Holding On

This past Tuesday brought with it another long and exhausting day at the hospital, getting a new MRI and meeting with doctors.  It had been over a month since Jonathan first started the Avastin infusions, and it was time for a review.  I was especially interested in speaking with the doctors on this one.  The hope was that the Avastin would diminish Jonathan’s symptoms concerning his vision, lack of ability to read and write, balance issues, and so on.  Unfortunately, not only were his symptoms not at all improved, but he felt SO much worse.  He was left with absolutely no energy, and his state of confusion was at times scary.  The doctors shared my concerns and decided that the Avastin was just not worth it for him to take.  Not only was it making his daily life miserable and not addressing the specific issues we were all hoping it would, it also carried some health risks that are not at all worth incurring with no other health value.  Based on his current MRI, there is also a new area of concern in the front of the brain, but they don’t really know what it is.  The one positive seems to be that the swelling in his brain has decreased a lot.  It doesn’t change anything concerning his tumor, but the swelling was what created a lot of the pain a couple months ago.  They also decided to decrease his steroids again in an effort to get him off them entirely.  That combined with the Avastin still in his system has made for a few especially rocky days.  Yesterday we had to pick up his prescription at the drug store.  I dropped him off at the entrance, and took Zander down a few doors to the grocery store to select something for dinner.  It didn’t take long for Jonathan to meet us there, but he was obviously exhausted and decided to sit while I shopped.  After he got up to use the restroom, he saw me and looked directly at me on three different occasions, but didn’t ever actually see me.  He was acting a bit disoriented walking around, and was very relieved when I caught up with him.  I know that it is so hard for him to feel completely dependent on someone else.  As a man, he wants to care for his family and provide for all our needs.  It pains him to feel so incapable of doing just that.

This is all very unchartered territory.  It seems that everyday brings with it some new challenge or frustration.  It’s all very much a reminder that life does not always go according to our plans, and we have to be willing to trust that God is walking every step of the way with us.  He has faithfully supplied fresh grace every day, but that means that we have what we need, for today, not everything we want.  I’d be lying if I said that this isn’t the hardest battle we have ever had to face.  I’d be lying if I told you that we aren’t exhausted and emotionally spent.  I’d be lying if I told you that my children are doing just fine.  It’s a non stop battle.  I honestly CAN tell you that NOTHING feels like it will ever be alright again.  My heart is filled with agony every day when I see the pain and questions in my children’s’ eyes, and the exhaustion and fear in the eyes of my husband.  Despite how we FEEL, I have to hold on to the confidence that what I see with my earthly eyes is but a shadow of what God sees.  He is propping us up and getting us through each day.  One day we will have our victory.  I don’t what it will look like.  I just know it’s coming, and we need to keep holding on.  Thank you for all the prayers.  You all help hold up my arms during the battle, just as Aaron and Hur held up Moses’ arms when he was fatigued during the battle.