3 months ago
The Final Year of Treatment
This week marks the start of the final 365 days of treatment. In July 2022, Margot will ring the bell (I cry just thinking about it), take her last dose of her daily chemo (pill), and her port will be removed. The protocol is long and sometimes feels never-ending – sometimes, a year feels so far away. Our journey began in May 2020, and we’re over halfway there. I know it’ll fly by.
The prognosis for this type of Leukemia is extremely promising. It’s best-case, but still so much to go through. I often think of parents with children with less treatable cancers and find myself feeling guilty. But then I think of everyone with their healthy kids and how I’m living their worst nightmare. It’s an emotional roller coaster.
Whenever I find myself struggling or trying to process all she’s been through, I remember that she’s going to be ok.
I spent months in survival mode, doing my best to hold it together for Margot. When we finished frontline (the most aggressive part of treatment) last January, it was as if I hadn’t processed anything we (she) had been through until that moment. After we got through our first five day steroid pulse, we settled into a life that, aside from being isolated because of the pandemic, feels pretty normal. Margot is doing so well. She’s happy, thriving, and her daily meds feel as routine as giving a multivitamin, except they’re highly toxic and I have to wear gloves to handle them.
I’m grateful for life-saving medicine. I’m grateful for her prognosis. And I hate that she had to go through this. It is possible to feel grateful, angry, guilty, and even lucky all at once.
Next week, we’ll visit clinic for one of our five remaining spinal taps and we’ll start another five day steroid pulse. The spinal goes ok – it’s fast and she doesn’t remember a thing, but those medical days are hard. They’re a reminder that this isn’t over. It takes me back to frontline. It all feels like a lot after months of our new normal.
On my end, it feels like I’ve really held back, because I know what we went through and how much I didn’t share with you. What I’ve shared has been the basic ALL B protocol – it can all be found online. I’ve left the hard moments, sad photos, and anything specific to Margot offline. Part of me feels like I’ve done a disservice to these kids because you’ve only seen the photos where she’s happy and looks good. The photos where she looks like a patient are a very personal part of her story, and it wouldn’t feel right sharing them. I don’t plan on doing so. Maybe one day, Margot will make the decision to share them. Any time I post, I ask myself what Margot would think. I send posts and messages to her email address and hope she’ll be proud someday. She’s only three and has made such a difference.
To see her smiling, dancing, skipping, laughing, and playing like a three year old should – it is the most incredible feeling in the world. Her laughter and joy are a dream. I know without any uncertainty that I wouldn’t have the perspective I have now had she not been diagnosed. I’d undo it all in a second to save her, but the gift of perspective is not lost on me.
When Margot was first diagnosed, we were contacted by Bear Necessities, a wonderful foundation that gives “bear hugs” to kids. I wasn’t comfortable accepting a gift because the reality is that we are very fortunate to be able to give Margot everything she needs. The woman I spoke with reached out every few months since diagnosis but an experience didn’t seem possible with the pandemic. My friend Stacy suggested letting Margot turn on the magic at The Disney Store, and the Bear Necessities team made it happen. Conor and I planned on buying Margot a little something (and we did) and Disney generously gave us a $500 gift card that we used to purchase toys for Lurie Children’s Oncology floor. We talked a lot about giving back to kids who were sick, and Margot went from not wanting to share to wanting to choose toys for kids who were at the hospital.
You’ve helped us raise over $118,000 – a number I can’t really process. Thank you, friends. We love you, and it means so much to be able to make a difference for other kids. In September, I’ll begin another big fundraising push, and I’m going to focus a bit more on research since we need better options. I actually had a call with the founder of Alex’s Lemonade Stand today (Alex’s wonderful mom Liz). She’s going to help me figure out the best research opportunities through ALSF. Most of the drugs these kids see are incredibly toxic, and some of the key meds have been around since the 70s with no new advancements. I’m slowly but surely learning more about new research and trials, so I will keep you all posted.
For anyone who needs to see this, I recently started a support group for moms with children in treatment. If you are interested in joining, please email me via the contact form on my blog.
I realize what happened to us seems like one of those things that happens to other people. I get it. I don’t say this to scare anyone because odds are, it won’t happen to you, but that was us. This wasn’t supposed to happen to my baby, and it did. This is a cause I donated to before Margot was diagnosed, but it’s starting to feel more and more like my purpose. These kids deserve so much more than toxic drugs from the 1970s. and 4% of research funding. Their parents deserve to be able to give them access to treatment, and to be able to take time off work to be by their side. I hear from too many parents of newly diagnosed children each month. Childhood cancer isn’t rare. We need a cure.
I hate that we went through this, but I’m glad I know what I do, because I will be forever changed and forever grateful. Thank you to all of you, our friends, for supporting us every step of the way. For donating to help other kids. And thank you to my special super Margot for making such a difference. What a light you are. I love you too much.