The Darkness is Creeping In

I don't know exactly when it started.......

Maybe with Carter getting the flu, with Julia's increase in her chemo dosages, with the loss of a Wilms' patient whose blog we follow. I hate that I can't remember her with hair. I look at pictures and my mind can't remember anymore. Her 'chimpanzee hair' has become normal to us. I hate not having a plan to our life. Everyday is an unknown and we have to choose based on Julia's condition (and now Carter's, too). I hate the lingering doubts we have when it comes to discipline under our circumstances. I hate wondering if we're doing enough to keep her safe. Is any of it enough?

.... probably somewhere in the middle of it all.

My mind and heart are wrestling with all the unknowns again. When Dr. McLean was reviewing her case with us yesterday. I was struck when he said, "but we still think her prognosis will be good". I don't let myself think about the variables very often, but they are still there- 40% of patients with anaplasia have a recurrence within two years, others down the road. There are around 20 kids diagnosed each year, the cancer will return in 8 of them within 2 years. Then there's the long term effects. Everything that we are doing to save her life comes at a cost of future cancers, infertility, sudden heart failure, liver damage, etc. When she received her blood transfusion, I had to sign a release that I understood there was a 1 in 200,000 chance of hepatitis, a 1 in 900,000 chance of HIV, etc. I don't like numbers anymore. Her chances of having this cancer were 1 in a million.

Nothing we do is safe anymore and I hate it, still. We can't focus on these things and I've found we don't. There are actually days having a child with cancer feels 'normal'. I know that sounds totally crazy, but it just takes over and replaces your life in totality that you forget where the old you ends and the new life began. But I've found we can't ignore it either because it is always there and will continue to come up. I have to find a place for it where the unknowns of the future can reside but our faith and trust in God is much bigger.

As we spend this week quarantined, it really hit home with me that we are living so much of our time waiting for things to be different. We are living in expectation of our life returning to something we recognize. We can't keep living this way. It isn't fair to anyone. This is our life, what we see right now. None of us are promised tomorrow and I don't want to live life waiting to start living. It's a subtle difference, but it's there.

This new life is so different from what we're all used to. We desperately miss our friends. Julia says daily, "Mommy, I need to see my friends." My heart is breaking for her. It is a void I can never fill. We miss feeling a part of our community going to the park, library, church, etc. We miss the schedule of our days and knowing what to expect. The rhythm and flow is completely absent. In my mind I am just waiting until it changes, but I can't keep living that way. We are missing the things we love about summer- the waterpark, the pool, playdates, amusement parks, cookouts with friends, and playgrounds. It is hard not to feel cheated. And then I feel guilty because I am SO thankful and grateful to God that both my children are here with us.

It really hit me when I was reading Pablo's blog, a 6yr old who lost his battle with Wilms on June 27th. He had good days and bad days and they made the most of them all. He was running around at the park with his friends feeling fine just one week before he took a turn and lost his battle. His family has no regrets for how they spent their time. I don't want to waste our days waiting. I want my kids to have good memories of this time we spent together during treatment. I want to know we did the best we could with all of it. I want our love to be enough, our care to be enough, the chemo to be enough...

Lord, give me the energy, enthusiasm, and strength I need to embrace this time in our lives. When fear creeps in, replace it with Your Truth. You have been faithful through every step of this process and we know You will never leave us. We know there will be suffering, but we are promised Your protection, provision, salvation, and love.

This world is not enough, but God- you are always enough.