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.