My daughter Margot was diagnosed with ALL B Cell Leukemia in May 2020 at the height of the pandemic at just 22 months old. I was 34 weeks pregnant with our second daughter and running a company full-time without childcare. So I took an immediate leave only to never return.
We found ourselves on the pediatric oncology floor every 7-10 days for the next eight months for what is called "frontline" treatment. During frontline, my baby received toxic drugs, many from the 1960s that were formulated for adults, to wipe out her immune system and kill any Leukemic cells. Most children with ALL B go into remission just 28 days after diagnosis, but spend years in treatment. ALL B Cell Leukemia is a blood cancer, so if there's just one cell left over, it comes back. Treatment means wiping everything out (with toxic chemotherapy). Fortunately, this type of cancer is highly treatable with success rates of 95% upward, but it's all still very grueling—emotionally and physically.
When we made it to "maintenance" which would last from February 2021 to July 2022, I felt a sense of relief. But the long road ahead hit hard and I finally started to process what we had been through. This was the so-called "easier" part of treatment, which included daily oral chemo, and every three months, IV chemo, intrathecal chemo (via a spinal tap), and a five day round of steroids that left my daughter sore, moody, and restless.
We were told that this was the "good" part. But it all happened during a pandemic, and for our family this meant no preschool, very few playdates, and the loss of any much-needed normalcy. There were periods where I did not see friends for months. It was at the end of frontline that I made the very easy decision to leave my former company. I planned on going back but my husband looked at me and said "Why are you going back? You've been miserable there the entire time I've known you. Sell it and move on." I knew what I needed to do but needed him to say it.
As we get closer and closer to the end, I find myself trying to process that half of my motherhood experience has been spent in cancer treatment. My younger daughter just turned two, which is the same age Margot was just months after diagnosis. And sometimes, I have to remind myself that she's ok.
I'm already dreading people saying "it's over!" in a celebratory way. Yes, we are going to be done with chemo and that is a significant milestone. In about four to five months Margot’s immune system will be back to normal. She can go to preschool and have playdates. We can start to live normally and finally take our girls to Disneyland. But she has five more years of regular blood work before she's considered cancer-free. This started when she was 22 months and ends when she's nine, if you don't factor in potential long-term side effects and processing the grief and trauma that we've gone through.
Cancer comes in like a tornado and tears your life apart, and very few people understand that. They tell you to be strong or worse—to stay positive. Some friends show up in the most beautiful way and others stop showing up altogether. The losses hit hard.
But here's the thing that hits hardest. Margot's diagnosis is one of the most treatable. We live near a top children's hospital, have great health insurance, and the privilege of being able to keep our daughter home and safe, and to be able to take time off work to get her through this is not lost on me. We could afford to go through it, and even with "best case" circumstances, it was hell. We spent thousands of the almost 1 million dollars in medical bills. The majority of families fundraise to get by and end up going bankrupt. And over 1,800 children die of childhood cancers each year. In fact, less than 4% of the billions of dollars the government spends annually on cancer research is directed towards treating childhood cancer. So the treatment options that are in place are the ones your child will receive if they are diagnosed. You think it won't happen to you, and I don't say that to scare anyone. Statistically, it won't, but I certainly never thought I'd be a "cancer mom". I still cringe typing those words.
After years of holding my baby's hand through cancer treatment, we were—and are!—finally close to the end of this nightmare. We just moved into our new house and EOT (end of treatment) is days away. She had surgery to remove her port weeks ago, along with her last spinal tap, IV chemo, and round of steroids. As we near the end, the years of missed memories and experiences, of staying home, lost friendships, loneliness, isolation, and always worrying about the next fever or chemo side effect hit hard. After years of living this way, it is finally almost "over" but I can't quite express how wrong that word feels.
I am grateful for who I am today. For the person I am because my daughter went through cancer treatment. I hate what it took to get me here, but I am a better person, friend, and mother. I know what matters and have a perspective I otherwise never would have had. I walked away from a job that lost all meaning and returned to my roots as a blogger, and it’s been pretty amazing. I am in the very early stages of starting a brand that will have an awareness and giveback component. I wish it didn’t take going through treatment to get here. Would I undo it if I could and go back to who I used to be? In a heartbeat. The hardest part of going through this is not being able to take it away. It was never "why us" but it was always "why her?" It isn't fair. And there is no coming to terms with it. I accept that this was our reality because it happened, but it is unacceptable. So I do what I can to raise awareness. I started a support group to help moms who are going through this. We now have over 60 moms in our group. We have raised over $200,000 for Alex's Lemonade Stand and over $100,000 for our hospital's oncology department.
On the days that I did not have the strength to go on, it was my daughter that got me through. The light that is my Margot. Her ability to continue to shine even when things are hard and scary. She is kind and loving. Smart and witty. She has gone through way too much and shouldn’t have to be strong, but she is. And she does it all with this Margot magic that I can’t put into words. She has such confidence, especially for someone who’s been so isolated. She truly has a heart of gold and sends videos to kids who are newly in treatment to help normalize having a port or taking medicine. I remember saying my one hope for my children was that other people would tell me they are kind. She’s more than I ever could have hoped for. ✨
If you are a parent whose child has been through or is going through treatment, please reach out to Danielle Moss for support. For more info. on Alex’s Lemonade Stand click here.
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