When the Price is Right

October 23, 2019, just a Wednesday. I can't recall what we were doing, only that the kids were playing in the beautiful sunshine of the afternoon, and I looked over to see my middle child dreaming in the sun. She was studying a leaf, or maybe a flower. She stayed like that long enough for me to try and get a good shot. One picture has the unmistakable curl of our dog's tail in the foreground. The next features the toddler, dressed in her hand-me-down ladybug Halloween costume, preparing for the following week's attempt at trick-or-treating, stomping away in a huff. I didn't want Viv to catch on that I was being Camera-Mom, so I grabbed a few more shots and went about my business. My phone shows that the weekend before that, we had gone on a mile-long hike along the river that backs our home. It was an adventure for all of us, parents included. We had snacks and backpacks, a stroller, more snacks, bug spray and sunscreen. The sunlight was so remarkable, and the leaves were at their height of color, so it was the perfect opportunity to grab family selfies. October 25th has us dancing in the living room, the girls dressed in matching t-shirts, singing and dancing together. On the 27th I recorded their frosting-smudged faces as they made jack-o-lantern Rice Krispy Treats. Then the photo roll skips to mid-November, then early December...Viv stopped wanting her picture taken once her hair started to fall out.
The hair thing doesn't start right away, it turns out. It took maybe a month before she was mostly bald. She has some strands of hair left, still, even 4 months later.Viv has long, shiny brown waves. It took years for her hair to really start to grow to begin with. She has the perfect little head and I always thought that if she ever fancies a pixie style cut, she should have no fear about pulling it off. She had her first haircut when she was five, that's how long it took for her hair to grow any substantial length. It broke my heart to tell her that it would all fall out, now that it was starting to achieve the glamorous length for which she had yearned. "It's just hair," we'd say to her, and to each other, day after day. This is a small price to pay for keeping her alive. When you look at it that way, of course it is. The hard part is, it's not the only price to pay. Sure, $5.00 is a small price to pay for a mortgage. It's only when you add in the other $1,459 does it become burdensome.
We are in the woods far too deeply at this point to begin to add up all the small prices she has paid, and will continue to pay. She was so excited to be something "scary" for Halloween, this year choosing to be a vampire. She was admitted to the hospital in the early hours of October 30th. Her stepfather lovingly packed up and delivered her vampire costume the next day, complete with plastic fangs, handmade (read: sloppily made) blood-red and rhinestone choker, and bright red lipstick that I had allowed her to purchase just for the occasion. The hospital staff assured us that they celebrate Halloween in a big way, and that it wasn't to be missed. Vivian couldn't walk or get out of bed on Halloween. She missed the celebration to try and sleep off the pain in her knee.
We made it home for Thanksgiving, though she didn't leave the house. She was still using a walker to get around. She had to skip the Christmas parade in which she had been selected to play the role of Becky Thatcher to her brother's Huck Finn in the town's Mark Twain themed float.
She hasn't been to school in 4 months. She missed her sister's 2nd birthday while in the hospital in February. She hasn't been to a store or a social event in same. The sum total of her social life boils down to her older brother begging her to play Minecraft with him, and watching other children play games in YouTube videos. Everyone else in her life is in scrubs. That's a small price to pay for her life, though. Surely it is. Surely.
The Tuesday after she was released from her first month in the hospital, the Tuesday that falls two days before Thanksgiving, we were back in the hospital for a long day of tests and surgery. She was slotted for a bone marrow biopsy, a mediport placement in her chest, removal of the pic line that had been in her armpit for 3 weeks, and an echocardiogram to check for blood clots. She was ordered not to eat after midnight. Her surgery didn't begin until about 2:30 in the afternoon. By the time they wheeled her down, we were all in tears. She'd been through more in one day than most of us would be able to stand. And her surgery was just starting. Waiting for her to come out of the operating room was one of the most excruciating experiences of my life. I wanted to both implode and climb the walls. I wanted to sleep forever, until it was over, not wake up until I was sure it was safe. Our waiting room chairs faced the doors to the pediatric palliative care unit. Small price to pay.
Overall she was super lucky and made it though most of the winter without having to be readmitted to the hospital. Her good luck streak ended January 27th, when, just as we were leaving after a long day in the outpatient clinic, her fever spiked remarkably. She became pale and started to shiver. There was nothing to do to warm her up, and it was clear that her body was battling an infection. While nurses and doctors made arrangements to admit her, I could do nothing. Nothing for my child except watch her tremble and cry. I was frozen with fear and all I could think about was you never realize what lengths you will go to for your child until you realize you are out of lengths. I knew right then that if I had to carry her across burning deserts to get her to safety, I would. If I had to forge rivers with her on my back, I would not think twice. I would enter any and every lifeboat for her and with her to keep her safe and make her well. Thank god for modern medicine. Thank Alexander Fleming for antibiotics. After 11 days we were sent home with steadily rising white blood cell counts and robust platelet numbers. And best of all, with her bone marrow tests showing no leukemia cells present. She was starting to do this, she was halfway through the first six month hellscape that is typical B-Cell A-L-L protocol. The price, the price that I wasn't paying, but instead, watching my daughter pay, was beginning to show returns. Every poke and re-poke with a needle into her mediport, every long drive to and from the hospital with a barf-bucket on her lap, every night sleeping behind a hospital curtain while nurses come and go on the hour, every missed holiday and class project, every CBC and every bone marrow biopsy, every strand of hair left on her pillowcase. We were finally getting close to that payoff-- remission.