A Letter To My Son During His Cancer Fight
In honor of Childhood Cancer Awareness Month, I wrote a letter to my son during his cancer fight. Lucas was diagnosed with a rare form of Leukemia at age 4 and received 2 years of treatment. 4 months after finishing treatment, Lucas relapsed for the first time and needed a bone marrow transplant. Just one year after his transplant, he relapsed again and received CAR-T therapy. Today, he is 10 months post-therapy and doing well. It’s been a long 4 years of worry, unknown, and stress on our family. I want him to know what an incredible honor it is to be his mother.
This month, I plan to write at least one post per week on childhood cancer, our journey, how to help siblings of children with cancer, and more. They’ll be up on my blog throughout the month if you’re interested.
In the meantime, if you’re looking for advice and resources, here are a few of my favorites:
Here are other posts about our son’s diagnosis and how we changed our lifestyle after his diagnosis:
What I Wish I Had Known Before My Son’s Cancer Diagnosis
Why we choose to live a low-tox lifestyle
Thank you so much for being here. If you’re new, welcome! My name is Michaela. I’m a mom of six amazing little humans, and I blog about all things motherhood, budget-friendly recipes for large families, and non-toxic swaps to help you reduce your exposure to harsh chemicals. Settle in, grab your favorite drink, and look around! I am so grateful for every one of you.
A letter to my son during his cancer fight
Dear Lucas,
A new version of me was born the day you came into this world. Something about you changed me as a mother. I used to be snappy, impatient, and constantly busy. There was always somewhere to be, something to do, someone who needed me…
And then came you. It was like having you allowed me to slow down. Having you allowed me to pause and just be present. I learned to cherish slow days. I learned to view motherhood as an honor and not a burden. It’s not that your siblings weren’t just as important to me as you, but something about you felt so final. Like maybe you were meant to be my last baby. We know now how wrong I was, as you have 3 more siblings, but my pregnancy with you allowed me to become a better mom. The mom I always wanted to be for you and your siblings.
You’ve been my shadow since day one. You always wanted to be wherever I was, even if it wasn’t exciting. It wasn’t until you turned one that you realized Dad is your favorite person in the whole world and way more fun than I am. And I’m totally okay with that. You’ll always be my buddy, but Dad is your best friend ever, and that’s really cool for me to watch. Just remember I’ll be here when you need me. Always.
Your First Birthday
The first year of your life went by so quickly I couldn’t grasp it. How could my little guy be celebrating his first birthday already? You’d think I was used to it by now, having experienced the same feelings with your older siblings! Babies don’t keep, and no one warns you how fast those years go by. You had a chocolate smash cake, and by the time you were finished demolishing the cake, you were covered from head to toe in chocolate frosting. It was the funniest thing ever, but holy cow, it took a good 45 minutes to get you washed up!
Chocolate mess!
Years two and three, you were like any ordinary little boy.
You loved being outside, playing in the mud, making friends. You were always happy. Everything made you smile. You developed asthma at age 3, but we knew your triggers, how to handle a coughing fit, and what to do when you weren’t feeling well. Your first asthma attack was the scariest moment of my life… At the time.
Just before your 4th birthday, you experienced more changes than most children do at that age. You became a big brother and absolutely fell in love with your baby sister, and just 10 days later, we lost your grandfather unexpectedly. Second to Dad, your Papa was your favorite person in the world. You knew what day he came over each week, which pocket he kept the orange Lifesaver candies in, and how to climb into his lap and sneak his phone out of his pocket to try to play a game. He’d laugh and pretend he didn’t know your true motives every time.
That wasn’t all you dealt with that year. Not even 10 months after your baby sister was born, and we said goodbye to your Papa, you started getting really sick. We thought maybe you just had a virus, but things didn’t add up. You slept for hours at night, only to fall asleep 30 minutes after waking. Your naps would last for 3 hours instead of 1, you had no appetite, and you were so stiff walking became painful.
We took you to urgent care one night, and all they could tell us was that you were dealing with a virus. That wasn’t good enough for me, though. Something seemed off. After 3 more visits to different pediatricians and urgent care offices, no one could give us a legitimate answer to our concerns. It wasn’t until Thanksgiving night that we finally had enough. You had slept about 14 hours that night, and when you finally woke up, you wouldn’t eat and had to crawl around because you were too weak to walk.
That night, your life changed forever.
I hope you don’t remember it. If I could forget it, I would. The way our lives changed in an instant. The way we went from spending every single day together to being stuck in a 12×12 hospital room separated from your siblings, from your home. Still, if I could keep the images in my head so you could let them go, I would do it in an instant. You deserve to live life without fear. You deserve the childhood you’ll never experience because of an unfair diagnosis you had no control over.
Behind your beautiful blue eyes, thick brown hair (that has grown thicker each time you’ve lost it!), and amazing dimples is an incredible story that no one can take away from you. As much as I want to protect you from remembering the pain and fear you’ve been through, you have a story of bravery, perseverance, and strength unlike any other.
You are a walking miracle.
Like most children your age, you have dreams about your future. Dreams of being a teacher, firefighter, or, your most recent dream, an astronaut. To be famous, start a YouTube channel, or even become a superhero, even though to everyone around you, to everyone who knows your story, you already are.
All the normal things you missed out on; the first day of school, first sleepover, joining a soccer team, or learning to swim- you missed out on all of them. You never got the childhood you deserved, and it kills me. Even so, you didn’t let it hurt you. You just kept going, smiling, pushing through.
Your diagnosis has taken a lot from you, but it didn’t take your gentle, kind-hearted spirit.
Still, the unfair hand you’ve been dealt is hard to handle some days. The wrench thrown in our dreams for you, the days spent separated, the fear, the medical interventions you’ve faced in your short life. It hurts thinking about all the situations you’ve faced.
In December 2020, you finished treatment! The hard times are behind us, right? We can feel hopeful again, right? Make plans for the future.
Wrong.
We had 5 months of joy and hope; you even rang the completion bell! Surely, things were good. We signed you up for soccer and started researching schools. Only for it all to come crashing down on us. Again.
Your first relapse.
Instantly thrown back into separation, appointments, surgery, procedures, and juggling time between home and the hospital. ‘He needs a bone marrow transplant.’ ‘We should test siblings and parents first.’
On the way to the hospital again. I sat with you in the back on the way.
We found your perfect match in your little sister. She was only 4 at the time. The exact age you were when you were first diagnosed. It took 3 months of preparations to have everything ready for your transplant. You needed 30 days of chemotherapy every day, then radiation for 4 days, and finally, a break in the schedule before receiving your transplant the next day. This stay in the hospital was your longest one yet. Over a month away from your siblings while your dad and I would swap out who was with you every Friday. And you know what? You handled everything better than I did.
I was so anxious I didn’t eat for a week. Walking back into the hospital every time made me want to puke. Not because I didn’t want to be there; I desperately wanted to be with you. But being there meant something was wrong. It solidified that you were genuinely sick. But you acted like it was no big deal. This was normal for you. You’d see me walk in on Friday with the biggest smile. Even through your pain, you’d mumble, ‘Hey, Mom. I missed you.’ Even on the days you were too weak to sit up, you still tried to play games or color a picture.
Things got better around 2 weeks after your transplant. You could participate in physical therapy, your immune system started showing signs that your body accepted the new cells, and they gave us a discharge date! Before you could leave, though, I had to attend training to know how to care for your new lines. In addition to having a port again, you had a Broviac line for fluids, labs, and medications. I had to flush it every day to ensure it stayed open, and I had to draw labs from it once a week to send in. 2 days later, you walked out of that hospital and saw your siblings for the first time in over a month. That reunion was pure magic. All my kids are under one roof again.
The day before Christmas Eve 2021, you were allowed to go home!
We had been living in temporary housing provided by the hospital because we had to stay within a few miles in case we needed to be seen quickly. It was the longest 8 weeks ever waiting to take you home again. But watching you walk through that door and get to celebrate Christmas together in our home made the last four months of fear worth it. To see you snuggle up in your own bed, sit at our dining room table for meals, and watch movies together in our living room gave us a sense of hope.
That year, we hid away a lot. Protecting your new immune system as much as possible and finding little moments of hope as you started to improve. You needed fewer therapies, your strength was returning, and every provider who saw you told us how impressed they were with how good you looked.
In September of 2022, we had a lot to celebrate. Your birthday, your sister’s birthday, and the anniversary of your bone marrow transplant. Getting to this point was a big deal. The further out from transplant you got, the more successful they considered it to be. A week after your celebration, you needed another procedure. A lumbar puncture, bone marrow aspirate, and biopsy. I kissed your sweet face as you fell asleep and walked to the waiting area. My least favorite part. I always pray as I walk out of the procedure room. For protection, steady hands, knowledgeable providers, and a smooth procedure.
Your one-year transplant party
This time, your lab results trickled in really fast. Before you even woke up, I received an alert that preliminary results were available. Your B cells were extremely high, and my heart dropped into my stomach. I remember asking a provider why they were so high; she couldn’t answer me. She said she would connect with other providers but was not concerned. The false sense of hope she gave me that day was unfair.
I don’t even remember driving home that day. I should have felt so hopeful, but something in me knew to keep my guard up.
And I was right in doing so.
Your provider called us about 10 minutes after getting home from the hospital to confirm you had relapsed. Again.
I couldn’t catch my breath. Couldn’t sit still. I don’t know how I even told Dad what was going on.
What do we do from here? How do I look at you and tell you that your cancer has returned yet again? After all the time apart, all the side effects, and days spent sleeping. How do we do this again?
You didn’t even bat an eye. You looked at me and said, ‘Okay. If I have to stay at the hospital again, can I bring my iPad’?
And that’s precisely what we did. Packed up your iPad, schoolbooks, and favorite pajamas and returned to the hospital for 2 weeks for Car-T therapy. Dad wanted to be the one to stay with you this time. Your younger brother was only a few months old, and he didn’t want me to figure out how to manage your care while also looking after your brother.
2 weeks later, you had received your new cells, walked out of the hospital again, and were ready to keep moving forward.
Right outside your room during you stay for CAR-T Therapy
I’ve learned a lot from you over the past 4 years. Things I could never learn from anyone else. Resilience, perseverance, heroism. You shouldn’t have to be these things, yet you keep going. You’ve never lost your spark. I can see when you’re fearful when a potential health issue arises. Sometimes you get nervous. Ask if whatever is going on is ‘normal.’ I’m sure that’s some PTSD from all the medical interventions you’ve had in your life. Even so, you just want a hug. To know that everything’s okay. I wish I were more like you, Lucas.
I’ve become jaded through all of this. I don’t fully exhale. We’re 10 months out from your last therapy. You’ve been cancer-free for 10 months. And while I have every hope that you’re cured, I can’t let go of the statistics and conversations with providers who were less than hopeful.
We’ve worked really hard to focus on the here and now. To not think too far in the past or hope too far into the future. To just be present. Right now, you’re thriving. Right now, you’re smart, strong, funny, caring. You love jumping on the trampoline, staying up late on the weekends, watching movies, and eating Chick-fil-A every single day if it didn’t require a small mortgage to afford it!
As much as you have dreams for yourself, who you’ll be when you grow up, what your wife will look like, how many kids you’ll have, I have double. Seeing you drive for the first time, graduate high school, find the love of your life, and have children. I pray I get to witness these events with you. I pray you can see this part of your life become a distant memory you use to encourage other kids who, like you, spend their childhood in a hospital bed instead of playing soccer. Or scheduling their school assignments around procedures.
It’s an honor to be your mom, Lucas. Seeing you grow and learn something new every day is an absolute blessing. You are the true superhero.
I love you.
Love,
Mom
The best Christmas yet.
Final words
I know this isn’t a normal post for me, but this month is very special for our family, and it deserves more attention than it receives. Childhood Cancer Awareness Month is a chance to share stories of families like ours, raise awareness and funding, and shed light on a topic that is not discussed enough. This may be a letter to my son during his cancer fight, but I hope it sheds light on how important it is to talk about this disease and how to help families like ours.
Thank you so much for being here. If this letter to my son during his cancer fight has encouraged you to research childhood cancer more, please consider sharing this post with others.
Until next time,
-M
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