“Remember to make the day, the minute, the second count.”
“My daughter Lana, my world, has just turned four. Some of her favorite movies are Frozen, Monsters Inc., and Over the Hedge. If I had to use a word describe her, I would use “bossy.” It fits! She’s been in and out of the hospital since she was a newborn, and as a result, she knows exactly what’s going to happen, when it’s going to happen, and when she wants it done. She’s in charge – her body is her body, and no one is going to tell her what to do with it.
Shortly after her birth, Lana was diagnosed with Neurofibromatosis type 1 (NF1). There is a lot that comes with this condition, but essentially this means that tumors can grow on any nerve in her body at any time. And since nerves are everywhere, no part of her body is off limits. The first tumors we found were behind her eyes on the optic nerve. They were so compacted we couldn’t count them all. As scary as that was, there was a chance that none of these tumors would become active or grow. But unfortunately, this wasn’t meant to be, and as a result, we ended up spending a lot of time in the hospital.
At this time, however, we witnessed a miracle: with the help of our social worker, the Doula Foundation decided to make an exception for us and extended their help beyond Lana’s birth for a full year. At a point when I was basically living at the hospital, they were there with me every step of the way. They would play with Lana while I slept, cooked while I worked, kept Lana company while I sorted through mountains of paperwork. They were complete strangers, but I am deeply indebted to them. We even got to share Lana’s story as part of their fundraiser – it was magical.
Three months later, we did an MRI to see if any of the tumors had grown, and we found an active tumor on the chiasm – the tube that connects your eyes. That’s when we knew we had to begin treatment. The first treatment at St. Jude’s lasted about a year, but had little to no effect, so they started a second drug. And after 6 months on the new drug, an MRI revealed that the tumors were in fact still growing, with an even larger tumor growing behind the chiasm.
With few options left, we later traveled to Memphis to get a second opinion. Their MRI revealed the tumors were still growing, which at that point, they recommended us to be put on a new drug that was still in the trial phase. Each treatment when administered required us to spend three nights at the hospital to see if she got sick, and if she did, the stay had to be extended for two weeks. This whole time I essentially wasn’t working at all, and as a single mom with no support, it was really, really hard.
But through the heartbreaking struggles, we caught another glimpse of the kindness in people to help us. We were lucky enough to be recognized by a company called, Go Shout Love, which told Lana’s story and asked people to purchase items throughout the month — all the proceeds of which went to us. In our darkest time, we got to see the best the world had to offer. I’m so thankful for that.
The experimental drug Lana was put on seemed to work very well at first, but it came at a price. It was the most wonderful drug, but it was also the worst drug. Over two years, it did the most horrible things to her body, but yet, the tumor was becoming less active. And then there was the condition that came with the drug: no matter what, after the treatment ended, Lana could never go back on that drug again.
Three months after her last treatment, our worst fears were realized. Lana’s tumor behind her chiasm was the largest it had ever been and was pushing on her hypothalamus, causing her headaches, nausea, and balance issues. The scale of the growth even shocked our doctors. They said that if we wanted to do something with Give Kids the World, we needed to do it now before the tumor becomes fatal. Right now, at this moment, we are trying to make the best of the situation and not think of the sad things.
But sometimes I can’t help but think of the sad things. I can’t not. I am trying to be happy, but I am so scared. A part of me feels jealous of the other families around me, because their kids are getting to live their dreams with their conditions in remission. They are getting better. But we are here because we are fighting death.
But you know what? Even now, looking at my child and knowing time is short, I find myself thankful and full of love. I have learned in the hardest way to not take life for granted. Before Lana, I used to be a neat freak. I was highly organized; I lived my life through the lists I’d make. Everything had to be planned. But now if I’m doing the dishes, when my little girl asks me, “Mommy, do you want go to play Barbies?” Instead of saying ‘just a second while I finish,’ I say, ‘let me dry my hands.’ I’m never too busy. Nothing is ever too important to put it in front of the things that really matter. I refuse to take a single second for granted. Despite so much sadness, it makes me happy knowing that I can now let life go and make the most of the moment that life has gifted me with.
For those who may be experiencing tragedy, who may be or may one day be feeling what I’m feeling, remember to play Barbies when asked. Remember to make the day, the minute, the second count. My daughter taught me that, and that is something I will cherish forever.”