Hodgkin’s Lymphoma Survivor Kyla’s Story

Kyla&baby

It’s National Blood Cancer Awareness month, so I have been gathering some inspiring survivor stories for you all and we are also putting all Survivor Chick tees on sale this month.

I am so honored to share Kyla’s story with you. We became instant friends when she found my Hodgkin’s Lymphoma Story and have been emailing each other ever since. We have some similarities too (except I am not a beautiful blonde!) – she was around the same age as me when she was diagnosed and her little boys were the same ages as mine. And she works for the same accounting firm I used to work for. And my dad went through a blood cancer too, as hers did.

Kyla is so wonderful, such a light to others. I cannot wait for your to read this. You may need a tissue….

Cancer – 

Cancer – the word was something I would read or watch in a movie and feel fear but quickly pass over it as it did not directly affect me.

My best friend’s mother had passed away when we were in Standard 1 from Leukemia and my mother’s cousin, Erica, also passed away due to breast cancer 8 years before. It was sad, but a fact of life and so I would carry on with “life”.

All the stories, all the movies, all the articles could not prepare me for what would happen next. In 2010 my rock, my best friend, my amazing intelligent and brilliant father went for a check up and they phoned him back telling him his white blood cell count was too high and he would need further tests. Neutrophilic Leukemia was the diagnosis. Very rare, no major information available as the 100 or so people that had had it, never lived or did not live long enough for them to do extensive testing.

We were all afraid but hopeful. My father went on a wonderful chemotherapy called Vidaza and he injected himself in his stomach for 7 days and only had to repeat the chemo the next month – again for 7 days.

He did not lose weight or his hair and carried on working the whole time. He loved us, laughed with us and celebrated welcoming my 2nd baby boy on the 3rd August 2011. Keagan, my first son and Declan and their cousin Seve were the light that shone the way for my dad. He lived and breathed and fought for them. He was unbelievable in his battle with cancer and he never complained and would never feel sorry for himself.

Our time was spent with family, laughing and talking and sharing moments. That is all we have in the end, memories. We made so many great memories.

In 2011, 4 months after my son was born, I noticed my neck was swollen and went for a CAT scan. The results were not good. I had cancer. The doctors looked worried and tried to make me understand that this could mean death. I knew that, they didn’t have to tell me. My husband, Riaan, tried to keep his composure but he struggled and everyone just kept saying that it would be alright.

My father and I knew different. We were in this battle together now and he stood by me with all my appointments and surgeries and held my hand and told me to take it one day at a time.

I had a biopsy on the 28th December 2011 and was diagnosed with Hodgkins Lymphoma Nodular Schlerosis Stage 2B.  Everyone told me if that if you are going to get cancer, that was the cancer you wanted. I didn’t want any cancer but then again, there is no choice involved with these things?

I would start chemo on the 15 January 2012. My mother took me to all my chemotherapy sessions, she cried with me, she held my hand and she promised me that if anything happened she would be with me at the end.

We climbed Mt Everest together, my mom and I. We started at base camp and half way up, I told her I couldn’t do it anymore. She just told me to carry on for my kids. Keagan my 3 year old became quieter during the process and I basically handed my 6 month old baby boy to his nanny, as I could not care for him the way a new mother could.

My long blonde hair started falling out in chunks and so to make the process easier for my son, I told him he could cut mommies hair. He was so happy and so I gave him the kitchen scissor and he went bananas! Then my husband came home and shaved it all off. Keagan was not happy and asked me to please put my hair back. It was a very sad time for me.

I met my best friend and soul mate sister in the chemotherapy room. Danika had a 2 year old little boy and also had Hodgkins Lymphoma Nodular Schlerosis Stage 4 B. Her mother had had it 15 years prior so this was a shock and a very sad time for her family. Her mother had survived after years of treatment and so we just kept on hoping we would be like her and it was inspiring hearing her story.

We also met a lovely mommy of 2 boys, Michaela (you can read her blog at http://youmeandthebigc.blogspot.com) who had Hodgkins lymphoma and no medical aid. She was going for a stem cell transplant as her first course of chemotherapy had not been successful and was fund raising to save her life. Can you imagine? We became the 3 musketeers fighting an enemy we could not see, but one that literally ripped our lives from out of our hands. All mommies with small boys, under 5years of age.

My father was in remission and I believed that it was a sign from God that I would go into remission and that we would carry on with our lives, as before. Cancer would not win. We would laugh about this looking back and realize that it was just a bump in the road. A big bump, but just a bump.

On my second PET scan I was cancer free – after only 2 rounds of the chemotherapy drug BEACOPP. That is the German standard for fighting Hodgkins Lymphoma here in South Africa, whereas the Americans use ABVD as their standard.

I would still need 4 more treatments (instead of 8 as originally thought) but the prognosis was looking very good. I would also have no radiation after. They also downgraded my chemotherapy from Intermediate BEACOPP to Standard BEACOPP. This is why they do a PET scan after your 2nd round of chemotherapy.

I worked half day from home and tried to live a “semi normal” life. But the thoughts and fears would get to me. The what if’s and the but’s. They haunt you and never leave your side. You try to make peace with what may come, but it is still not normal to live with these thoughts.

My time was spent sleeping and trying to be a mommy. Keagan would ask me why I was always sleeping and I would just tell him that mommy was tired. Declan was flourishing under his nanny and my mom and dad’s care, but I felt cheated and guilty at the same time.

On the 9 May I went for my last Chemotherapy. My angel friend Danika had cupcakes made for me and I felt great.  Things were finally working out the way I had thought they would. My mom and dad and I had made it to the summit. She had carried me most of the way!

50 days later my father passed away. His Leukemia came back with a vengeance and nothing could stop it. Thursday afternoon he went home early feeling a bit ill and by the next Wednesday – 28 June 2012 my hero, mentor, friend and daddy passed away. Cruel as I felt the hand I had been dealt was, I also felt that there was a silver lining. God had spared my father, so that he could carry me through my cancer journey, and just when I had been cleared and told I was cancer free, his body relaxed and his cancer returned and he went home to be with the Lord.

I cannot explain to anyone what it feels like. There are no words I could write or ways I could tell anyone what cancer had robbed me of, of my femininity, my right to be a mother, my ability to be a great worker, the chance to be a friend, the many many moments I could not take part in, the moments I could not be there for my sons, for my husband. It is so hard to digest exactly what it took from me, to weight up the enormity of the emotional toll it took on me and those around me.

But one thing it did not take from me, my belief and faith that the Lord is always good. He was with me through it all. He sent many many angels to comfort me and give that little bit of strength I needed when I was not going to make it. Debbie from Happy First who became my friend after I wrote to her. Her story gave me hope!

The parking attendant at the hospital who started singing a hymn while I was lying on the back seat of my mom’s car after chemotherapy because she knew I was sick. The service attendant who gave me flowers at the garage where I would stop with my mom to get juice and water after my treatments. What unspeakable kindness he showed me during a time where kindness is not readily available. He ran out with flowers for me. Someone he didn’t know and didn’t have to be nice to.

The nurses who took care of us in the chemo room, smiling with us and doing everything possible to make us comfortable. Sister Stephanie, a chemotherapy nurse,  who passed away from ovarian cancer right in the middle of my treatments, because she did not even know she had it. She was always the life of the chemo room and I miss her dearly.

Sister Linda who showed me her port and told me not to be afraid as a port is a wonderful thing. She had colon cancer 5 years before and had survived! Sister Elria who always welcomed me with a smile and a hug and was a mommy to us all in the chemo room. The smiling faces in the theatres. The two lovely theatre nurses who prayed with me before I had my port put in because I was scared and was crying.

I have a blood clotting disorder and have had for many years, so surgery and chemotherapy just complicated it and I could of clotted at any time. But because of my daily injection of Clexane we kept it under control, but the fear of a blood clot added to my stress.

I sit at work writing this. It has been 1 year and 4 months since my last chemotherapy session. I have had another 2 more PET scans in the interim which shows no residual cancer.kyla's family

It feels like a lifetime ago. It almost feels like this happened to someone else, but then the sadness I feel every day that my dad is not with me reminds me of my dad’s passing, the nagging if’s and but’s in the corner of my mind remind me that it could come back and then the fear, which I have to push back. I have faith that it won’t but then I am not God and He has His plan for our lives. I do not question I just feel the feelings any human would faced with what I have gone through and then give it to Him.

I hold onto His hand. He guides me. He holds me. He strengthens me. He quietens my spirit and gives me joy. I also have hope, a hope for a future, for health and happiness. His mercy has given me a new life, and I live each moment to the best of my ability.

I love my life and the cancer has changed me, left it’s scar but it has started healing. I do not look at things the way I did before. I have a different set of eyes. My heart song has changed and when I feel cheated I just remind myself that my story has a happy ending, no matter how it ends.

There is nothing but peace when I put my hand in His hand.

Kyla

South Africa

Survivor

 

 

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