8 Things You Should Know About Parents of Childhood Cancer Warriors

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

, , , , , , , , , , , ,

52 Responses to 8 Things You Should Know About Parents of Childhood Cancer Warriors

  1. Beki Etheridge September 30, 2015 at 10:11 am #

    Traci, what an incredible and very touching story! Well said my dear friend!
    You and Torrence are an amazing team!
    You are both Angels and yet warriors!

  2. Lisa aka TEAM SPENCER September 30, 2015 at 10:42 am #

    As a mother of a child who has been battling synovial sarcoma for the past five years….. Well said!!!
    All of what you said was such truth!
    I can’t tell you how many others think they have the “cure”! If only it were so simple!!
    Some even say I should let my now 13 year old to partake in canabis! Really?
    The people who strike me the most are the ones who think I’m a terrible mother for allowing doctors to hook my child up intravenously to chemotherapy drugs or poison!
    Because I have so many choices!
    Some say I shouldn’t allow my child sugar because this just allows for tumors to grow! Hmmm… Well it appears to me that my child is in the best care possible in the United States!! Maybe those people who have all the answers can tell me why the United States government can’t allow for more funding to help save these children!? God, help us!
    I love my child to the moon and back and would go there if the “cure” was to be found!!
    Sincerely,
    Super MOM

    • Judy January 17, 2016 at 12:39 am #

      Lisa, hi my son as well is battling a synovial sarcoma.. He was diagnosed at 4 and we are currently having a reoccurrence now at age 11… I don’t see many posts from families of children with synovial sarcomas… I wish the best for your son!

  3. Lisl Barnes September 30, 2015 at 10:53 am #

    Beautiful and true! Definitely a must read…

  4. Traci McClead
    Traci McClead September 30, 2015 at 11:15 am #

    Lisa you are EXACTLY why I was writing this. I think it’s time there was insight into the world we were thrown into. As moms not only do we have to be advocates for our children in this fight but we also have to defend every decision we make, every treatment we choose, and every emotion we feel. I’m glad that I could write something that would touch another mom in a similar situation. Good luck to your little warrior!

    • Matt Kabel September 30, 2015 at 9:49 pm #

      Traci – don’t forget us cancer dads too! My daughter just finished two years of treatment for a rare infant leukemia, I was very blunt and honest about what she went through in posts, photos and articles I’ve written over that period. You captured perfectly what most of us probably feel, some things even I was hesitant to write. I hid most of the “web cures” that people would send from my wife, but I’d get one every week and was frustrating. Thanks for being a voice for us.

      • Mike Fitzgerald April 3, 2017 at 7:55 am #

        Hi Traci and Matt.. I am a cancer Dad. Our daughter Saoirse was Dx at 11 Months and Neuroblastoma killed her when she was 18 Months old. We were treated at BCH and Sloan. I love this post and its validating to read.. as a cancer parent, we feel like we are crazy because of our thoughts.. I heard everything above and more. When our daughter died, the comments got worse and the thoughts that we are crazy got worse. A lot worse.
        We heard
        “your young, you can have other children”,
        “Did you do everything you could?”,
        “I read that if you would have tried…(insert crazy internet cure).. that maybe your daughter would have made it”,
        “god wanted this to happen”,
        “she died for a reason”
        “my cat died a few years ago, I get it and know exactly what your going through”,
        “Did you feed her a lot of junk food and sugar?”,
        “you should not have let her eat hot dogs” (yes I heard that from a very inexperienced nutritionist after Saoirse died – the one assigned to Saoirse, the same one who recommend she eat from the hospital room menu)
        Anyway.. I could go on and on.. Some other cancer dad’s and I are writing a book called “the stupid S*&% people say when your kid dies of cancer: Stories of last days and beyond.

        Its been just over 5 years since I held her, listed to her talk and watched her play. The comments are still happening – the most popular comment i get now is
        “its been 5 years, haven’t you moved on?, You’ll feel much better if you do”

        Anyway, I could go on and on.. Thank you again for sharing

  5. Debbie McSweeney September 30, 2015 at 11:37 am #

    Thank you for expressing so eloquently what is in my heart. As a parent of a child fighting his fifth battle with leukemia over the last eleven years, I applaud you for your tackling this difficult subject matter. Thank you for raising awareness for children and families fighting cancer.

  6. Sue Kalika September 30, 2015 at 11:44 am #

    Thank you. Spoken from the heart. Been in the battle for 21 years. I’m incredibly grateful. Definitely not the same. I particularly was struck with the reminder of having to make the awful, no win decisions.
    When my daughter was diagnosed there was no Childhood Cancer Awareness Month. Hopefully this will lead to some funding breakthroughs.
    Thank you for your thoughts. Love and Hope.

  7. Shannon September 30, 2015 at 11:49 am #

    Thank you for writing this Traci. I’m sitting in the oncology clinic with my son who is having an adverse reaction to his 37th carboplatin treatment and I stumbled on your article while skimming Facebook at he sleeps. You are so right,especially number 7, 4, okay you really hit the nail with all of them! The only one I would add is that there is no “going back to normal” for us and our kids. AJ has 7 inoperable pilocytic astrocytomas. The most common pediatric brain tumor with some really uncommon components (so many, inoperable) and we know that once this first year of chemo is done there’s no telling what’s next. So, when my well-intended friends say “I bet you can’t wait for chemo to be done so life can go back to normal?” I stop and think about that. Weekly visits to the onc clinic ARE normal. Routine vital checks, quarterly MRIs, the chance to bounce off with the doctors and nurses what that little cough might mean or verbalize the inconsistency of his vision. And I tell my friends, no, this IS our normal. There’s no going back. And it’s just about being here today and focusing on today and preparing for absolutely whatever tomorrow brings.
    Thank you for such a perfectly captured piece.

    • Kristen March 30, 2017 at 6:22 pm #

      My son was 15 months when diagnosed with neuroblastoma and all I can say is everyday is our “new normal” because there is no normal anymore.

  8. Mary E. September 30, 2015 at 12:03 pm #

    This is so well written. As a Healthcare provider who takes care of these children I enjoyed reading what you wrote. My prayers are always for these children and their families…lives are completely changed because of these diseases and yes we need to support rather than judge and ask irrelevant questions. I will keep praying for you and the families that battle with this everyday.

  9. Lauren Grainger September 30, 2015 at 12:08 pm #

    Awesome article, Traci! Made me cry! I think of you guys often.

  10. June September 30, 2015 at 12:43 pm #

    My first daughter has synovial sarcoma. I hated it when people would ask if I should be allowing her to go to the park or take her shopping. Please remember they are still kids. They still need as much normal as we can give them. Ariel lost her 4 year battle when she was just 8 years old. She was and remains my hero.

  11. Kimberly Gosser September 30, 2015 at 1:35 pm #

    Thank you so very much for your writing and eloquently honest expression of so many mom’s shared thoughts and feelings. I am the grateful mom of a pediatric melanoma warrior, and every word here rings true! Much love and strength to you, and many blessings to your beautiful warrior! xoxoxo

  12. Kristen C. September 30, 2015 at 1:42 pm #

    This is WELL WRITTEN article. I even posted it on my son’s Facebook page as he is battling against brain tumor cancer since he was 2 (he is 8 now). He is about to start chemo next week. Thank you for sharing this article. BTW I reside in Austin, TX too. HUGS

  13. Peggyann V September 30, 2015 at 2:21 pm #

    #3. Where to begin. I have just started unfriending and blocking someone the minute they start in with the miracle unicorn fart oils. My child has a brain tumor with a cyst. I’m going to trust her neurosurgeon and her oncologist, not what random person #12 has picked up at the local swap and greet. gah.

    /off soapbox

  14. Susan Baca September 30, 2015 at 2:30 pm #

    This is so beautifully written. I am the grandmother of a little 7 yr old boy, Luke, who has been in treatment for 2 yrs and we know will continue through next year. His parents amaze me daily. You are all my heroes.

  15. Monica Garcia September 30, 2015 at 2:33 pm #

    Oh may…. I think that everything you had to say was so true. I’m a proud mom a childhood cancer survivor. Those exact points needed to said. Many want to try & see & feel our pain but no one can. It was hard getting people to understand that. Thank you for sharing & I wish your daughter the best & send support & prays for you both.

    Much love, Monica & Dayanara (nueroblastoma survivor) Garcia

  16. Mary Beth L. September 30, 2015 at 2:44 pm #

    Thank you for this blog. I’ve never had a child with cancer, but my great nephew has brain cancer and this is very insightful.

  17. Tonya Schlesser September 30, 2015 at 4:18 pm #

    I could not have said it better myself. As a mother of a child that battles brain cancer, i thank you for this and pray people read it and get it.

  18. Michael (#teamandrewman) September 30, 2015 at 4:56 pm #

    #3 a thousand times. Our Andrew was diagnosed in September of 2006 and has been on constant treatment since then. We are constantly getting to hear about all of the things that would cure him instantly or about how there is a cure out there but they won’t release it because it isn’t profitable.

    Why do people say these things to us?

    Thank you for your article, its very well written and very much in line with our thoughts as well. I’ll definitely be sharing it!

  19. C. R. Wilson September 30, 2015 at 6:22 pm #

    As the dad of a first survivor, I am pleased to say that I had none of those concerns. Our friends, co-workers and bosses were extremely supportive throughout the ordeal. My regret is that I probably didn’t thank them enough for their support.

  20. Janice September 30, 2015 at 7:36 pm #

    As a mom and a radiation therapist, I wanted to say thank you for your beautifully written, insightful article.

  21. Nancy September 30, 2015 at 7:38 pm #

    so true! When my son Alexander was fighting neuroblastoma, I posted a picture of him eating a french fry, and someone said “be careful with all the junk food” Ummm…yeah, he has cancer – he can eat what he wants! Someone else asked us if we had thought about St. Jude. I wanted to say “well, that would be a bit of a commute from Boston”!
    Sigh……

    Nancy – mom to Angel Alexander the Great – forever 21 months old

  22. S. Kirk September 30, 2015 at 7:43 pm #

    Wow, honest and well written. You nailed it…. Especially 4, 7 and 8. Thank you for having the courage to share the truth, no matter how hard it is to share/hear. I have shared and I hope even a few people in our life read it and take it to heart. Thank you.

  23. Carolyn September 30, 2015 at 7:51 pm #

    Thank you so much for posting this. I feel like you read my mind. My son left this world far too soon from stage 4 rhabdomyosarcoma. I think you pretty much summed it up. The only suggestion I can add to this amazing story is when a child does lose their battle with cancer don’t speak of them in past tense with words like was, did, isn’t etc. My son is and does and will always!! Many prayers to your family and God Bless!

  24. Eileen September 30, 2015 at 7:54 pm #

    As the mother of a cancer survivor and a pediatric nurse, I was moved beyond words at the eloquence, truth and beauty of your words. Thank you so much for sharing your experience. I pray every day for breakthroughs in treatments that will help our families. Blessings on you and your daughter.

  25. Carolyn Majors Politte September 30, 2015 at 8:21 pm #

    My name is Carolyn. I did not write the words above from another Carolyn at 7:51PM. But her story is my story even the stage 4 rabdomyosarcoma. God bless you. YOU words are what parents of NON- warrior parents everywhere need to hear. Each day I pray for those children fighting the fight and the families who support and fight along side them. OH the advice we received the attacks we received. My surviving child was told his brother could have lived but we did not accept the healing offered. What a burden to give an eleven old child. PLEASE congress we need more dollars for Childhood Cancer research.

  26. Alice Sillis September 30, 2015 at 10:43 pm #

    Kudos on hitting the nail on the head….. I am Mom to 7 yr survivor childhood Lymphoma who was diagnosed at age 18, ( and Mom to her brother who is 2 yrs older.) Yes we are human and our bond with our kids is also changed… but some things do predictably happen… the usual kid stuff. that becomes teen issues and young adult learning… regardless, our survivors want to return to being young… and want to forget about cancer… My daughter is in grad school in a Psychology Masters program…I chuckled the other day when she told me ” Mom, you do tend to ruminate about things.” (It is even funnier since her Dad and I were Mental Health Nurses.) …I had reminded her that flu shots were coming up; to check her prescriptions and basic cold meds in stock… “Oh, I guess I should.” since she hadn’t refilled her inhaler. since last winter… So I laughed and told her, “you are not helping my rumination issues.”

  27. Jill October 1, 2015 at 11:00 am #

    As a mother of a pre-B ALL survivor, thank you & your comments are spot on!!! Keep up the fight, I wish you & your daughter well on your journey.

  28. Connie Smith October 1, 2015 at 6:39 pm #

    This is just simply beautiful and hits home for all of us who have had children with brain cancer (or grandchildren, like my beautiful Lexi). The only thing I don’t agree with is the cure section. Not that we tried every kooky cure we heard, but there are intelligent people out there who might know of something you have not heard of, no matter how hard you research. When our baby’s brain tumor hemorrhaged and she was in a “persistent” vegetative state –according to the doctors — if we had not gone to our doctor with something we heard, she might have never come out of her coma. They gave her a “cocktail” of medicine that brought her out of it. The end result was the same, unfortunately. She passed away on March 9, 2014, but we did have her back for three more years, thankfully. We never know who God is going to put in front of us.

  29. Lori Earl October 1, 2015 at 8:24 pm #

    Perfectly expressed. As a mother who lost her amazing 16-year-old to thyroid cancer four years after diagnosis, I relate to these comments. Balancing gratefulness, grief, love, hope–not an easy task.

  30. Ashleigh Suarez Roberts October 1, 2015 at 11:40 pm #

    I am a single mother of three and my youngest is an Ependymoma survivor. I thank you for sharing and agree with all you said. Having a child who is stricken with cancer is any parents worst nightmare! Most people have no idea how the disease spreads through and tries to devour all the good life offers. They dont realize all the beast devours. I agree and have said it many times before…..I wouldn’t want this for anyone especially no child. My daughter was 2 when diagnosed … @ 3 she had a reoccurring brain tumor and we did the high doses chemotherapies and radiation. She had been in remission since 2007. We are still fighting the aftermath battles. We Will always fight for a cure with all the parents. God bless allal these children and the families.

  31. Brenda Joyce October 2, 2015 at 3:56 am #

    This is the most informative article written. My prayers and blessings to anyone fighting this battle

  32. Michelle October 2, 2015 at 4:22 am #

    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.

  33. Hazel Ward October 2, 2015 at 7:14 pm #

    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!

  34. Carol October 3, 2015 at 2:02 pm #

    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!!!

  35. Brenda (Homrich) Brinks October 9, 2015 at 12:23 pm #

    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.

  36. Catherine October 13, 2015 at 2:01 pm #

    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.

  37. Laurelee January 16, 2016 at 9:52 pm #

    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.

  38. Elrize March 16, 2016 at 1:45 am #

    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!

  39. Tina R June 30, 2016 at 1:42 pm #

    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.

  40. Rebecca July 23, 2016 at 9:05 pm #

    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.

  41. KatieAnne July 24, 2016 at 1:25 am #

    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.

  42. Rick Foster July 24, 2016 at 2:57 am #

    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.

  43. Michelle Sanders Massey July 25, 2016 at 9:03 am #

    Very informative read and beautifully written….thank you for sharing!

  44. Dee July 25, 2016 at 12:41 pm #

    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.

  45. Ulyssa Weber September 23, 2016 at 10:42 am #

    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

  46. Lauren December 7, 2016 at 11:52 pm #

    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!

  47. Elise April 5, 2017 at 10:47 pm #

    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

  48. Annette Mamo July 1, 2017 at 6:58 am #

    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
    💙💙💙💙

Leave a Reply