bright hope for tomorrow,

Blessings all mine, with ten thousand beside!

I can't tell you (or maybe I have through this blog) how true this Hymm is for me and my family this year. He has been Faithful!

___________________________________________


Normal!?!
Being home is great! Let me be clear about that. We are thankful to be home, close to family and friends and feel amazingly blessed to live in the home we do with our happy, healthy children. The Lord has been good to us!

But are we back to "normal"? - No. Just like every step in the adventure, being home and transitioning has not been as easy as I thought it would be. When you are a optimist like me - and you are facing truly tough stuff - you are often surprised with how hard/difficult things can be when it is time to face them. I am getting used to taking a deep breath and pressing forward even if things don't meet my expectations. That is the definition of my "new Normal." I am learning to take what I get and be thankful. A friend reminded me tonight that the good days do out-number the difficult ones and that as the good continue to become more frequent the number of difficult have to decrease.

Mark is doing well. The transplant Dr.'s say he is right where he should be and doing fine. It is going to be a slow road back to good health. We have a schedule of care set up here with our oncologist and physical therapy. We're taking it one day at a time and looking for the positive whenever we can. I love him, and he loves me. We love our children and they are happy. We love our God and He loves us. For today, that is enough for me.

Posts may be farther and fewer between as things are changing so slowly now. Progress is measured in weeks rather than days. I am headed back to work tomorrow and will be much more busy - if that is even possible...

Please continue to pray. For strength and endurance. For patience and joy. Thank you.

Embrace the person the Lord has created you to be today and find joy.

SPOKANE!!

Back in Spokane safe and sound last night! The car was FULL, the roads were dry and bare and driving felt really long. SO glad to be home. Took a while to get everything put back away (still have a few more piles for tomorrow - bed time now) .... I can't believe we had so much stuff in Seattle. Mark is feeling pretty good. Tired, but good. Boys are glad to be back I can tell. Much more room and everything familiar.


Some things I've noticed:

It is quiet here. Almost posted a request on Facebook last night at 1:00am for someone to come drive back and forth in front of my house so I could get to sleep. Apparently I got used to the Seattle I-5 traffic noise.

Drive-thru Coffee is really really great!

Driving though a city and knowing exactly where you are all the time, is a great feeling.

Our house is big. We are blessed. It is almost too big!

If you don't go up/down any stairs for 4+ months your legs get really tired, quickly when you do go up and down them many, many times to put stuff away!

My fridge, dishwasher, sink and bathroom are BIG! I got so used to the small spaces over there....

I actually had to call out to my kids "boys, where are you?" today in the house...

The boys can jump, stomp, crash, run and yell all they want and I don't have to say "shhhhh, we have neighbors" all the time. It is SO great to let them be boys!

Snow on the forest trees is a good view! - Others might prefer the city skyline, water and bridges.... I really like the way it looks right here at home!


I am so happy to be home, that this stage of the adventure is done and that my husband is home and doing good. To God be the glory! We are happy in Spokane tonight!

A Break in the Rain

We have had a busy week of appointments and tests. All is looking good for coming home next Saturday.... That is right you read it correctly... ONLY ONE MORE WEEK!! I am so excited. We have been given lots of information and instructions for home. Some of it was hard to hear. Like how ill Mark will still feel, how long the road to "normal" really is and what things we still have to be careful of and follow the "rules" back home. We are happy that Mark is doing well but slightly overwhelmed with all that is left to do. It seems like we have been waiting for this day for SO long and it would all be over. Well one big challenge is over.... more to come. But for now I am going to focus on the short term = Christmas and getting HOME! The rest can be worked out later. There will be plenty of time for new calendars, schedules, charts, eating and exercising plans once I get home. I do enjoy making schedules and color coded charts, : ) hahhahah... so it won't be all bad! We are trying to enjoy the last few days here in Seattle, enjoying my living room sunset view, getting ready for Christmas and packing a little too.

Living Room Sunset View

Thursday night we got to have pizza and pop for dinner, the boys opened one present each (mommy picked = new pj's) we put our new pj's on and headed to the car with hot chocolate and went for a drive to see Christmas lights. There are two neighborhoods not far from us that REALLY decorate for the holidays. It was perfect. Boys had fun. We all stayed warm in the car. Got back late so boys went right to sleep. Great time... we'll have to make it a new tradition.

There was a small break in the rain mid-morning this morning... so the boys and I quick put on our warm clothes, shoes and coats and headed out into the sunshine to a park not too far from our apartment. There are several hiking trails at this park and a creek too. It was fun, but muddy, exploring. The boys had a great time, burned off some energy and worked up an appetite. We headed a different way home and happened to find a drive-thru - YES a real drive-thru.... it was a McDonald's... against my better judgement we stopped and got happy meals on the way home. The boys REALLY loved it.

My Goof-Ball Hikers

Pretty - but Muddy hike!

Elijah is done with school. Last day yesterday. They sent him off with gifts and well wishes. He will be missed and we will miss the Hutch school. Such GREAT people.

I am busy catching up on snydergraphics work, cleaning and packing, and getting ready for my parents to arrive Monday.... the earlier the better. We'll have a festive Christmas eve. My Dad and I will do a lot of packing. Then a warm laid back Christmas day. My parents and boys will leave on the 26th and Mark and I will follow by the 29th.

Mark is staying busy with exercising, eating and resting. It is his new "job" as I am calling it. He needs to take his meds/IV's, eat, build muscle and rest. Then Repeat. Every day. With hard work he'll be back soon!

As I sit here typing my girlfriends back home are cleaning my house.... yes that is right, cleaning MY house! I am SO thankful for you ladies! Such a great Christmas/welcome home present. Can't wait to get back and hang out with you in person. I want to catch up with everyone back home.

Continue to pray for our little family. For Joy, patience and endurance. For HEALTH for Mark. For Gods continued financial provision.

Thanks for the Prayers! Thanks for the encouragement! Thanks for the financial support!

26th Mile @ Day 84

(I feel like this "Adventure" has been longer than a marathon but the analogy will work...)

We are finally at the 26th mile of transplant-athon. I am really tired but the end of the worst is in sight! We will by no means be done with this health challenge when we get back to Spokane but I feel like the scariest and most difficult part will be behind us. (and there is HELP in Spokane!)

Things I'll miss about Seattle:
Not much.....
but mostly the team of amazing individuals that have given their minds and years of time in service to others. Without minds like theirs and their dedication, the advances in science that saved my husbands life would not be possible. Without their dedicated years of study we would not be able to rely on them for their expert opinions of how to fix each challenge with Mark's body. I am thankful to our team here and the Fred Hutch Cancer Research Center.

I will miss having such high quality care minutes away. It is very comforting. We will be in good hands when we get home but it's just not the same.

I will miss the beauty of bridges, water, trees and architecture of this part of the city. But not the traffic, concrete, construction, parking and noise - so it is really a wash.

I will miss the Hutch school. Elijah has had the most amazing experience. The staff and teachers there are really great.


Things about home - that are literally filling my dreams:
My garage parking, a dining room table WITHOUT carpet underneath it, large dishwasher, kitchen counter space, my washer and dryer, gas stove top, my sharp knives and nice pots and pans - oh yeah, more than one bathroom.... oh the things we take for granted.

My boys having their own rooms and somewhere to "go" like the playroom to make noise and be "boys" - not always at my side.

My wonderful king sized bed, bathtub and a shower with doors instead of a curtain.... I hate curtains, eww!

Drive-thrus - yes drive thru coffee and food.... there are Seriously NO drive-thrus here and with NO where to park.... it is NO fun!!

I am looking forward to my beautiful backyard view of the snowy forest. oh and snow instead of rain. If it is not sunny... it better be snowy! That's my rule. Enough of this gray + rain.

Seeing our friends and family. Talking to people I love in person rather than by text and phone.

Getting back to our wonderfully supportive small group.

Worshiping my God in my home church!

I miss work, the actual creative work and the people.

....IT IS A LONG LIST.... 14 days people... 14 days.


Things on the Schedule
We have our official schedule of final appointments - we will be BUSY these last 2 weeks. The clinic is open every day ... even Christmas. There is lots of things to check out on Mark and make sure we are indeed ready to go home. My parents are going to come for Christmas eve and Christmas day. Then take the boys home on the 26th. Mark and I will pack up, finish up appointments and catch up to them by the 28th or 29th!! I CAN'T WAIT!


Things Mark will be doing at home
Mark needs to build back literally all of his muscle mass. Lots of physical therapy and conditioning. His heart needs to be worked out as much as any other muscle. There are still IVs each day, lots of medication and at least weekly blood draws. He will need to continue to work on balance, endurance, mental stamina, concentration and memory. Tapering off many, many drugs while watching for any early signs of chronic GVHD and seeking treatment quickly. All challenges I know we can overcome... lots of work and perseverance. We have finished one LARGE part of our adventure here in Seattle but I am trying to remind myself to stay motivated for the challenge back home. I am determined to keep cheering Mark on, managing his care the best I can, pushing Dr.'s for answers and best treatments and enforcing the "rules" to insure we BEAT THE ODDS. I don't like anything about Leukemia odds especially the ones that Mark and I face but we are doing all we can to insure we beat them!! Including PRAYING hard!

Keep praying, keep encouraging... we are going to beat this thing together. The Lord has seen us through this far, I know that He will continue!


Things that bring me to tears when I think about them too long:
Our amazing financial donors.... without you guys this whole thing wouldn't have been possible! We feel so blessed! I don't know if there will ever be enough words or ways to thank all of you!!

The generous 44 year old British man that donated the life saving stem cells to Mark. I tear up each time I think of his gift of life. If you are not a donor and are able.... SIGN UP TODAY!! You have NO idea how much impact your donation could have.

How well my beautiful boys have done with all the change and uncertainty. How they have transitioned and overcome. I love them so much.

How many people have been praying for us each day. God is Good - All the time!! We love you all and so appreciate your support.


Things the Lord has been showing me
That I am strong enough. That His spirit is always with us, and if we ask for Help - help will come. Not always in the form we would like but help comes.

That the gift of Jesus as a baby at Christmas was just not salvation coming to earth but a man coming as an example. An example of the way to live, the way to love others and to love God. If we live as He lived we will be able to overcome any challenge this world brings to our door. Not only will we overcome but we can live in joy and in peace with His spirit abiding in us.

That my life is not about me. As much as I want it to be - it is not! It is about how I treat others and how I serve my Lord in all I do. It is about where the glory goes... not to me but to Christ.

That the joy and love of Christmas can come to all who believe - no matter the circumstances.

He has been showing me that my family is loved. That we matter. That we are here for a purpose and that he is molding us and bringing us closer to Him each day.

These things are not always easy to see or recognize but the Lord is there and He is working!

Good Reminder

Great Verses from James Chapter 1

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.

If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. That person should not expect to receive anything from the Lord. Such a person is double-minded and unstable in all they do.

Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.

When tempted, no one should say, “God is tempting me.” For God cannot be tempted by evil, nor does he tempt anyone; but each person is tempted when they are dragged away by their own evil desire and enticed.

My dear brothers and sisters, take note of this: Everyone should be quick to listen, slow to speak and slow to become angry, because human anger does not produce the righteousness that God desires. Therefore, get rid of all moral filth and the evil that is so prevalent and humbly accept the word planted in you, which can save you.

Do not merely listen to the word, and so deceive yourselves. Do what it says. Anyone who listens to the word but does not do what it says is like someone who looks at his face in a mirror and, after looking at himself, goes away and immediately forgets what he looks like. But whoever looks intently into the perfect law that gives freedom, and continues in it—not forgetting what they have heard, but doing it—they will be blessed in what they do.