I used to look forward to the adventure of staying in a new hotel. It was such a luxurious break from the norm to be spoiled by all the amenities. I loved being greeted by an impeccably courteous staff, relaxing on the lounge chairs by the over-sized pool, peeling back the perfectly made bed and savoring the feel of the crisp, cool sheets...so much decadence. But tonight, as I folded Maddie's wheel chair and tucked it into the corner of our hotel room, I wondered if it would fit through the bathroom doorway or if I'd have to carry her in the middle of the night. I realized I hadn't even taken a moment to appreciate the opulent lobby when we arrived. We had no plans to visit the spa and I wouldn't be calling room service to splurge on breakfast in bed. Accommodating a steady stream of doctor's appointments has fast become our new way of life and tomorrow we will meet with Maddie's oncology team to assess her progress after her first round of chemo. Making the two hour drive to the hospital and returning home the same day was too much for her, so we decided to split it up with an overnight stay. Talk about a shift in perspective- this hotel visit was not about indulgence. It was about comfort and rest; two things I will never again take for granted.
I haven't had much of either since learning Maddie would be engaging in a battle for her life. None of us saw this monster step in the ring with her, and by the time it landed its first obvious punch, it had already gone several silent rounds and earned the upper hand. We weren't prepared for this fight, but we've never been quitters and we aren't about to start quitting now. Our defense is made up of a rigorous schedule, aimed at preventing Maddie from being knocked out by this heavyweight. When we aren't at a doctor’s office, or tossing and turning on a cot next to her hospital bed, we are keeping pace with a demanding new regimen. I have alarms to remind me I must be ever aware of her temperature now. Vigilance is key and being in tune with everything is essential to avoiding complications. Her medication, hydration and eating schedule comes complete with a second set of alarms and journals to track every morsel, pill and sip of fluid. There is a physical therapy protocol, and supplemental work we must do to keep her moving at home, even when she cries because her bones ache. There are phone calls to and from doctors, near and far. Some offer hope, some offer treatment advice, some offer clinical trials, and some admit they cannot offer anything at all to help. Despite the fervent tempo, what has exhausted me most is the thinking; a pursuit I've decided may be worse for me than the cancer is for Maddie.
Just before Memorial Day, I found myself with a rare moment to unplug. Maddie was napping peacefully, so I decided to relax in front of the tv. No sooner had I kicked up my feet than a commercial caught my eye. A grocery store boasted the lowest prices for every BBQ need while a happy family joyfully celebrated in the background, complete with kids jumping in the pool and Dad flipping burgers on the grill. A wave of resentment swept over me. Folks were busy making picnic plans while I was desperately praying Maddie would be with us to celebrate Thanksgiving and Christmas this year. I stared angrily at the television, hot tears gliding down my cheeks and my pulse able to be felt from the surface of my skin. I was furious this happened to us; to her. She didn't deserve this. I wanted to go back in time and erase the last month. I wanted to return to when I fussed over the kids swimming too soon after eating. I wanted my greatest worry to be that we didn't make enough macaroni salad. Suddenly life was so complicated. I felt like falling apart. Nothing is the same as it was and I fear it will never be. This cancer is trying to steal everything that is normal from us.
Watching a child suffer is one of the most excruciating pains a parent can endure, second only to losing a child- a looming threat that is chasing us even as I type this. As much as my soul aches and as terrified as I am, I feel guilty for thinking about myself because I know Maddie’s pain is worse. What a double edged sword for all of us. To be fair, I don’t get a lot of time to just think, and I try not to dwell or pity our situation. But let’s be honest; I wouldn't be human if I didn't confess that I’m heartsick. And frightened. At the same time, I recognize that I have to be stronger than my thoughts; braver than my fears. I can’t let some dark and evil disease rob me of my perspective, and I believe it is trying do just that. In addition to the awful things it is doing to my sweet Maddie Lane, this hideous and ugly cancer is trying to change the way we think. It is trying to make us lose hope.
We are struggling. In every way you can possibly imagine, we are struggling. Nobody has offered us the instruction book for getting through this, so Mike and I are trying to keep it simple and focus on doing the next right thing before us. Perhaps the greatest paradox of this moment is that the more we learn, the less we know. We are aggressively researching every detail and every fact we can find about Maddie's cancer (multicentric osteogenic sarcoma) but its so rare, even the experts are guessing. We are relying largely on our instinct and we are leaning heavily on our faith as we relentlessly pursue hope. Though we are faced with the cruel uncertainty of not knowing whether or not we will find the right solution, we will NEVER lay down and willingly give this cancer the control it wants. We will leave no stone unturned on our quest for treatment options and will cherish every positive moment we are blessed with in the meantime.
If you are interested in learning more or in supporting Maddie's Fight, you can do so by following the link below.