We are in Orlando, in a hotel which charges $12 a day for buggy “high speed” internet and $7.95 for a room service glass of milk. It’s got sweet art on the walls though, so I suppose they justify it. And don’t worry – we DO have a mini fridge which we promptly filled with a gallon of milk from Publix.
Checked into the hotel last night around 10pm, and after an alright night we spent most of today at MD Anderson and Arnold Palmer hospitals here in Orlando – which I have to say physically are incredible facilities. Beautiful architecture. By 10am we were at MD Anderson meeting with the radiologist, who has a name that would instantly double the length of this paragraph. 😉 He hadn’t had a chance to look at our scans, since us coming here was pretty abrupt, but the tumor on Ezra’s eye is the only one he’d be working on, and it’s obvious enough by looking at it what he needs to do. He said without looking at the scans he knows for a fact it will need 10-20 days of radiation, and will be able to tell us more precisely this week. That will be on a Monday-Friday schedule, of course, since drs don’t work on weekends, so a minimum of 2 1/2 weeks, max of 4 on radiation. It will be daily, with anesthesia, just as it was when we did it on Ezra’s abdomen at St Joes earlier this year. The radiation is purely for “comfort” as the trial we’re on should be working on the tumors, but the one on his eye needs to go down fast since it’s getting painful for Ezra. The radiation will not kill it, but will definitely shrink it.
After meeting with radiation we walked across the street and had a quick lunch in an extraordinary lobby made of rounded glass (imagine being inside a 60 foot glass golf ball) before heading over to the hemoc clinic here (hemoc means hematology/oncology – study of blood and study of cancer) to meet with the folks who will actually be administering the Nifurtimox trial we’re here for. We were in that room for hours, chatting, waiting, and chatting. The goal of the trial is basically one thing – giving us some extra time with Ezra.
The full trial runs 6 months, and is cancelled any time the tumors start growing again. It runs in 3 week cycles of a week of chemo, 2 weeks off. The trial drug, Nifurtimox, is taken 3x daily throughout the entire thing – just the chemo requires us to be in the hospital. We’d be getting chemo Oct 18th-22nd (next week M-F), Nov 8th-12th, Nov 29th-Dec 3rd, and again in late December. Again, this trial has shown promise in many kids with worse situations than Ezra’s – giving children with only weeks to live an extenstion of 1-2 years on life. Still, there is no one who has had this aggressive of a relapse and survived longer than that.
I struggle to find reasons for this. I wish I could tell you I have an unwavering faith which constantly assures me everything will be “alright” and Ezra will be healed and live til he’s an old and ornery man. But that is not my state of mind. I know God doesn’t always heal – and I don’t know why. I prayed with every fiber of being I have Price would be healed, and today he waits for us to see him again in eternity. I prayed for years for my best friend’s father, who laid in a coma for 3 years before dying one night. With the same hands and mouth, I have prayed for people who had been blind for years and seen their sight restored. I have seen the lame walk after praying God’s healing in their life. I don’t know the reasons God heals some and brings others home, but I ask Him every night and every time my eyes or mind touch on my son to heal Ezra. I cry when I’m driving and see a billboard of a father and son. Commercials showing kids play make me change the channel. I find myself thinking of all the things my dad and I did growing up and wondering if I will have those moments in the role of a father.
There’s a guilt that comes with this dance of faith and doubt. In Mark 9, there’s a story of a father who’s son is “possessed with a spirit which makes him mute” – and brings his son to Jesus for healing. In verse 22b, he says this: “if You can do anything, take pity on us and help us!” 23And Jesus said to him, ” ‘If You can?’ All things are possible to him who believes.” 24 Immediately the boy’s father cried out and said, “I do believe; help my unbelief.”” That’s where I’m at. I KNOW God can heal. I’ve seen it, I’ve heard it – I’ve even been the vessel He moves through. But I also know God sometimes DOESN’T heal; not here at least. Not the way we may think – this “genie in a bottle” mentality we developed somewhere along the way. I don’t believe it lessens who He is, and I fully believe God is as consistent, powerful, and good today as He’s always been – I just think we misunderstand sometimes what we’re promised. Eternity is ours, yet the earth is cursed. I may not get to know Price here, but I will see him again. With Ezra… I pray for miracles. The thing is – I feel guilty sometimes with this doubt. Should I believe constantly that God will heal my son here? Or isn’t it better to constantly believe He is who He is, and whether I live 2 years or 102 years I will gain eternity at the summation of this life? I feel as if I’m saying my goodbyes to Ezra, and I feel guilty for feeling this way. My faith in God feels unchanged – my understanding of life, eternity, faith, and entitlement feels different.
So why tell you? Why do you care? I don’t know. It’s personal. You may judge. You may think less (or more, I dunno) of me. But I want you to feel what I’m feeling. I want you to know it’s ok to be hurt. It’s ok to not understand God and still know He is good, real, and attentive. Hurt hurts. I can see pain in my wife’s eyes, and it makes me be even closer to her, even more attentive to her need and letting her know she isn’t alone. God does this same thing to me – I am the father in Mark, saying “I do believe; help my unbelief.” It sums up my moment.
I know God can heal. I pray for it throughout every day. I’m trying to be transparent here; I want other people with these same struggles to know you’re not alone. You’re not alone following hard after God and having hard patches along the way. Robyn said early on in this – if the end result is heaven, our sadness is simply in not knowing those we lose more here before we get there.
Anyway I’ll stop… I usually try to put a nice cap on these updates, but I don’t know… I’d rather just tell you what I’m feeling. I long ago stopped worrying about if it fits in a box – I just know my heart is after God. The lessons we learn along the way we just have to pray we use effectively to become better while we’re here.