Friday, March 15, 2013

We are Cancer Moms


Over the course of the years since my son, Ty, was diagnosed with cancer, I reluctantly became a cancer mom.  AKA: Momcologist.  It is not a group that I wanted anything to do with.  In the beginning, I denied myself from developing a relationship with another cancer mom because I simply couldn’t take on her fears in addition to mine.  And I didn’t want to believe that her child’s potentially poor prognosis might be the same as mine.  I didn’t want to know. 

My first day in clinic on the 9th floor at Memorial Sloan Kettering was spent people watching.  It was October 2010 and I stared at all the babies in strollers with puke buckets underneath.  Kids walking on crutches because they had a limb amputated, dragging with them IV poles that filled their bodies with poison.  And moms, dads and grandparents that wore supportive tee-shirts like “Team Cory,” “Prayers for Ashley” “Warrior Jake” and “Super Nate.”  I will never do that, I thought.  I will never embrace this.  I will fight this kicking and screaming every second of the way.

By December I was wearing a “SuperTy” tee-shirt and have worn them almost daily ever since.  Even after Ty died in October 2012.  I had no choice but to accept the truth.  That I will forever be a cancer mom.  It doesn’t matter that I didn’t want it… none of us did. 

We are all different.  Some of us shout from the rooftops about the unfairness of it all.  Some are angry.  Some are religious.  Others want nothing but privacy.  Regardless, we walk the same dark and painful path and share most of these things in common. 

·         We are smarter than our doctors when it comes to our own child.  Our instincts tell us if it’s neurological nausea or if it’s from the chemo.  If it’s a belly ache or c-diff.  If it’s an infection or a false positive (or a false negative for that matter).  We analyze ever sniffle and consider the nuances of every blink.  “Do his eyes seem shifty to you?  Was that a slight limp?”

·         We look at the daily and weekly bloodwork results and immediately scan down to see the ANC first, then the platelets, the red and white blood cells, then the electrolytes and so on.

·         Lysol and Purell are our best friends.  Our hands are dry and chapped because of it, but we don’t care because we can’t afford to get sick, and more importantly we can’t let our child get sick.   

·         We have all slept on a pull out hospital chair that is as comfortable as a concrete slab. We have all turned our backs to our sleeping child while in this “bed” so we can cry silent tears as we listen to the beep of the monitors telling us that oxygen saturation is low or there is “air in line.”

·         At the hospital we climb into bed with our children only to stay awake all night in fear of pulling on one of the various wires or tubes attached to him or her. 

·         We have donned rubber gloves and flushed a mediport.  We have administered meals through an NG or G-tube.  We have gotten excited to write down “1/2 of a potato chip” or “one bite of cheese” on the growing list of calories for the day. 

·          We have seen our child suffer in a way no parent should ever have to witness.

 
·         We kiss the scars.  We have an intimate knowledge of each and every one.  The shape, color, size and texture.  The exact location.  I call them my “magic kisses” and sometimes even I believe that they can make the boo-boos go away. 

·         We own bags with several different compartments that are filled with medication of all kinds.  It never leaves our sides.  We carry spare parts to g-tubes and needles for mediports in the same pocket as the baby wipes. 

·         We have buckets and tissues everywhere, and we have mastered the “reach behind” to help our child throw up while driving the car.

·         We have all been given a treatment “roadmap” only to discover that there are countless twists, turns and bumps in this road that they didn’t warn us about.

·         We don’t sleep well.  We are night owls, not because we want to be, but because we are haunted by our helplessness.  We go online and we research for hours on end, which is why…

o   We know the names of children all across the country, what type of cancer they are fighting and how they are doing. 

o   Like a doctor reading a patient file, when we see something posted about a child with cancer, we know how to scan the story to find the age, symptoms, diagnosis, treatment, and we skip to the end to see if the child died.  Not because we are morbid but because we are hopeful.  Because we are looking for another child like ours, and praying that his or her story ends in a happy life without any complications.  When that isn’t the case, we shake it off and remind ourselves that our child will still be the one.  That miracles happen every day. 

·         We suffer from scanxiety.  The weeks and days leading up to an MRI result in more anxiety than the most stressful life moments imaginable(i.e. your wedding day, your biggest final exam, your most exciting job interview – these don’t even hold  a candle to such pressure). 

·         Because of this, we carry a multitude of good luck charms, we become victim to superstition or practice rituals like eating the same thing for breakfast on an MRI day. 

·         We are guilty.  It was our job, as a mother, to prevent this.  To protect our children.  We look at pictures and wonder, “did he or she have cancer yet?”  We recall things that may have been indicative of cancer but we didn’t alert our doctor, like the time we thought the baby was just car sick.  Maybe if we caught it sooner it wouldn’t have gotten this bad.  Maybe we ate some soft cheeses while we were pregnant, or fed the baby non-organic fruit.  We constantly point the finger at ourselves with a wealth of reasons why we are responsible for this. 

·         We have blind, undying hope.  No matter what we read, no matter what our mind knows to be true, our hearts never give up on our children. 

·         We negotiate with God.  We debate when enough is enough.  Before cancer, tubes in the ears or a tonsillectomy would make us gasp.  After the cancer diagnosis, we are forced to consider far, far worse outcomes like the loss of a limb, hearing, eyesight, the ability to speak or eat.  Severe brain damage.  Death. 

·         We are humbled by how good and kind others can be.  We have made friends with complete strangers who fall in love with our children and just want to help. 

·         For those of us who have other children, we dread and avoid the pediatrician like you can’t imagine.  On one hand, they have to break an arm before we reluctantly take them, and on the other hand every time they lose an eyelash we assume they have cancer. 

·      Our other children do not get the attention from us that they so deserve, and that we SO WANT to give them.  It is inevitable that they will spend the rest of their lives, their new lives post-diagnosis, sitting on “the back burner.”  They don’t have cancer.  They are going to live.  Our other child might die.  It becomes that simple.  Homework doesn’t matter anymore, blood counts do.  We want to be there to help you ride a bike, but we might not be. 

·         We have a beautiful perspective on parenting because we have been forced to appreciate every single day with our children – even the worst days.  Banal conversations are insulting when you are scheduling your child’s radiation therapy or waiting for him to recover from surgery in the PICU.  We want to shout at parents with healthy children who complain about the stresses of pee-wee league or laundry, “Just enjoy your children.  There’s no such thing as too many hugs!”

 

For those, like me, who lost their child:

·         We will never heal.  We will never “get over it”. Even when we are smiling, know that we carry this pain every second of every minute of every day.   You may not see it, but we cry every day. 

·         We are failures.  We didn’t save our child despite all of the prayers, the advocacy and the infinite hope.  Now we will do everything we can to continue fighting childhood cancer to try and make up for our failure by honoring our children. 

·         We have a love/hate relationship with music, poetry, nature and all things beautiful because they remind us so much of what we lost. 

·         We look for signs everywhere.  We worry about our child being alone and we yearn for confirmation from them.  We hope the warm breeze was her hug telling us “I’m here” or that the light flickering was his silly way of saying “I love you.”

·         We beg and plead for them to come to us in our dreams.  Every night as I go to sleep I whisper “Forgive me. Come to me in my dreams because that is where we can still live together.”  I have yet to dream about my Ty. 

Yesterday Gavin saw a ladybug crawling on the floor in his toy room.  Now we were both visited by Ty this week!  I always leave the ladybugs alone and they seem to disappear just as fast as they appeared.  Like magic.  This has been a good week for all of us.  A very busy week, but a good week.  Thank you, everyone, for loving Ty and sharing his story.  So many exciting events planned for the Foundation in upcoming weeks/months.  Please make sure you check his Facebook.  I will be posting a monthly and weekly calendar of activities to keep everyone informed! 

I love you all so much, thank you for your support.  As Ty would say, I love you Big Much!

70 comments:

  1. Ty, you, and your family are just spectacular. I read your blog every day - especially at work and I swear it's made me a better parent, teacher, wife, and person in general. How right you are to savor every moment with our kids. Thank YOU! My love and prayers are with you.

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  2. Love you Cindy <3 You and Ty are my motivation everyday!

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  4. As hard as it was for me to read this post today, it is your REALITY, Cindy, and for that, I am so so sorry that you had to go through this and that Ty is not with you.....
    I pray that a cure/better treatment is on the horizon and it will be because of the efforts of all cancer moms like yourself. I hope to help in whatever way I can to raise awareness!

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  5. Wow! I am speechless. Cindy, you never cease to amaze me. You are a miracle! Your strength, your words. You have a gift. Ty absolutely had one, but you do too! I wish your family happiness everyday. I think of you often and have definitely learned to "not sweat the small stuff". In no way can I ever compare my life to yours, but at least I have taken away some little things that I use daily. For example, when the milk spilt all over the kitchen floor this morning. I laughed. A big belly laugh, why not? It's only milk. A simple clean up. Or when someone put the 4C iced tea container away in the refrigerator instead of on the counter. I try to enjoy each silly thing and remember that I need to live my life differently because at any moment it could change. I thank you for that. Before I started reading your posts, I was someone who wasn't like that. I worried about the laundry, bed making, dirty dishes. Thank you so much for helping me understand and appreciate the little things. It is because of your naked honestly and bluntness. Your family is part of my life now. thank you thank you thank you! May you see Ty in your dreams soon.

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  6. You are not a failure..you are my hero! You are Ty's hero. You are Gavin's hero.

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  7. Not a day goes by that I do not think of Ty and the Campbell family. Every word you said above is so correct. What people do not get is we could talk for hours at nauseating ends about our babies. Seems talking of them keeps them with us. Its a flicker of light in that big hole in the heart that we are left with after our baby goes back to God. I have come to realize there are some who almost and sometimes do roll their eyes when you start in about the pain of loss of a child. You made me realize, I am not the one with the problem, they have the problem. God bless you. I will help continue to fight the battle. Big hugs

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  8. I've been reading your blog for so long but never posted. I just have to type 'T' in my web browser and his blog comes up. I've made a choice never to 'not' read because 'it would hurt too much' - I force myself. It's the least I could do. It's necessary. The night before he passed I saw him as soon as I closed my eyes-a big smile-I truly believe he thanked everyone for supporting and listening and reading before he left. I know it sounds ridiculous but I believe it.

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  9. Cindy, you are incredible! Thank you once again for sharing your total life with us. We can better appreciate what you and others in your possition are feeling every day. I am so sorry anyone HAS to feel this way, it's so not fair! You are not a failure, you are a warrior who fought and may have fallin down but you got back up and are still kicking ass! Ty is so proud of all you do! God Bless you....Jean <3

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  10. I can't get over that picture of Ty. I applaud you and your family for being so strong. And I'm glad he no longer has days like that - only bliss. But my heart is always with you guys. All my love, Kate

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  11. Cindy, please visit www.phoenixtears.com, as smart as you are I know you will not be able to turn your back to the results that are happening everyday. Cancer patients are being cured with no poisons and no horrible medication side effects. Please, please, please take a few minutes and really read what is all about. You are open minded enough and a warrior. That is what is needed. So many young lives can be saved. Also check out Brave Mykala on Facebook. I love you and Ty so much I only wish I had learned of this treatment before his passing. Please I beg you don't believe the taboos and labels put in place by corrupt politicians and the money hungary pharmaceutical companies just use your beautiful mind and see the truth. Geraldine

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    1. http://phoenixtears.ca/ is the correct address. Thank you Cindy.

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  12. One who loves so much and so deeply is not a failure. God entrusted Ty to you and Lou...you took care of him as no others could. I am so sad that you and all the other parents have to be in this league. Just remember...none of you stands alone.

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  13. Big much love to you all...Always praying for you and Ty. I tell everyone I can about Ty and his fight. I've even been pulling up your recent blog about how people state they are too sad to hear about pediatric cancer and the little warriors battling it. And I tell them, this is why I want to talk about it. We should be talking about it and spreading awareness. New treatments are a must! As always, keeping the Campbells in my thoughts... <3

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  14. As I'm in tears reading this, I am still amazed at your strength. You Cindy Campbell are the definition of a beautiful human being! I can never thank you enough for being a better wife and mom, you made me see how blessed I truly am. Ty, Gavin and Lou are blessed to have you! ❤

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  15. Forgive me the correct address http://phoenixtears.ca/ thank you so much for taking the time to research this.

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  16. You and Lou are angels with hearts of gold. Every time I see a lady bug or a rainbow I will say a prayer for you and SuperTy.
    God Bless you both and Gavin for all you went through and are still going through.

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  17. An incredible blog post. Thank you so much for sharing. All my thoughts, prayers and good wishes for healing as much as a person can from something as devastating as this. Your son was a light. I hope he visits you in your dreams soon.

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  18. Cindy, All I keep thinking is...I just did not think Ty would die! I just knew he would beat it. He is part of my everyday. I check in on you everyday, you, my friend are amazing! I've learned so much from you. I appreciate the little things so much more than usual. I think you make me a better mother and grandma! Keep doing what you are doing! We love you!
    Love and Prayers, Terri

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  19. May His blessings be with all of you every day in every way

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  20. It has been awhile since I came here but think of you and your family every day! You help so many people by voicing what they are feeling but are helpless to express! Thank you for everything you do..Ty, I am very sure is so proud of you.

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  21. So sad but so very true. Thank you putting it all into words, Cindy!

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  22. We love you BIG MUCH too, Cindy.

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    1. Triple ditto! BIG MUCH!

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  23. Cried reading every word! Don't even know what to say. The way you explain things is incredible. Sending you hugs. Always thinking of Super Ty! He will be in my heart forever!
    -Jennifer

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  24. I have been reading your blog for awhile now, but have never commented afraid I would say the wrong thing. What you and your family went through is unimaginable. And the strength you have shown is commendable. I have my own Ty at home (Tyler, but we call him Ty) he's about to turn one. I think your blog has made me a better mom, I take nothing for granted. Each and every day is a gift, thank you for that. May your sweet boy continue to show you signs that he is with you.
    Much love,
    Lisa H

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  25. Through my sobs, I can only say, You are my hero. You, Ty, Lou & Gavin. HEREOS. The others I have read so much about. Their parents. They are all hereos.

    This is a post that I cry with you and try to even slighty try to comprehend the immense grief you have. And to tell you how sorry I am. How none of you should have seen this.

    That I will, in my own little voice will continue to spread the word of Ty and the others. My heart is broken.

    Hugs to you Cindy.

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  26. May God continue to bless all of you with "good" weeks and may they come often. Thank you for sharing your story and your amazing gift of writing!

    We continue to pray daily for all of you.

    The Stewart Family
    Nebraska

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  27. You and Ty and Lou and Gavin are an inspiration! There is not ONE day that I don't think of Ty. When I feel myself short of patience with my children, Ty immediately pops into my mind and it truly makes me take a step back. You're story has inspired so many, Ty has changed the lives of so many! I am a better person, a better mom and I have a stronger faith that there is something soooo much bigger out there than this! Ty was special, unique, a pure angel with a reason he graced us in this world! He's touched so many! You're pain will never end, but I can see you one day holding Ty in your arms again and feeling that completeness and happiness once again! You are amazing Cindy, your strength is beyond anything I've ever seen! Keep going forward, you are going to make a change!

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  28. Just heard "Windows are rolled down" by Amos Lee. Cindy, since you have an understandable love/hate relationship with music maybe you can check it out. I instantly thought of Ty when i heard it. Its a beautiful song. Almost as beautiful as he is.

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  29. Cindy,
    Your words are incredible. I can't tell you how many times I have tried to write about this on Sean's CarePages blog, to share with the amazing support system we have what it's like...the sleepless nights of research/reading, looking for new/better treatments, following the stories of other children and hoping for a happy ending, hiding the tears from your child who is so bravely fighting, looking at pre-diagnosis pictures and wondering should I have known, the pain of submitting your child to treatment they can't possibly understand, the scanxiety, good luck charms and rituals on MRI days, and just looking around the floor at MSK and all these brave kids fighting just like yours and wondering how the hell did I get here??

    I hope you don't mind if I share your words. You've said it better than I think I ever could.

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  30. You are such an amazing writer.. Your words humble me.. Just wanted to let you know that I'm still here, still think about Ty and your family all the time
    You should definitely publish this post
    Michelle
    XOXO

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  31. A powerful and heartwrenching post... Just listened to Beam Me Up and cried for you, Ty and your family. That song will forever remind me of you and Ty... Love you Campbell's!

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  32. Oh Cindy I just want to give you a huge hug and cry with you or just let you cry on my shoulder. You are not a failure; you did everything you could for Ty and he knows that. Now you are doing everything you can for other children with cancer and we will do what we can to help. Know you and your family are loved and prayed for.

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  33. You are not a failure. You have a gift and are an inspiration to us all. Thank you.

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  34. I really hope you are talking to someone about publishing a book. You are an amazing writer and just think of how much the proceeds could help kids cancer research.

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    1. I have been saying that for so long. These words - ALL of them - need to be published and shared.

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  35. You must write a book. We hold onto your every word. The proceeds would go to cancer research. Think about it...you have such a gift. God Bless You always.

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  36. Cindy-
    You are absolutely the definition of a successful parent. You inspire so many, and you continue to amaze me with your strength.
    Thinking of you--

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  37. Thinking of your family always. I missed hearing from you for a week. Love, Emily

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  38. Everytime I hear this song I think of your sweet Ty! I love it...it's called Ladybug by Spotted Rabbit

    http://www.youtube.com/watch?v=TjygKtkmiqk

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  39. That was beautiful. Painful and heartbreaking nd beautiful all at once.

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  40. Cindy, I just reread your post, crying my eyes out.I also donated to the cause. Again, I am so so sorry.

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  41. Even covered in all those awful wires and wretched tubes he is beautiful. He is an angel. He is love. He is hope. He is strength. He is my super hero. But most of all he is and will forever be your best good boy in the whole wide world. You two are unstoppable. xo

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  42. I don't think there is a cancer mom who could have said it better. You made me feel what you feel and you made me scared for my babies and you maybe me fall inline with those cancer babies even more than before. But you made it be real raw painful but not just like pretty cute smiling cancer kids. Imagining crying from pain babies or toddlers without limbs is scary and powerful and I don't get it why is not changing the world to realize what's important to us. Yes I'm guilty of worrying over stupid things but I promise you Cindy now that I worry the on,y thing that outs me back into normalcy is thinking of Ty. How dare I to worry over anything when Ty doesn't have the luxury to be here and to experience anything anymore. But the more I think about Ty the more I know that heaven exists because Ty couldn't be in any other place but heaven. Which makes me think even more how this life isn't real how the other life is more real and is forever. So with that I just want to scream out loud Ty is forever! Miss you amazing little boy. Love you,

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  43. I love you Cindy Campbell. I can only hope to be half the mom you are.

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  44. Wow. That pic made it all too real...breaks my heart that babies in our world in this day and age are suffering like that and parents like you have to watch them :( so very heart breaking....

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  45. Wow...this has to be one of your most powerful posts that I have read and I have been reading/following superty.org for over 1 year. As raw/honest as you write, I don't think anyone could even begin to imagine the ordeal that cancer moms/families endure. Thank you for bringing us a sense of reality of the disgusting disease out there. I,for one, was disappointed with the Kelly/Michael amazing mom contest. Always remember, you ARE the most amazing mom to Gavin and Ty and isn't that what really counts? Love you Cindy!

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  46. Hi Cindy! I have been following your blog for about 7+ months now, and not one day goes by without me thinking of Ty. So, just the other day I got my e-mail about your update so I decided to read it. Just as I stared to read it the lady behind me caught my attention, she had a LADYBUG on her finger and was showing it to her 2 kids, just like the one you posted a picture of a few days ago. I didn't know if I should smile or cry, Ty is EVERYWHERE! He is such an amazing little boy spreading his magic around the whole world.

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  47. Wow...such a powerful post...you are a remarkable woman, Cindy.

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  48. most bitersweet post ever. so beautifully wriiten and so full of love.
    praying for you all xx

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  49. Cindy, what can I say. That was perfect! Tears just rolled down my face from start to finish. I have never read a description of what it is like as precise as this before. It took me right back to so those moments... Those feelings... Those thoughts... Your words describe it so perfect. I don't know how you do it but please don't ever stop doing what your doing. So many people out there now understand so much more because of you and your words. Thank you xxx

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  50. Thoughts of Ty, every day in this house. Your journey has educated us so much about what these babies go through, not just battling cancer, but battling the effects of the treatments. You've done such an incredible job of educating SO many of us.. and because of that, things are going to change.

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  51. God bless the families who have a sick child and or have lost a child. Sending you all a big HUG from California. And may these little angels always be remembered and for the little soldiers keep fighting <3

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  52. Thank you for sharing that with us. So much you go through, I can't imagine. Thoughts of Ty here so much as well. We have a lot of muddy puddles in our backyard today from the rain and I pictured him jumping in them this morning.

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  53. So beautiful written yet so sad that you have to write it. Hate that you know it/have lived it. So Sorry. I think of Ty all the time <3

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  54. Oh Cindy, you said it perfectly... Thank you... Always thinking of you, always thinking of Ty... You are making him proud and keeping his name alive.
    Xoxo
    Keri Kearney

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  55. A ladybug came to visit me this weekend on my shirt in the woods of Arkansas. "Is that you Ty I asked? And I smiled and smiled.

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  56. Big much love forever!!!! <3

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  57. Dear Cindy-
    You are such an amazing and special person, your words and honesty spoken from your heart of hearts always strike me so deeply. I think of you, your family and darling Ty everyday. I wish no one should have to write about such horrid, and painful subjects....and hopefully one day because of you, we will have cures. Thinking of you, sending love, bless you.
    From Kiwi Mummy, NZ

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  58. I think about Ty everyday. He is my hero. The pain you are going through us uninaginable and you have all stayed so strong through it all. I pray for you all. I have even seen signs of Ty, at least I would like to think they were. Twice over the past two weeks I have worn a SuperTy shirt and each of those times a ladybug has appeared at amazing times. Thank You Ty.

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  59. Love you Big Much . . .Always. Had ladybugs in my dreams last night. thanks, Ty!

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  60. This post is so much more than informative. You have many of us walking with you, not understanding how tough of a road you are on. We are with you, regardless, and this list made me take a step back, say a few prayers, and pass your list along to some people that have told me "this is too sad, why are you listening". We listen because information leads to action, change, and awareness. Thank you, Cindy.

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  64. Thank you for finding the words I could not, thank you for saying what I could not say. Thank you for allowing me to acknowledge what I am going through. I am a cancer mom.

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