This time one year ago today, things we "normal" in our little humble world.
Then that evening, our whole world change in a instant. Today "marks" a year since that evening when Scott got sick after dinner, his face bruised and we took off to the urgent care clinic. What does one call such a time marker? Certainly it doesn't fall into the "celebrate" realm. It can never be forgotten. No, January 24th likely will simply remain in our heads as the worst day of our lives to date.
After the shocking state of Scott's face - bruised ear to ear basically - and feeling the lymphnodes behind his ears swell HUGE and feel like rocks, we took of to the clinic. The doc caught my eye and told me in the hall "something is really wrong with Scott's bloodwork, and he needs to get to the hospital". She first used the word "leukemia" with Stephanie, as I'd went to sit in the room with Scott, so the doc could talk to Stephanie alone. We then were off to St. Joseph's ER. I'll never forget it was raining that night. Rarely rains in this area in January, but of course the night a doc tells you a kid probably has leukemia it rains. I think we hit every red light as well. Finally we got to the ER, where we met Dr. Wynn for the first time in the ER. We got put into a room in the "normal" hospital, which Dr. Wynn wasn't happy with, but it was the only option. Getting to the room, we were all just in shock and horror I believe. I remember it being very hard for them to get an IV in Scott. I remember him crying. Stephanie crying. Scott asking if he was going to die. I remember at some point in time collapsing in a chair next to the bed and bawling my eyes out. I don't know for what specific reason.
The next day found us wandering to the day hospital for the first time. The first bone marrow aspiration. The confirmation, yep - your child has cancer. Our first admission to the pediatric oncology ward. Meeting other horrified parents. We actually met Susan, Taylor and Steve in the first couple of days. Themselves having gotten the same horrible news of Taylor's lymphoma, being admitted within hours of Scott. That Friday came with Scott having his port installed, and his first spinal tap (a horror all its own). I remember countless times that first stay when Stephanie and I would just look at each other and have no idea what was going on or what to say.
So much has happened with Scott in the last year, it is hard to look back and remember it all. One can't remember each detail, nor the feelings that came with each trial and tribulation. This very blog is a yardstick for Stephanie and I's mental state at any given time. At times I'll go back to a random month and scan through what we wrote. Lots of times, that stuff is scary. It is still scary today.
A year ago a number of folks would tell us we would find a "new normal". While there is truth in that, the "new normal" certainly doesn't equate to "not being scared to hell and back on a regular basis". The myriad of complications that can arise clog the mind with different fears about different issues. It is always something to worry about.
Scott had his high-dose hospital stays, which were miserable for him and all of us. The kid has had a stroke. What else can go wrong? Most times he's had the opportunity to do something nice, something has gotten in the way. A Labor Day trip to Disney with the American Cancer Society was derailed by his stroke. Several opportunites seem to have come on the week after his 3-week cycle starts - when his jaw, back and legs ache and allow him to walk for a few minutes before basically being so pained he just wants to lie down.
The reality, as we've come to accept, is that fear of such things will be with us from this point forward. Scott will never have a medical issue that doesn't bring the question "could his treatment have anything to do with this?" for the rest of his life.
And that, my friends, well......sucks.
Scott did have his clinic visit today. A whopping ANC above 4200. Got his IV methatrexate and got home rather early today for clinic day.
That's about all I can type right now.