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.

Santa & Exercise

Santa
On Saturday we went to see Santa at the SCCA Christmas Open House. We had hot chocolate, listened to a string quartet play Christmas carols, did some coloring and made a trip to the North Pole shopping room. Due to generous donors the Clinic is able to offer each family member the chance to pick a few gifts for other family members or themselves. It is a room full of toys, clothes, books and other fun presents as well as supplies and volunteers to help wrap them all up. The boys each picked a gift for the other and one Matchbox car for themselves. Mommy and Daddy picked out a few neat things as well. It was super fun.

Exercise
One thing we are really going to miss when we are back in Spokane is the patient gym at the SCCA House, where Mark is able to workout on a Nustep/Recumbent bike as part of his physical therapy. The whole transplant process has eaten up all of Mark's muscle mass. He is lifting small weights as well as working out his heart and legs by walking and using the equipment at the gym. With a house full of stairs Mark is in for a challenge at home. Due to his low immune system he can not go to a public gym. I was hoping one of our blog readers would have a piece of equipment that Mark could use at our house for 6 months or so. Mark can not use a treadmill or elliptical type machine yet due to stability and balance. He'll get back there in time, but for now it has to be something that he can sit on and work out at least his legs if not his arms too. Please let me know if any of you have a piece of equipment you don't use often that we could barrow. It would really help us out. You can comment on here, facebook message me or email me at snydergraphics@comcast.net. Thanks!

Discharge Process

We have been informed that we are officially starting the discharge process!!! YEAH!! The paper work has been started, tests ordered and appointments are starting to be made. We have a FULL week next week. I think our schedule will be really full until we leave. If not with appointments with doing fun holiday stuff with our kids. Our team is aiming at getting us out of Seattle on day 100 post transplant - December 31st. Mark will go back through many of the appointments/test that he went through when we first arrived. Lung capacity test, strength and flexibility, dentist, eye doctor, CT scans, X-rays, full body photography, weigh and nutrition, infectious disease, large blood draw for tests..... and more. Each test is either to determine whether he can actually be discharged and/or to compare to his pre-transplant stats for health change and research.

Although we are sad to not be going home for Christmas we are doing our best to make it fun for the kids here. We will go see Santa tomorrow morning at the clinic Christmas party. I searched craigslist and the store sales for a small Christmas tree and ended up with the one pictured below... good price and just the right size. We have been working on decorating it and the apartment with supplies sent by the grandmas. Thanks!

Keep us in your prayers. Count your blessings and remember the reason for the season. Enjoy this time of year!

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.