Reflections at 3 AM.
REFLECTIONS....
I have new "wallpaper" on my computer. I was flipping through the gazillion digital pics filed away on the computer and found this one. It's of the boys sitting in front of our Christmas tree, smiling from ear to ear, dressed in their special Christmas outfits, and so stinkin' cute I can't stand it. It was Christmas 2003 B.C. - Before Cancer.
It wasn't exactly before though. Just about 3 weeks before we knew it. January 10, 2007 marked the 3-year anniversary of Ryan's diagnosis of Stage IV Neuroblastoma. I find myself staring at that picture trying in vain to see some sign of what was to come. He looks fine. Healthy even. How could he have been SOOOOO sick???
Okay, we knew something was wrong. On and off low grade fevers - kids get fevers, right? Pain in his legs - growing pains? Did you fall? Did you bump yourself? Tell me if it still hurts tomorrow. He really never complained much at all. We'd push him to get moving thinking he was turning into a couch potato.
Back and forth to the pediatrician, then to the orthopedist, then to have labs drawn. Then the awful call saying "His labs are really out of whack. You need to go to Children's Hospital."
"Tomorrow?" I ask.
"No, NOW!" "North Shore Children's?"
"No, Boston!" Gulp!
How could we have known that picture would represent our last "normal" Christmas. Oh, sure. There's a new normal. The normal of Paul and I looking at each other at some point during the holidays and thinking the same thing. Thank God we have him for another Christmas. Which one of us is going to say it out loud first?
Christmas of 2004 sucked. That was after 11 months of treatment and less than a month after the doctors told us they no longer felt Ryan was curable. And we learned a new term: refractory disease (i.e. not responding to treatment).
Thinking back on those early days of this odyssey, it seems so surreal. I remember being taken aback the first time someone referred to Ryan as "a Jimmy Fund Kid". No, no, no, no! Those are the kids I've seen for years on the Jumbotron at Fenway Park. Y'know, OTHER PEOPLE'S CHILDREN!!
On our first night at Children's Hospital, I was sitting in our room looking out into the hallway when a little bald child walked by dragging his IV pole along.
I calmed myself by saying it was also the Hematology ward and they think Ryan has some sort of blood disorder. About a week later we'd be giving Ryan a buzz cut so as to lessen the shock of him losing his hair to chemo.
I have those pictures too. The "before" and "after". And we have the hair as well, in a little baggie, in a drawer. Why then the shock the first time he lifted his little head off the pillow and there was his beautiful blond hair left behind? Because it screamed at us, "Okay, this is really real now".
Ryan still has the red cap he wore when he was bald. It's not really even red anymore. It's so faded now it's sort of a pale grayish-red, if there's such a color. We were in a boat on a lake one time and the red cap blew off of his head into the water. There was no question and no hesitation. Paul dove in to retrieve "my haaaaat". Ryan still likes to wear it from time to time. We will keep that cap forever.
It's funny the things you forget until something unexpectedly drags you back in time. I found in the glove compartment of my old car as we were cleaning it out last summer the pumpkin orange sheet of paper which got us to the head of the line in the ER at Children's Hospital, reminding me, with a jolt, of the fevers and frantic midnight rides to Boston armed with said paper.
Instant flashback and a shudder.
That paper then led me to remember how the car always had the "puke bucket" at the ready - along with several more puke buckets strategically placed throughout the house. In the trunk would always be the small pre-packed suitcase for those unexpected hospital stays. A routine clinic visit could suddenly turn into an in-patient event with the mere beep of a thermometer. And many times it did. You learned to expect the unexpected.
Back then, our lives were a juggling act trying to coordinate visiting nurses and keep straight the truckload of medications they sent us home with. This one every 8 hours, this one every 12, this one every 4. WHAT'S AN "ml"??? Is it the same as a "cc"????
Wow, did we really administer IV antibiotics at home ourselves? Yep! And catapult out of bed when the pump started beeping for some reason or another in the middle of the night.
And we did his IV pre-meds before his at-home chemo. Oh, and the IV fluids before and after. And let's not forget those dressing changes for his central line.
I remember being scared out of my mind when the nurse was training us using a doll to demonstrate the dressing change. "It may seem overwhelming now, but it'll be old hat before you know it". And it was.
So often we'd be lying in bed at night and one of us would say "Did you flush Ryan's lines? No, did you? No. Oh, crap." Gotta get up and do this without waking him. Those horrible tubes hanging out of his chest. I came across some old shirts of Ryan's a few months ago that have little holes in them from me safety pinning his line to his shirts. Another flashback and a shudder.
Have you ever had one of those permanently-etched-in-your-mind-freeze-frame-moments? One of ours came in April of 2005. Were we really pushing Ryan down a NY City street in a wheelchair??? Is this really our life??? At that time, we were hanging our last hope of a cure on yet another barbaric treatment. Our "Hail Mary" pass. As we near the end of his 2 years of antibody treatments in NY we can now say it was all worth it - but it sucked anyway.
And it all sucked for poor Matthew too. That kid never knew who'd be getting him off the bus, where he'd be sleeping, how long before he'd see Ryan and mom, etc. We tried to give him whatever attention hadn't already been sucked out of us by the demands of Ryan's illness. Ryan needed us MORE, but Matthew still needed us too. Years from now he'll probably tell us how we failed him miserably and he's scarred for life. Heck, we all are.
Another freeze-frame moment came in Spring of 2006. Ryan and I were in NY for another round of antibodies. He was lying in his bed at the clinic, watching TV, waiting for them to start his pre-meds. Out of the blue and without any warning he sat up, looked at me and asked "Can neuroblastoma make you die?"
He had never asked before.
Early on we had made the decision not to tell Ryan or Matthew the possible worst-case scenario. Why terrify a then 4 and 6 year old? Plus we felt that if Ryan BELIEVED he'd get well, that that was a powerful aspect of his healing process.
So, after some stammering, I made the split-second decision to fess up to the reality, while quickly reassuring him that his cancer was gone and he was doing fine. He just said "okay" and went back to the TV. This exchange overwhelmed me much more than it did him.
Practically every one of these things we've done and experienced have been done and experienced by countless other families dealing with pediatric cancer.
Many have dealt with far worse. We're not unique or special. In fact, as we've come to realize, we're very lucky. I wouldn't have said that in 2004. However, three years has given us some perspective.
In that time, we've said good-bye to far too many children. We, the cancer parents, instinctively seek out other families in our situation.
We commiserate with the only people who truly know what we're going through, we share information and become "combat buddies".
We scour the web looking for success stories to help us believe there'll be a happy ending - or at least the possibility of one, and share it with the other parents......."Did you see so-and-so's website? They're 'x' years NED".
It's a double-edged sword though. When one of the children we know dies, the cold slap of reality knocks you on your ass and breaks your heart.
You're torn between the very genuine desire to reach out in support, comfort and friendship to these parents, yet at the same time, it's terrifying to look into the eyes of your worst nightmare.
Combine that with survivor guilt. Why is Ryan okay and their child isn't? Do they hate us for our good fortune - however tenuous it may be? I don't think so. I think they are sincerely happy that Ryan is well. And yet ache with the unanswerable question of "why not my child too"?
We go through periods of compulsively checking other kids' websites, then stop for a few weeks when it becomes too much and we need to stick our heads in the sand for a while, then go back to checking again.
It's been hard knowing how to navigate between these two worlds we live in. The cancer world and the regular world. It brings me back to the combat analogy. It's like the soldier who must adjust to the battlefield, then adjust to home life, then get sent back to battle and so on.
The intensity of Ryan's treatments here in Boston in the past and now in NY, plus the intensity of what our friends are going through makes it a bit tricky to just drop back into the everyday life of school lunches, the bus stop, homework, laundry, grocery shopping, etc.
There's a definite "decompression" time when I feel not quite of either world. It's hard to relate to other people's everyday problems. I am disappointed with people who don't seem to care about these kids and their suffering as much as we do.
I guess they see that Ryan is doing well so they can just push the "unpleasantness" away. But we can't. We see it all the time and know the beast may be nipping at our heels at any moment.
Relapse is one of the ugliest words in our vocabulary and the fear it represents is with us every minute of the day. Ryan gets scanned every three months and we wait for the results which will tell us if we can breathe for another three months or if we will be dragged under again.
Amazingly, Ryan seems to transition back and forth quite easily. I guess he doesn't really know any other way of life. I guess he can't remember his carefree years of 0-4.
If there's an upside to all this I suppose it's the opportunity it afforded us to meet some of the most amazing people on the planet.
Not only these courageous little warriors and their devoted parents, but the dedicated people who work in pediatric oncology.
They don't HAVE to do this. They CHOOSE to.
The English language has no words grand enough to describe these angels on earth. "It's the successes that keep you going" was the answer we got from Ryan's nurse Elizabeth to our question of "How do you DO this every day????"
She always came into Ryan's room with a bright, cheerful smile. Ryan only decided recently (with a sigh) that he probably won't be able to marry Elizabeth after all, although he still insists on visiting her at the hospital when we go in for a clinic visit.
And then there's the Child Life people who make it their mission to ensure that these kids WILL HAVE FUN and DO KID THINGS even when they're tethered to an IV pole, wheelchair-bound or confined to bed. Spin Art was Ryan's thing. A pain in the butt, time consuming thing to set up if there ever was one, but Sarah did it every time he asked, without hesitation. If these folks don't have their spot in heaven all sewn up, there's no hope for any of us. We are truly richer just for having known them.
And of course the incredible family and friends who have stepped up to the plate time and time again. Without their love and support I don't know how we would have made it this far. We are blessed to have these very special people in our lives. You know who you are. ;)
Although I really do think we had our priorities fairly straight before all this, AND WE REALLY DIDN'T NEED THE DOPE SLAP, THANK-YOU VERY MUCH GOD, it certainly did open our eyes to look outside our little corner of the world.
Like so many, we had no idea of the magnitude, the sheer numbers of children suffering and dieing because of cancer.
How naive and blissfully ignorant we were. We'll never be the same is a huge understatement. Maybe that's a good thing. Maybe that's the point.