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

55 COMMENTS

  1. Well said, I get it. We lost our daughter to childhood cancer. No one gets it and as humans do they want to blame Someone or something. We are treated like that we have some sort of virus and avoided like the pluage. It’s like we are broken so you can not be around that family. Sending hugs and prayers. Good on you for what you are doing.

  2. So many things are right about your 8 points.
    My son has been treated for Acute Lymphoblastic Leukaemia (ALL) IN 2007.
    We treasure and appreciate each and every day. Yes, thanks to charities, we had experiences that we never would have had if Nick hadn’t had cancer but the given the choice, I’d have forgone everything to have stopped my sons suffering!

  3. Truer words have never been spoken….my daughter passed away in April of 98….she was two months shy of turning 9 years old. From the time she was diagnosed to the time she passed away was exactly 18 months….it all happened so fast that I couldn’t even wrap my head around it…..with the beauty of social media and blogs, etc. We have these days its perfect to get this type of message out there..I’ll definitely be sharing your post so add to hopefully help others who just don’t know what too do/say in this situation….good job girlfriend…good job indeed!!!

  4. I think the post is fantastic. I’d like to add my perspective from the other side in an effort to provide some mutual understanding. I want to make it absolutely clear that my post is in no way intended to minimize what you have gone/are going through. It is not meant to chastise or judge.

    1. You do not know what I am feeling.
    No. And God willing I never will. But every good parent lives, sacrifices and would literally die for their child(ren). In this we have a common bond. So when someone says they know how you feel – though I personally am exceedingly careful to avoid those words at all costs – what they likely mean is that they can identify with your fierce desire to protect the most precious thing in your life and your frustration/despair when you can’t do it.

    2. Please do not attack me.
    Nothing to say here except that there is a special place in hell for anyone who would do that to someone going through possibly the most painful experience they will ever face.

    3. Yes, I have heard your miracle cure.
    In many cases this may come from genuine desire to help. Most people would trade their very soul to the devil to make this fight go away for their child, which makes the suggestion to try the magic berries not so out of line. I scoff at that stuff, but the people who advocate for alternative remedies really believe in it.

    4. Never ask “What is the prognosis?”
    To answer your question, no, I wouldn’t feel worse for you if the prognosis is bad. My heart already hurts to the core for you. But I’d like to feel better for you. A positive prognosis, no matter how small, is comforting to people who care about you. Friends think about you more than you may be aware. They also don’t always know what to say. This is not a comfortable subject.

    6. Please do not feel sorry for me.
    Too late. It is human nature for most of us to feel sorrow/pity for someone who is less fortunate, in whatever way that misfortune may come. It is what separates us from the animals. This doesn’t mean I can’t rejoice that you have happiness, laughter and joy even during this ordeal. But the bottom line is that I wish you weren’t going through it in the first place.

    7. We are not privileged.
    I hope “lucky” is just an unfortunate choice of words. I hope the meaning behind anyone who says it is simply that it’s really nice that you get a chance to enjoy something as a family that will, for a short time at least, put that illness on the back burner and create wonderful memories. Especially in the event that the unthinkable does happen. I could not imagine anyone being truly jealous of such a gift given the reason it was presented in the first place. I don’t think I’ve ever used the word in that context, but thank you because I will be certain never to do so.

    I don’t intend this to upset anyone, quite the contrary. On our side, it’s easy to run into someone you know who is waging this battle, ask some questions, offer help and prayers and then return home thankful it isn’t us. For you the questions or actions of others may seem endless, intrusive and even offensive at times; however, with the exception of a few true asshats out there, I believe most people just don’t know what to say or do but are sympathetic to your pain. The alternative is to avoid the subject altogether, which I think we can agree is not acceptable. My prayers to all of you who have posted here and have fought or are fighting this battle. Thanks for your insight.

  5. Most parents of childhood cancer warriors are reactive in their approach to handling the challenge before them, but there are some who are proactive in their approach to handling the challenge. I am the grandmother of our eight-year-old warrior fighting Pilocytic Astrocytomas (brain tumor). Immediate and extended families are, as you are, victims of the transition and changes occurring in medicine today. We understand this is happening to you. I thank Connie Smith in a comment above for sharing a wider perspective on this matter based on her experience of trusting in those God had put before her. How is God to answer if messengers are shut out? Did you ever stop and think that you may be shutting out miracles meant for your daughter?
    Some of us can testify and have seen under a microscope how sick blood cells function again and visually move in a normal way as a result of use of probiotics and enzymes and “those” changes in diet (i.e. gluten and sugar). Certain doctors can show you this under their microscopes too. Those closest to you in the family are not judging and criticizing you, but would have you look where you haven’t looked already because you may not fully understand what is truly there. Cancer cannot thrive in healthy oxygenated blood of which such treatments exist. Do you realize that much of what others would have you know (whether they realize it themselves or not) are methods of treatment that clean and enrich the blood creating a strong immune system. Traditional doctors do not have these kinds of training and treatments to heal the body. They do not offer what they do not have. Traditional doctors do however, now admit when empowered, it’s the system that can kill cancer in weeks and even days. (Ken Burns: Cancer the Emperor of All Maladies—part 3). The world today needs warrior parents who ask traditional doctors between treatments, “What is the prevention to help stop it from coming back”? How many times do we ask these little children to go back and go back? Be a warrior who is proactive. It is these warriors who will change things and the things you do are what siblings of these children need to see and know were tried.
    I truly appreciate your perspective and help in understanding my daughter’s perspective, but honor your daughter in this way…. Go where ever you need to go and spend whatever you need to spend, so in the end, you know you did. This is what we want for you, not to hurt you or to judge you. These words are meant to encourage you and give you hope.

  6. I could have written this myself. Especially a few. I was once asked, no, not ‘ what is his prognosis’, but worse. ‘Is he gonna die?’ He was perhaps a year old at the time. Snake oil cures? Yes, and I ‘wasn’t doing everything I could’ if I did not give their remedies to a child with stage four cancer under a year old!
    No, you do NOT know how it feels, and no, none of us would wish it upon you, but you do NOT know.
    ‘ I cannot imagine how you feel’ is more compassionate, and lets us know you care.
    I could go point by point like the woman who dared to who does NOT understand, but I will just say thank you for laying it out for anyone who actually wants to know what might help, and what definitely will not.
    Thankfully, after watching my nephew pass away from a ‘standard risk’ ‘good kind’ of cancer, my son is now in college; after surviving a high risk ‘bad one’. Twenty rounds of chemotherapy,m30 hospital admits, etc. Etc. Etc, before he was 18 month old!
    Cancer sucks.
    The fear never goes away. The internal panic every time he gets sick never dissipates.
    In spite of long term health issues, he is here. That is enough to.give us joy.

  7. I am all the way in south africa yet your words transcend the barriers of geography! My son is fighting ph positive all…Thank you for making me know that I am not a crazy horrible lady for having these feelings and thoughts!

  8. Thank you for this article, unless a person has experienced the pain of a child with cancer they have no idea what it is like, my daughter was diagnosed with spindle cell sarcoma at the age of 15 and she fought with a smile on her face. Brittany went home to be with the Lord on 12-23-14, she is and will forever be my strength. I do not say that she lost her battle because in my eyes she won her battle, even tho it is not on earth with me she will be waiting for me in heaven.

  9. Nailed it! Unasked for advice was my biggest pet peeve. Thinking of all the warrior mamas out there – we didn’t ask for it, but, by God, we see it through. Hugs to all.

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