15 Truths of Having Your Child Diagnosed with Cancer 

I had guessed how bad it would be when I heard my 19 month old had cancer. I imagined a million different scenarios in my head: some of which would happen while others did not. The Internet has been circulating “10 things you didn’t know about this” or “The top 15 reasons you blah blah blah.”  So, here’s my version. But this one isn’t funny or cute. It won’t hit everyone that reads it with a familiar nod as if to say “OMG! Yes! I do that too!”  This list is somber and sobering. It will be understood entirely by only those who have been down this road. Regardless, I think you should all know. Because I never thought pediatric cancer could effect my family, my precious children. No one does. Until it does. So here goes:

1. At some point or another, you will assume your child is going to die. Whether it’s only that initial second you hear a doctor say “cancer” in relation to your child or throughout the tumultuous course of treatment, it will happen. Maybe once. Maybe a hundred times. This thought will break your heart in a way that will never truly be fixed. 

2. As confusing as all the words and phrases that the doctors and nurses are using on your first trip into clinic, you will learn it all.  I was so upset sitting in clinic that first visit. “I’m going to fail her. This all sounds like Japanese to me.”  Within weeks, not only did I understand it all, but I could shoot off numbers from her last CBC from the top of my head with the knowledge of what it all meant and why. It’s daunting in the beginning, but that part gets easier. 

3. Some things will get better as time progresses, but it never gets easier. For example: after Elena’s 3rd week of chemo, I knew when to expect when she would get sick and when her counts could be expected to drop. I assure you, it’s better to know when to have a puke bag ready. It’s not easier though, it never will be. Watching your child go through her…oh I don’t know, 45th port access- it’s better because she has gotten used to it. She’s not happy, mind you, but instead of having to hold her down with all of my strength, now it’s only a matter of holding her arms out of the way so she doesn’t touch the freshly cleaned and sterile skin on her chest. It’s better, but not easier knowing why she’s going through it. 

4. You will be amazed and feel overwhelming joy many times throughout this journey. I know it doesn’t sound possible but it’s the absolute truth. People will rally behind your family in a way you never imagined. It will bring you to some of the best tears of your life. Your child becomes an inspiration to others and then those people become inspiring to you. Special occasions become life changing events and will restore your faith in the kindness of people. 

5. People will associate hair growth and flushed cheeks with good health. This will piss you off. Elena’s hair started growing back just months after she lost it, slowly of course. It wasn’t until two days ago (9 months after it first fell out and 1 month away from being done with treatment) that it’s falling out again. The peach fuzz she has been sporting has been a signal of a miracle cure to those outside the cancer community. Hair = Health. So far from the truth. But you’ll smile and nod anyway, not wanting to be rude. 

6. Even the best case scenarios and progressions suck. We have been so lucky. Elena has been so lucky. Her tumor shrunk quickly, was removed early on and her first clear scan came back before 20 weeks of chemo. But that doesn’t make it ok. It doesn’t change the pain and suffering and emotional roller coaster you’re on. I have said 100 times, if we had to go through this, Elena’s way is the way to do it, as I am all too aware of children and families that are not as fortunate. But it doesn’t mean that I am “ok” with it. I fucking hate it. Period. 

7. You will be very surprised by who sticks by you. Some people will surprise you in the best way- you’ll find lifetime friends out of complete strangers. But there will be others that you assumed would be there for you and aren’t. I can’t tell you to not let this upset you. Because it upsets me and pisses me off on a daily basis. Focus on the people who are there for you. 

8. Don’t be afraid to ask for help. You will be, and you won’t do it. Even when everything else is falling apart, you won’t take your neighbor up on the offer to cook your family dinner. But you should. Someone will ask you “what can I do- anything!” You will have a laundry list of things that you should be getting done and won’t say a single one of them out loud. But you should. 

9. This is an emotional experience. Be prepared. From the lowest low to the highest high. You will find yourself hysterically crying, during a good time, when there is a break in chemo and her health is at its best in months. You’ll be angry and hurt, devastated and livid. You will be overwhelmed and joyous. This is literally the craziest emotional roller coaster you will ever take. 

10. You will feel like you’re failing your other child(ren). Even if you aren’t. You will do your absolute best to keep them involved but sheltered from the severity of cancer. You will go above and beyond for your healthy child and still feel guilty. Because the truth is that their life changes too. They get stuck inside all winter with your sick child because your husband is at work and it’s 15 degrees outside and you just can’t risk another rotavirus without the immune system to kick it. I don’t have advice for this one- it’s devastating but I think I’m doing a good job for Annalise. I suppose time will tell. 

11. The end of treatment is not the end. In the beginning I looked at our last chemo date as this magical number. This was the day our life can begin again. We’re still a month away from that and I realize now that is not the case. She needs her last scan and her port removed after. Ok- so after her port is out it’s over. Wrong. The scans continue indefinitely. You will always have to check her health. Simple growing pains of a normal child become a phone call and appointment with the oncologist. Everything centers around the possibility of cancer coming back. And…

12.  No one outside the cancer community will understand. They will be supportive, of course, but unaware of the reality of so much. And that’s ok- you can’t expect understanding from everyone…but sometimes you’ll wish they did. When the celebrations start over clear scans early on and hair growth and the end of treatment in sight- you’ll be happy for these things of course, but angry that everyone jumping for joy just doesn’t get it. Find people who do- they will be your lifelines through this. 

13. This will change you. Forever. You will not be the same person after diagnosis, halfway through treatment or when chemo is over. In some ways, it will be for the better and in others the changes in you really fucking suck. I can’t elaborate much on this one as everyone’s change is different and mine is still underway. 

14. Your relationships with people will be affected. From your best friend to your parents and spouse. Sometimes it solidifies a relationship, strengthening your connection. Other times it completely destroys it. 

15. You are strong and amazing even when you don’t think you are. This is so important. The most important on the list. When you feel like you’ll just die from the heartache and your eyes are swollen from all of the tears…you’re stronger than you think. People will idolize you for this but the truth is you don’t have a choice. “Of course you do!” I’ve heard- oh yeah? What’s that? Lock myself in a closet and wish it never happened while cancer wreaks havoc on my child’s body??? Right, didn’t think so. But choice or no choice, you are strong enough to get through it. 

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89 thoughts on “15 Truths of Having Your Child Diagnosed with Cancer 

  1. We are a couple days away from our 1 year “anniversary” of my baby girl’s diagnosis… She was 2 months away from being 3 years old when we brought her to the ER and were told she has ALL. Leukemia. I could NOT believe it. She never showed signs of being sick… I could have died for her on the spot. I was also 7 months pregnant with her baby brother. Your post describes exactly how I feel, to this day. My daughter just started her maintenance phase of chemotherapy a little over a month ago, her counts were fantastic, she was doing great. All of the sudden she is neutropenic and for pneumonia… A week ago and a half we came into the ER with 104+ fever…. 5 days later she is in complete respiratory failure. She is put on a ventilator and the next day she is on bypass. She has been on life support for a week now…. I have all the support and love and prayers in the world from everyone who knows anyone in my family. I have all this hope inside me, yet as you say, the thought and heartbreak that my baby might not survive this tears away at me almost every moment. And also, feeling guilty that I’m failing my son, who is 10 months old tomorrow. I spent my first night away from the hospital in order to give him a mommy day. I did my best to stay present with him all day while worrying about my girl. I know this is hard on him too. He doesn’t understand.
    Anyways, the changing and growing and everything you said, continues inside me…. Thank you for voicing my feelings and my thoughts and for giving me the opportunity to see that some people do understand and I am not alone.

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    • My daughter was diagnosed with ALL almost 2 years ago when she was 3 months away from being 3 years old and we had a 16 month old and I was also 5 months pregnant with our 3rd daughter when she was diagnosed. This also hit me like a ton of bricks as they are all so true. Sounds like we have a lot in common with our girls. We have a facebook page for our daughters journey it’s http://www.facebook.com/addiesarmy
      She will finish treatment in 4 months and we are now pregnant with our 4th little girl. Sometimes I think we are taking on a little too much but we count all of our children as such a blessing. We will be praying for your baby girl to pull through everything, these kids are so tough!

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  2. Perfectly written. It especially was bang on when you spoke of the same anguish a parent feels regardless of the prognosis. My son was diagnosed five years ago with a Wilma tumour at age 4 and we were told it was one of the best cancers to get (if favourable histology) if you had to get one. That did not ease the pain one bit. But sometimes it made you feel like you couldn’t feel as afraid as a parent whose child may not survive. And guilty that your child had a ‘good’ one. However the terror and fear and tears were just the same. Amazing list. Thanks for writing.

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  3. Thanks for writing this. Though my family’s cancer story is quite different (my mom is the one who has it), there’s a lot of wisdom here that applies to cancer stories everywhere. There’s some things people just don’t understand, and yet, it’s good to know that there are those who do understand what all of it is like.

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  4. I wish we had Internet when my family went through my son’s cancer! Thank you for sharing! I knew we were healing when I realized I had called the regular pediatrician first and not clinic! He’s 30 now and played high school football and served in the U.S. Army!

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  5. Thanks for writing this it is all so true . My 13mth old son went through 8years of treatment for A.L.L. sadly he gained his Angel wings when he was 9yrs old miss him so much 😢

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  6. One month from now will mark the eight years since my daughter was diagnosed. She is a survivor, turned 11 in May. I can totally relate to every one of these points. Even all these years later I still have people I was friends with before diagnosis who haven’t talked to me. I have new amazing friends I didn’t know until after diagnosis. Numbers 11 and 12 are the hardest for me. I know someone whose daughter was diagnosed with a serious medical condition that will need constant watch and/or treatment for the rest of her life. She kept telling me over and over, your daughter is cured, it’s over. Well, yes, my daughter doesn’t have cancer right now, but her chance of secondary cancer is high. Her chance of heart trouble is even higher. She will see an oncologist and cardiologist for the rest of her life. She will likely never have children of her own. Her teeth are totally messed up, weak, misaligned, discolored from the chemo. Her hair is thin and those sweet curls are forever gone. And ever fever or day were she just doesn’t feel good still brings back the fear that the cancer has returned. So please don’t tell me it’s over. But this person never understood any of that. Only my cancer parent friends get that.

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  7. I can only imagine all of your fear and pain. My son is my life, my very reason for living. I read your stories and cry for you. You are all so strong even if u don’t feel it at times. Cancer runs in my family and I am terrified of it. I pray for u all.

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  8. It is almost 27 years since diagnosis for my son, he is well thanks be to God, but numbers 10 through 15 hit home with me now. I still feel guilty about my two daughters who were pretty much left to look after themselves. The oldest who was a teenager had a to be “mum” to her youngest sister. It’s a terrible feeling when you have to stay at a hospital with a very sick child knowing you have other children who need you too. I also found I lost patience with people who basically moaned a lot. My tolerance for them depleted rapidly when you looked at sick children daily who were fighting for their lives but always managed a smile. I realized that money and stuff were unimportant. If I had 10 million in the bank it would have been useless in helping to save my son. The skill of the surgeon was what saved him. To all mothers fighting this cursed disease in their children, I will pray for you all daily and hope you have a great outcome. xxx

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  9. I cried reading this. My daughter was diagnosed with stage 4 Rhabdomyosarcoma just a few short months ago. July 23,2015 with 52 rounds of chemo and 32 rounds of radiation.. We’re not even half way through this madness!!! Week 15 because she just keeps getting sick.. I have felt almost every emotion you mentioned!!!
    I needed this!! I felt alone like all my feelings wasn’t right. Thank you

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  10. Hey there. My daughter was diagnosed just over a month ago with ALL on the week of her 5th birthday. Today is the last day of the first phase of treatment. We’re told the next phase is more intense, but even this one has taken a toll. She’s gained so much weight from the steroids,and just so drained all the time. I just want my happy little girl back. I know the outlook on ALL is good but it still is what it is. I don’t really know what I want to say on here, but as I’m laying with my daughter next to me sleeping, I just needed to read and share with people in the same situation. If I really vented, I could write a book on here lol. In just a month I’ve felt many of the things you’ve described. The outpouring of help is especially true. The generosity of some people is truly amazing. But anyways, just wanted to say I’m sorry for all who have to go through anything like this. I wish you all the best. Take care.

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  11. Hi. I just discovered your blog in my FB feed.
    I read the 15 things and much of your blog. I left a FB comment.
    You amazingly, powerfully capture so much. I had tears and laughed as I read your words. My son’s journey has been slightly different but what you say is spot on and so validating. I also went through other life-changing devastating crises just before and during my child’s diagnosis including incarceration of ex, loss of home, etc.
    I too see the pain and yet strength and miracles. My son is doing ok at the moment. The relief and yet guilt, you so accurately describe, is powerful.
    I wrote a book to help parents, and what you say is much the same as what I express in my book.
    The title is “Lifeline: A Parents Guide to Coping with a Child’s Serious or Life-Threatening Medical Issue” and you also used that word “Lifeline” in your post! Tears in my eyes and yet warmed my heart!
    I’m not sure where you are located, but I’m planning on speaking engagements during the year ahead. Would love to include your story.
    I’d love to send you the book for free if you want to take a look. Just get in touch
    Drmorett@valstar.net or text me 845-853-5283. Office is 518-537-2400 if you want to leave a voicemail.
    Thank you for your validating words and empowering energy and prayers for you, your child and family.

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  12. Thank you so much for making sense of this crazy time. My daughter is 35 and yet she is still my little girl. What you said touches any mother no matter how old their child is. I appreciate your insight.

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  13. It doesn’t matter how old your child is. You still go through all this. My son was diagnosed with extremely aggressive leukaemia at 28 and I lost him in 6 months. 💔

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  14. Hey mate, we have just learnt my 7 month old darling has cancer. He just grew his two bottom teeth. We are going through our first chemo. Thank you for writing this…. You’re amazing mumma!

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  15. Thank you for writing what we all (cancer parents) feel. My 12 year old son was diagnosed exactly a year ago with a rare very aggressive childhood cancer Rhabdomyosarcoma. Here we are 6 months after the end of Chemo with great scan results. Why am I still not happy? Why do I still cry? Your article said it all. I watched this treatment destroy my sons’s little body. He is recovering slowly one day a a time. Beautiful kids that he sat beside each week having treatment are now dying, fighting for their lives. Cancer sucks, it never goes away, once affected always affected :(, So the next person that says to me “he is okay now so you can move on” better duck because my son is not okay, it will never be the same, he is not the same! I am so protective of him as his body gets back to some form of normalcy! consistently scared of the future and what it holds So grateful that we have each other and can talk and vent about our concerns. Thank you for your honesty x

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    • I found that my emotions were harder after treatment. Because the fog that you live in during, that you need to have to get you through everyday of that nightmare, finally lifts. And it’s as if you can see all that your child went through clearly for the first time. Hang in there mama. You are most certainly not alone.

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  16. My 21 yr old was was diagnosed with burkitts lymphoma at the beginning of the summer. This past week we thought he had beat the odds when they told us it’s moved to the fluid around his brain. This article is everything I have felt in the past few months. Thank you for sharing. You took the words out of my mouth.

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