Another Week Down...

Thanksgiving
We had a great Thanksgiving visit with our friends the Roth family. Lots of energy and laughter. My boys really enjoyed taking turns to sleepover at the hotel with their best buddies. All the children were waterlogged after 2 long swim sessions and we were all full to the brim with desserts and turkey dinner the whole time. Jordan and I were able to get out on Thursday night for some deals at Target. I might come over to Seattle every year for Black Friday shopping. There was a line but not that long and the checkout was quick. We were able to get everything we wanted - plus more! It was almost relaxing. Christmas is going to be much smaller for our family this year but I was able to find a few deals for things our boys will really like.

Another Week Down
We made it through another week of appointments, IV's, Medication regiment, dressing changes, blood draws, chest X-rays, antibiotics, spinal tap and exercises.  We have all managed to get a small cold even Mark... (bummer) and Mark has also developed a Staph infection in his blood. (pretty common - but he is being watched carefully as well as high-dose IV antibiotics - 2 hours, twice a day for 10 days). Elijah and I are feeling back to normal... Noah has a day or two more till he is back to normal and Mark maybe a couple more days to get over the cold part.

Marks skin is almost back to normal. Praise be to God! The steroids continue to taper and NO NEW SIGNS OF GVHD! We are very happy and I feel like I might actually be able to stop "holding my breath" on the issue of the GVHD returning.... we'll see.

Due to the continued steroid taper and the infection/cold Mark is feeling tired and apathetic. He lacks the energy to do all of the physical therapy he needs to and the extra energy it takes to smile through it all. There have been quite a few more naps and passes on full meals and completing the exercise log this week. He is fighting hard, trying to stay positive and find joy in small moments with the boys - powering through the pain, nausea, discomfort and annoyance of this whole adventure! Everyday is not great... but every day there are things to be thankful for, things to smile about and glimmers of hope that we will once again get back to a "normal" life someday...

We are on day 72 Post-Transplant. We are really hoping to come home on Day 90 (December 21) the earliest they ever discharge patients. Might have to wait until day 100 (31st) or even into the new year, all based on how Mark is doing. We don't want to leave any sooner then is right.... but we are so anxious for home. I will find out more when we meet with Mark's doctor tomorrow.


Christmas
We have been working on snowflake decorations, snowmen and a gingerbread house (or as Noah says "ninja bread"). As you can see from the picture it was a crazy good time decorating the house with candy! Both grandmas have put kits in the mail for candy trees, nativities, paper chains and snowmen decorations! We will have this place sparkling, warm and Christmas cozy in no time. We are trying our best to make it feel like that "magical time of year" even without a tree, stockings, snow, and being at home or knowing where we will spend Christmas! Thankfully our boys are young and don't seem to mind too much. We will go to the clinic this Saturday (as long as everyone is well) for a family party with Santa and Christmas goodies. I think the kids will really enjoy it. Mark and I will too.

What I Know  VS  What I feel
Lately I have been struggling with what I know to be true and what my current reality feels like. I think that it is in these times - the stressful, sad, scary and unknown - that we figure out who we are. We are defined by our choices. Not very many times in my life - if ever - have my choices had such a large impact on what my day to day life is and will be like. I've ALWAYS been an optimist, some times only a realist... but always on the positive side. "I can do it... we can work together... I'll power through... it will be alright" But lately I have been so challenged by how awful all this feels. I am tempted daily to just stay here, in my sad, woe is me feeling. But I KNOW that Christ is bigger then all this and I can choose His joy no matter the circumstances. I KNOW I can change the mood of my household with my attitude. I KNOW I can have hope in the one who created me that our future can be bright and that I can overcome anything with Christ who gives me strength. These things I know, I just don't feel like it, or want even to. The Devil knows how to whisper in my ear and remind me how much this adventure is challenging me, how much it twists me up and bogs me down. His whispers make me feel like giving up and just being mad and hopeless. I have decided that character come down to trusting what you KNOW to be true and making the choices you should rather than the ones you want. This adventure is definitely testing/growing my character. Doubt is powerful, but I know faith is stronger.


PRAY....
Please pray for Mark's infection and cold to just GO away. Sooner than later.
For continued progress on the GVHD front.
That we will be healthy enough to come home soon.
For this to be the end of sickness for Mark.
That we will beat all of the statistics.
That Mark will be back to his strong, joyful and silly self really soon.
That he can be freed from this physical, mental and emotional burden.
That God will receive all the glory, that he will continue to provide for us and lift us up when we can not do it on our own.
And please pray that I will be strong enough to carry the weight of all of this and trust what I know to be true and not fall prey to the negativity and doubt that creeps in due to the way this all feels.

Catching Up

Where do I begin.... it has been along time since I have updated and lots has happened.

Lets see... I'll start with the fun stuff. We got to take the boys up the Space Needle. They loved it. They took their binoculars, checked out all the views and had some hot chocolate and cookies. Good time all the way around.

We have had a couple cold but sunny days between the rainy ones where we headed to the park for some playing. The boys really enjoy it and Mommy loves that they get all worn out and take good naps.

Elijah had his very first art show at school. He was so excited to show us his works and did a very good job. (insert two very proud artist parents)

We were generously given tickets to go to the Sounders playoff game. Got to sit in a suite as well. It was fantasic. They lost but we still had a great time.

Mark is doing good. Skin really seems to be healing up. Rash is going away. At the same time, the Dr. continues to decrease his steroid level - with no signs of the GVHD increasing. So far, so good. Now we need to stay on this track of improvement and we'll be home in Spokane by the end of December. We will hit the 100 day mark (usually allowed to go home mark) on the 31st of December. If all goes well and we don't have any set-backs we will ring in the new year as a family in Spokane!! Praise the LORD!!! When you are on high doses of steroids you feel as if you have consumed at least a pot of coffee each day.... as you come off you feel as if you are missing that boost in energy and mood. Headaches, apathy, lack of appetite and general tiredness are all side effects of the taper. Pray for Mark to power through this new set of hurdles. I know he can do it with God's help. Mark is trying real hard to stick to his eating and workout plan - even getting the boys involved in his physical therapy exercises (super cute to watch). Continue to pray for his muscle mass and strength to return. Pray for a balance of mood and energy and the stamina for us all to get through this 40+ days in Seattle.

We got to visit with some new friends that are just starting the transplant process that we met through mutual friends back in Spokane. I mentioned my coffee date with the Bekah in a previous post. They came over for dinner last night. (They are in Seattle for some pre-transplant appointments) It was good to chat with another couple that understands where we are at. We got to share more of our stories and encourage each other. They are an amazing pair. When you think of it please include them in your prayers. They have a long road ahead of them that Mark and I know too well. I know they can do it - with the Lord leading them they will make it through.

I am getting laundry done, cleaning the house, and preparing food for the arrival of our Thanksgiving guests - the Roth family - Jordan and Rusty and their 4 kids. They should arrive before dinner tonight and get to stay through Friday. We are so excited for things to feel a little more like normal. We have missed them SO much. It will be good to just be together and remember how much we truly have to be thankful for.

As we head into this holiday season and start with sitting around a table filled with our favorite foods remember to be thankful. Take time out to reflect on your life, family, health and friends. Thank your creator for all you have and enjoy the time you have together - soak it up! We will be most thankful this year for a Daddy that seems to be over the hardest part of this whole adventure. We are thankful to be together. Thankful for all we have to look forward to experiencing together as a family this next year. We are thankful for all our financial donors. Thankful for all our family and friends prayer support. Thankful for a God who has carried us through this past 8 months. Thankful for the gift of the Holy Spirit, grace, forgiveness and eternal life.

My mom told me something she realized this morning that really got me thinking..... Remember as you are sitting around your table tomorrow - you are part of a great nation that is filled with families gathering around good food and every second of the day someone will be giving thanks aloud, holding hands or bowed in prayer. Starting with the first meal on the East Coast till the last dinners are cleaned up in Hawaii - somewhere in our nation families will be reflecting on their blessings. The day will be filled with gratitude. Amidst all the struggles we have as a country and as individual families - tomorrow will be a day to put those aside and be thankful for what we DO have. Share your blessing aloud tomorrow, giving thanks to the source of them and remember to bless each other.

SMILE

Mark is still dealing with skin GVHD but it does seem to be getting better. Pain from swelling feet have also been an issue this week. He is making it though. Dr.'s have started lowering the steroids he is on. It is a slow taper over the next few weeks. Mark can already tell a difference in mood and energy... they are a bitter-sweet drug. They give you energy and good vibes as well as doing good work in your body - but they also come with many side effects. We are now dealing with the "downer" effect of getting off of them. Hopefully this time as we taper we will not see any increased signs of GVHD act back up. We'll keep you posted. Insurance has still not approved the expensive blood/UVA light treatment I mentioned last week - we're just waiting to see.

Not gonna lie... I've had a hard week. It is so much mental and physical work to keep up with the roll of caregiver, wife, mom and designer all at the same time. Especially away from family and friends in this great big city! My understanding of selfishness is growing.... how it starts to brew, what fuels it, how the devil uses it in you to hurt the ones you love the most - BUT I'm also learning how to control it. Oh what a battle! I have always tried to work, serve and love others to honor Christ in my life - I didn't always get it right but I felt like I tried hard. The last few weeks I have really been challenged. I DON'T want to try hard any more.... I'm tired. I pouted for several days this week. The Lord has been working on my heart... I found new inspiration and umph by the end of the week! I am trying to smile, speak sweetly and use patience often. I'm not always happy about all I have to do... but I'm trying to focus on my actions bringing God glory - it seems to be working.

Tomorrow will be 50 days post-transplant!! (217 days since this all started) Makes me anxious to just be DONE already. I know this is a long journey... one that will not be over just because we are back in Spokane, but I'm really looking forward to home. I miss my family and friends. I miss my job, my house, my bed, our church family, small group............ it's a long list!
Soon enough... I keep telling myself - soon enough.

PLEASE KEEP PRAYING!
For Marks strength and weight to increase. For the transition off some of the meds. For HEALTH!!
For all the mental things he is going through... I know how hard all of this is for me and I'm not even the one with the Cancer... he is.

Thank the Lord tonight for all the little things. I don't know how many times I've longed for a "little thing" that I took for granted pre-cancer. We are all so BLESSED! Thank the source of your blessings big and small tonight.

Pray for the boys - for joy, rest, health and peace.

Pray for my attitude... that I will remember to SMILE each day. A real smile, fueled by Christ, despite our circumstances.

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Smile though your heart is aching
Smile even though it's breaking

When there are clouds in the sky, you'll get by
If you smile through your fear and sorrow

Smile and maybe tomorrow
You'll see the sun come shining through for you

This Weeks Motivation

My motivation this week to just keep on keep'in on, trying my best to support Mark; trying to remember that in life "It's not about you, it's about how you serve the One who created you - in all you do" I'm going to make this place our "home."

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Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave is stringing us along
Just know you're not alone
Cause I'm going to make this place your home

Settle down, it'll all be clear
Don't pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found

Just know you're not alone
Cause I'm going to make this place your home

Great song - Phillip Phillips - Home

DAY 40!!

Sorry for the lack of update lately. It has been one full week since the kids arrived and I think I underestimated the amount of work it would be for me to have our kids here. I am not complaining... I can handle it - but I am very busy. We both LOVE having the boys here. They bring a lot of joy and distraction when needed. They are growing and changing so fast and I am glad to not miss anymore of the great little moments.

We had a great time carving pumpkins last Saturday with our friend Jeff. He was very patient and helped Noah with the cutting of his pumpkin (something daddy had to miss out on this year due to lower than normal platelets). I helped Elijah - I think they both turned out super cute. (check out the pictures below). There was a little carnival on the 30th at Elijah's school here in Seattle and the boys had a really fun time. We all dressed up, played games, ate snacks and got candy + prizes. Fun time all around. Elijah did trick-or-treating with his classmates at the SCCA clinic here - lots of kids and LOTS of candy. It was great. Noah and Elijah both went out with daddy around our apartment complex on Halloween night trick-or-treating... only one couple answered with big suckers (big city apartment just isn't the same as our small, friendly neighborhood back home). We ended the night with apple cider, Grandma Beth's home-made sugar cookies and watching Charlie Brown's - The Great Pumpkin.

HEALTH UPDATE: We have reached 40 days post-transplant!!!! YEAH!!! Mark is doing well. Spirits are good and mind is in a good place - but his skin... not so much. The skin GVHD has not gotten any better with standard treatments. In fact it is getting slightly worse by the day. There are quite a few more "less standard" treatments we can try. Some can make his immunity "numbers" go down quite a bit - others require hospitalization. The first one we are going to try is called Extracorporeal photopheresis it is a big name for something I don't totally understand yet. We will have a consult early next week and find out more. Essentially it is a process that takes blood out of Mark, treats it with UVA radiation and then it is put back in him. It is supposed to suppress the new immune system even more and make it "calm down" and stop effecting his skin so much. The Doctor reassured us that it is a good sign that the GVHD is limited to Mark's skin - not organs or digestive system. The medical team is concerned, but hopeful. We are a little nervous where this might lead if it doesn't clear up soon - but we are trusting God to provide healing and strength to endure until then.

Please PRAY for Marks skin!
First for the doctors to know just what to do and for the treatments to be effective sooner then later.
Second for the pain and sensitivity to subside.

We will keep you updated when we know more. Thanks for your support. We are feeling strong. Leaning heavily on God for strength and endurance - but doing fine. I think that might be my new catch phrase "doing fine" - we aren't doing great, yet certainly not bad..... we are doing just fine.

Noah making "scary face" while daddy draws out pumpkin's face

Jeff letting Noah help.... yet managing to keep all his fingers in the process.

A "white" skinny Sam Dower  -  Sounders Fan  -  Bumblebee & Optimus Prime Transformers

They are "tough" guys!