Cancer Mama

When I was young, I loved to dream of all the things I could be when I was older.  The possibilities seemed endless and my list was endless.

Of all the things I thought I would ‘be’ in my life, the idea of being a ‘cancer mama’ never crossed my mind.  Like so many other mamas and papas, my exposure to childhood cancer was limited to watching an annual childhood cancer telethon on television.

I would usually sit and watch those poor families with tears in my eyes wondering how they made it through their days.  I felt sorry for the children with their bald heads, the IV poles that they pulled down the hall, and their parents who bravely spoke about living life on the edge.  I would rejoice when a story had a happy ending and shed tears when the ending was not happy.

When the hour-long telethon was over, I would dry my eyes, say a silent prayer for the children, shut off the television and move on to the next daily task on my list.

It was not that I was unsympathetic to these families and what they were going through, it was just that they were . . . strangers to me. . . sad stories that made me appreciate my own life and health a bit more than I did the hour before. . .

. . . until one Friday in June.  A Friday the 13th nonetheless.  My husband, Will, and I were sitting in a local doctor’s office with our 9 month old daughter, Willamina.  We were there for a simple, routine check-up. Somehow, though, in the process of this rite- of-passage check up, the world had stopped.  My husband’s face was wet with silent tears and I was trying to understand what the doctor had just told us.

I was silently repeating the words, ‘massive, tumor, liver, biopsy. . .’ under my breath.  Call it mother’s intuition, but I knew immediately what it all meant.  Other words started bouncing around in my head.  ‘Cancer’, ‘chemo’, ‘surgery’, ‘hospital’. . . There were dark words too. . . words that no parent should ever have to think about.

On Friday, June 13th, 2008 at 10:30 AM, another cancer mama was born due to an aggressive, one in one million, rare, stage 4 childhood liver cancer called Hepatoblastoma.

Sometimes in life we get to choose what we are. . . what we become.  I am a wife by choice.  I am a mother by choice.  I am a speech pathologist by choice.  I am many things by choice.  Other times, life and circumstance grant us a label. . . such as cancer mama.

I have been a cancer mama for four years.  No one aspires to be the mother of a child with cancer.  It is a label that you are given that you would gladly return if life would allow, and once you become one among the cancer mama masses, your life is changed. . . as it is, I suppose, with any child with an illness, disability, or special need.

You now see life through a different lens. . . a new light. Perhaps it is a bit cliche to say, but true nonetheless, you do spend more time loving and laughing.  You also spend more time in moments of fear and frustration and worry.  Highs and lows are amplified.  Some days are spent kicking and screaming with an aching heart.  Other days you move through with a calm acceptance of what you have become. . .a mother to a child with cancer.

Willamina has been cancer-free for two years.  I am still tentative as I write those words.  Although her oncologist cannot technically declare her in ‘remission’ until she is five years out, I like to think of her as being a normal kiddo who has survived her bleak diagnosis against the odds.  There are days now when I can look at her and the word ‘cancer’ doesn’t cross my mind.

I am more than happy to kiss Willamina’s label of ‘cancer kiddo’ good-bye.  More than happy to allow that phrase to be transient and short-term. That said, I am still and will always be a cancer mama.  I cannot nor do I wish to erase the lessons that being a cancer mama has taught me.  The emotional scars, while fading, are reminders of my strength and perseverance and love.

Yes. . . I am many things in this life.  A wife.  A daughter. A sister. . . and a cancer mama.

Katie Clayton

About the Author: Katie Clayton

Katie is mama to three girls, married to Will, a speech pathologist and a cancer mama who knows the power of sharing her story. Katie blogged every day of her daughter Willamina's cancer on CaringBridge and had over half a million visits on the site during her most serious cancer battles. Willamina is now cancer-free and the Clayton's are enjoying their farm and menagerie of animals, but Katie's commitment to connecting with others about hepatoblastoma remains. She's now reaching out to families with children diagnosed with the rare cancer to offer support and advice.

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Comments

  1. Scotti Fortune January 18, 13:29
    What a beautifully written blog! Loved it. Your strength and the way you share your experiences with others is so inspiring. We always have Willamina (and all of you) in our prayers!
  2. Carol HIcks January 18, 13:30
    A very good start to your blog, Katie. It will help others in ways that only another "cancer Mom" can understand.
  3. Lindsay Ziebart January 18, 13:44
    I remember all of this and visiting her at the hospital. She has grown up so much, as well as Olive and Eloise! They are all so sweet, Katie! I can't ever read anything you blog without tears coming to my eyes. They are happy tears, though. =) I also love reading your blogs. They absorb me when I read them. =)I love you all, neighbors!
  4. Dawn Lawson January 18, 14:16
    All it takes when I am feeling low is to look around and realize that I am so truly blessed because so many other people aren't as lucky. Whenever I have read your blogs, this is the way I have felt. Just when I think I am having the worst day anyone every could, I realize that I have it pretty good compared to someone who has been called to be a cancer momma. Thankfully that is not a path I have been asked to walk; however, if I am every called upon to join the ranks of cancer moms everywhere, I will remember your words and will gain strength knowing that others have walked this well-worn path before me and I too will make it through. God bless you.
  5. Earline Clayton January 18, 14:38
    Katie you are such a wonderful mother to my three granddaughters, You and Wills love is one of the things that gave Willamina the strength to fight so hard to beat this cancer, plus the love of all her prayer groups and the love of God.
  6. Faith Campbell January 18, 16:34
    Katie, what a beautiful start to your blog. I have been a faithful follower, as you know, from the beginning of your CB site. So many tears have been shed, so many prayers have been said. And prayers have been answered! Your words have taught us ALL about perseverance, strength, and love....
  7. Linda Zeigler January 18, 17:35
    What a beautifully written blog, Katie! I still think you should write a book!
  8. Allison January 18, 17:45
    Hi there just wanted to pass on an email address of someone i'm facebook friends with whose 2yr old son just beat this exact kind of cancer. Her email address is seacahill@aol.com if you want to connect. Their facebook page is 'hope for jonathan'.
  9. Janet Inman January 18, 22:40
    Katie, What a perfect person to write a blog for this newsletter. You are always so sincere and honest with your feelings and life in general. You have taught thousands of people about strength, love, and perseverance through Willamina's CB page,and I'm sure you will help many others coping, not only with cancer, but, other childhood health problems as well. God Bless.
  10. EaJean Dusenberry January 18, 22:51
    Katie, what an inspiring blog. I am so proud of the godly parents that you and Will are. I know that is where your strength comes from. I love your little family and so happy you are all healthy. Keeping you all in my prayers.
  11. Nichole Willard January 19, 10:36
    Katie, You are so gifted! Just because you are a Cancer Momma, it has made you so much stronger! I think it is great that you are writing a blog. You are so talented in every way. You write so well, so well, it is like we are actually there! I think it is great that you are passing along what you and Will have gone through, I think it helps so many of other cancer patients. You are all so truly blessed. Blessings Always, Nicki
  12. Cheri January 19, 16:22
    I continue to be inspired by everything that you write. Your sensitivity has made me a better person. Thanks.
  13. Kari January 20, 15:12
    I am so very inspired by you and your family!
  14. Toni January 20, 23:41
    Thank you for sharing. Our daughter is a Hepatoblastoma survivor who was diagnosed at one year and is now 12 years old. We pray for all those who are on the same journey. God bless you and your precious family.
    • Katie Clayton
      Katie Clayton Author January 21, 08:42
      Thanks, Toni! I love to hear from other HB survivors who have been able to beat the disease. As I am sure you know, when you are in the midst of the struggle it is so hard to think that there might be life after cancer, but families like yours give so much hope!
  15. Margie Arlington January 22, 10:18
    Katie, Your families inspiring story reminds us to NEVER give up hope whatever the circumstances of life brings us and to always keep the faith! Margie
  16. Tonya and Teagan Griffin January 22, 16:08
    Being a cancer mama with a little HB boy. Katie, you have inspired me so much!!! You have been there for me and all my questions. I want to "THANK YOU" and so Happy to have a blog that goes through all the emotion that I have felt that I just couldn't express. Thank You!! Tonya and Teagan Griffin (CaringBridge Family)
    • Katie Clayton
      Katie Clayton Author January 24, 22:04
      Hi Tonya! We love you and are happy that all has been going well. We, cancer mamas, always need to stick together! I do not know where I would be without the support of all of my fellow cancer mamas! I mean it when I say, that mamas of kiddos with cancer are strong and fierce. One minute we will be soothing a sobbing child with such kindness and compassion and then in the next wag our finger relentlessly in the face of a first-year resident putting him in his place (which I was known to do on one or more occasions. LOL)! Some of the strongest women I know were born of their child's cancer diagnosis. It is not easy but somehow we all find the strength to 'buck up' and move ourselves and our families forward. Hugs to you! Katie
  17. Mary Jo limke January 24, 21:02
    Hi Katie, My son, Joey sent me your story. He will be 21 on Jan 30. Joey is a student at the University of Cincinnati and he hopes to get into the occupational therapy program. Joey, too had Hepatoblastoma diagnosed in 1992. His initial prognosis was poor with a 30-40 percent survival. During those days, the docs didn't have a lot of data to go on to give us a more definite outlook. Luckily, Joey responded well to the chemo and he had the tumor resected at the age of 6 mos. He had more chemo and his treatment was about one year. He sustained a high frequency hearing loss due to the chemo. We knew this was going to happen. The dos said that he may not be a concert violinist. Joey is doing so well now. In high school he was a swimmer and he also played water polo. When Joey was diagnosed the docs put us in touch by phone, not Internet, with other parents of children with the same cancer. This was really helpful as we got so much bad news for so long. The parents gave us hope, even if they didn't know. I live in Milford Ohio and I will pray for your daughter. I'm an intervention specialist and I teach at a catholic school. Hope to hear from you! Mary Jo Limke
    • Katie Clayton
      Katie Clayton Author January 24, 21:51
      Hi Mary Jo! So wonderful to hear from you! Joey's story is amazing. I am sure that HB was even more rare in the early 90's than it is now! I would be curious to know if Joey's chemo protocol was the same protocol that is used today. (Sounds like he must have had Cisplat with the resulting hearing loss.) Sadly, not much has changed in the way of treatment! We are not due back in Cincy until the spring. The next time we are over, we may have to look Joey up! It is wonderful to hear survivor stories and to know that there is life after HB! You give all families hope. I know that there are many other HB mamas and papas out there who will read your comments and have their spirits lifted. (Occup. therapy is a great field! We have many friends who are OTs!) Fellow cancer mama hugs to you and to Joey! Katie :)
      • Mary Jo Limke January 25, 22:17
        Joey actually works at Childrens. He recently got a job there as a Patient Escort. He would be more than happy to meet with you when you're at Childrens. He lives very close the hospital. The chemo Joey was given was Cisplatinum, Vincristine and 5 FU. I'll never forget those names. They are etched in my mind forever. How old is your daughter now? Does she have a hearing loss as well? I would also like to meet you if you're interested. It's always good to see the child you are praying for in person. Your daughter is going to fine. I understand that this was a very aggressive tumor and if it was going to come back it would have reoccurred relatively soon after treatment. I had many parents that gave me hope and I hope I can give you hope, too. It's been about 4 years, so it looks very good! We had a little party when Joey made it to 5 years. We always find a reason to party! You can always contact me by email if your interested in meeting. Thinking good thoughts and praying for your Willamina. I love that name! My aunt's name was Berdina. Mary Jo
        • Katie Clayton
          Katie Clayton Author January 26, 10:52
          I have your e-mail address, so I will shoot you an e-mail in response!
  18. Heather March 14, 18:05
    Katie From one hepato mom to another - great job! You continue to inspire me and many others. As "rare" as this cancer is, I am glad I found you. You have been a great resource. Next year will be 5 years for both Riley and Willamina.....what a wonderful feeling~! Hugs to all of you! Heather
    • Katie Clayton
      Katie Clayton Author March 14, 18:20
      Hi Heather! I will never be able to express how thankful I am for the new friends that have come into our lives because of cancer. As you well know, cancer parents are resilient and tenacious! We always need to stick together! So blessed to call you our friends.
  19. Lorraine Wilson July 13, 09:41
    Your story is beautifully written and so ?my baby boy has been cancer free for a year,he came out my womb with stage two hepatoblastoma.we were told almost immediately that something was not right and after several investigations they told us ten hours later it was hepatoblastoma.i thought it was a joke or a bad dream,I did not even know a baby could be born with cancer but apparently so,we became well known very quickly,as he was the youngest in Britain to be diagnosed with liver cancer.i not only wAs going through the baby blues but to be told this news was horrendous.many people sympathise,but unless you live through this no one has any idea how horrendous you feel,I mean this in the nicest way.i too used to feel sympathetic to hearing about kids in such a position,we also knew a little girl who passed away with cancer and attended her funeral and can vividly remember saying to my husband after it"what would you do if they told you your child has cancer. ",a year later we found out what you would do!!.thankfully my son is all well and amazing ,his gall bladder and half his liver was removed but he never complained despite being a new born baby.i am so glad your daughter is doing well and may this continue.the upside of this vile disease is the amazing,generous and inspirational people I have met.my life has completely changed and will never be the same but I like to think I am a nicer person for it.xx
  20. Ann Baker August 04, 16:22
    My son was diagnosed at 10 with hepato stage 4 he has been fighting it for 10 months!! He's such a fighter but I loved what u wrote. Cancer mamas are fighter right along side our kiddos!!
  21. Ann Baker August 04, 16:22
    Oops 10 months old!
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