It's November 1st, 2016.
I've been diligently writing Drew's story since school started last year, and I've made it this far, to this day.
I am ten months into the story that has included some tough weeks. Weeks where I couldn't hardly continue, remembering the specific suffering my Drew endured along his journey with childhood cancer.
I saw those weeks coming--the bowl obstruction, when stem cells collected, infection during transplant, and when Drew got C-diff, to call out a few. They were trying weeks six years ago and were still hard this year to go back through and record the details.
It's not like I'd forgotten the three days he was hooked up to a six-foot suction tube from the wall to rest his digestive tract during cycle 3, or the way the bone marrow stimulant shots made his bones ache before each stem cell collection attempt, or just how many lines he had running drugs into his body at certain times. But those details were just tucked away, left where they had been placed six years ago.
And it hasn't been only the particularly difficult weeks that have been hard to revisit, but remembering the general feelings found in the parent's experience of childhood cancer. The exhaustion from countless nights of administering medications and changing bedding and little boy jammies after night-time pukes; the homesickness and missing the rest of your family during long hospital stays; and worst of all--the helpless feeling of wishing you could take the place of your child and give them a break from the sick and the pain.
Feelings that become so familiar and constant, you almost forget how heavy they are as you move along on your child's journey with them.
And that's where I am today, where I pick up the story. On the day we met with the Oncology team on the day after Halloween to discuss the 2 new spots of Neuroblastoma. They showed up on the last scan before we were supposed to begin immunotherapy. We learned that day that Drew would not survive this disease, his prognosis had changed to terminal. It was actually the beginning of what would be the end.
Most of you know how the tragedy unfolds. How in just over 11 weeks, Drew would leave us and this world behind for a better place. Cancer would end his life, but his soul--his sparkle as we explained to Molly--would finally be free of the weight he'd carried in his body for most of his short life.
As I brace to bring the book, Drew's story, to a close, I'm fantasizing about ending it my own way. Rewriting it so that my boy lives and is here today instead of taking his last breath before he even turned three.
It might follow this rough outline:
The scan that everyone anticipated to be clean, was indeed free of disease. Drew and our family had yet another celebration on the heels of ringing the bell after radiation before beginning five cycles of immunotherapy.
Each round was difficult, as warned. There were some long nights, some scary moments. But God was with us, as always, and gave us strength to prevail. We learned some more lessons on gratitude, trust, and joy which added to our faith.
Drew continued to grow up in his last phase of treatment. He graduated to a big boy bed, finally moving out of the crib. We cheered him on as he learned to use the potty for good--ushering me in to a diaper-free season the more traditional way.
What had become Drew's signature bald head filled in with thick, darker hair. It only took him a week to transition back to table food after removing his feeding tube, and the physical transformation was striking from just six months earlier when he was in the heart of treatment.
He was fitted for hearing aids and that lifelong journey began. There was a sharp learning curve, but all of us got used to Drew's new hardware quickly. Although it was hard to fine tune so-to-speak, make adjustments to them with a two year old's input.
Finally, we finished immunotherapy, and plans were put together to go on our Make-A-Wish trip. The last hospital stay was complete, the last pill was taken. Drew successfully completed cancer treatment for the very dangerous stage 4, high risk, neuroblastoma making him a survivor just before his third birthday. A birthday we celebrated in Disney World, where wishes really do come true.
Today he is a living reminder of God's faithfulness and mercy. Drew's sparkle still fills our home, and his favorite thing to do is cheer people up, make people smile. He has all the energy of a little boy, but now in a big kid body. Gratitude fills my heart every morning when I wake up with my family, my two ducklings. They are in 5th and 3rd grade, and we continued to live each day to the fullest, not taking a moment together for granted.
I wish I could write that out, and somehow it would be true. Like I could alter the past and create a new reality with my keyboard. I think my narrative sounds pretty good, pretty realistic. Not without hardship, and honoring God.
But it's just a fantasy. Wishful thinking. The real story is much more dreadful, more heartbreaking.
Looking back, much like at the time, the biggest emotion I feel at this turning point in our story is disappointment. We were so, so disappointed that after all we had been through, after all the prayers and hope, it wasn't going to work. The cancer would take over Drew's body, and put out the light in our family that we loved so dearly.
I've wrote before about asking why. How I decided there was never going to be an answer to why that satisfies this mother's heart. To me, there always could have been a better way. Some other plan that would have accomplished as much but would have allowed me to keep my son.
This way is just not fair. Not fair to my Drew, who endured, cooperated, and trusted us the whole way. I've had to pause on my writing days to cry for what happened to him. All those hard weeks that he didn't deserve--no one does--and remembering his smile through it all. His drive to just be a little boy, despite what was going on around him and to him.
God has reasons for why he allowed Drew's story to end as it did. I just have to keep trusting that someday, I'll understand.
I know in my heart that Drew understands. For a while now I've had a strong feeling that Drew knows all that came of his suffering, maybe even all that is still to come, and he'd do it all again. The pain wasn't too much, the ending wasn't too disappointing. The cost wasn't too high for what it brought to the world, for what it fulfills in the Master's plan. Time and time again as I've sat and cried this year for what my Drew silently endured, I've been given that peace, that reassurance that it's okay. Drew's okay with his story, from beginning to end. And if that's true, then I guess I can be okay with it, too.
No, I don't have my son here as a living reminder of God's faithfulness as I would in my wishful account. But is living today in Drew's memory just as powerful a reminder of His faithfulness? Is the shocking and sorrowful ending the Lord wrote more effective at displaying His goodness and love? Would it be as impactful of a memoir to write if we had lived happily ever after?
There is another place we see God's faithfulness and provision in this reality--through Warrior Wagons. An organization ran in Drew's memory, that brings joy and hope to families on similar journeys. We may have begun the program if Drew had successfully completed treatment, but certainly not when we did and with as much energy out of the gate. Warrior Wagons was born from Drew's death, and today we've shared his legacy with over 300 families at 3 different hospitals.
When I switch between writing the book to Warrior Wagon work each week, I'm thankful for the reminder that Drew's story really hasn't ended after all. His life continues to cheer up and make people smile to this day. We have to look a little harder for his sparkle in the world, but it's still here.
Yes, there is goodness in God's ending of the story, my head knows there is. My heart realizes it, too.
I really want to get through this initial stage of the book, finish the first draft. Like I said, I've been working on it now for a year, I started when Molly went back to school last year. We've continued to live our life as I write, celebrating holidays and taking vacations. But I plan to pick up the pace a bit here, in an effort to have it done by Christmas break. It will be nice to not work on it during the holidays. Have some relief from routinely recalling these difficult memories.
I've covered a lot so far and have actually gotten most of the way through. This last part though, the last two months, I know are going to be a challenge to my resolve. But you know? The first 10 months of the journey haven't been easy to put together. Just like in the story itself, I will rely on the Lord to give me strength, inspire the words, and carry me through to the last events of Drew's life.
I won't include my version of the ending of our journey in the book, even though I'd like to. No, I will complete this story with God's ending. Continuing to trust that it is actually the best ending. Knowing it really isn't an ending at all, just the beginning of a new chapter for all of us.
