Behind the Curve

I apologize that it has been such a long time since I last posted an update.  The last three months have honestly been the craziest and hardest we have encountered to date.  So many times I would sit down to write an update, and I would just stare at the screen for several minutes before closing my computer in utter exhaustion.  The one day I finally got a detailed update written out, everything glitched and my work was not saved.  It was easy to walk away after that.  Especially since life was already draining everything out of me.  At this point, so much has happened that half the battle is knowing where to even start!  I may not be as detailed as I usually am, but here it goes……..

Just two days after my last post, Jonathan landed in the ER and hours later, was admitted to the hospital for a few days.  The pain in his head had just become unbearable, and the nausea was back in full force.  After arriving at the ER, they administered a couple of very hard hitting pain relievers to no avail.  The decision was made to give him a spinal tap to test the fluid, and also to relieve some pressure that could be contributing to the head/eye pain.  After that procedure, and another cocktail of drugs, Jonathan was finally able to get some relief as he passed out for several hours.  Ten hours after arriving at the ER, we were finally moved to a hospital room, and later that day, a wide battery of tests began.  Since his neurological tests were not completely normal, they scheduled him for an EEG, a full work up with optometry, more neurological testing, and the fight began with our insurance company to do an advanced MRI called a spectroscopy.  The purpose of the spectroscopy was to differentiate between what in the brain was tumor, and what was brain damage brought on by radiation and/or inflammation.  Unfortunately, the EEG didn’t really reveal much of anything, but we learned that Jonathan’s vision was definitely being affected.  He has lost a lot of his peripheral vision, and his brain doesn’t properly read what is coming in through his eye gate.  For example, anyone he looks at, even himself, has one eye that looks partially squinted shut.  Even more frustrating, the spectroscopy has completely baffled the doctors, and gives them absolutely no new information.  After a couple of days in the hospital on many “happy” drugs, Jonathan was no longer in pain, so they had nothing more to do but send us home and schedule a follow up for the next week.

Soon after returning home, it was very apparent that even more had changed in regards to Jonathan’s condition.  We quickly learned that his vision was more affected than we originally understood, that he had suddenly developed dyslexia, he had tremors in his right hand, and his balance was not nearly as steady.  After meeting with the doctors the following week, we learned that the loop in the brain that the left and right sides use to communicate with each other was damaged.  This explains a lot of the newer symptoms, however, what can’t be clearly explained is what is causing it……tumor growth or brain damage.  The doctors still didn’t know.  The recommendation was to try a new drug called Avastin.  It works to destroy the blood vessels that cause inflammation or that feed cancer.  It comes with some not so great risks as well, but we decided to give it a try.  The doctors were hoping to use it as a bit of a diagnostic tool.  If Jonathan’s symptoms improve on the Avastin, than his issues may have more to do with inflammation caused by damage.  The order went in to the insurance company to get approval for this next “phase” of treatment.

In the meantime, it became painfully apparent that Jonathan’s time on disability would not be short term this round.  We became faced with the realization that with the sharp decrease in pay that would be coming, we could no longer afford our home, nor could we afford to remain living in the area that has become home to us.  We needed to start thinking about long term options for affordable housing and affordable living, not just for now, but for what could be the harsh future.  Eight years ago, we moved to the Seattle area from Oklahoma City.  We were sent to OKC during our time in the USAF, and ended up living there for twelve years.  When we left, I have to admit that I was ready to leave.  God was moving us forward, and I longed for a change.  Moving to the PNW was a great move for us.  We have LOVED being here, and have seen so much growth in our lives and in our children.  I never thought I would move back to Oklahoma, yet that was the very idea that presented itself to us at that time.  We asked for permission from Jonathan’s employer and received approval to make the move.  (Jonathan is still technically considered their employee while on disability insurance, for a limited period of time.)   It’s a much more affordable place to live, and it’s familiar to us.  The thought of moving hits hard….especially when I think about leaving behind our eldest who is living here on his own now, but we know that’s what we are meant to do.

During all this time, I was starting to feel pretty rotten.  I figured that with all the extra stress and new challenges we were facing, I had just gotten run down.  After a good amount of time went by, I realized I should check to see if I was expecting…..just to rule it out.  On February 1st, we received a huge shock when we discovered that I was in fact pregnant.  We had wanted to have a fifth child, but when Jonathan received his diagnosis, we decided that was just no longer an option.  Despite OUR plans and cautions, God decided that we did in fact need another little person to complete our family.  We will be welcoming another beautiful baby girl in September.  While this surprise was not our plan, it is very welcome!  God has a very special purpose for this little one, and she is a happy distraction in the midst of so much chaos and so many questions.  It has been challenging though.  On top of everything else I have been managing, I had the yuckiness of the first trimester to get through.  I’m almost there, and thank God, my energy is starting to return.

On February 22nd, Jonathan went in for his first Avastin treatment.  Two days later, he had a fever and was feeling quite sick.  We were warned that could happen with the first dose, so we watched things carefully, but didn’t get overly concerned.  Things got worse though.  In spite of still being on a high dose of steroids, Jonathan’s energy levels totally nosedived.  He barely moved from his easy chair.  The confusion and memory issues worsened considerably, and his balance and lack of stability was at times alarming.  When the doctor saw him two weeks later for the next infusion, she could not believe the difference.  She decided to move forward with the next dose, but scheduled us to come back one week later to make sure Jonathan was improving.  He didn’t improve.  In fact, it was even worse.  When we saw her last Thursday, she was beyond concerned.  She is agreeing with me that it is very possible that the Avastin in not working for Jonathan, but recommended adding Ritalin to his daily meds to try to bring on some improvement.  The doctors are really hoping to get another dose of Avastin in to really see if they can read out any difference in the next MRI.  I am surprised to say that the Ritalin made a night and day difference.  I will be consulting with the doctor tomorrow to see if we will indeed go through with the next scheduled Avastin infusion on Thursday.  Jonathan’s MRI is scheduled for Tuesday the 26th, so they are hoping that will tell us more of the story.

In the midst of all this craziness, I was frantically working to get our house fixed up and ready to be put on the market.  I am thankful for the MANY friends, and even some strangers!, who stepped in and helped me out.  I could NOT have done it without their help and support.  Our home made it to the market on March 8th, and we are really hoping for a good offer soon.  Jonathan’s disability pay just kicked in, so it’s about to get real.  In the midst of all this struggle, God has definitely been propping me up.  Without His grace seeing me through, there are many days I probably would have just curled up in a ball and given up.  He sustains me, and many times He uses all of you!  Thank you so much for all the love and support.  I will try to do better at keeping up with updates now that I’m feeling better.  God’s got us, and it’s going to be okay.  I honestly don’t know how this all plays out yet, but I really do have peace that we’ll be okay.