need more coffee

(disclaimer – this is a long update)

Yesterday we noticed a swelling on the side of Ezra’s face near his eye, and took him into the ER at St Joes to have it checked out. They thought it was either an infection or more new tumor. After a CT, and waiting through the night here on antibiotics, the oncologist came in this morning and thinks it is more tumor. There is also a lump on his neck. We are waiting on a plethora of scans to be scheduled to know for sure the current situation, which won’t be able to be completed til tomorrow, since it’s a holiday weekend and hard to schedule a radiologist, anesthesiologist, nuc med scans, etc all at once with only the emergency crew on staff. It’s much better to wait a day and have it all happen at once than to do the time slots available today and keep putting him in and out of anesthesia. A dr and 4 different nurses are outside in the nurse’s center calling all the departments working on pressing the urgency and getting the scans scheduled.

We’re sitting on a vinyl couch with thin-but-durable hospital linens strewn across it. My legs are dangling off the couch while Robyn is curled up on the other side, and Ezra is cross legged in the middle of us, eating Froot Loops out of one of those plastic all-in-one packaging/bowl combos. He’s also got Oreos, some sort of Keebler elf cookies, chocolate milk, and the occasional sip of Robyn or I’s mocha. Yah yah, stunt your growth, I know.

The room is white walls and bright yellows, reds, and purples for highlights. Most of the rooms have drawings from past kids all over the ceiling tiles, which they take down and let people draw on, but our ceiling is drawing-free in this room. There’s a stale taste to the hospital air, which never has enough moisture in it and always leaves your skin and mouth feeling dry after staying the night in it. A big light blue metal crib in front of us made by HARD MANUFACTURING GROUP reminds us of a cage with metal bars on the sides that slide up and down so patients don’t try and escape at night. 😉 There’s still blankets bunched up hanging from it’s top bars from where we attempt to block out the night lights of a hospital room for Ezra while he sleeps. Toys with SJCH CHILD LIFE scribbled on them in worn Sharpie are on the bed and floor. Ezra is reading a book with Handy Manny in it.

Nurse’s names and direct line numbers are written on a dry erase board on the wall, along with a green and red poster telling us our room’s direct phone number and what channel the kids movies are on. It’s a little past noon and Facebook tells me everyone is in church or out doing their Sunday relaxing things.

Last night we slept about 3 hours, and Ezra got a couple more. Tossed back in the admitted-in-the-hospital life in the middle of a Saturday when I was standing on stage with my buddy from Seattle about to lead worship and got a call from Robyn I needed to come down to the hospital as it was not looking like the best news. When you have a kid with cancer, life takes second fiddle to the constant hospitalization, scheduled or not. We’ll stay again tonight here, and we’re scheduled for chemo Tuesday… which should still happen, unless it’s pushed to Wednesday while they finish up scans. Hoping not, as the reoccurring cancer needs to be attacked ASAP. The good thing about the chemo scheduled is it’s only a 2-3 hour drip then we can go home each day. If the swelling is tumors, they MAY have to change the chemo… hopefully it doesn’t get changed to something requiring we’re admitted.

Robyn mentioned that although this last year has been far and above the hardest in our life, it has also been the best year of our life. Ezra is growing into a smart, though-provoking, ever-curious and ever-inspiring boy. Charley is getting ready to come home, and we are excited to have him around. Our strength and faith have been tested in fire and strained to the point of breaking, and I fully believe it’s something that in the end will make both more resolute. James 1:3-4 (NIV), “Because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything”. 1 Peter 1:7 (NASB) “so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ;” We have many areas of life overflowing with blessing – our children’s health unfortunately is one area seemingly lacking those blessings. We keep praying, and we know we’re joined by literally thousands of people who have joined here, commented through Facebook, emailed, called, and a million other ways of letting us know you folks are all with us in prayer. Oh, and various entire African villages fasting for days on end.

We were worn out 3 months ago. I’ve heard people who tell stories about being beaten up talk about a point after being hit so much the body just goes numb as a sort of protection method or something, and you just stop feeling the pain until it’s over, when you realize it all and can have a moment to feel it. I think we feel that a lot. The old phrase of “if someone ever laid a hand on my kid…” comes to mind, except we’ve been watching our children get beat up for months, with a helpless feeling and a reliance on God and His sovereignty which lends us strength but doesn’t answer our questions always. You know the feeling in a scary or suspenseful movie like when they’re walking in the dark or something and you just KNOW someone is gonna jump out of some corner? That heightened nerves feeling where your body is tense? That feeling is like a constant undercurrent in our life. I guarantee you our faith is ever-present and gives us joy even when happiness is out of reach… it’s just the unanswered question of the situation wears on you.

It’s good to share these feelings. Maybe they’ll help someone else in a rough time or similar situation. Maybe I’m just writing as a way to get the feelings out for myself. Either way I’m at 8 paragraphs and there’s a scroll bar in this little window telling me I’ve been writing a while. 😉 Thanks for praying with us…