6 months ago
Margot’s End of Treatment Celebration
After spending more than half her life in treatment for Leukemia, Margot finally rang the bell. No more port, chemo, spinal taps, or steroids. No more late night ER trips and isolating because we’re afraid she’ll get sick. On May 16, 2020, our lives felt like they were over. But on July 28, 2022, a new life began. Here’s a look at the day Margot rang the bell and her end of treatment celebration and some of the special people that showed up for us that day.
Margot’s End of Treatment Celebration
Ring this bell
Three times well
It’s toll to clearly say
My treatment’s done
This course is run
And I am on my way
See Margot ring the bell here
When you go through a cancer diagnosis, you become a different person. The 798 days we spent in treatment changed us. Looking back, I can’t believe how little she was when this started. She was 3 months younger than Kate is now. I look at photos and cannot believe she went through what she did – that we lived the way we did.
A few months ago, I started thinking about how to celebrate the end of treatment.
We would be able to gather with friends since her fever protocol (ER trip if 100.3-100.9 2x over the course of an hour) would be over. And we would be in our new home! The start of a new chapter and all she’s been through deserved a celebration. Margot loves all things pink, rainbows, and unicorns, and those have been a part of our lives throughout treatment. So I got to work, and spent months counting down and anticipating what life would feel like when we finally got here.
And now we’re here.
Margot’s End of Treatment Celebration
We arrived at 10:30 and didn’t ring the bell for almost an hour and a half. Clinic was unusually busy that day. My friend Britt was at clinic with her son (and Margot’s buddy) Cole. He had a spinal tap and started another round of steroids, but they waited for well over an hour to watch Margot ring the bell. She’s been such a good friend to me, and it meant a lot to have her there. My friend Stasi’s daughter was at clinic, too, and gave Margot a big hug.
We pulled up to the house and Kate ran up to me to give me a big hug.
Everything feels so different.
Being surrounded by friends – just like we were at Margot’s parade a few years ago – was a full-circle moment. Back then, Margot had just been diagnosed. We stood 6+ feet apart, too afraid to hug. It feels so good to welcome friends into our new home and to get to be together again. Our friend group was a little different – there are new people we love here with us now, and friends who stopped showing up for us. We’re in a new home, went through a career shift when I sold my company, and the baby I was pregnant with at the time is now a toddler.
I will never be the same, but prefer who I am today.
I hate what it took to get here, but I am a better person, friend, and mother. 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 from her. It isn’t fair. But I know what matters and have a perspective I otherwise never would have had. I know who my real friends are. They’re the people who were standing by us at the end.
Making a difference in the pediatric cancer world.
We now have over 60 moms in the support group I started last year. Being able to support other moms through their darkest days is a gift in all of this. Childhood cancer is so underfunded – we raised over $350,000 for life-saving research and to help other families in treatment. We raised $27,000 the last week of Margot’s treatment, marking a total of $255,000 for Alex’s Lemonade Stand and another $100,000 for our hospital. And I’m joining the board at Alex’s Lemonade Stand, because my fight is not over. I have to make things better for these kids.
My Super Margot
Her ability to continue to shine even when things are hard and scary is nothing short of incredible. 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 this confidence – especially for someone who’s been so isolated – and it is amazing to watch. Margot will walk up to anyone and say hi, share a list of her favorite things, and become their friend. She has a heart of gold – she 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. ✨
And Kate. Our sunshine.
She was born just weeks after diagnosis, and is now 3 months older than her sister was when everything unfolded. It’s sort of crazy to think about. She’s spend most of her life in isolation and did it with a smile (not that she knew any different). Our girl is sweet and silly, loves to dance and to make her big sister laugh. She came into the world during such a dark time, and brought nothing but sunshine and love with her. We love you, Katertot.
We can get through anything.
Nothing tests a marriage like watching your child go through cancer treatment. My husband handed off all of his clients through frontline treatment to keep Margot safe, and was 100% in this with us. He loves his girls endlessly, and not only cared for Margot and Kate, but took care of me, too. He urged me to go home and sleep when I was 38 weeks pregnant and couldn’t sleep in a hospital bed.
The entire newborn experience and the last two years were the opposite of what we imagined our lives would look like. But we got through it, together. We will have been married 5 years this October, and it’s crazy to think that about half our time together was so hard. But if we can get through this, we can get through anything.
Now let’s talk about three very special women who I love dearly. From left to right:
First, there’s Katie Kett.
Katie is a dear friend and took these beautiful photos. She took all but the last two, and as she always does, blew my mind, capturing everything so beautifully and perfectly. Katie is an amazing photographer and photographed our wedding, Margot’s newborn photos, and pretty much every important event since. She’s documented treatment for us, and I’ll always be so grateful for these photos. But most important, she’s been such a good friend, and I’m so lucky to have her in my life.
Then there’s Stacy.
I probably wouldn’t have survived frontline treatment without her. Our mutual friend Jess Keys connected us 10 days after Margot was diagnosed since Stacy went through the same thing with her daughter Averie exactly two years before us. Stacy is a saint, and answered my many many questions, and calmed my many many fears. She’s become such a good friend, and I love her and her family dearly. Averie helped Margot immensely, sending videos of herself taking medicine when Margot was struggling. She was my ray of light and hope that everything would be ok – that we’d get to the end. I should add that Stacy is a very talented chalk artist and muralist, so if you’re in Chicago, she’s your girl.
Even though she couldn’t relate, she always empathized. Always showed up. One of the most meaningful things anyone ever did, she did during frontline. Gina made the 45 minute drive to our old house and sat outside with me for a visit. She asked if I wanted to talk about treatment, or if I’d prefer to talk about something else. It was so refreshing, and we sat outside and had a normal conversation. And then, on the day Margot rang the bell, she showed up with the most beautiful note that had me in tears, and an engraved Dana Rebecca necklace with Margot’s EOT date and a little bell. A reminder of what we’ve overcome, the day our lives began, and that she’s always been and always will be right here with me.
These women stood by me for years when I had very little to give them. They are true friends, and I am so, so grateful for them.
And to the moms in my support group
You all know how much you mean to me, and I don’t know where I’d be without each and every one of you. I have some truly wonderful friends who were there for me, but having moms who get it saved me. Truly. I could turn to this group to share my worries and struggles, and they just got it. It’s a group you never want to be a part of, but the bond is unlike anything I’ve ever experienced. I will be by their side cheering them all on until each of their kids gets to that bell.
Margot’s best friend
I reconnected with Shari, one of my first blog friends, last summer when her daughter Colette joined our outdoor ballet pod. The girls became fast friends, and we couldn’t celebrate without them. Margot and Colette have given each other the title of best friend, and seeing them together is the sweetest thing ever. Colette showed up right after the unicorn, and Margot ran past the unicorn to hug her. Their friendship is everything I’ve dreamed of for both my girls.
And our inpatient nurse, Maddie
And then there’s someone who is very special to our family. Her name is Maddie, and she was one of our inpatient nurses at diagnosis. We stayed in touch, but only ran into her once on the street outside of Lurie. I told Maddie about our end of treatment party, and she came! I blocked so much of frontline and honestly don’t remember anyone but Maddie. She had this sparkle in her eye and told us how determined she was to win Margot over. She met us during the darkest days of our lives, and showed up in the most beautiful way that only a nurse could. We love her dearly.
Margot’s End of Treatment Celebration
Our balloon garlands
I ordered balloons from Aubrey of 99 Haus Balloons, and loved the incredible dino she made for the girls. So I placed another order for Margot’s EOT celebration 5 days later. Aubrey very generously offered to gift these to us, and really went above and beyond, so I’d like to share a little more about her small business. She’s a mom of 4 girls, and 99 Haus Balloons is woman owned and serves the entire Chicagoland area.
She offers grab and go 6 ft custom garlands that can be made to match your decor and theme. You can order online and schedule you pick up day and time. Pickups are M-F in Forest Park. A 6 ft garland will fit in almost any 4 door vehicle and will last for weeks if kept inside.
I saw this rainbow “unicorn” pony at a birthday party on Instagram and we all know what happened next. Not celebrating in a big way wasn’t really an option after all she’ been through.
I’ve ordered a few banners from Glitter Paper Scissors and asked if she could make a rainbow bell garland for us. It couldn’t have been more perfect!
Maggie Makes Cookies wouldn’t let me pay her, so I made a donation to Alex’s Lemonade Stand. She made the most incredible cookies to celebrate our super girl.
We missed out on a lot the last few years.
Isolating to keep Margot safe was so hard, but there’s nothing I wouldn’t do for my girls. We missed out on travel, preschool, and time with friends. I remember going for a walk when Margot had her PICC line in (she wasn’t allowed to get it wet), and sobbing when I saw some kids playing in the water in their front yard. Would that ever be Margot? It all felt so impossible, uncertain, and far away. But today, that’s my girl. We’re on the other side. She plays at the pool, has playdates, we’re traveling next month, and she starts preschool this fall. These are all things most parents expect – things I may have taken for granted. But each one feels so significant, now. I hate childhood cancer, but am so grateful for where we are today. She’s here. She’s happy. And we’re ready to live.