This was my favorite moment of Chase being born and Chase’s favorite picture of his birth because it shows that I too have had an IV in my hand
As I sit here contemplating 12/12/12 and the third birthday I have, at some moments, thought I wouldn’t see, I am overcome and don’t feel like I can adequately summarize this moment in Chase’s life, so here is what I would (and probably will) say to him:
My Dearest Chase,
Today you are three years old and even if you aren’t cognizant of it, this is a big deal. Your Daddy and I have often wondered if you would live to see this day – and that was even before your “baseball“. Since your “baseball” and your “cancers“, there have been many more minutes that we have stood by your bed or talked with your doctors and wondered if we would get to celebrate this day with you. …and here you are! Not only with us, but finishing all your brave days in your “spaceship“. As we often whisper in your ear before you take your nap with the doctor: “Be strong and of good courage, for the Lord your God is with you.” (Joshua 1:9)
Son, Daddy and I are so proud of you. You’re our favorite, bravest Chasey Bear in the whole world!
Love,
Mommy
Happy 3rd Birthday, My Precious Chase!
Joy comes in the morning… (I have much more recent pictures, but this is my favorite – that first smile post-surgery is a perfect summary to this little one’s year)
[Chase’s dictionary of terms: “baseball” = the tumor site (with it’s baseball-like stitching), “spaceship” = the proton radiation room]
At the time I started writing this post, Chase had completed 17 of his 30 radiation treatments. He has now completed 22! These radiation days can be pretty intense and it’s not unusual to start the day in one location (usually home) and end the day in a completely different location (the hospital). So as you can imagine, these days are never, ever dull. [sidenote: “Chase” and “dull” are rarely in the same sentence]
Here’s what a normal radiation day looks like … no wait, scratch that. Here’s what a radiation day last week looked like (we reserve the word “normal” for the days we don’t arrive in an ambulance).
Chase arrives for radiation on the hospital transport. The mask is to hopefully minimize the germs…when he remembers to hold it in front of his face.
There is a beautiful built-in fireplace which runs the length of the waiting room wall (picture a lovely five start hotel lobby) and Chase loves it. In fact, he refers to the radiation center as his “firehospital” – not to be confused with his “fishyhospital” (a name derived from the aquarium in the lobby of his primary care hospital).
First, Chase gets his vitals done (blood pressure, oxygen saturation, etc) – which he hates – and then he gets to put a sticker on his sticker chart – which he loves. The radiation center staff kindly provided a sticker chart tailored to each child so that they can “check off” the days and see the progress they’re making. Chase’s chart was presented to him with Cars characters on it. Do they know him or what?
Here’s the sticker chart from around Day #6…Chasey with his radiation nurse, Roshena. He loves his “Miss Roshena” and I believe he’s actually proposing to her with a plastic ring he found in the sticker box. So classy.
After he’s “cleared” for radiation, we walk to the room he calls his “spaceship“. This is the time when he’s usually clutching the iPod and listening to/singing with 10,000 Reasons. I wish I had better pictures of this room. One of the most striking things is his mask lying by the table. I can actually see his profile in the contours of the mask and I find myself staring at it every time we go in.
The radiation maskIn the “Spaceship” – the anesthesiologist administers the drug as Chase falls asleep on my shoulder (sorry about the blurry quality – this was as good as we could get)
Almost every day, as Chase falls asleep, he says “I’m so brave, I’m so brave...” over and over to himself. It took me almost two weeks of this to get to the point where I wasn’t crying as I walked out of the room.
After Chase is asleep, I leave him in the “spaceship” and wait in the lobby. On this particular day, I had a particularly wonderful “Good Samaritan” who brought me a particularly needed drink. In other words, my dad brought me coffee.
Thanks, Dad!
After radiation is complete, the nurses allow Chase to sleep off the anesthesia for a little while, at which time, I join him in recovery and once they’re sure he’s stable and alert, we are free to go. Sidenote: for Chase, “alert” usually means “ninja“. A side affect of anesthesia for him is crabbiness – which means it takes three people to get him dressed on many days. A sidenote on my sidenote: when you read that last sentence, please don’t shake your head or cry at the thought of adults struggling with a small boy. Picture with a small, wry smile on my face as I type because I love his fight and although it is at times overwhelming, his stubborn, ninja-fighting, never-say-die attitude is a perfect God-given match for his cancer.
This day (that I took most of the pictures), we finished it as we’d started: on an ambulance. Once he got back to the hospital, he was given a little more chemo and then we were able to be discharged!
Back in the ambulance bay and sleeping off the morning – head shining with post-radiation lotion.
…and that is one of our more average radiation days! (ambulance and chemo not included)
I have been considering thankfulness a lot this week. Specifically, how I could possibly be thankful in a season filled with things that I wish weren’t happening. I have found myself praying “God, I know that I’m supposed to be thankful for everything, yet how can I possibly be thankful for cancer?” This awful disease provokes zero gratitude…rather, pain, hopelessness, and often fear. In the face of heartache, how can I be thankful?
My answer is found in the knowledge that I have been already delivered from this fear:
“I sought the Lord, and he answered me and delivered me from all my fears.” Psalm 34:4
This is how I can thank God for the cancer: as I am blessedly pushed to greater dependence on Him in the midst of this season, I seek him more, and as I seek him more the fear is gone, and God’s indescribable grace becomes both how I am and what I am most thankful for in this season.
Preparing for discharge…in time for Thanksgiving!
Blessed beyond blessed with so much to be thankful for in this moment by moment life…
I have so desired to share a taste of who Chase is (more than just pictures) with you. You are always hearing my voice on Chase’s cancer and not his, so here is a small video of him singing “his song” – Matt Redman’s “10,000 Reasons” – the chorus of which is “Bless the Lord, O my soul, O my soul, worship your holy name. Sing like never before o my soul, I worship Your holy name.”
Sidenote: The broadsword is optional.
“Whatever may pass and whatever lies before me, let me be singing when the evening comes…”
Late this morning, I sat on a deep windowsill overlooking a crisp Fall city day and the beautiful lake. On my lap was snuggled a sweet and cuddly bald boy and we were watching a show on the iPad. I sipped my Starbucks americano and thought: “Wow, what a perfect moment. I am so blessed.” It was very like a movie scene…all lovely and right.
The truth is that I was sitting on that sill with my bald boy because he had to be out of the bed so that they could change the bloody sheets – a side effect of his last good IV site giving out and leaking all over. We were watching a movie to distract him from his bruised, battered, and swollen arms, and I was drinking coffee because I’d been up half the night after the bald boy pulled his central line out of his chest (in his sleep) and we had walked through the real-life bad dream of them telling us to keep him flat to guard against an embolism and helping to hold him perfectly still as he screamed and strained against the multiple, bloody attempts to place an IV so that he could continue his medicines and nutrition through the night.
My apologies for the graphic description. It was an intense night.
I guess my point in this is perspective.
There is the bruised, screaming child with the failed IV and there is the coffee and snuggling on the window sill. Both have been my recent reality and neither have cancelled the other out. But in this moment, there was grace given to see the joy.
“…the joy of The Lord is my strength.” Nehemiah 8:10
