Ordinary Life

by Kristin M. Lesney

A Mother’s Tale About Childhood Cancer

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Pregnant with Kayla.

When I was pregnant with my first child, Kayla, I did what every other new mother does, I dreamt about her future. What she would look like, what kind of person she would be? I can tell you with absolute certainty that none of my dreams involved childhood cancer.

Kayla - Kindergarten

Kayla started kindergarten in 2008 when she was 4. She excelled at reading and she loved to go to school everyday. I started noticing in early November that she was more fatigued than usual, she had bags under her eyes, she complained of joint pain and would get a fever every night. We took her the the dr. to see what was wrong. They sent us to a bigger hospital where they “specialized in blood disorders.” I had no idea that they were already thinking leukemia, I just figured she has anemia like me.

Once she was diagnosed it felt like my brain was stuck in a tornado, I could not believe that my baby had leukemia. She had a PICC line put in (which I hated, because I was always nervous about it getting pulled out) and then a month after that she had her Port-O-Cath put in. The port-o-cath is a device that has a catheter that comes out and goes into one of the main arteries in the heart. It makes it a lot easier to draw blood and administer chemotherapy.

Shaving Kayla's head.

Her hair started falling out almost right away. Her beautiful, curly blonde hair. She would come up to me and show me how she could get huge clumps of hair out when she would run her fingers through it. On the outside I smiled and we laughed at how much she was able to get out, but on the inside I was dying. She was well aware that she was going to go bald and that if she wanted to, she could shave her head. She decided that she wanted to and the next day she smiled as her daddy shaved her head. It would now be apparent to the outside world that she was sick.
She took chemo pills every night, as well as weekly visits to her oncologist to recieve more chemotherapy. There were even time when they would send us home with chemo drawn up in syringes so that I could administer it myself. I even got to give her chemo on Christmas.
I turned into a major germaphobe, always carrying hand sanitizer (the liquid and the wipes). We lived in out own little bubble. I was far too afraid of any germs getting to her. And my fears were not unwarranted as she ended up staying in the hospital about 20 times just for illnesses. It became our home away from home.
We met a lot of other children fighting some sort of childhood cancer or illness, some have faired better than others. Not only do you worry about your own child but you become emotionally invested in the lives of the other children. I became extrememly emotionally guarded. I had to hold it together for everybody else, especially my daughter. Because you see, not only was my daughter fighting cancer but my husband was as well. But that is another story for another day.
One of the typed of chemotherapy was called Intrathecal Methotrexate or chemo in her spine. They usually would sedate the child so that they could not move during the procedure but I wanted to be with Kayla, thank God she had such an understanding doctor. He was willing to try it a new way, so I held her in a “monkey” hold. She would lay on my chest while I sat in a chair, and her would insert the giant needle into her spine. Spinal fluid would drip out the end, he collected it in tubes to be sent off for testing. Then he would screw on the giant tube of radioactive green solution and push it into her spine. The part she hated the most was having to lay down for 30 minutes afterwards so that the chemo could travel up and down her spine.
She had her last spinal tap in April 2011 and she opted to do it without sedation. She did not like the way it made her feel, so my brave girl got into the familiar position on my lap, laid her head on my chest and did what most grown adults would not be able to do.
She has monthly blood draws just to make sure that she is still cancer free. She is in 2nd grade and loves it!
Chilhood Cancer affects not only the lives of the children but the lives of the people who love them. 10 years ago a diagnosis of leaukemia was a deathh sentence. But they have made leaps and bounds in the last few years and the survival rate is higher than ever. There needs to be awareness and there needs to be funding to wipe out this disease that robs these little victims of their childhood.
Great ways to help is to donate toys, money or even your time. The Ronald McDonald House Charity is a wonderful organization that really made a world of difference for us. There were there when we needed them. And I will forever be grateful for them.

Kayla's 1st day of second grade.

This post was written by my best friend Sandra, we’ve been friends since we were kids. She’s a mother of two living in California. This is her life and you can easily see why Childhood Cancer Awareness Month takes a special place in my heart.

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Comments

  1. I am so glad to hear that she is cancer free now. how heartbreaking to discover your child is sick! She’s a beautiful girl, and tough, too!

  2. What a brave little girl! I’m a retired teacher and had several kids over the years that were battling different cancers. It’s heartbreaking to see, but those kids were so strong and made it through it!

  3. Your story speaks for so many out there with childhood cancer. Your daughter sounds like one brave little girl. I have had several in my family as adults go through cancer the past few years and cannot even imagine having family or a child of my own so young to deal with this pain, fear, weakness, and how it BECOMES your life, unfortunately for a long while. So happy to see her back in school and enjoying the sweet and stable life of a kid, like all little ones should have. God Bless your family with happy healing!

  5. Wow, what a brave little girl. I’ve had a spinal tap and I can tell you it was the worst pain I’ve ever experienced in my life and I’ve had two babies – one without pain killers. I don’t know how she did it but she’s obviously made of strong stock and has a purpose here on earth.

    I made a donation to the Ronald McDonald House in Kayla’s honor.

    Thanks for sharing this sweet little girl with us and childhood cancer sucks.

  6. Sandra – your post made me so proud and sad at the same time. I am so sorry for everything you as a family {and Kayla} have been through. Yet, what a remarkable and brave girl she is.
    You are an amazing mother, she is very lucky have such love surrounding her – I hope she has such a wonderful year in Grade 2!

  7. I do not know if I could be strong enough to deal with one of my childen with cancer> I am such a big supporter of childhood cancer and have reaised alot of money for the research over the years. So happy things turned out ok for her. Wishing you all many blessings!

  8. Looking back on the past 3 years I had no idea what life would be like but look at it now, just keep swimming. Love you Sandra, Kayla and the whole family.

  9. Of course your little girl is brave, she comes from good stalk…..Prayers for you and your family daily.

  10. I cannot even begin to imagine the heartache and pain that you’ve each had to endure. Kayla has a story of bravery, that only a child can have – children are so brave it is really humbling. I truly hope that her blood tests continue to come back cancer-free. Sandra, thank you for sharing Kayla’s story with us.