Cancer · Chemo mom · Childhood Cancer · Histiocytosis · Motherhood · Parenting · pediatric cancer · Uncategorized

Dear Normal Parents, A Letter From a Chemo Mom

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I am the mother of a medically fragile child.   I have been her mother for 8 years, and for nearly all of those 8 years she has been very sick, recovering, or dealing with the permanent effects of her illness.  She was born with Resistant Multisystem Langerhans Cell Histiocytosis, which is a fancy way for saying she had a pretty rare, very serious cancer at birth.  She’s okay now.  She’s got scar tissue and damage and lingering issues.  But she’s here, and that’s what counts.

I’m writing to let you know a few things about my family. You are my friends and my colleagues and my confidants.  You are funny and wise and silly and opinionated and I need that kind of normal in my life.  But, I’m not normal.  I wanted to explain a few things to you, so you understand me better, since you have to deal with me on a daily basis, and sometimes I get testy and I don’t mean to.  I thought it might just help to air out the dirty laundry, so to speak.  Just put it all out there from the pretty little things to the granny panties.

  1. First, I am you.  I’m just a few years post-pediatric cancer from where you stand right now.  So keep that in mind… you could be in my shoes.  I had a healthy (I thought) baby girl for 9 months.  I had no history of cancer and was a normal mom until I heard the “C” word.  Then I did hear that word and I was no longer you… I became post-pediatric cancer you.  But I’m still like you, somewhere deep in me.
  2. Nearly every one of you guys, without fail, say something like “You’re so strong.  I couldn’t live through that.” YES…. yes, you could and you would.  When your kid is sick, you get them treatment, you go the appointments.  You’re a parent.  You do parent things.  This is just a parent thing.  The difference in this particular parent thing is the degree of the parent thing.  It’s parent thing to the 10000th power.  Parents are just superheros without enough sleep.  Well, chemo parents are just a different kind of superhero with even less sleep.  Not better, and not worse.
  3. I’m not who I used to be.  If you knew me before my baby got sick, the woman you knew back then is gone.  She died the day that she asked God to please take her in the place of her child, withered up and burned into a pile of ashes.   But the remarkable thing is that someone slightly different emerged from the ashes.  A singed, but stronger version of me.  Less concerned with the bullshit of life.  I’m raw and honest and I’m done with the formalities that society demands. I have PTSD or anxiety or any number of things that makes dealing with me complicated sometimes.  And I’m rightfully paranoid about my babies.  I have been conditioned by years of fighting back Death in all his hooded, sickle-carrying horror.  And I’m not likely to change back to who I was. Staring down that ass-hat leaves scars and robs you of a tolerance for bullshit.   So, sorry.  The years of conditioning my mother put into me before she released me to the public has been obliterated and you get this version.
  4. Once cancer hits you, you fight it for the rest of your life.  My baby has weakened bones from the chemo and steroids, damaged bone marrow, an enlarged liver and spleen, so she can’t take a hit and is more susceptible to contagious diseases.  And because of the nature of her disease, every bump, rash, and illness is cause for concern, even 6+ years post remission.  She will be getting scans her whole life. This is forever.
  5. Just because my daughter looks okay and is not getting chemo anymore does NOT mean that this journey and the daily fight is over with, by any definition of “over with.”  Cancer isn’t just *poof* better.  It leaves permanent damage, lots of it.  So please don’t assume that because she looks good, that she is good.  Not all diseases show up in the form of skin lesions, hair loss, or a wheelchair.
  6. You will keep hearing about it from me because it’s a huge, active part of my everyday life. I will talk about pediatric cancer and histiocytosis, because everyone needs to know it’s out there.  Don’t roll your eyes or turn away.  This needs to not be marginalized.  It takes babies.  It NEARLY TOOK MY BABY.  Imagine your child, lying in a bed, half the size she should be, unable to keep food down, pale and without a hair on her head, hooked up to so many tubes you’ve lost count, and you.can.do.nothing.to.help.her.  You’d find the tallest building and scream into a megaphone too.
  7. We have to live everything in our lives differently, and it’s going to look like I am overly controlling or a helicopter mom.  But it’s all for her safety and health.  She can’t have certain medications.  She can’t eat certain things.  She can’t play certain games.  She can’t go certain places. That is post-cancer life.  I’m hovering because she is “medically fragile” and the cancer could come back.
  8. I’m not making this stuff up.  She had cancer. Her body has permanent damage.  Any attention, time out of school, access to resources she gets is not something she has because we are spoiling her.  She NEEDS the accommodations and extra resources to be on equal footing with your kids, not to get ahead.  And if we are doing something in our raising of her that you fundamentally disagree with, such as homeschooling, please assume that it’s because I know something about her that you don’t know and don’t lecture me on the virtues of the school system or whatever standardized institution I have decided against using.
  9. She’s NEVER been healthy.  She was born with cancer.  She acts like she feels great even when she feels crummy because to her, crummy is kinda normal.  So when she’s sick, or hurt, she doesn’t really react to it like she should, which means I might not find out if she’s sick or hurt until later.  If all you’ve known is crap, a little less crap seems pretty darn good and you will smile and enjoy the less crap.  That’s where she is.  Right now, she is happy and relatively healthy, but she still tires easy and still has some temperature control issues and still has asthma attacks and gets hives when she gets too excited.  And she powers through.  It’s our normal.
  10. Please talk to your kids about other kids that are different.  My daughter doesn’t want to be made fun of because her tummy is larger due to her enlarged liver and spleen.  And your kid doesn’t want to be known as the jerk that made fun of the kid with liver disease.  That’s not cool for either kid.  The talk I had with my daughter about this went sorta like this: “If you see a kid that looks different and you can’t understand why, ask nicely.  You don’t know if they are missing their hair because they are on chemo, or if they walk funny because they broke their leg and it healed wrong.”  Appeal to your child’s empathy and try to relate it to what they understand.
  11. My kid might act out.  She spent a HUGE chunk of her psychological developmental time in a metal crib in a hospital hooked up to morphine drips and chemo infusions.  That’s not to say that I LET her act out, but it happens.  She is not spoiled because she was sick.  She’s still playing catch up.
  12. I feed my children what I do after years of research and discussion with physicians.  And while you might look at me like I’ve lost my mind when I say that while my child munches down on a McDs french-fry, please keep in mind that I happen to know what kind of oil they use, that those fries are glutten free, full of starch, and don’t trigger a puke reaction from a nauseous kid.  So yes…  I know what I’m doing.  I don’t need pointers on non-GMO, organic humus or something along those lines.  I got her through cancer.  I’m pretty sure I’ve got this.
  13. We did nothing to cause the cancer.  No one did.  And implying that we took an action that nearly killed our kid is insulting and will be an automatic removal from the Christmas card list.  Also, we are being led by the specialists for her treatment. So unless you’ve literally been in my shoes before me, please don’t tell me that chemo is bad or that I need to try her on marijuana or or some other crazy stuff.  (Seriously… I’ve had this conversation with a mom before.  Seriously..)
  14. When someone tries to tell me how to raise my child, it can come off as judgmental, even if that wasn’t the intent.  That just makes me uncomfortable.  It makes me want to hide how I’m different, but I can’t.  It makes me not want to talk to people at the PTA, or in girl scouts, or at the pool.
  15. I have trust issues.  I don’t trust people.  And this is more than paranoia.  Strangers don’t know that shes medically fragile or what they need to do if something happens. This ranges from bus drivers to babysitters.  So I will drive her to school and she won’t be staying with your kids during a sleep over. It’s not you, it’s me (cliche, I know, but also true), but she’s still not coming over for a sleep-over.
  16. When she accomplishes nearly anything, we celebrate, win or lose.  Because she nearly wasn’t able to run that lap.  She nearly wasn’t able to sing that song or dance that dance or climb that hill or live this life.  The fact that she can is worth celebrating.  If I’m too soft on them and that makes them grow into adults that don’t strive for more, better, faster, everything, then I’m okay with that.  There’s something to be said for a happy life driven by contentment rather than a life driven by ambition and the need to be the best.

Thank you for reading this and listening to me.  I know you might be asking “what can I do?”  “How can I help?”  You don’t need to do anything, but you can help me in how you act around me.

What I need is to hear normal things not related to the right way to raise a kid.  I need to hear about how great the new librarian at the school is and what book you’re reading.  I need to gossip about how our husbands can’t put their clothes away and talk about normal things the kids do.  All I need… all any of us need is for you to look at us, smile, and act like what we are doing is normal. Because, in an echo of the words we hear so often as parents of a medically fragile child, this is “our normal.”  This broken, worry-filled, medication-laden life is my normal.  And I just want to feel normal in a normal world, and you, my dear friend, some laughter and mundane conversation, and a deep cup of coffee can make that happen.

Please note:  This is from the perspective of me… a mom.  My husband has been there beside me this whole time, fighting the good fight, and being a general superhero.  He’s amazing.  And what he does is in NO WAY diminished  by what I put on here.  He needs normal too.  He needs to complain about my constant hatred for our kitchen cabinets and how he really needs a kid-free, wife-free vacation.  And much like him, there are tens of thousands of chemo dads out there that work their asses off keeping their babies alive.  So shout-out to all the Chemo dads.  You guys are badasses.

 

32 thoughts on “Dear Normal Parents, A Letter From a Chemo Mom”

  2. As an oncomom myself you tugged on every emotional string I have. Yes, yes, yes. And just for good measure, let me repeat that. YES. Thank you for putting words to everything that all of us think and feel but just don’t manage to put this eloquently.

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    1. What about the dads that go through the same fight. These articles that focus just on MOM really diminish the emotion that the family or the parents endure.

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      1. I plan to make the book a survival guide for dads and moms. My husband is going to help me write it. What I wrote was a letter from my heart, and I’m a mom. I TOTALLY get that dads are 10000% in this mess with us. It’s a different perspective and a different reaction, and I didn’t feel I had the right to stand up for dads. However, I do ask for input from the moms and dads in my online support groups, and will continue to do so. If you want to friend me on FB, When I’m writing this summer, I will put questions on FB for parental input, and you can help me out.

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      2. I talked with a friend of mine and he suggested the same thing. It wasn’t meant to be exclusionary, so I made edits. Keep in mind, this blog is kinda a place where I go to gush what I am feeling at the time. I’m open to suggestions and additions. And I’m absolutely open to opposing views or questions. 🙂

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      4. I added the last paragraph as a response to his comment! LOL!!! Sometimes I write without thinking about who’s reading, since I’m so used to no one reading my blog.

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  3. I cried reading this letter. Although you are writing from your own personal experiences, it felt like you were also writing my story. Thank you for this!

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  6. Thank you.
    Thank you.
    Thank you.
    For putting into words everything.
    I’ll add my personal spin on this:
    My son was diagnosed with ALL Leukemia one week after we found out we were expecting baby #2.
    He’s now 3 years off treatments, but that ugly, nagging fear of relapse NEVER goes away.
    He’s healthy now, and I thank the Universe every day for that.
    I feel for you, I understand you, and I will continue to send healing, positive energy your family’s way.
    Thank you.

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  7. As many others have said you wrote our truth, our fears, our happiness in the smallest to the biggest of things, our light, our darkness and most importantly our normal. I’m a fellow cancer Momma who truly thanks you for your honesty, your light and for putting this out there in the universe for me to come across and have the pleasure of reading!!!!

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  9. My life story. I thought my actions were unique. Only 16 months cancer free, but the journey is just beginning. Speech, occupational and physical therapy for loss of immobility due to brain necrosis from radiation, loss of speech from having to be trached, but coming along good enough for us. She’s here. And this is our new normal…

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  10. Wow…everything I have had bottled up inside, you expressed. My daughter was diagnosed with ALL on September 5, 2002 at the age of four. Just two days prior, we were in Disney World and cancer was a zodiac sign. She will turn 18 this May, it has been 11 years since treatment ended and our “new normal” began. Just because they are cancer free doesn’t mean it’s over…every cough, bruise, yearly blood draw to check for cancer, EKG to check for late effect heart damage. Thank you for being our voice!

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  11. This is such a powerful piece. I’m an editor at the Huffington Post. Would you be interested in re-posting this on our site? I think it could really resonate with readers. Feel free to reach out: hayley[dot]miller[at]huffingtonpost[dot]com.

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  14. I am a grandmother and spent about 100 days inpatient with my grandson. He was 5 when he left this life for the next. Two weeks before he turned 4 he was diagnosed with ETANTR: A very rare, aggressive malignant brain stem tumor. My son, my husband, his stepmother, both great grandmothers cared for him. My son fought 15 months for treatment. The pain you describe, stupid friend comments, and “where is your faith?” Just about made me homicidal. I get it. Until you live this life, one does not truly understand nor know what to say. So, just shut your mouth and hold my hand. Because the death of your dog or grandmother…..not the same thing!!

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  15. Thank you! I’m a mother who has battled this for 19 years! I’ve also been saying I want to write a book but just don’t know where to start!

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  16. Thank you for writing this. It depicts everything we continue to go through. Our lives are changed forever. Awareness is so important and having someone who is able to express our emotions so intricately is very helpful. Reflection and healing is so important today.

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  18. I feel this is me also I will never be the same ever but it does get better and trusting no one is wrong only you know how to handle your child is wrong. I know, you were me only my hubby and I knew whats best but we were so wrong..Our child never was alone in the hospital ever. I trusted no one but my twin sister and Mom. I changed… I now am the Secretary for O.C.F.O.C.F. (Orange County Foundation for Oncology… It’s a family camp that last 3 days and the parents sleepover too. We have at least 2 -3 ONC nurses on staff and 3 regular nurses. The kids are with their cabin groups and they are safe most of our counselors are professionals and some are cancer survivors also. I am still protective of all my kids and our patient is 24 and has a ton of issues. He went to his first camp at 3 1/2 my other kids needed this group as much at he did. He stayed with me in the Mom’s cabin due to his young age but when he turned 5 he went right into a cabin for 5 – 7 year old boys. I have done my share of spying on my kids and have always been happy with what I saw. My family started to laugh again at this camp and I started to trust others with my child and that is huge. We talked to other parents that understood and thats huge too. We most enjoyed the campfire songs and the skits our kids would do! We laughed and cried at this camp and my whole family now give back to OCF-OCF! Our camp is made up by parents that saw a need, no one is paid, everyone is a volunteer.

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  19. Thank you so much for writing this. I must admit that many of the things you have written about apply to me, even though my son is a young adult. The only difference is that now that he is in remission, I have to make sure to allow my son to grow into an adult, and that means giving him independence in managing his own health. This is difficult for me bc up until pretty recently, his complete care was in my hands. Letting go is scary bc honestly, there is risk involved. Regardless, I have given him his wings, as he so deserves, and I try to impart my opinion here and there. When major issues come up, however, I am much more assertive, even at the risk of increasing of his feelings of me being overprotective. But I do it bc it is utterly necessary. Even still, this has become one of the most difficult predicaments of my life, especially when my young adult child is sometimes in denial about possible future medical issues. I don’t blame him though. If I wasn’t his mom, I would love to be in denial myself. Denial is a very comfortable place. But as you know, cancer moms never have the privilege of being in denial.

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    1. I’m trying to learn to give independence too… I think it’s hard for normal parents to do, but omg, sooooo har when you are worried about your kiddos health.

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  20. ♥♥ wow. I am only 2 months into this journey, and yet i already relate to every single thing i just read. i obviously don’t know the outcome of my son’s stage 4 rhabdomyosarcoma, but i already know that if we beat this, it will stay with us forever in the aftermath it leaves (physical, emotional and mental, the list goes on). This world is incomprehensible till you are part of it. thank you for sharing.

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  21. Thanks for the words. My daughter died. Amplify everything you wrote by an infinite number. And how to communicate that to your friends and family? And still appear approachable? I liked one of the replies: Just hold my hand. Exactly. Be human with each other. So hard.
    Thank you!
    Stefanie with Lovis in my heart

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  22. Hi there. This post is so fantastic – honest and beautiful, but also some major truth that so many of us need to hear. I have only seen things like you’ve gone through from the outside (as a friend of families with cancer), so I am grateful to be able to learn from your story. Thank you.

    My name is Mary Carver, and I work for ForEveryMom.com, a parenting website. I would so love to share your story with our readers. I’d like to republish it on our site, with your permission, and we would give you full credit as author, link back to this original post, and include your bio and head shot. What do you think? You can reach me at mcarver@outreach.com. Thank you for considering this request!

    P.S. I love your disclaimer. It is the bomb. 🙂

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