Things are going alright with radiation – there are some minor side effects which are immediate, like a darkening of the skin where he gets radiated (hey, people PAY for that normally), and throwing up sometimes. His appetite is going down, and this morning he actually had to have his treatment cancelled for the day and get platelets instead – radiation messes with your body. Treatment should resume in the morning or on Thursday, with an extra day or two tacked on the end to make up.
We’re going ahead with the 3F8 treatment (I’m pretty sure we always were, I was just trying to stress the severity of it and the difficulty of the decisions we keep getting handed…) which will start roughly 3 weeks after the radiation is finished. We will have 5-6 treatments most likely, which are a week in the hospital (well, 4-6 days), then 3 weeks home. Once that’s over we’re pretty much done with intense treatment.
The numbers for neuroblastoma are encouraging and discouraging at the same time. They are continually on the rise, although current survival rates without future “events” (read: getting cancer again, whether neuroblastoma or a secondary cancer like leukemia – which can be CAUSED by the treatment for neuroblastoma) is 55-60%.
This obviously still gives us a cup more full than empty, but it can be a number that wears on you. Leukemia (firsthand, not as a secondary cancer) has a 96% survival rate without event, for instance. It’s a strange struggle, the thoughts and faith involved with this. On one hand, my faith in God to heal and protect my sons is stronger than ever – but my definition of it is changing. People often say to me – God always heals! Which I believe – but I also know that it’s not always the way you or I picture it. Robyn and I know that full well after the last 9 months. We have gained and lost more since October than in our entire lives. I find it hard to imagine how Abraham made the decision to obey God when he asked him to give Issac to Him. There’s a smallness you feel in these moments. Despite any talent, achievement, knowledge, dollar, or connection I may have – the lives of my family and children are not in my hands. Robyn’s and mine tears and prayer may translate to an eternal life for our sons, but it doesn’t guarantee this one. It’s a deep realization – hard to feel, but rings true. I know in my heart the former is the obvious greater than… but whew, that’s some chewy thought.
If you want to get a sense of God’s hugeness and our smallness, read Job 38-41. It’s an intense depiction of the vastness of God and our inability to even comprehend the fullness of His plans for us. God lays out an awesome description of Himself for pages and pages, telling Job he cannot begin to grasp the reason for some things, and this doesn’t negate God’s unchanging character and continuing promises. Talk about instilling awe.
Here’s a bit of it:
34″Can you lift up your voice to the clouds,
So that an (abundance of water will cover you?
35″Can you send forth lightnings that they may go
And say to you, ‘Here we are’?
36″Who has put wisdom in the innermost being
Or given understanding to the mind?
37″Who can count the clouds by wisdom,
Or tip the water jars of the heavens,
38When the dust hardens into a mass
And the clods stick together?
39″Can you hunt the prey for the lion,
Or satisfy the appetite of the young lions,
40When they crouch in their dens
And lie in wait in their lair?
41″Who prepares for the raven its nourishment
When its young cry to God
And wander about without food?
That’s just some of the literally chapters of it. My point being this – faith in God is not being sure He will grant wishes. Faith in God is being confident in who He is. Understanding the promises given from Him to us. We forget sometimes in order for God to deliver Daniel from the lions, Daniel had to be in a pit of lions. 😉 In order for God to save ALL His sons and daughters, He had to lose His ONLY son.
Charley and Ezra are both doing very well – each is responding to treatments better than doctors expected, and the future looks good for both of them. Robyn is at All Children’s right now spending some time with Charley, and she just texted me he is completely off his vapotherm (a strong oxygen source), and is down to very minimal basic oxygen being given to him. He should be 100% breathing without support soon. He is learning to eat and tearing through milk like a [insert something that tears through milk very fast]. We’re tired still, and we will be for a while. Our faith is becoming much less based on what God /does/ for us, and much heavier on who He /is/.
