After being re-admitted to the hospital in Sunday’s early hours, Chase is driving me to that place. Why are the fevers so high when he still had white blood cells? Why is he so visibly ill when his tests are coming back negative? Why is his blood pressure so low ….does he need platelets …does he vomit even after anti-nausea drugs …why, why, why??
It’s days like today that I hear Tennyson in my head:
“Theirs not to reason why, theirs but to do and die…”
Is that the reality? To do and die?
Even as I question, I am reminded of the verse in Jeremiah:
“For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope.” (Jeremiah 29:11)
If this life is full of God’s plans for me that give both a future and a hope, and I’d prefer not to face it like one of the six hundred riding silently to death, I ask myself…how should I respond to weary days with no answers?
Give thanks.
Give thanks even when it hurts. …when it aches …when there is no human reason for the pain and suffering.
“Give thanks in ALL things…” (1 Thess 5:18)
So this is my answer for today. I may not get the answers I crave for the child lying in the bed, but believing that whatever my God ordains is right and for His glory and my good can free my burdened heart for thankfulness.
Heart in my throat, I looked at the doctor standing masked and gowned by the foot of Chase’s hospital bed. “Have you heard anything on the spinal fluid yet?”
Slowly, she lowered her mask and I could see her huge smile…“Yes. The fluid was negative.”
In shock, I asked her if she was sure it was Chase’s fluid as Bob laughed quietly from his place across the room.
Chase’s spinal fluid–this fluid that has been positive for cancerous, atypical and abnormal cells from day one–is weird cell FREE!
There is a cautious moment to this, as it does not mean that Chase is cancer free. The true State of Chase is something that will be unknown for a while, hopefully only until his evaluation at the end of the month.
There is still a long road ahead for this little one. He’s only 14-16 weeks through a 51-54 week chemo protocol … Encouraging news to the little boy who burst into tears as he thought clear spinal fluid meant no more “fishy hospital.” (Oh, Chase…)
So, as I’ve written many times, we don’t know what’s ahead, but …
Today was a REALLY GOOD DAY.
Whatever may pass and whatever lies before me, let me be singing when the evening comes. Bless The Lord, O my soul!
To all our family and friends who have prayed, encouraged and blessed above and beyond over these last 30+ days, we are profoundly thankful.
For all of you who couldn’t be with us – here is a small clip from Chase’s graduation.
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)
