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. melz says...

    My thoughts & prayers go out to the entire family.Mama you are a RockStar like no other! Thinking of this story deeply….

  2. liz says...

    This wasn’t what i was expecting when i went to read Cup of Jo this morning. I lost my son to leukemia 6 years ago , he was 10. Most days, i am not overwhelmed by the trauma of having lived as a cancer mom and beyond , but then there are reminders which bring it all back in a flood of emotion. I think it is amazing and positive that you are able to share your experience with this community. Much of your story is very familiar to me – at the time it was all very “normal” and routine – dotted with highs and lows. I wish the best outcome for you and your family. I am sure you have lots of support, but if you need anything feel free to reach out.

    I would like to remind people that childhood cancer research is terribly underfunded and that they should donated where they can .
    Other ways to help are to donate blood, platelets and sign up for the bone marrow registry ( this is pretty leukemia specific, but could literally save someones life). here are a few links ( i’m sure Alexa has her own):
    https://www.mskcc.org/about/get-involved/donating-blood
    https://www.dkms.org/en/register-today
    https://society.mskcc.org/treasure-chest-wish-list

  3. Maggie Spada says...

    As a cancer mom myself — thank you. This is all so honest and real.
    Being a cancer mom is sad sorority to join, but a ferociously tight tribe. Pediatric cancer needs more funding, period.
    Love to Alexa and Lou.

  4. Kimberly says...

    Thank you for your candor and honesty. Your son is fortunate to have you as his mom battling in his corner. I hope for the best recovery possible and for you to have glimpses of normalcy every day.

  5. Betsy says...

    I have 2.5 year old identical twin boys. Reading this — it is everything I’m really afraid of. I feel like someone just hit me, it’s so visceral. I am glad she wrote this, though, and you shared it. I will pray for her family, especially her son.

  6. Nicole Barlass says...

    Sending you love and and positive thoughts, Alexa. My son was diagnosed with leukemia two years ago. If you ever need someone to talk to about those long hospital days, I’d be happy to commiserate. 💕

  7. Heart Mom here, sending all my love to the Cancer Mom. We’ve been out of the hospital for 5 months, but this put me right back there with you. The 8am Rounds. The onslaught of “helper employees” wanting their time with you (a “do not disturb” sign on the door helped us so much when we needed a break). The “you can’t hold / comfort / fix your kid” feeling. You know what still gets me? The smell of the antibacterial soap. Nothing triggers me faster than smelling that soap. Hope West, Lou, your husband, and you are happily reunited soon. You’re doing a great job, mama <3

  8. Lauren E. says...

    Alexa,

    I hope you read the comments section here and feel even a fraction of the love and support we’re all sending your way. Thank you for sharing your story. Your kids are so lucky to have you.

  9. Sithara says...

    I almost missed my subway stop because I was so absorbed in reading this. My heart goes out to you and thank you for showing us the hourly swings and misses and triumphs and disasters in facing this. I am awed by your resiliency.

  10. Julie says...

    Thank you for sharing your experience. I promise not to take the health of me and my children for granted. It’s all I can think to do to honor what you are going through.

    My dad had a long illness in and out of the hospital ICU. It’s not the same as what you are going through, at all, but I remember every single time someone died. The universe was forever altered.

    Sending you peace and a shit ton of good days.

  11. Nicole says...

    In tears at work. So beautiful. Wishing you and your family strength.

  12. Nerissa says...

    I am praying for you and your precious family.

  13. Melissa says...

    Thank you for sharing such intimate moments of your family. While I’m a stranger from afar, you and your family are now in my heart. As a fellow mother, I am thinking of you, praying for you, crying with you, and just wish you the very best as hard days move forward.

  14. liz says...

    Your kid is so lucky to have a mom like you.

  15. Suzi Kaufman says...

    Beautiful story, thank you. This hits home, as my son is a leukemia survivor. Not a day goes by we don’t think about childhood cancer and it’s fighters. Love to you, you strong family.

  16. Anne says...

    What a wonderful journal and wonderful family. Hoping for a quick smooth recovery for Lou and the rest of the family.

    Such a well written journal reminded me of my friend’s journaling, although she sadly lost her daughter late last year, shortly before her 2nd birthday. I will never, ever understand childhood cancer (I’ve unfortunately had 3 coworker’s lose a child to cancer in the past 5 years), but there was something about Leigh’s writing that I found especially beautiful, and I hope none of you mind if I share an excerpt here:

    “Sometimes when people have said they don’t know how we’re enduring this or they wouldn’t be able to do it or they don’t know where our strength comes from, I tell them that I don’t know either. All I know is that Kenneth and I are doing exactly what we must to save Myra’s life, which is what any other parent would do to save their child. We’re not remarkable or stronger than anyone else; in fact, we feel weaker and more downtrodden than ever, but it doesn’t stop us from waking up and walking this difficult path every day because it is precisely why we’re parents – to love and advocate for our children no matter how hard it gets. I told one of our NPs recently that if God told me he would take me back in time and erase the childhood cancer journey and relieve us of this hardship and pain but that we could never have Myra, I would not waver in my decision to do it all again. If the only time we are allowed to have her is through sickness, then I would do it all over again. Myra’s life and love and light, even if we only get her a short time is absolutely worth it. I don’t wish her pain, and I want to take it away, but I would give anything and endure anything to get to be her mother, and I would never take this journey away if it meant we never got to meet her.”

    https://www.caringbridge.org/visit/myraconquersall/journal

  17. Summer says...

    Sending so much love to you and your family. You are such a wonderful brave mother.

  18. Sara says...

    Thank you for sharing, I’m overwhelmed by your strength. Sending so much love to you and your family from Chicago.

  19. Sly says...

    Sending love and prayers to all four of you. <3

  20. Amelia says...

    I don’t have much time to write but wanted to say that this is breathtaking and so stunningly beautiful and generous. Thank you for writing, for sharing with such insight and vulnerability. This is a gift and I will be holding your family in the light.

  21. Rusty says...

    Thank you for your courage in sharing your story, warts and all.
    I cannot imagine what it’s like for you, or little Lou, or the other half of your family still at home, holding it all together, walking the walk, talking the talk, and all the while, totally ripped inside.
    One. Brave. Mama. And. One. Brave. Little. Bear.
    Sending love and healing to all your family.
    Wishing Lou well. ❤❤❤❤

  22. Sil says...

    All my love and good vibes to you and your family! I hope Lou gets well soon <3

  23. Heather says...

    Thank you for sharing your family’s story ❤️ Sending love and a prayer..

  24. Andrea says...

    Sending love, thoughts and prayers to you Mama Bear from Atlanta!

  25. Julia says...

    This was beautiful and heart breaking! All my prayers and thoughts for you, your family and all the families going though this! You are amazing!

  26. Nancy Coates says...

    I’m praying for your family.

  27. Thank you Alexa, for sharing your family’s story. I will hold you and your family in the light as you make this harrowing journey. The strength of a mama’s love is an awesome power to behold. Be well.

  28. erin says...

    what a beautiful, courageous mama and family. i’m praying for lou and all of you.

  29. Bonnie says...

    Thank you for sharing your story– sending love and support your way. xoxo

  30. Willow says...

    I accidentally posted a reply above so am repeating my post here. How about we use our support and good wishes for Alexa and her family in a practical way? It takes just a few minutes to sign up as a blood stem cell donor and maybe save a life? How wonderful would it be to be able to help someone who’s suffering. Here’s a link to the UK organisation. The FAQ page links to pages for the US, India and lots of other countries xx

  31. Lindsay says...

    Sending your sweet family, especially Lou, so much strength and love. You got this, mama. 💖

  32. Lindsay says...

    As they say, the reason we all feel so heavy is that we carry a bit of one another in our hearts. I’ll be thinking of your sweet family, especially Lou, and sending strength and love. Thank you for sharing this sliver of your precious boy. You got this, mama. 💖

  33. O says...

    Hi Alexa, you have such beautiful, cool boys! I love Lou’s disbelief in response to the “cereal bath” and that the boys tell each other about their day over the phone. Also the “mom hack” boat is just such a supremely good idea! I don’t know if it makes sense for you, but I thought I’d recommend making an audio time capsule of the hospital noises and little conversations. You might never listen to it after you’re home again, but it might be useful someday. Best wishes to you in all the days to come!

  34. Aoife says...

    Sending you all my very best wishes and thoughts, what a wonderful mother you are. I’m so very sorry you and your family are experiencing this, and I hope and pray for you x

  35. Carly says...

    I am rooting for you and Lou and your family! Hang in there. X

  36. Sara C. says...

    My oh my. I’m praying for you, and all those other mamas and papas and families dealing with this unthinkable. Your kiddos are so lucky to have you.

  37. Cari says...

    Sending you all love and prayers from Portland ❤️

  38. Katie says...

    Prayers, good karma and good vibes to you and your family.

  39. Charlene says...

    Thank you for sharing your story. As a former peds onc nurse, know that we see you, we see Lou and we’re here for you. You are stronger than you know. Blessings to you and your family.

  40. Mekhala says...

    My heart was breaking and was uplifted at the same time reading your story of incredible bravery and putting your best foot forward for your son. Sending you love for being an incredible caregiver

  41. Justine says...

    Oh mama. Much, much love to you and your family. Thank you for sharing yourself, your family and your reality with us.

  42. Alex says...

    Hero.

    Love.

    Go momma go.

  43. Krystal Graybeal says...

    Remarkable momma. Beautiful family. Good luck, good luck, good luck.

  44. Tears in my eyes, awestruck at your brilliance and grit. It’s not fair, and yet you do little things to make it better. Your getting ready every day is a small miracle and is normalcy to your son, and hopefully some days to you too. So much love to you.

  45. Ariane N Gauvreau says...

    I am sending so much love to you and your sweet baby.

  46. beth says...

    Your post moved me not to tears, but to sobs. I am putting all my best thoughts for your family out to the universe. I hope you’ll be home together, healthy and happy, soon.

  47. V says...

    ❤❤❤❤

  48. rach says...

    youre a warrior!!!! prayers from california <3

  49. Katie says...

    My heart aches. Thank you for sharing. Sending love and prayers to your son, you and your family.

  50. French girl says...

    This piece is so beautifully written.

    Sending a huge halo of peace, strength and good luck your way.

  51. Jennifer says...

    So so so much love. This is every parent’s worst fear, and you are handling it courageously. You’re doing everything right ❤️

  52. Thank you for including this story as it gives voice to something that thousands of families experience each year. We went through cancer last year with our six year old, and sometimes the best medicine for moms is feeling less alone. Alexa, thank you for being brave and sharing.

  53. Tuide says...

    ❤️

  54. Beth says...

    My only points of comparison are a five-week NICU stay and two pneumonia-related hospitalizations for my preschooler daughter. I do know the simultaneous dullness and horror of hospitals, but I don’t know what I imagine is the paralysis-inducing terror of a cancer diagnosis. I sleep with my daughter in the hospital, too, regardless of who thinks it looks weird, and I love the idea of you snuggling Lou, via boat or otherwise, no matter what. You are anchoring him. You will get through this. I am sending you and your whole family my best mama thoughts.

  55. Traci says...

    I was a Cancer Sibling for a good portion of my childhood. It’s like speaking a totally different language from everyone around you. Hoping for you to find some solid comraderie, and more than that, I’ll hope and truly pray for your family. Hang in there.

  56. Colleen says...

    Keep the faith, dear mama.

  57. Cheryl says...

    I kept hoping magically this was written years ago, maybe 2015, so I could just get to the post script where she announces all is well, Lou is in remission and that dream life of cancer will never haunt them again.
    I guess since it just got posted that will just have to be my prayer for them. It’s incredible what the human heart can endure. Maybe if we all send our strength, you warriors will receive it and all will be well.

  58. Dahlia says...

    My beloved baby brother had neuroblastoma at 1.5 and 3 years old; I am 10 years older, so I experienced it vividly. It was so hard on all of us — and worth everything, of course. He was one of the first children to survive that cancer, and he’s 40 now. I wish you as much joy and as little pain as possible in the days you have together. Love and prayers to you.

  59. M says...

    You’re amazing, and so is your sweet boy. I wish we could band together and make this kind of unimaginable pain go away but until then I’m glad the world is full of people like who fight hard to bring light to dark times. Big hugs and lots of prayers to you and all the parents going to battle for their littles. It’s ok to leave the building and cry if that’s what you need to do, you’re amazing.

  60. Allie says...

    Thank you for this, Alexa. We need more stories like this, if only to remind how precious we are to each other.

    Sending you, Lou, and your family wishes of health and strength for many more tomorrows, hopefully together soon enough.

  61. I offer fervent prayers of comfort and hope for your family. Thank you for sharing this story. I’m trying to hold back tears now, grateful for the not-so-serious motherhood issues I let get to me so much. I will be thinking about and praying for you and all cancer moms often.

  62. Suzanne says...

    Dear Alexa. Nothing that I have read or will still read today will be more meaningful than this journal of a day in your life as the mother of these exquisite boys, and as Lou’s steel magnolia navigator through this cancer hell. If only I could gather up grace in droves, bottle it, and ship it to Room 407 for you to unpack as needed, I would do so in a heartbeat. Just know that, from a little home in Michigan, I am beaming you much love, light, and goodness for more beautiful days ahead.

  63. Jill says...

    I’m praying you Lou, you, West and your husband. God bless you all!

  64. Yvonne says...

    My heart and prayers are with you all. It takes strong love to hold a family together during painful times and I am sure it’s not easy, but you and Ian are amazing. I will keep you all in my prayers. May it all turn around soon. I will double my prayers for your lil guy.

  65. lyly says...

    Thank you for sharing this. I’m a physician and its humbling to hear the experience from your side. All my thoughts and prayers.

  66. J says...

    Thank you for sharing your story. As the nurse helping silence beeps, giving meds for nausea, and responding to the patient next door, it was spooky to read the family perspective on the events of my night. I want you to know that without a doubt the nurse who came in after being in the other room was not business as usual on the inside. We know how scary it is for other patients and their family members to know what’s happening in the room down the hall so we do everything we can to be calm and present when we go into your room. It’s there though and I promise you, we FEEL it. Sending you all the strength in the universe as you, your sons, and your husband navigate the unfair and messy world of peds onc.

    • beth says...

      Thanks for all you do. Nurses are the BEST.

    • McKenzie says...

      Wish I could give you an internet hug for the work you do.

  67. Alexandea says...

    So impressed by your strength and your family’s and it’s so unfair that you all (or anyone) has to be in that situation. This is beautifully and heartbreakingly written. Sending love

  68. Julia says...

    This is an NYC mom with a fridge full of food and an apartment with a comfy couch nearby the hospitals. If you need any stranger-friends, I know an army of great women ready to help in a heartbeat. Please know that you are not alone, even though you’re far from home.

    • Flo says...

      Blessings to you and all those great women. Generosity.

    • Marybeth says...

      This is such a good representation of females supporting, holding, and championing each other through all of life’s shitty and wonderful times. Hoping you guys find each other. <3

    • Sly says...

      <3 <3 <3

    • lena says...

      Such a nice comment and invitation, Julia.

  69. Bets says...

    My heart is with you, Lou and all families battling horrible diagnoses like cancer. Hoping for positive updates very soon

  70. Amanda says...

    Sending love and strength to you and hugs for Lou and the rest of the family.
    Reading this seems so matter of fact, as I went through a medical experience with my son, but GOD IT IS HARD. I had no idea how to be the tough, matter of fact mom taking it all in and processing, and following orders and also be the new mom whose heart was breaking, over and over. My son was born with thrombocytopenia and neutropenia and needed treatments for the first 2 weeks of his life, and weekly venous lab draws, accompanied with disappointing phone calls with his hemotolgist for nearly 5 months. They still dont know why it happened but we are in the clear for now. I hope to hear updates on little Lou.

  71. Carol says...

    Reading this was eye opening. The strength that every member of the family has to have is incredible.
    I am sending prayers your way for a good prognosis and continued love.

  72. Eli says...

    You are so beautiful, Mama! We all love you and thank you for sharing your experience with us here.

  73. Emily says...

    Thank you for telling this beautiful and gut wrenching story of your day. You and your beautiful boys are in my heart and mind. Sending you love and courage though it sounds as if you have both in abundance.

  74. Andrea M. says...

    You are an amazing mother. Prayers to your family from mine.

  75. Catharine says...

    Lou is so, so lucky to have you as his mom, and just as much, thank you for sharing your wonderful Lou. A restful evening to all of you. XO

  76. Teresa says...

    My hat off to you and all your family! It affects everyone and your strength should be an example to all. How brave!!!! My thoughts and prayers are with you four!!!!

  77. Meredith says...

    Sending love your way.

  78. Nicole says...

    Thank you for sharing such a heartbreaking glimpse into what you’re dealing with. My heart and prayers go out to you, Lou and your family.

  79. Holly says...

    Thank you for this. Thank you.

    • Elena says...

      Gah. I’m crying. Thank you for sharing. What a brave hearted momma you are. Sending prayers to you and your family. ❤️

  80. Cynthia says...

    My heart goes out to you, Lou, West, and your husband. You are in my thoughts and prayers.

  81. M says...

    Just…so much love to you and your family.

  82. Christina H. says...

    I wasn’t sure what to say, but I wanted to say something. Thank you so much for sharing. Your strength is inspiring. Sending you lots of love. <3 <3 <3

  83. MD says...

    I’m so sorry Lou and your family are going through this. It sounds horrible, and just seems so unfair. I’m wishing you strength, and am so thankful you took the time to share your story with us. Thinking the best thoughts for Lou!

  84. Claire says...

    Alexa, thank you so much for sharing a day in your life with us. I have so much compassion and empathy for what you and your family are facing. I wish you and your children comfort in this inexplicably difficult time. Thank you for helping us to understand what supporting a child with cancer looks like.

  85. Rachel Roberts Powell says...

    Sending love from Seattle!

  86. Emily says...

    Sending you light, love, prayers, and hope…you are not alone.

  87. Kim says...

    This was a heart wrenching read. I wish your family health, rest, peace and good test results. You are a great mother.

  88. Taryn says...

    Alexa, thank you so much for sharing a day in your life. Summoning all the mom energy in the universe to send your way, so you can pass it on to Lou. He and West are lucky to have you.

  89. Sara says...

    Sending Alexa & Lou & West all the love and peace and light. I hope you can feel all of us rooting for you & your little man. ❤️❤️❤️❤️

  90. rachel says...

    wishing i could reincarnate as a caftaned therapist in a cocoon chair with a plate of cookies. sending love to you and your darlings.

  91. Kristin says...

    I live on 1st Ave in Manhattan… If you ever want a home cooked meal or a quick cocktail/ glass of wine at any time of the day let me know. Life is so fucked up. Lots of love to you and your family.

  92. Roxana says...

    Thank you so much for sharing about this. Thank you for showing how devastating and yet prosaic(?) it all is.

    My youngest son was diagnosed with leukemia shortly after birth. He just turned three. We’ve been “in the clear” for the last two years (officially discharged from the oncology department this past spring), but you never really feel like you’re “in the clear,” right? Part of me is always looking over my shoulder for that evil monster. He casts a long (PTSD riddled) shadow and sometimes you have to chase the sun rays on either side of him.

    If there is one thing that I “learned” from this journey its that we really, truly only have today. Childhood cancer or not, all you get is today. One second, one minute, one hour, one day at a time. The monster has not visited us today and so I will have joy and gratitude for that, and will hope and pray he doesn’t come back.

    Praying for healing for your precious Lou; praying he and you and your whole beautiful family have peace and joy in the process.

  93. Catherine Laing says...

    What a beautiful post. I have a lot of experience with paediatric oncology, and reading about your experiences with Lou rings such a familiar bell. All I can say Mama, is you’re doing it right. You’re there for (both) your children, you’re connected to your husband, you know what’s happening medically,,,You got this.

  94. Jill says...

    This SUCKS. Absolutely effing sucks and is unfair and it shouldn’t be happening and I’m sorry.

    If you’d like to receive mail from a stranger, maybe Joanna can be a go-between? My daughter Lou would love to send a card to your Lou.

  95. Laura says...

    While most of us (myself included) can only empathize with what you and your family are going through, you’ve given us a window into your world. Thank you for sharing.

  96. Greta says...

    The strength and hope of a mother know no limits. I’m in awe of your depth of love and devotion, Alexa. I don’t know how I’d do it, but also, I do. Sending you prayers from another mama heart, far away.

  97. Silly Lily says...

    Oh, you dear people. So wrong, all of this. For a child to have to suffer……..really there are no words. Thinking only good thoughts on your behalf, and sending prayers out to the universe. Please send an update SOON, telling us that all is well. Love…….

  98. Vanessa says...

    I have a friend going through this, what we’re some of the most helpful things people have done for your family?

    • Clare says...

      This is a great question!

    • Sarah says...

      I would love to hear a reply to this question as well.

    • Roxana says...

      Every family is different, so it’s hard to say. I know that getting texts from friends saying that they were praying for and thinking of us were really meaningful to me when my son had leukemia. “Praying for you today!” “Love you guys!” A message that didn’t require a response, but let me know that we were loved and were not forgotten was so special. If I could reply, I would, but if I couldn’t the pressure was off.

      As for tangible help, I appreciated questions that only needed a “yes” or “no” answer. E.g. “Can I bring you a meal to you (at the hospital) or your family sometime this week? Say Tuesday?” Your friend can say “No, thank you!” or “Wednesday would be great! Thank you!” “Can I do laundry for you?” “Can I drop off anything at the hospital?” “Can I pay for a cleaning service to come to your home?” “Can I take your other kids to Rainforest Cafe? Or some other awful place that they would love, but would give you a raging headache?” Other ideas: sometimes my husband would need to bring something to me, but couldn’t because he was home with our other two children and timing would be awful, so my brother would play courier, which was fantastic.

      A few other ideas: have a meal delivered to the family at home or the hospital, give a gift card for any easy chain restaurant (Panera, Starbucks, Jimmy Johns) and then a dear friend sent me a care package with hand lotion, lip balm, hand sanitizer, good quality snacks and candy, a magazine, slippers, etc. . . I didn’t have nail clippers for several weeks in the hospital, which was completely maddening!

      Again though everyone is so different that it’s hard to answer this question. I hope this helpful!

      God bless you for wanting to love and support your friend!

  99. Jen says...

    I hear your pain in your words. Your utter exhaustion. Your strength. Lou’s strength. I hear you ache for the mother who lost her child, and ache for the moments stolen. Nothing I can say can make it easier, and I truly cannot comprehend your worlds. But my heart is with you and your words have touched me. Keep fighting Lou! You’ve got this!

  100. Laura says...

    I send you ally lobe and strength. From mum to mum

  101. Mariana says...

    My heart goes out to your family. Wish you all the best.

  102. Sharon says...

    Alexa…I will be thinking about you and Lou (and West and your husband) very often. Only good, hopeful thoughts. Sending hugs to you…

  103. Rebecca says...

    Thank you for your grace and strength to share this. Sending love and prayers, with the hope it could and will help.

  104. Debby says...

    This is so heartbreaking, but important. Thank you for sharing with us and know that our hearts are collectively with you and your family.

  105. Shan says...

    My son was diagnosed with cancer at 10 months and went through treatment for 3.5 years. I know how immensely difficult it is for your whole family, and you sound like such an amazing, amazing mother. I just wanted to send my love, strength, and support for all of you.

  106. EJ says...

    Love and light to you, Lou, West, and their dad. And to the mom in room 408 and all the parents like her.

    I often worry, probably more so than is healthy, about this happening to one of my children. Why this child, and not mine? It could be mine tomorrow. The randomness of it all is devastating.

    Thank you for sharing. May this be a story of strength that Lou takes with him into a bright future.

  107. Darcie says...

    Thanks for sharing your story Alexa. My son has Cystic Fibrosis and we’ve spent a lot of time separated from the rest of the family in the hospital as well. Praying for you all. And I’m going to borrow your lipstick trick. Early am rounds can be rough!

  108. karen says...

    sending good thoughts to you and your family! thank you for sharing. we’re at the beginning of a medical journey with my daughter and i’m so scared. thank you for a glimpse of your journey and courage.

  109. Meg says...

    Beautifully written. Thank you.

  110. Sarah says...

    I can‘t stop the tears over here. I lost my youngest brother to cancer (diagnosed at 13, he passed away at 16) so the battle and all that pain and helplessness is so near to me still… I just cannot begin to imagine it as the mother of a young child. Sending love and strength and prayers to you, the mama in 408, the mama in 409 – You are all so strong, so beautiful.

  111. Jeannine says...

    I’m a mom in the area and if you need anything – a home cooked meal, a place to rest, I would be happy to share my information.

    • Julie says...

      That is so kind! I hope she sees this message!

    • lena says...

      Such a nice offer, Jeannine.

  112. jdp says...

    oh my god. thank you for sharing this. and good luck.

  113. Farhana says...

    I’m holding you in hugs, love and prayers- you and your husband and your sons. Please let me know how I can help you.

  114. K says...

    You’re a great mom

  115. Elise says...

    Thank you for sharing. Sending light.

  116. Leigh Licata says...

    I had cancer when I was a kid. I was older. A teenager so I may have understood it better, but I always thought it was harder on everyone else. I just did what they told me to do. Now 30 plus years I’m healthy and happy. I went to college, law school, and got married. I’ve always said the best part of my cancer was getting to adopt my kids. I can’t imagine my life without them.

  117. Amy says...

    Thanks for sharing! It’s so helpful to have a clear idea of what it’s like to walk in another’s shoes; obviously every Cancer Mom has a different story and perspective, but this gives me a clearer idea of what happens in the day-to-day and hopefully helps me support them more effectively (I hate being asked, “what can I do to help?” Even in the good times, I’m a terrible delegator and my brain is empty of what someone could reasonably help with so I try to be specific about what I can do for someone – i.e. I’m headed to the grocery store; you can send me a photo of your grocery list and I’ll drop it off in an hour, or “I’m making ___ for dinner tonight; can I double it and drop one off for you? If that’s not your favourite I’ll try again a different night!”

    • Absolutely “yes” to this! We often can’t think enough to ask for things when we really need them, so someone else just taking the initiative is SO helpful!

  118. Denise says...

    When my mom was receiving treatment for leukemia at the Mayo Clinic, she (and I) wore bright lipstick every day. It cheered us up and everyone who visited her room would comment on it. She never wanted to “look sick”.

    When in high school, if my sister and I were ever having a down day, she would admonish us to wash our face and put on some lipstick. Her armor for facing a hard world that she passed along to us.

    • Denise, my Dad has leukemia right now so your comment caught my eye. It made me smile to think of you guys wearing your bright lipstick together. Hope your Mom is OK. Sending you a big hug. Xo

  119. Caitlin says...

    Alexa, thank you for sharing. I actually just started chemo today myself and as we head toward transplant are trying to find the way to help our three year old understand what’s happening. I’m not sure what to say but your sharing is an encouragement.

    Also, thank you COJ for that post a month or so ago about different family sizes. It was a time where we were starting to realize we’d only have one child and the comment section gave me a lot of peace.

    • R says...

      Caitlin, sending you love and strength for all you are going through! And thank YOU for sharing your story.

    • Claire says...

      Wishing you the best of luck with your treatment, Caitlin! So sorry to hear you are undergoing that. I read another blog, The Mom Edit, whose author, Shana, had breast cancer a few years back. Here’s her blog: https://themomedit.com

      Her boys were young at the time, so I bet she’d have some helpful posts on how to address cancer with your son. I hope that helps. xo

    • Roxana says...

      Oh, Caitlin, I am so sorry to hear this. Praying for you and your family!

      Maybe ask one of the social workers at the hospital about how to approach things with your three year old? My youngest son battled leukemia and I was so encouraged by the hospital’s resources. Their social workers met with us and gave us materials to help us communicate everything to our older two kids (5 and 3 at the time) who were at home and totally confused and disoriented by everything. Hopefully, they have some age-appropriate resources for you? I know you’re processing so much right now. Love and hugs to you!

    • Williw says...

      Sorry Caitlin-I somehow replied to your comment instead of posting a new one. Wishing you all the very best and sending you strength.

  120. Leanne says...

    Oh Alexa. My kids are around the same age as Lou and West, and I read this with a lump in my throat. I’m so sorry that your family is going through this. Thank you for sharing your experience.

    It made me think of this video: https://www.youtube.com/watch?v=HvNF0yFUcx0

    Parents like you and your husband are incredible superheroes, putting on happy faces for your brave little fighters. I hope that you have a community helping you all through this too, so you can work through the complicated emotions and weight that treatment brings. All my love to the four of you.

  121. agnes says...

    Thank you for writing the truth, we need it. You write beautifully, I love your pink blouse. My son is 6 also. Please tell Lou and West that my family, from Paris, is sending you plenty of french good vibes with Eiffel towers lights. You’re great parents.

  122. Sarah says...

    You are amazing momma! Tears in my eyes as I read this. I rarely post but your strength and love for your family took my breath away. Sending so much love and healing vibes your way.

    p.s. your hair and personal style is on point! :)

  123. I so did love this and keeping you in my prayers. I feel like there are 2 lives one with health , one without. When I had a cancer a few years ago the world becomes much smaller and that’s the only focus. Even now when I’m healthy I think back to that time and wonder how I did it. You’re doing beautifully and prayers for your sons!

    • Anna says...

      There really are two lives. Thank you for saying that so clearly.

  124. Megan says...

    My husband is a childhood cancer survivor. His relationship with his mom was so strong because of it. Reading through this really made me appreciate her and what she must have gone through. It is such a unique trauma- especially when you have more than one kid.

    I too, dress up when I’m under stress. I see it as armor. Lipstick can feel like a key to survival.

    I’m going to stop and say a prayer for your family. Thanks for sharing.

  125. Rebekah says...

    Such lovely writing. What grace! Sending love your way. ❤️

  126. Laura says...

    Ugh, how gut wrenching. I remember laboring beside a mom, both of us trying to avoid C sections. I felt exhausted, grateful, and brutalized after 48 hours of labor and then found out that I had been able to avoid surgery but she had not. I felt such guilt – the moment you’re describing with the mom in the room next door is unthinkable. For her, for you, for your son, for her care team. You are brave beyond brave. ❤️

  127. Elizabeth Monaco says...

    Wow…. may God watch over little Lou and keep him strong to overcome this disease, and may He give all the energy Alexa needs to help him. This really puts everything in perspective. My prayers for Lou and family .

  128. Abby says...

    This hurts my heart. Alexa, you’re incredible, I wish I could wave a magic wand for you and all the other cancer-moms and cancer patients and make it better. It’s just so unfair.

  129. Anna says...

    What amazing strength! Thank you for sharing your story with us. Sending you hugs & rainbows from Michigan.

  130. AMK says...

    Thank you for sharing your day. I am sending you and your family an enormous e-hug ever invented on the internet. So much love your way!

  131. Quynh Le says...

    Prayers. Just prayers, healing vibes and a ton of love your way.

  132. Julie says...

    This is beautiful and devastating. I can feel your strength AND your exhaustion in these words. My best to you and your boys.

  133. Anna says...

    I’m sitting here with tears in my eyes as I read this. I was in middle school when my 3-year-old cousin was diagnosed with leukemia and can truly say childhood cancer is hell on earth for everyone involved- the child, the parents, the siblings that have their world thrown in turmoil, too. My cousin has been cancer-free for a while now and I’ll be praying the same for your sweet boy. And to anyone reading: please give your spare change to Ronald McDonald house! It’s such a lifesaver and place of respite for families going through the unimaginable.

    • Sarah says...

      Yes to Ronald McDonald!! It is a brilliant organization whose services to families is amazing. Give more than change if you can!

  134. Kate says...

    My goodness – what a marvel of strength you are for your family. My heart goes out to all of you

  135. Gillian says...

    Thank you so much for sharing your heart with us, Alexa. I have all of the hope for Lou. He and West are pure wonders.

  136. Steph says...

    Wishing you and your family so much strength. As i am reading this i am thinking of my mother in law. My husband is a two time survivor of childhood cancer. I have no idea how they all got through it but they are all my heroes. They raised a wonderful human who i was lucky to find and marry. 25 years later his oncologist went to his medical school graduation. Good things can happen.. praying for all of you. We are in brooklyn if you ever need extra helping hands and hearts.

  137. Candace says...

    Sending all the Mama love I can out into the universe for you and your warrior son and his brother and your husband. We went through a major surgery with our son when he was 8.5 months old and there is nothing quite like the exquisite ache of trying to comfort a child in pain who doesn’t understand what’s happening or why. Oh my heart. Helping your child navigate cancer treatment sounds like an insurmountable task that you are clearly handling – one moment and one day at a time – which is the only way. x

  138. Sarah K says...

    This was so powerful. Praying for you and your sweet baby guy.

  139. Katy says...

    Alexa, I have never walked in your shoes, but I thank you for painting such a vivid picture and giving us some limited understanding of what these days are like for you and your family. All I can offer is my deep admiration for the gifts you are providing to your boys and your husband. I am not religious or spiritual, but the strength and resilience that each of you show is something truly amazing to behold. There doesn’t seem to be any right thing to say, but from one mother to another, you are amazing.

    • Ismah says...

      You sound like such a wonderful mama!

    • MB says...

      So eloquently written. I’ve had a hard time trying to find the right words and so I’d just like to ‘ditto’ what you’ve written. Alexa, I don’t even know you but wish I could share some of your family’s burden in order to lessen it for you; it must just feel like too much to bear. Sending you all positive thoughts and love from across the pond

  140. Tess says...

    In tears as I read this (which never happens); I can’t even imagine having to go through this with one of my kids. The world is held together by the strength of women like you, Alexa.

    • Angela says...

      Alexa, ditto to what Tess and others have beautifully said. You are holding it all together so gracefully. I hope that when this nightmare is behind your family, you have the space to reflect on how strong you really are. Thank you for sharing, you and your sweet family will never be far from my mind.

  141. Juana says...

    Such Courage, love and grace. Your writing made me laugh, cry and made my heart ache at the same time. Thank you for your story.

  142. Aimee says...

    I wish this didn’t have to happen to anyone, especially a child. You and your little boy are strong and amazing- it sucks that cancer has to be part of the story. I am cheering your family on through this next part of the journey from afar.
    -two-time cancer survivor and mom of two

  143. Ceridwen says...

    Much love to all of you. It’s because of Alexa I started wearing lipstick while my daughter was in hospital. It helped. It set me for the day. Alexa, you are so kind and generous sharing with us your experience and Lou’s bravery. All of your bravery. Cereal bath! It never ceases to amaze me how kids move through it all and find the strangeness in it so fascinating. Thank you Alexa. You may not know how much you’ve helped.

  144. Kanga says...

    Wow … I don’t really know what to write, but I didn’t want your courage to share to go un-replied to…
    Thank you for this small snippet into your day, and I’m so sorry that it takes your trials and challenges for me to understand gratefulness.
    I wish you all the best drugs, knowledge and care and that you all get through this and are happily and healthily back together again soon 💕

  145. Amy says...

    I “cancer mommed” for 26 months with my 3 yr old, treated for leukemia (who is now 12 and doing well) at Boston Children’s/Dana Farber. Four other children were at home. You have so accurately described a typical day in the life! Thinking and sending prayers for your entire family. Now get back to ‘Sing’ for the umpteenth time!

  146. G. says...

    My heart hurts for you, but I am also amazed by the strength you, your husband, and your boys portray while going through this. I’m sending you hugs and love from Boston.

  147. Sarah says...

    Your strength is amazing. Blessings to you and your family. I’m going to go home and hug my children.

    • Amy says...

      Thank your sharing. God bless your beautiful family. I am keeping you in my thoughts. It would be so helpful to know what comforted you. I have a friend in a similar situation and I always feel like I’m putting my foot in my mouth

  148. Sonja says...

    Hi Alexa, your family is really lucky to have you. And you have really, fantastically, fabulous hair. I will think of your family every time I watch Sing, which is to say, a lot.

  149. Jessica says...

    My heart breaks for you and your family as I simultaneously marvel at your incredible strength. Thank you for sharing such an intimate glance into your day. Prayers for sweet Lou, West, and their mom and dad.