A Day in the Life: My Child Has Cancer

A Day in the Life: My Child Has Cancer

My six-year-old son Lou was almost four years cancer-free. But this past April, three tiny dots on his routine scans took my breath away…

“We have a problem,” our oncologist said, her words both new and familiar. I was a Cancer Mom again, this time with a child whose rare form of brain cancer had spread to his spine. Despite our shock, my husband Ian and I went into Go-Mode: We did this once, we’ll do it again. But Lou and his identical twin brother, West, weren’t babies anymore. They had questions I struggled to answer, like “Why is this happening to me, and not West?”

Emotions aside, the logistics were overwhelming. In order for Lou to safely receive the mostly in-patient treatment, we had to split our family apart, half our unit living in Manhattan, and half of us two hours north. There are millions of Cancer Moms like me, split in two, living an alternate reality behind closed hospital doors and many of us feel pressure to put our fight face forward. But what follows is a day in the life, my life, no filter.

A Day in the Life: My Child Has Cancer

5:00 a.m.

It’s been one of those nights. No puking or fevers, but I keep jumping over Lou to silence the infusion pump and press the call button. “How can I help you?” the voice cuts through the dark. “We’re beeping again!” Silence. I assume How Can I Help You? is off trying to find Claudia, the nurse, but I hate being left hanging. I wish that How Can I Help You? would just materialize in my room, maybe as a caftaned therapist in a cocoon chair. “How can I help you?” she’d ask, pencil to pad. “I don’t know. My son has cancer again. How can you help me?”

7:30 a.m.

Lou’s still asleep, so I carefully crawl out of bed, brushing the last of his blonde hairs off my T-shirt. I don’t want to miss FaceTime with West at home, especially since today is West’s first day of school. But Lou yells, “Mommy, pee-pee!” as my phone rings and I race both him and the pump he’s attached to into the bathroom. “I need a bucket!” he panics, holding his mouth. I slide the pink bucket over with my foot as I reach for the call button, but he’s already throwing up. Nurse Claudia resurfaces, motioning for me to step aside. I’ve missed my husband Ian’s call. He sends a picture of West wearing a new backpack and a pair of striped knee socks. “Knee socks?” I text. “They’re his new thing,” Ian writes back. Lou is laughing with Claudia. I don’t know what hurts more. Claudia saving the day or learning via text that knee socks are West’s “new thing.”

A Day in the Life: My Child Has Cancer

9:00 a.m.

I make sure I’m showered, dressed, with red lipstick before joining Lou’s oncology team in the hall for daily rounds. It’s my way of dressing for the morning I want to be having, as opposed to facing the resident who always starts rounds with, “Lou is our six-year-old boy with recurrent metastatic choroid plexus carcinoma.” His words are like pie to my face, but I just keep smiling as they go through plans for the day. Lou will be getting chemo. I’m to count how many Cheerios he can stomach; they may have to hang a nutrition IV. After, the oncology fellow asks if I’m a yoga teacher. “You’re just so calm and composed,” she says, and I bask in her approval. The disheveled mom from 409 walks by, shooting me a death stare. I’m sure my smiles and lipstick annoy her. But deep down I wish I, too, could just wander the halls, pissed off, in last night’s pajamas.

11:00 p.m.

It’s time to change Lou’s Mediport dressing. I pray it doesn’t take three nurses and my sitting on him like it did last week. “You got this!” I tell him, but I feel like I’m leaving my body. Pamela and Jodi hold him down, while Maureen starts peeling the plastic bandage. I look out the window, reassuring Lou from afar. Our room faces another hospital building, specifically a Labor and Delivery ward. I see a new mother nursing her baby, and it dawns on me that I have no memory of nursing my babies. Lou was diagnosed at one year old. We spent eight months in treatment, and Cancer quickly erased everything that happened Before. Lou screams as Maureen inserts the needle into his chest. I hold onto the bed, as if by holding on I can prevent the last four years – pre-school, Disney World, all of it – from disappearing, too.

1:00 p.m.

My mother comes to play “Don’t Break the Ice” with Lou so I can step outside for some air. The nurse Maureen stops me as I’m putting my coat on. “Mom, can you sign for the Methotrexate?” I look over at my mom, only to realize I’m the mom that Maureen’s speaking to. I sign at the dotted line, granting permission for something that sounds like broken glass to be administered to my son. “Oh, and Mom,” she says, “you can’t cuddle him once we hang the bag.” My face drops. “But we sleep together,” I say. But she explains: “It secretes through his skin. You’ll have to wait until it’s all flushed out.” Across the way, the mother in the window is staring at me, at us. She holds her baby close. I’m the mom she’s probably praying she’ll never be.

A Day in the Life: My Child Has Cancer

3:00 p.m.

It takes me two hours to leave the hospital. This time I’m the one asking, “How can I help you?” as I’m stopped by the social worker. Then the art therapist. The music therapist. The nutritionist. The finance lady. And the resident (“How many Cheerios?”). The longer it takes me to leave, the more I feel like I am coming down with what can only be described as Stockholm Syndrome for Cancer Moms. I have to summon up superpowers to Leave. The. Building. But outside is a different kingdom. I get caught in an avalanche of mothers and children with oversized backpacks. The moms are scolding their kids, the kids are having tantrums. I feel like I’m lost in a foreign country, listening to a language I no longer understand. Minecraft? Screen time? All I can think about is West in his knee socks, getting out of school, without me, without Lou. I burst into tears on First Avenue.

6:00 p.m.

The Methotrexate has been hung. I get into bed with Lou, and I hold him, even though I’m not supposed to. We’re watching Sing! for the second time. It’s our favorite part, when the mama pig dances to “Bamboleo.” The resident pokes in his head. “Six Cheerios,” I tell him. “We’ll have to hang nutrition then,” he says. Lou not eating feels like an epic Mom Fail, as does my forgetting to text Ian about the lasagna in the freezer at home. Then my dinner arrives. “Ugh, that smell!” Lou complains, covering his nose. I go to eat my salmon and mashed potatoes by the door. And that’s when I hear the woman wailing. A large group of nurses, doctors, and the chaplain have gathered outside 408, next door. They’re looking at their feet. The mother in 409 comes out, too, and we look at each other, realizing what’s happened in the room between us. The nurse Maureen nudges me back into my room. In my shock, I mumble something about frozen lasagna, as “Bamboleo” and Lou’s laughter drown out the unspeakable.

7:30 p.m.

Lou’s mad because Maureen and I are giving him an Aveeno bath, to protect his skin from the Methotrexate. “You’re washing me with cereal?” he yells, the milky oats dripping off his tiny, bald body. I don’t understand how Maureen can be business as usual after what’s happened next door. After the bath, Lou and I FaceTime with Ian and West. “I got to sing in Spanish!” West tells us. “I had a cereal bath!” Lou tells them, and West looks totally confused. “How was your day?” Ian asks. I look at the face I’ve barely seen for the past five months, and then at my own white, shaken face. I see our country kitchen, West’s backpack, and my plants on the window sill. I don’t know what to say. I can’t stop thinking about the mother who lost her child.

A Day in the Life: My Child Has Cancer

8:00 p.m.

It’s finally bedtime. I’m panicking as I have to break it to Lou that we can’t sleep together. Or can we? “Let’s make a boat!” I suggest. But I can’t figure out how to unlock the bed so I press the call button. After some maneuvering, I move what feels like a mountain up against the sofa by the window. “There,” I say, marveling at my Mom Hack. With the covers on, and our socked toes touching from opposite sides, it’s like one big life boat, complete with puke buckets. “This is cozy!” Lou says, yawning, and I agree. I begin to read from The BFG when “How can I help you?” finally gets back to us. “We’re good!” I yell back. “Are you sure?” she asks. I look at Lou, his eyes growing heavy. Then out the window, where the mother and baby have fallen asleep in their chair. An exhausted calm falls over me. “Yes,” I say. And for right now at least, I really mean it. 

A Day in the Life: My Child Has Cancer

You can follow Lou’s progress on Alexa’s instagram chronicles. Thank you, Alexa! Sending you and your family so much love.

P.S. Home as a haven, and how to help a child after a bad day.

(All photos courtesy of Alexa Wilding’s instagram.)

  1. Amy says...

    This just ripped my heart right out of my chest. I appreciate this blog so much and for so many reasons, this being a big one.

  2. Thank you so much for this. You articulate it all so well. We lost our sweet 20 month old son to brain cancer and there are days I miss the routine of the hospital and other times I have nightmares about those beeping machines… I feel guilty about both of those feelings. My thoughts are with you and your family as you continue to fight. 💗🐸💛

  3. Deanna says...

    Thank you SO MUCH for sharing your (and your family’s!) story, Alexa. And THANK YOU Cup of Jo for giving her the space to do so. I work with these kids every day and when I tell people what I do they always say how hard that must be. But, it’s amazing parents like Alexa and awesome children like Lou that keep me doing what I do! In my experience, families can sometimes feel a bit isolated when their children receive such a diagnosis. People so desperately want to support them, but they just don’t know how. They just can’t relate to the every day challenges it takes to be a cancer parent. I hope this story helps to decrease that “stigma” or hesitation people can sometimes feel. Alexa, you’re amazing. We hear you, see see you, and we’re sending you, Leo, your family, and all of your caregivers love from all over!

  4. Ingrid says...

    I have no words of comfort, only tears, and prayers of strength for you all.

  5. Stephanie Powell says...

    You are so strong and so wonderful. Thank you for sharing your story with us. Also, this community is incredible, so kind and so positive. no words..

  6. Alexa, may your words continue to be the escape valve for the horrific nightmare that is cancer❤️ Light, love and gratitude beaming your way❤️

  7. Jane says...

    Thank you so much for your courage in sharing this incredibly difficult time with us. I can relate to living with a sick child in the hospital so please know you sharing your story means so much and touched not only me, but so many of the readers here. Thank you and wishing you and your beautiful family some peace and happiness.

  8. CEW says...

    I cant read past the first paragraph so please know that even though I am not religious I am hoping and praying that your family is whole and that you make it through this all together. It’s not fair, but please accept my love and warmth projected towards you, your son, and the rest of your family.

  9. Sarah says...

    this is beautiful. from another mom caring for a child with complex medical needs, this was comforting to read. thank you, more of this, please. much love to your family.

  10. Vicky says...

    From one twin mother to another. One of my twins has a progressive, fatal and incurable illness. And I know how it feels to want to move the sun, moon and stars to help your child. And the frustration that comes with not being able to. I am sending you love and light. May you and Lou have at least one peak everyday that brings a smile to his precious face. And may you all be reunited soon to enjoy the small inconveniences of mundane life together again.

  11. Janet says...

    Alexa. THANK YOU….Prayers, hugs and love for all of your family……..

    • Ros says...

      So much sympathy. There is absolutely no imagining the moment of hearing wails from the next room of the PICU.

      … as I write this from my baby’s bedside, 3 days after open-heart surgery. No one imagines their baby will be the medically complex one, and it’s hard. Much sympathy.

  12. Juanita Dharmazi says...

    Thank you for sharing. You are such a wonderful and strong mother. God bless you and your family.

  13. Idelia says...

    Alexa, i always read your post here and there and so sorry this happened to you. Stay strong mama! Thank you for sharing your honesty.

  14. Heather says...

    Just chiming in – my thoughts have been on this post and with you, Alexa, over the last days. Thank you so much for your bravery and honesty in sharing and for shining a light on your experience. Sending so much love and light to you and your family.

  15. Inês says...

    ♥️♥️♥️

  16. Maaike says...

    Alexa, I am just blown away by your honesty, your courage and your strength, and also your little boy’s bravery. I know first hand how scary having cancer can be, and it is so unfair when it happens so so young. Sending you and your family love and light.

  17. f says...

    Dear Alexa, my heart goes out to you and your family, especially little Lou. No words can describe how unfair it is that you have to be so brave and strong… and yet you are. Thank you for sharing your story and letting us see a sliver of what you are going through. Sending good vibes, warm hugs, healing energy, and prayers that there will be more good days than bad.

  18. Emma says...

    This hurt my heart. Sending all the love and positive energy to your family.

  19. SS says...

    When my husband was in the hospital for leukemia (I think he was also treated with Methotrexate), certain friends and family would say, “Everything will be okay.” Although they had no way to know the outcome, just hearing the words made me feel better. It’s been 12 years now and everything is better than okay!
    So, I’m sending the same message to you: Everything will be okay.

  20. Rebecca says...

    I’m in awe of your strength and resilience and so grateful to you for sharing your story with us. I know two families who have been through this and have come out the other side with an incredible bond to each other and a joyful gratefulness for everything around them. I wish the same for you, Lou, West and Ian. Sending prayers and love your way while you face this as a family. You are not alone.

  21. Allison says...

    Thank you for sharing your story. Beautifully written and heartbreaking. Sending hugs and hope to your sweet family. xo

  22. Jessica says...

    I have been in the pediatric ICU 3 times for my 2 year old son with Asthma. It was the most brutal thing, and I have to remind myself that it was nothing compared to situations like yours. My heart breaks for you, your husband and for your sons – both of them. There are no words. Just know, we are with you. <3

  23. Esther Bogomilsky says...

    Beyond inspiring and motivating for all of us!!

  24. Sarah says...

    You are such a reminder of the most important lessons in life, which are to simply accept your reality and keep moving. Thank you for your story.

  25. cassandra says...

    Thank you for sharing. My son has ALL so we too are in this battle. I am so sad and scared and stressed and I can hear that too from you in your story. Hugs to you and I hope Lou is having a good day.

  26. Ruby says...

    As a mama of a tween with a chronic, uncurable illness, and two toddlers, I see you. I hear you. Prayers, love and light. Keep fighting. Sending so much love.

  27. Sadia Sabrina Alam says...

    From the mum of another set of twins in Bangladesh, sending you love and prayers. And hugs. As many as you need.

  28. Jane Parmisano says...

    You are a good mom.

  29. Sara P says...

    Such a moving piece & Instagram. Makes me want to be a better person.

  30. Brianna says...

    Thank you for sharing your story today. I nearly cried in the middle of my university. I don’t have any words except that I was thinking of you and your family today.

  31. Sarah says...

    From the mother of another six year old Lou, mine a girl, much love and prayers. Thank you so much for sharing your experience so eloquently and honestly.

  32. Emily says...

    Hi Alexa, thank you so much for sharing. I am a medicine resident (who recently rotated on the inpatient oncology service) and although I do not work with children, I really appreciated your perspective as a family member of a patient with cancer, especially as an inpatient. I am wishing the best for Lou, you and your family. <3

  33. yanti says...

    I broke down at 11.00am. Sending love to the beautiful family.

  34. Lala says...

    Alexa, sending so much love to you and your family. I’m a cancer mom to a little one on the west coast. So much of what you wrote resonates with me. Thank you for sharing your story. I feel like so much of my life is spent feeling like there is a veil between myself and the rest of the world. Sending our love and strength to you all. xx

  35. Ceciel says...

    I spent just 4 nights in a PICU when my son was 13 months old. Reading about a much longer stay in that planet of hospitals and illness with your child touched me. Thank you for sharing and please know you have strangers all around this country (internationally?) sending love and strength and empathy and encouragement.

  36. Emily says...

    Your strength, and Lou’s, shine through in this piece. Sending support and strength to your family.

  37. Shawna says...

    Beautifully written. Sending love.

  38. This is such a moving read, Your strength and vulnerability shines through. My heart goes out to you, Lou and your family, sending you all of my support and healing wishes xx

    • Meara Demko says...

      Your writing is wonderful… so honest and vulnerable and brave. The spirit of your sweet family shines through in every word. Sending huge love and courage…

  39. Andrea says...

    Thank you for sharing this experience. One of the hardest things about being or being with someone who is ill or dying is the feeling that you are now on a different planet as the old planet whirls about you.

    Thank you for helping send a message back from that other planet. It is a message that helps us all understand suffering better and hopefully urges us to reach out to those suffering.

  40. mina says...

    This floored me.
    Today has been a day of “small children, small problems, big children, big problems” realisations as we enter layers of new territories with our three kids, 5, 7 and 9 years old. And I know that no-one’s life should be used as a trick to give me perspective on mine. But this gave me so much perspective and so much gratitude for the “problems” I’ve faced today.
    Sending all the good vibes I can to you and your family, Alexa. And every hope for little Lou’s full recovery.

  41. Lauren says...

    I’m reading this in the bath, sobbing. As a new mother this year, the emotions of parenthood have floored me more times than I can bear to count but the strength in this post is incredible. Imagining my own son, my little boy, experiencing this makes my heart break into 1000 pieces but you are so, so strong Alexa. Lou needed you as a mother, and your husband’s strength matches yours no end. Stay together, stay positive and be aware of the thousands of people now thinking of your family ❤️

  42. Sarah says...

    Sending prayers and love.

  43. Jill says...

    Alexa, my heart goes out to you and your family. Thank you for sharing. But also, this is just such a beautiful piece of writing. You have a real gift.

  44. Shelly says...

    Prayers!!

  45. Molly says...

    I am sitting at my desk at work, pumping for my 5 month old. I often read the news or COJ while I pump to distract me. I have tears streaming down my face and just want you to know how truly brave I think you are. Sending you my thoughts, for Lou, for you and your family from far away…

  46. Emily says...

    This is almost exactly what my days in the hospital as a caregiver to my mother with cancer looked like. From the “we’re beeping again” to the daily rounds and meticulous counting of any calories consumed.
    So much love to you, Alexa. And courage, it takes so much courage.

  47. Maureen says...

    Alexa, thank you for sharing this with all of us. Keep going, you incredible woman and mother. I pray that easy, restful, joyous days, spent together, are just around the corner for your family. Sending wishes of continued strength and healing to you, Ian, West, and especially your extraordinary Lou.

  48. Perri says...

    Crying at my desk. What an incredibly beautiful and strong family. Sending them love.

  49. Sara says...

    Sending you light and love to your family. Your strength is a gift to all of us- especially to Lou.

  50. Jenna says...

    I read this yesterday and it really stuck with me. I have been thinking of you and your family all day. Just wanted to send my love to you too, and thank you for sharing your story. I just wanted you to know that I am thinking of you if you feel alone.

  51. Kerry says...

    Turning the fury I am feeling on your behalf into a positive strength and sending it all your way, Alexa. Thank you for writing this.

  52. Julia L. says...

    Thanks so much for sharing! As a mom and an RN, I am so touched by your words. In both roles, it is so easy to get overwhelmed by the daily responsibilities and stressors, and lose sight of the big picture: that every moment is a gift. We need to spread love and empathy wherever possible. Much love to you, Mama! You’re all in my thoughts!

  53. Molly says...

    An incredible life. An amazing woman. What strength and comfort come through all at once. The definition of superhuman 💕(both of them!). I’ll never forget this post. Thank you for sharing!

  54. Elizabeth says...

    Sending your family positive thoughts.

  55. Cate says...

    Wishing you and your family all the best. It was difficult to read but not as difficult as it is for you and your family to live through. Stay positive and strong.

  56. Sara Montoya says...

    I’m another mama out there sending you love and strength and prayers, in whatever form might help the most. You are incredible and through this heart-rending day you helped me see that even an impossible day can be filled with beauty just because of love.

  57. Anne says...

    They are all so strong. Sending so much love to this family.

  58. Karine Majeau says...

    Sending your family lots of love and strength. Will be praying for you and thinking of your Little Lou.

  59. kayla says...

    crying at my desk — thank you so much for sharing your story and for doing it so beautifully. moms are the strongest badasses on this planet. all of my love & strength to alexa and her family.

    • Catherine says...

      also crying at my desk. Sending so much love

  60. Sara O'Mara says...

    Brave Mama, may every ounce of love and support in The Universe be at your back. Sending you all good wishes – like heartfelt prayers, highest energies and healing thoughts – from Chicago.

  61. Jessica says...

    I almost didn’t read this post because as a new mom, it’s JUST. TOO. HARD. This is my worst nightmare. But I felt I owed the author for her bravery in sharing her daily struggle. There’s so much bravery and beauty in what she writes. I wish her nothing but strength.

    • I feel the new mom comment so deeply. As a therapist I am used to hearing about difficult topics, but I have been shocked by how stories about unfair childhoods like this break my heart into pieces since becoming a mother. Sending strength, patience, and light.

  62. Lucy says...

    There are some things in this life that are random and unfair, and for which there is no silver lining. This is one of those things. Alexa, you are a woman of incredible strength and you are doing everything right. I have twin six-year olds and your story resonated with me. I will be thinking of your family regularly and sending your beautiful son positive thoughts and love in the weeks and months to come.

  63. Ana says...

    God bless your sweet hearts. Your boy will heal. And so will your family. Have faith!

    • Amy says...

      Hi Ana, I love your optimism. Right now, my wife has a rare and aggressive cancer and she’s doing really well, but when people say things like “She will heal” or “She’ll be fine” all it makes me think is “you don’t know that, and neither do I, and neither does the doctor.” Sometimes these kind statements make it harder for me to stay positive. Because invariably the person saying something like that is really kind and has the best of intentions, I don’t explain in the moment how hard that kind of thing can be to hear. When a loved one is maybe-dying, it gets tough to shut off the negative thoughts in your own brain. When someone says something optimistic to me, like “she’s so strong!” or “she’s such a fighter” I have reinforcement for my own positive thoughts, rather than immediately countering their manufactured certainty with my negative thoughts about how UNcertain it all is. I’m just speaking for myself and I really appreciate your kind wishes and optimism. This is simply what I sometimes wish I had the grace to say to kind people who tell me it will all be ok, because we just can’t know.

    • Katy says...

      Thank you or sharing Amy. And best wishes to both you and your brave wife.

    • Lala says...

      Amy, your comment is perfect and eloquently summed up how I feel as the mother of a child with cancer. I know how well meaning many people are, but sometimes the way it is expressed is hard to bear.

    • A.N. says...

      Yes, Amy, exactly this. Again, Ana, I know you meant nothing but kindness and love from your comment, but I wish people knew how those comments can often make things harder.

  64. Mims says...

    Alexa, your pure for your family love shines throughout. Thank you. Blessings on everyone in your caring circle, which just got leaps and bounds bigger from this CoJ post. And Thank you to the CoJ team for covering this. Life has many rough patches, understanding how to negotiate them with grace is so important.

  65. Jo says...

    Please accept my virtual support and love.. I will be thinking of you all today & in future.. <3

  66. Vera says...

    Thank you for sharing a day of yours, Alexa. This is heartbreakingly difficult. I wish you and yours all the strength and all the optimism in the world. 💜

  67. Kim says...

    Sending love and light to you and your beautiful family. Thank you for sharing your honest, beautiful, raw, intimate thoughts with us – your courageous willingness to share is a gift to all of us who get to read your words.

    • Stephanie says...

      I couldn’t put this any better. Thank you.

    • Andrea says...

      Speechless over here, but Kim got it right. So much love to you and your family, Alexa. Thank you for sharing.

  68. Kim says...

    Sending you and your family love.

  69. BeckyB says...

    Alexa, thank you for the courage in sharing your story.

    Over a decade ago, my husband and I signed up for Be The Match, the national marrow donor registry. A few months ago, my husband was given the chance to donate to a toddler, offering her a last option in treatment. They withhold updates for a few months post-transplant so we don’t know if it worked, but we pray for her and her family every day. And he feels honored to be given a chance to potentially help this child, and her family.

    The process to sign-up is really easy, and the coordination and procedure were not a big deal for him at all. If anyone is interested, you can sign-up here: https://bethematch.org/

    • Becky says...

      Same name different Becky! This a great reminder! Thank you. I did this so long ago I’m curious if I’m still in their system. I’ll look into it. I did see that there is an event close to my current town this month.

  70. Madison says...

    Thank you, Alexa. Thinking of you and your beautiful family.