Saturday, December 29, 2012

Game Plan

Merry belated Christmas everyone :)

John and I have had a wonderful week with our families celebrating.  We did an early Christmas here in the Nashville area with his family on Saturday, then on Sunday night we travelled to Knoxville to spend Monday and Tuesday with my family at my grandparents' house.  I got cleared to travel for these 2 days if I was feeling well, and there was no way we were going to pass up an opportunity for a change of scenery!!  We had a great time with both families and were so thankful for the blessing of being with the people we love at Christmas time!

After the last echo and blog post we had a couple more doctors appointments, both of which went well and were uneventful (gotta love an uneventful doctors appointment!).  We also had a high risk OB appointment this week that showed us that sweet baby girl is still healthy!  We are SO THANKFUL for the blessings from the Lord's healing hand.  Thank you for all of your prayers surrounding our appointments, and especially your prayers for daily strength and faith.

So the game plan at this point is to see the high risk OB and my regular OBGYN every 2 weeks, and to get an echo every month followed by an appointment with cardiology and oncology.  I am really pleased with this schedule, it works out that on the monthly week I have all the appointments at once, so it's like ripping the bandaid off :) And I feel like it provides enough baby monitoring to calm my anxieties about something potentially being wrong with sweet baby girl- although there is nothing at all wrong with her, she has looked great at every check up and there is very little concern for her well-being!! Praise!!  And there is enough heart monitoring that we can really know the progression of the tumor, but without it being so often that it is a constant worry.  So all in all we are pleased with how things are going and the future plans in store.  The next round of appointments will be in mid-January, with a nice rest period between now and then.  I have failed to mention previously that my parents have been joining us in Nashville for the echo/cardiology/oncology appointments to be extra hands around the house and extra ears at the appointments.  John's parents live in the area and are always available for daily support.  Several of you have asked if we have family or a support system here in Nashville, and I proudly and thankfully proclaim to you, YES!!  We have a wonderful circle of friends, mentors, church family, elders, and 2 sets of parents who have all made themselves available to help meet our needs- we are so grateful for all of you.

This is shaping up to be a drawn out experience for us- there is no immediate intervention that will happen in the foreseeable future until baby girl is born around 34-36 weeks.  At that point we are looking at the possibility of starting medication (it's not conventional chemo, but a "targeted therapy") within the following months.  But as long as the tumor size and cardiovascular status remain stable, things will progress uneventfully through pregnancy and hopefully a little beyond.  I am trying to postpone my medical treatment for just a month or so after delivery if the tumor isn't changing just for a chance to live a non-treatment life with our new baby, and so far the oncologist seems to think that may be okay.  So we do have a long road ahead of us, but it is one filled with hope and we truly believe this is the best option we have.  God has already been so faithful and continues to pour his Spirit into us daily to fill us where we have needs.  And we still have faith that he will give us a miracle!  In our case, drawn out is not bad at all- it's actually quite good because it means that things are remaining stable and unchanged.  Drawn out is better than a quick intervention when quick means potentially harmful or tumor growth.

We so much appreciate your support and prayers and ask that you please please continue to lift us up through the coming months and years.  We need our friends around us, and we need their friends around them.

Our day to day lives look the same that they did before in many ways: we are still active and enjoying time with friends and family, John still goes to work.  The differences all stem from the emotional burden we carry and how it penetrates almost everything we do.  This doesn't mean that we live without hope, but that we balance ourselves between hope and our reality.  I often pray "Lord I believe, help my unbelief;" I liken our balancing act to the sentiment behind that prayer.

Our immediate task is to continue living our lives, not in the interim of now and then, but just as our lives.  Since we don't know what our future holds for even today or tomorrow, we can't count on everything being different or back to how it used to be at some point designated as "then."  We must keep living intentionally and purposefully as we were before this news, but we now carry a heavy emotional burden in our daily routine.  I can only plan and think about 1 week at a time, really about 4 days at a time, so I don't know what my routine will be in the coming months.  I may could do some things for school, I could start some projects around the house, I could spend my time daily with people, or my future may not hold any of those things.  So if you ask me about what I plan to do in the coming months, do not be alarmed when I shrug my shoulders and reply "No idea" with a smile.  I promise I have thought about it, but I've learned that sometimes making plans is futile.

I've added a "subscribe by email" section at the top right of the page- please take a moment to subscribe so you can be alerted when there is a new post.  I would like to stop announcing new posts on facebook so our that those pages can go back to being more a reflection of our everyday.  When you write your email in the blank, it will then take you to another website and send you an email asking for confirmation.  Please subscribe :)  I am going to try and post more frequently, just about the day to day of our lives and how The Lord is working inside of us.

Thank you again for your unending support!


23 weeks pregnant! I promise I won't post these every time, but the belly has truly arrived!

Our little alien :) that's a hand up by the face

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