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.