austin-moms-blog-childhood-cancer8 Things You Should Know About Parents of Childhood Cancer Warriors

Every September is Childhood Cancer awareness month. Every September I go gold in order to bring awareness to a disease that is critically underfunded and not as rare as most would think. Every September I do this in honor of my daughter who has so bravely fought this monster for over ten years and for all the others who have fought, beat it, or left this world too soon.
For September I was given the opportunity to write a blog about Childhood Cancer Awareness for Austin Mom’s blog and all of the sudden I am at a loss of what to say. It has taken me most of the month of writing and re-writing to get this post together. I mean how do you address something that has touched you so deeply and opened your eyes to a world you never knew? What do you say in a blog post that can show how upside down your world has become from hearing the phrase “Your child has cancer”? I have to be honest and say that I don’t think anything I write can bring enough awareness. So I shall not even attempt. I have decided that my expertise on this subject would best be used by telling you a few things you should know about a parent of a child with cancer. Here are 8 things you need to know about a parent raising a child who is fighting cancer.

1. You do not know what I am feeling.
This isn’t a bad thing; I hope you NEVER know what I am feeling. I would never wish upon even my most hated enemy the cards we have been dealt. I sat in a hospital room and listened to a doctor I had met 5 minutes before tell me that my daughter had the second most dangerous tumor he had ever seen. Those words will never sink in. Never. Unless you have been told that your child is now going to be in a life threatening battle where you will be making life altering decisions then no, you do not know what is inside my head and how my heart feels. And that is ok.

2. Please do not attack me.
It is hard enough to accept this fate without you waging a war on what my child eats, drinks, wears, what I use to clean, or how much they exercise. I promise that they aren’t eating McDonald’s every day or shoveling sugar by the spoonful’s into their mouth. I am not pouring roundup in their sandbox and we don’t sit under tanning bed lamps for fun. I may allow a treat once in a while because, let’s face it, she has given up enough, and I pick my battles on the account that I have bigger decisions to make. That is my right, and you don’t get a say. Right now I need a friend and I need support not a critic. If you want to critique or judge how I raise my child with cancer then you may do so in silence or politely excuse yourself as my friend.

3. Yes, I have heard your miracle cure.
You name it I have heard it. From mystery berries to magic urine it all has been presented to me in one way or another. As a mom of course I have researched every treatment possible. You can’t hear the words “Brain tumor” and not turn to the internet, medical experts, or nonconventional options. So when you see a mom standing in line at the grocery store with her beautiful bald child say to yourself, “This is not the time to repeat an article I read on the web during my morning internet browsing session.”
Just look at the child, smile, and then tell the mom how precious her baby is and if you really want to help, ask if they have a somewhere you can follow progress and post support.

4. Never ask “What is the prognosis?”
I answer this the same way every time. “I don’t know.”
Do you know yours? Why is this so important? Would you feel worse for me to know that my child might die in nine months as opposed to possibly early adulthood? The fact is that childhood cancer shortens your life span. By how much, it will vary depending on type of cancer, treatment plans, genetics, and well just downright luck of the draw. Treatment options buy time and can send the cancer into remission but that does not mean the child has been cured. Many of these treatment options have side effects that will be lifelong and some can even cause secondary cancers years later. As a mom I now have to face this fact. I now have to wake up every morning knowing that I will most likely out live my baby. Please do not ask this question. Ever.

5. I am not as strong as you think.
Just because I keep my composure when most can’t does not mean I have this super human power. Many times I have cried alone in the dark or in my car. I hide my pain in front of my children because I subscribe to theory and practice that my daughter will draw her strength from somewhere and it should be from the person who loves her more than anyone. She has seen me cry, and we have cried together. Most of the time I can stay strong for her but then there are times she needs to see me sad, she needs to know how much I hurt for her. Just as I am strong for her she is equally if not more so for me. The strength you see in me is my love for her shining through. Because of her love I am able to get through every day and no bad news is too much for us to handle together. We are a team.

My daughter and I before her first radiation treatment
My daughter and I before her first radiation treatment

6. Please do not feel sorry for me.
Yes, I my daughter has cancer. Yes, she has suffered a lot because of her cancer. But my daughter is AMAZING and she is a fighter. We are beyond blessed to wake up to her sweet smile and kind disposition every single day. Our house is full of joy and laughter. We spend our time looking for ways to celebrate life in any way we can. We do not need your pity we only want you to join us in spreading happiness to everyone you meet. If anything you should feel anger towards the lack of funding for this disease and then help by bringing awareness to this monster.

7. We are not privileged.
In the ten years that my daughter has been fighting she has been fortunate enough to be on the receiving end of some amazing experiences and gifts. As a family we have been able to go to Disney World and Hollywood. She has been given expensive gifts, the latest toys, and more stuffed animals than one ever needs. We have been beyond blessed in so many ways but I would trade every trip, every gift just for her to have never been through this. In my mind she deserves way more. If you knew even half of what she has been through you would feel the same way.
I have had people tell me how lucky we are that we get to go on these trips and I think to myself, “I am not sure lucky is the right word.” If you were given the choice between a healthy child that can see and isn’t cognitively delayed or a trip to Disney world what would you pick? That’s not to say we aren’t extremely grateful, because we are beyond appreciative of the opportunities we have had, but seeing Mickey Mouse is a small consolation prize in comparison. So when you meet a family that has a child fighting this disease remember not to be jealous of where their Make A Wish was spent because I am sure they would happily send you to Hawaii as long as you take their kids cancer with you.

8. We are still human.
This is probably the most important thing for you to know about a parent of a child fighting cancer. I cannot say I am the same person. Over the years I would hear a lot of parents say “I’m still the same person as before. Just because my child has been diagnosed with cancer doesn’t mean I have changed.” Lies. You will forever be changed but it doesn’t mean your friends have to part ways. I cannot stress enough no matter how much we have changed we still want to laugh, we still need a shoulder, and we still want to be there in return. We just want our friends to accept us as we now are.

So as another September comes to an end and we begin to wrap up childhood cancer awareness month I hope this helps someone. With 1 in 258 children in the US being diagnosed before the age of 20 odds are you will eventually know someone that these rules can apply to. Go gold in September; go gold for the children and for the parents that raise them.

My Joy2

54 COMMENTS

  1. I’d like to share a comment from the other side. I am not the parent of a cancer survivor, but a childhood cancer survivor myself. Your beautifully written words made me think of my parents and what they went through having a child at the age of 5 diagnosed with cancer. They were my support system and I cannot express how grateful I am for them.

    After almost 10 years in remission, I was told last August that my cancer had returned. At the age of 23 the comments and questions are no longer directed at my parents, but at me. I can tell you that each one of these points applies to survivors as well. I am constantly asked about my treatments, if I’ve tried the latest miracle, or if I’m eating the correct diet. How my prognosis is, am I depressed. NO life will never return to normal. I almost reached my 10 year remission goal, just to have it ripped out from under me, pushed back into treatments and hospital visits. And NO, you do not know how I feel.
    Although my post may sound it, I am not bitter. I still have the greatest support system and my journey has led me to the life of nursing. I feel for all parents who have children diagnosed with this terrible disease… My dream is to be the nurse that puts a smile on your child’s face … If only for a moment.

  2. What a timely reminder of the journey that the parents travel when their child has cancer.
    For every parent you know, there are usually several grandparents who weep silently in the background lest they take away the compassion from others that rightly should be given to the parents.
    As a grandfather to a seven year old girl who has bravely fought leukaemia for five years, I have had my strength bolstered by remission and devastated by relapse.
    She knows and understands how we feel and through that understanding we are all encouraged to persist with the fight.

  3. Thank you…as a mother of a daughter who still fights every day from significant complications of a medulloblastoma and treatment 15 years ago…I applaud your writing and insightfullness. We are never they same…life is recategorized to pre-cancer, treatment, and post treatment. The fear is always present..sometimes buried deep…sometimes on the surface…but it never ever goes away. However..you are right…it is because of the love we have… that gives us strength….to warrior on ….to laugh, cry, ….to celebrate.

  4. Tracy as a mom of a son who is fighting stage 4 neuroblastoma I about jumped up and down when I read this…I say the same things all the time to others so it’s amazing for you to put down on paper. I don’t even know what you go through but I can relate to finally being in a good space and I hate hearing “what’s the prognosis”I’ve also had people ask me “is he going to make it” seriously !!!get the fuck away from me with your stupid questions is what I’m thinking…keep up the good work being a great mommy and I agree with you saying it’s ok to cry…I always cry in the weirdest places or while driving well used to all the time! But I feel so relieved to let it out and yes it’s hard to vent to others because THEY DO NOT Know! It’s hard for someone to give guidance when they have healthy children and their idea of a catastrophe is spending night in hospital for a child who has rsv…and please people if you are reading this never call a mom who has a cancer child to talk about your problems. You know why? We don’t have the capacity to really care…yes it’s true we have so much we go through daily that we could give two shits less of your shitty boyfriend etc…please please do not even call if that’s what your talking about. Keep up the fight, fuck cancer and never give up hope! Also remember you fight for your child and it’s your right to refuse stupid things or unlnecessary things even if ordered by dr. I’ve stood my ground and fought with many Drs to alleviate some of my sons anxiety…I would do it again in a heartbeat! C

  5. Traci I send you the very best wishes and hopes that your family is doing well and healthy! Around this time last year my 8 month old son had his eye removed due to retinoblastoma, cancer of the eye. We had the best—worse case scenario. Cancer was contained. No chemo. Awesome! It was like a tornado blew through my house but everything appears to be fine besides a scratch here & there. We’re so happy for the outcome but the event has scared us. Maybe not my son at the moment because he doesn’t know any different. But I’m different as a mother. I really don’t want any fears I have about his future being affected because he had one eye, to influence him. I don’t want to be over protective if he encounters bullies. I did when I was young and to an extent, it’s character building. I’d love advice about how to raise a disabled child that isn’t really disabled. Majority of people never notice he has one eye until they get to know us and I tell them. Is it good to inform others before they notice on their own? Because I see every second of all of it when I look at my son. I see every needle, every exam, every tear, and I see what he might have looked like if he’d never had cancer and had both of his original eyes. At home I am the best mom I think I can be. But in public, I’m not sure what’s appropriate and best for my son. Lots of love!

  6. Every single word you’ve written is SO on point as to how a parent feels with a child with cancer. My 3 year old son is in remission now and your blog describes exactly how i felt the whole time, thank you

  7. What an amazing article. You have voiced what so many parents feel and want to say! That is brave all by itself! Your sweet girl is so beautiful- and the kisses tell it all!!!
    Wishing you strength to get through the days, peace to make good decisions, and always much courage,
    Denis, Annette and Bailey Mamo
    With Bryce in our hearts
    💙💙💙💙

  8. You beautifully shared the most heartfelt, wisdom-filled, experienced truths. Children battling cancer and those who love them, like their mommies and daddies, grandparents and siblings hearts and minds are filled with grief, hope, pain, fear. I was diagnosed with breast cancer months ago, underwent double mastectomies and 30 rounds of treatments and honestly, if I could do it all over again to spare one child of this horrible disease, I would do it hands down. Adults have full control of making their choices in terms of treatment plans but children are the most innocent, vulnerable and weakest amongst us and they have no idea how awful it is until they undergo it. Their poor parents have to make those excruciating, painful decisions knowing what their babies will go through in the quest to be healed. I cannot imagine being in a harder place than that, moms and dads. I am so sorry that your child is suffering and I am so sorry that you are too. God, please bless the precious children and their loved ones with your peace that truly does surpasses all understanding. Please lead us in the directions to find cures and less invasive, barbaric treatments. Lord, please let Your glorious presence be known and felt in all of these children who are suffering. God bless you mommies, daddies, grandparents and siblings. My heart is with you. Truly.

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