1 year ago
Life After a Childhood Cancer Diagnosis
On May 16, 2020, my 22-month-old daughter Margot was diagnosed with Leukemia. That time had already felt complicated with isolation (due to COVID), no longer having childcare (also due to COVID), and a new baby just six weeks away. Childhood cancer is never ok, but pre-diagnosis, everything felt like too much and I didn’t know how we’d ever make it through this, too. There are days I still don’t know how I’ll get through the next block, but we keep going…for her.
September is Childhood Cancer Awareness Month, and I want to share our story to raise awareness for what so many children and their families go through. Childhood cancers receive 4% of the federal budget that go toward cancer research. Four percent. Approximately 300 children are diagnosed every week. That’s around 15,600 children per year.
Childhood cancers are not rare. It’s happening to my family. To my baby. To me. When a child is diagnosed with cancer, so are their parents. Some could even say that it’s worse than receiving a diagnosis yourself. The pain, fear, and anxiety watching her go through this, having 2 years of treatment mapped out, signing consent forms for toxic, life-saving treatment, going over side effects, surgery, and navigating how to keep things normal for her during this time is often too much for my heart.
I am not strong. I’m a mom who doesn’t have a choice other than to advocate for my baby. Margot is not a warrior. She’s a toddler. An amazing, smart, sweet, beautiful baby girl.
Those first few weeks held some of the hardest, darkest, most painful days of my life, and I want to share a little bit about what we went through, how you can help others who are going through trauma, and how you can directly help families going through this. When she was diagnosed, it was as if I had never experienced real pain until that moment. And I’m using that pain to do what I can to change things for other children and their families because no one deserves this.
Let’s start at the beginning.
When it comes to anything medical, I am not one of those people who waits for something to get better before getting it checked out. In early April, I took Margot to see our pediatrician for a rash that had two little blister-like spots. She did not have any other symptoms, but we stayed in touch and scheduled a telemedicine appointment two days later. I love our pediatrician. She checked in regularly and is the one who ordered labs to get to the bottom of what was going on with Margot. I will always be grateful for how she stayed in touch and checked in, even on her days off. On April 21, we took Margot back to our pediatrician with a 102.5 degree fever. Later that day, Margot woke up from her nap with a 105.9 fever and we rushed to the ER at Lurie Children’s Hospital. Doctors got her fever under control and also thought the fever and rash were unrelated. We were sent home later once her fever had gone down.
We spoke to our doctor the next day and went in for a follow-up, and had another telemedicine visit the day after that. I had set up a call with our pediatric dermatologist and another with the head of dermatology at Lurie in early May.
Things weren’t improving so on May 15, our pediatrician ordered labs. She called back the following day – a call I’ll never forget. Margot did not have “a certain type of blood cell” and we needed to go to the ER right away. I was terrified that it might be something awful but had to believe it was an infection. I am an anxious person and was so worried on the drive over, but convinced myself I was just worrying like I always do because there wasn’t anything else going on that made us think it was something so awful.
I asked the ER doctor if she thought it was the very scary thing I was worried about. She said we needed to have her labs studied but that she usually saw signs that pointed to cancer, and that the signs were just not there. I felt reassured.
Hours later, she walked in. “I’m so sorry…”
My world went black.
I don’t remember anything after that and the next few weeks are a blur – just bits and pieces of pain. I was broken. I’m still broken, but slowly picking up the pieces and enjoying the good days. And there are so many good days. Far more good days than bad.
The fear that my baby might not be ok was too much to even think about. Margot was laying on Conor on the hospital bed – a sight I’ll never forget. It was a pain unlike anything I had ever felt and thinking about it takes me back to that horrible night. The tears start flowing and my heart breaks all over again.
We learned that infection was, in fact, Leukemia, and her body was unable to heal. We checked into the hospital that evening and stayed for 8 days. With COVID, only one parent is usually able to be in-patient and at appointments. An exception was made for us and we were both allowed to stay with Margot. I am so grateful to whoever made that decision since at 33 weeks pregnant, I couldn’t do it on my own and leaving was not an option for my heart.
Within a few days, we had learned that Margot was diagnosed with B-Cell, ALL (Acute Lymphoblastic Leukemia) which is the most treatable form of Leukemia. There are also positive, neutral, and negative genetic markers that doctors tested for. She had one positive marker. Given her diagnosis and the fact that we learned she did not have any detectable cancer cells in her spinal fluid, Margot was deemed standard “favorable” risk. Her diagnosis was as favorable as it could be (in the high 90% that she will be ok). We were broken but had so much hope. She would still go through over two years of treatment. Frontline, which is the most aggressive part of treatment that we’re in now would last 7-9 months. Once that ends, we will spend another year and-a-half in maintenance until July 2022.
Treatment started on May 21 and that whole first month (specifically what happened when) is kind of a blur. The first block of treatment is called induction, and it comes with 28 days of steroids which are brutal. It felt as if our sweet, funny, toddler had been taken from us. As each day passed, Conor would mark an X on the calendar. We were going to get through it, and we did. Within 24 hours of going off steroids, the girl we missed so much came right back to us.
In the first few weeks of treatment, Margot had her first surgery, bone marrow aspirate, chemo, and lumbar puncture. We met with wound care, dermatology, and oncology in hopes of getting infection under control.
We were able to go home after a week. It felt good but our new world was one that took some getting used to. She would have had fewer meds but needed antibiotics, so there was a lot in the beginning. We had to wait for her infection to heal before she could get her port, so we had to flush her PICC line (which was in her arm) daily.
A few months in, she doesn’t have any daily meds. Just an antibiotic every Saturday and Sunday (which are a normal part of treatment). Life feels a lot more normal than it did back then.
Had it not been for her infection, that time wouldn’t have been nearly as awful, but we found ourselves back in the hospital May 29. There is so much more to this part of the story that is too medical and too personal to share, but I will say that was a horrible week for us and included a night in the ICU. Margot’s doctors and nurses are incredible and fought so hard for her to heal. On June 6, just 21 days before Margot became a big sister, we went home.
I cried a lot at the beginning. The tears still come a few times a week, but at the beginning, I could not get a grip on the anxiety, sadness, and grieving over what my baby was going through. Over how we would bring a baby into this. Would we feel joy when she arrived? Would Margot be healthy enough to stay out of the hospital? I could only get on the phone with a few friends who just knew exactly what to say and how to listen. It’s so hard. Everyone else meant well and had the best intentions, but asked too many questions and I didn’t have it in me to relive the trauma of what we were going through.
Everything felt big and impossible. Even the things that in the end, don’t matter, like physical changes. Margot looked a little puffy after steroids, but she was still my perfect, beautiful baby.
I have spent endless hours worrying about how this might impact Margot’s little spirit. At first, it felt like she was being robbed of toddlerhood and some days, she was. Most days are good though, and that’s what matters most. Knowing what, when, and how to address things that might come our way has been on my heart though.
We talk through everything and give her as much control as we possibly can. I have the nurses take my vitals first which has helped normalize things for her. She chooses which arm to put the blood pressure cuff on and picks her band-aid. We play doctor at home and talk about what’s scary. I validate every single feeling and share her pain. I’ve never told her not to be afraid, but I have told her that I’ll be with her the whole time. That I don’t want to go to the doctor either but that it’s making her healthy and strong. She knows her body was “a little sick” and that she’s taking medicine to make her strong. That her friend Averie has a port just like she does and that mom takes medicine (vitamins) too. She knows I think she’s strong and brave, but that it’s ok to be scared. One day, she’ll know her story but for now, we simplify and normalize what we can, and she’s done really well.
Five weeks ago, her hair had thinned enough that it was time to cut it. Every few days, I’d ask Conor if it was time and one morning, I knew. I took all the length off what remains after 2.5 months of chemo. Next month, the rest of her hair will fall out on its own. It’s not about the hair. It’s about *why* it’s falling out. The inescapable reminder that she’s a patient, or that’s what I built up in my mind. Maybe I’m protecting myself, but whenever anything new comes up, I imagine every outcome, how hard it could be, and how it might impact Margot.
We showed Margot how the electric clippers work by holding them up to dad’s face and my hand, but she didn’t like the noise and said she was scared, so I put them away immediately. It’s almost as if she knew the clippers would be too much for both of us. I pulled out a pair of manicure scissors and she wasn’t afraid, so I tried taking a little piece off the back of her head. We made it positive and fun, playing her favorite “birdie game” (sago mini world) on her iPad, and we looked in the mirror to admire her hair. She was happy. Everything was ok.
I know I’ve said I don’t like being told I’m strong but in that moment, I was strong. I did something I was really afraid to do that I knew would hurt my heart, and held it together for my daughter. Yes, it’s just hair. It’s also so much more than that. She walked back into my bedroom and I silently shed a few tears as I brushed my teeth. She didn’t notice and I’m not even sure what I was crying about. The significance of everything? That she still looked like my Margot? Her first haircut? Emotions run high these days.
I looked over and didn’t see a patient. I saw this. My perfect, beautiful, amazing little girl. Isn’t she something?
We were met with so much love the last few months. My mother-in-law drove to the hospital to bring us whatever we needed even though she couldn’t see her granddaughter. My friend and neighbor saw me grabbing a few things at home and ran inside for a cooler, mini-blender, and daily harvest shakes so we’d have something healthy to eat at the hospital. The two of them built and painted Margot’s playhouse while we were in-patient.
Another friend typed out all the items she wanted to bring to the hospital in individual texts and asked me to “thumbs up” what I could use. That was so easy and so helpful. Cards, meals, and texts letting me know people were thinking of us were everything. Friends planned a drive-byparade after we went back home.
A friend connected me with a mom who has been there for me the way you’d hope your closest friend would. Stacy and I started texting 10 days after Margot was diagnosed, on the anniversary of the day her daughter Avery received the same diagnosis just a few years earlier. I don’t know where I’d be without Stacy and wish we met under any other circumstances, but feel lucky to call her a friend. I hope I can help another mom the way she’s helped me.
Four months later, we’re still standing. There’s daily laughter and smiles. Hard days but so much more good than bad. I have to hold on to that.
Over 2.5 years my baby will have 13 spinal taps. Steroids. Chemo. Blood transfusions. As someone who runs anxious, it kills me to think about what we have to do to save her all while being grateful that we get to save her.
We are about a week away from starting the block of Margot’s treatment that I’ve been dreading since sitting down with our oncologist months ago. She will be prone to fevers and infections. She won’t feel great. There will be blood transfusions and potential hospital stays. Every germ is a risk so I’m going steam and sterilize as much as I can daily but it’s out of my hands. I can do everything right and she still might end up in the hospital with a fever. I can’t protect her but I can love and support her through it.
I can’t tell you how much our doctors, nurses, and child life services meant to us during our stay. These people are saints and love these kids so much. They’d bring small things for Margot to play with and those little toys helped make things feel less scary. One day, some toys were dropped off from the toy closet. They were donated by Dancing While Cancering for children to play with while in-patient, and those little toys brought some much-needed smiles. There are so many wonderful organizations doing things that might seem small but change lives.
How you can help
I plan to use this platform to advocate for everyone. Margot’s treatment won’t be changed by fundraising, but new drugs and funding are so necessary for other kids. Please consider donating to our fundraiser, bidding on our auction, buying a tee or sweatshirt from our “more than four” collection. I’ve also donated to Alex’s Lemonade Stand, St. Baldricks, and have donated toys to our hospital, too. I never would have imagined how important and meaningful toys would be during a hospital stay.
I can’t imagine also having to worry about expenses, and we’re lucky we have savings and didn’t have to. Parking, food, medical bills, time off from work…it all adds up. I couldn’t stop thinking about families struggling on top of going through the unimaginable and I have to fight for them. 1/4 of funds donated to our fundraiser go toward helping families in need.
How to be a good friend
If you know someone going through something like this, when communicating, leave as little as you can on their plate. Asking questions that you don’t “need” to know the answers to only causes pain. Being asked if her cancer is genetic helps no one and only causes pain. And it’s not genetic, this was just bad, bad luck. When people asked for updates, I didn’t have it in me to reply and relive the trauma over and over. I knew everyone asking questions meant well, but most messages were draining. I did not want to be on my phone and couldn’t be on my phone while we were in the hospital.
If you want to be a good friend, let your friend know you’re thinking of them and ask specific and helpful questions. One friend would send a “love you” or “thinking of you” text daily. She didn’t expect anything and at the time I was a little numb, but looking back, it meant more than I realized. A “can I bring dinner tonight or tomorrow” is a lot easier than “what can I do to help” because when you’re going through it, you don’t know what you need. “How are you?” was an impossible question in the beginning because I was not ok but a “no need to reply but I’m thinking of you” meant so, so much. Know that your friend isn’t ignoring you – they’re just trying to stay afloat. I’ll share more on how you can help later, but wanted to touch on what was helpful those first few weeks.
I keep reminding myself that we *get* to fight. Margot’s prognosis is so good. She is going to be ok. I’m going to keep saying this over and over: only 4% of the billions of dollars the government spends on cancer research goes toward treating childhood cancer. More research. More funding. We need a cure.