31 Comments

  1. Prudence MacLeod
    April 19, 2016 @ 10:36 am

    I cannot begin to imagine your struggle, but I can applaud your courage and that of your child. My thoughts and prayers are with you.

    As a Reiki Master I once did a lot of work with cancer patients. Many found solace and relief in the sessions. I recommend it for both of you and I am certain there will be a practitioner who would volunteer some time.

    Reply

    • Jessica Storm
      April 19, 2016 @ 10:52 pm

      Thank you for taking the time to comment. It does mean a lot! I will definitely look locally and see if we have any Reiki healers. I know personally I could use a cleanse and a refresh. 🙂

      Reply

  2. Rebecca
    April 19, 2016 @ 3:22 pm

    Thank you! God Bless!! You article does not link to SJCRH. It links to a St. Jude in India.

    Reply

    • Jennifer Oliver
      April 19, 2016 @ 3:55 pm

      Thank you, Rebecca, for letting us know about the link. I must have copied over the wrong one last night. But I fixed it! 🙂

      Reply

    • Jessica Storm
      April 19, 2016 @ 10:54 pm

      Thank you for bringing that up! Proper direction is vitally important if we want to improve awareness!

      Reply

  3. Alyssa Brown
    April 19, 2016 @ 8:05 pm

    *7,400 children die EACH MONTH

    250 die each day

    And sadly, a innocent, precious child under the age of 15 is diagnosed every 3 minutes.

    #NationalPriority
    #MoreThan4

    Reply

    • Alyssa Brown
      April 19, 2016 @ 8:07 pm

      Sorry I meant *7,500

      Reply

    • Jessica Storm
      April 19, 2016 @ 10:55 pm

      The stats are horrific and the ignorance of them is almost as bad. You would think that something of this stature would be more acknowledged. 🙁

      Reply

  4. Timaree
    April 19, 2016 @ 10:41 pm

    Thank you for this post. It’s beautiful and so, so true. As the mother of a boy who lost his life to cancer (JMML), I can tell you that even then there is guilt–guilt for somehow not having enough hope, guilt for envying the other parents whose kids are still in treatment, and more. But that guilt is the work of a parent, isn’t it?

    Wishing your family strength and resilience as you continue down this path, and, of course, praying that soon your girl’s cancer will be a hurdle overcome in an otherwise long, healthy life.

    Reply

    • Jessica Storm
      April 19, 2016 @ 11:07 pm

      I know when Cayla was first diagnosed, I looked and looked for a parent’s point of view that wasn’t all sunshine and rainbows. I wanted to know what we were up against and that others had made it through. I did not have much luck. Many are sad, grief-stricken eulogies or seeming refuse to show an unfiltered story of the bad and good. I want to do that here.

      I will never be able to offer you comfort with my words for your loss, unfortunately. But I do want to thank you for the continued support of our community. Cayla is in a good place now, if she would just stop getting common childhood illnesses like ear infections. I worry more about surviving her teenage years at this point. She is a very strong-willed child.

      Reply

  5. Chris Mitsdarffer
    April 19, 2016 @ 11:07 pm

    Thank you for this. My daughter Zayla passed away March 30, 2016. Almost three weeks ago. She was 14. And she had brain cancer…..a direct result of her treatment for leukemia when she was younger. So, her cancer treatment GAVE her another cancer. Nobody really take about that. And it pisses me off. I use to have guilt that my daughter was a survivor…..until she wasn’t.
    You can see my girl at teamzayla.org or on Facebook- Team Zayla.

    Reply

    • Jessica Storm
      April 19, 2016 @ 11:39 pm

      Thank you, Chris. I read through several of your blog posts and they sound very much how I feel as well. You lay out the facts and don’t apologize. And I very much appreciate it. I wish there was a way I could lessen your grief; my heart does truly ache for you and yours. Zayla was clearly a very bright soul from the pictures I saw.

      My biggest fear is the late effects. Cayla is young, female, and an ALL patient, all factors that increase her risk of late effects. I try not to stress myself out worrying about the future and the possible health issues she may have. I completely agree with your statement that Childhood Cancer is a lifetime. 🙁

      Reply

      • Stephanie
        April 23, 2016 @ 9:54 am

        I’m SO SORRY for what you are going through.

        Just as a positive story to give some hope, my sister-in-law was diagnosed and treated for Leukemia in 1990. She is healthy and thriving today with 4 children of her own.

        It’s heartbreaking that this isn’t the ending of every story, but it may help give some encouragement. At least that is my intention.

        Prayers and may God’s peace be with you.

        Reply

        • Jessica Storm
          April 25, 2016 @ 10:46 am

          That is wonderful to hear! One of my biggest fears is that while I have kept my child alive, I may have taken her chances of having her own children away. It is very uplifting to hear that there are survivors that do have their own. Thank you!

          Reply

  6. Caroline
    April 19, 2016 @ 11:27 pm

    Thank you so much for sharing

    Reply

  7. Amy Kennedy Fosseen
    April 19, 2016 @ 11:41 pm

    Already I feel the guilt again. In 1988 my son, Joe, was 2 months old when he was diagnosed with neuroblastoma–a word I had never heard before, yet I was told it was the second most common form of cancer in children. He’s 28 now, and there is always a part of me that feels guilty for the families I met whose child didn’t survive. Thank you Jessica for sharing–I wrote about my son’s cancer back then, but never shared with anyone. I wish I would have.

    Reply

    • Jessica Storm
      April 20, 2016 @ 9:01 am

      Amy, cheers to your son for taking on the enormous beast that Neuroblastoma is! It really is a very nasty cancer. Unfortunately, I know just as many neuroblastoma patients as leukemia. Many of them are fighting a relapse, and not the first relapse either. It’s one of the many reasons we need more research. One nightmare is enough, repeating it over and over again is hell. Share now! There are parent groups at your local hospital for the parents and it is always relieving to hear from a survivor’s parent! You could be the breath of air that one parent needs just to get through the day.

      Reply

  8. phillp//father of cancer kid that did not make
    April 19, 2016 @ 11:48 pm

    the worst thing about it all people always ask how you are doing.they never ask about your life or how things are going in your family . but what really takes the cake and icing too is friends you thought you had see you and dont speak. they look at foolishly sort of with a blank stare and slowy walk away without saying anything toyou

    Reply

    • Jessica Storm
      April 20, 2016 @ 9:07 am

      I have had friends look me in the eye and say they were praying for us but just didn’t know how to handle it so couldn’t be around. It hurts, you really do learn who is there for you. That’s what my other post bad news was about.

      I honestly am very sadden to see your child’s flag was lowered. No parent should have to bury their child, ever. Watch your child waste away in front of you, powerless to stop it. It’s the worse form of torture. And you expect your support system to be there. Please know you really are not alone. You are a member of a family that does understand and all of us are just a few seconds away on the Internet for you. ♡

      Reply

  9. Ashley simpson
    April 19, 2016 @ 11:55 pm

    My 8 year old son doesn’t have cancer. He does have a tumor, that we found when he was sick. It’s non cancerous, which I’m grateful for. My whole life I’ve wanted to go into children’s oncology. When my son got sick, my world caved in. I had to become, not the nurse and friend of a sick child, but the mother of one. The constant Dr’s visits and tears, that cone from needle sticks, and being made fun of at school because he can’t run around with the other kids. Because his tumor can’t be removed with surgery. It’s blocking most of his airway, so if he runs out of breath, it could very well kill him. The tears to just want to be normal. Then from me, the treats wondering what did I do to cause this type of agony for my child. Not being able to sleep at night, and peeking in on him? Just to make sure he was still alive and the tumor didn’t roll and suffocate him like the Dr’s said it could. The fact that the ONLY treatment for what he has, and yes I said treatment not cure, because there isn’t one, costs more then I make, and his insurance only covers 90 days of it, even when he needs at least 12 months of it. Knowing that I will most likely bury my child, according to every Dr we have seen. To know that most doctors don’t even know what it is he really has. They know him at the er. They misdiagnosed him with asthma, then a Dr felt the need to do a chest xray, just because, and found a pear sized tumor blocking 95% of my 45lb 6 year olds trachea. 48 more hours of leaving this tumor, and my son would have died. He saved his life. And I’ll forever be grateful for that. My son has histoplasmosis. A fungus caused by the spores in bird feces caused from. .. wait for it… playing in the mud after a rainstorm. My son, now 8 years old, is still at home, still wonders why, almost 3 years later why he is sick. Still begs me to run the mile with his friends at school, or play dodgeball, or even run at recess without having to sit down. But I have to tell him why he can’t do that. I have to tell my 8 year old son, why you can see every one of his ribs. I have to hold him after almost every meal he eats while he is throwing up, because the medicine ate the lining off his stomach, and there is no fixing that. I have to make him special protein drinks, that taste horrible, and give him more medicine then the average 90 year old, just to keep him going during the day. I know how you all feel. And your in my prayers. But while you’re finding childhood cancer, please be aware, that’s not the only disease that kills children.

    Reply

    • Jessica Storm
      April 25, 2016 @ 10:29 am

      Ashley, those are some of the very things I want to raise awareness about. My heart goes out to you. While the tumor isn’t cancerous, it still hasn’t had much research. There are numerous childhood diseases that affect our youth and very little acknowledgement. Maybe it’s too hard for most people to understand.

      Aside from the many cancer families I am close with, I also have several friends who’s children have cystic fibrosis. CF is another disease that causes many parents to bury their child. No one should experience that. The only way to get a cure is to make noise and show the unfiltered life.

      I wish you both light and love. As a single mother myself, I understand how your child is your entire universe.

      Reply

  10. Michael Russell
    April 19, 2016 @ 11:55 pm

    Wow! What a powerful and truthful post. My Andrew was diagnosed on 9/16/2006 with an Ependymoma and is still on treatment today. We had almost 6 months of thinking that it was behind us in 2007 before he re-occurred. He was 3 at diagnosis and doesn’t remember not being sick. My wife and I have been through most of the scenarios that you describe. I really appreciate the honesty here and hope that many people get to see this article and others like it so awareness can keep growing.

    You can look up Team Andrewman on Facebook to read about Andrew. Thanks.

    Reply

    • Jessica Storm
      April 25, 2016 @ 10:34 am

      It makes me angry that all he remembers is being sick and it has been a 10 years war for him. Continue to fight! And don’t be afraid to show the bad days! One of Cayla’s favorite songs is The Fighter by Gym Class Heros. Give it a listen one day. My dream is one day, no child or parent will feel like this.

      Reply

  11. Evangeline Pugh
    April 20, 2016 @ 7:04 am

    This is a message for the Brewer’s. We, meaning the whole of our little village, have watched and listened and prayed for our little Mikeala. It is utterly amazing how this little body endures all the treatment she has had, God bless her and her family. She is a beautiful courageous, sweet little soul. It makes your heart ache to try to understand how these parents and grandparents and sibblings get through it all and try to enjoy some of the nice things life has to offer.

    I am praying that one day soon you’ll see your miracle and continue to receive God’s blessing each day til that comes. We will continue praying for you all and listening for good news from you when you have it. May you receive some renewed spirit this day to trudge on with hope in your heart and may God send the miracle you’ve been looking for very soon.

    Reply

  12. Prayers & Happy Thoughts for Cheyenne
    April 20, 2016 @ 8:35 am

    Thank you for this. You have spoken to my heart in so many ways. As a parent of a child fighting T-Lymphoblastic Lymphoma, I feel completely helpless. I want to do anything for her and all the other kiddos who flags fought, are fighting, or will fight cancer. I want to hug all the parents so we know we’re not alone. I am on a quest to raise awareness. By taking some action, it helps ease the helpless pain, just a little bit. You can follow our story on Facebook at Prayers & Happy Thoughts for Cheyenne.

    Reply

    • Jessica Storm
      April 25, 2016 @ 10:41 am

      Cheyenne definitely embodies a warrior and her smile shows her confidence. Don’t be afraid to talk about her to anyone. I think the best thing I’ve done is be so matter of fact about Cayla’s cancer. People don’t expect it. But it isn’t something to be ashamed of, it’s her life. Let Cheyenne tell her story to random people, the stares and pity don’t help, knowledge does!

      Reply

  13. Courtney Slaydon
    April 22, 2016 @ 3:02 pm

    My son turned 6 almost a month ago. He was diagnosed with cancer this past summer. Anaplasic Wilms Tumor. He’s fighting for his life. It’s so hard. Prayers go out to all the parents in my situation. I feel the pain.

    Reply

    • Jessica Storm
      April 25, 2016 @ 10:43 am

      The beginning is always the hardest. If you need an ear, ever! email me. Jstormlala@gmail.com. And I will send you my phone number!

      Reply

  14. Jordan, remembering Mighty Monroe
    April 23, 2016 @ 7:50 pm

    I’m the sister of a childhood ALL survivor, and a cousin to a 22 month old who lost her battle with a rare form of leukemia a little over two months ago.

    My sister was 8 when she was diagnosed, she’s 21 now. I often forget that childhood trauma of three years of chemo when I get to enjoy her company now as an adult, and for that I feel guilty.

    I feel so guilty for not being able to do more for my cousin. 22 months is simply not long enough.

    I feel guilty I can’t console her mom, dad or brother. I feel guilty when I think of things like buying a windchime for her memorial garden, because what the hell comfort does that bring when you’ve had to bury a baby?

    My sister talks of survivors guilt, I feel guilty for not knowing that feeling. I wish I could take it away from her.

    Guilt is a strange emotion. You can be destroyed by it. How we change that is by standing up and doing something. 4% is not enough.

    Reply

    • Jessica Storm
      April 25, 2016 @ 10:52 am

      The biggest problem, and I believe your story underlines it, Childhood Cancer is not rare! And the effects can last a lifetime for the whole family. One parent once told me, grief is not for the one loss, grief is for yourself. So do what comforts you and your family. Use your angst and become a voice for awareness!

      Reply

  15. Pediatric Oncology Homeschool | Handful of Acorns
    April 30, 2016 @ 5:29 pm

    […] feel. Jessica, another cancer mom writes about her daughter’s cancer and reflects on guilt in this post. I feel that I am in the same place she is writing from. But today I’m am writing about the […]

    Reply

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