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.