cancer · Childhood Cancer Awareness Month · Uncategorized

I Thought My Nightmare Was Over

This guest post for Childhood Cancer Awareness Month was written by my friend Stephanie (name changed for privacy).  She addresses an issue that impacts many families, post traumatic stress.  The stress of childhood cancer impacts not only the child, but the parents and siblings as well.

On January 14, 2014 my son would take his last pill of chemotherapy. We had just finished up over 3 years of life with leukemia. (Insert massive applause!) I was so excited! No more grinding pills and forcing meds down my son’s throat. No more long days at clinic waiting for counts and getting IV chemo. Gone were the days of rushing to the emergency room with fevers. And the number one thing that I could not wait to kick to the curb was the many mood swings my son had as a reaction to the meds. Cancer was going to be a thing of the past!

Wrong.

A month later, once his behavior and mood swings were supposed to be getting better, Zack turned into a monster. I could not control his outbursts. He was lashing out at everybody. Constantly.

I talked to the doctor, the nurses, and the social worker. The responses I got were: “Chemo lasts in your systems for up to 6 months. Maybe he still isn’t feeling well?” “Maybe he is finally feeling better and has a ton of energy he needs to burn off?”

This behavior continued longer than 6 months. I was beside myself. And angry. So angry. I had looked forward to this time of cancer freedom for so long and my dreams were shattered! And no one knew why?! Why? Why was my son uncontrollable. Why was he hurting everybody? Why would he be so nice one minute and then just blow up at everybody in the room?! I thought, “Give me chemo back! I liked that boy better!”

School turned into a battle. HIs teacher was so patient and kind. And my son was not. He spent many days in the principal’s office. A good report for the day had me throwing a party! Literally! A party! Sweets and presents! I did everything I could for this child to motivate good behavior. Nothing was working.

In the midst of that, my oldest daughter started acting out at school. Not listening to the teacher. Getting up in class and just walking out. And at home, if I was worked up because my son was being bad, she would go into “fix-it” mode.

Life was chaos! Life after chemotherapy sucked. I just wanted to quit. Where was my perfect life after having survived hell?!

After months of not knowing what to do, I was sharing my co-worker how I just dreaded sending my kids to school. That every night I would pray for wisdom and my heart was broken that everything was such a struggle. After listening for a while, she recommended “Winning at Home” for my kids. Winning at Home is a group of therapists for kids and adults who have been through some sort of trauma. I sat back for a second and a light bulb went off.

Therapy? THERAPY!!!!!!!

Not once I had even thought that my kids would need this. Cancer was done. We made it. We could move forward. We were ok. Right? Nope, we weren’t! Life was horrible! I needed a way to control my son, help my daughter, and work through my own trauma!

I made an appointment for my son first. I was so nervous. Maybe I was crazy. Maybe this is just who my kid was. Maybe I was just a bad mom. Maybe it was all in my head!

Little did I know how much Miss Emilie would be a healing balm to my soul. She listened. Researched. Talked with my son and I. She gently suggested that maybe Ike had PTSD. Post Traumatic Stress Disorder.

Hearing those words

Hearing those words sent me reeling into memories like a flash flood. The details of why this made sense are so many. The words “medical trauma in children” pretty much sums up the details. Why had this never crossed my mind?

But it makes sense, doesn’t it?! It is not just adults, people! The therapist and I began making connections that when my son would feel trapped, emotionally or physically, he would lash out. Fight or flight. *deep breath* The awareness that he was suffering and has to work through medical trauma helped me so much. And I have a plan to help him.

And my daughter? Anxiety.

Duh.

The many random days Mom would be crying. Waking up and there was a baby sitter because Ike was in the hospital again. She had no control over anything! PTSD in kids is such a new thing. Even the therapist is doing so much research because how medical traumas, specifically cancer, is affecting children is such a foreign topic!

And how does chemo effect that part of the brain? What repressed memories cause responses that children are not even aware of? Is this behavior something that may be a side effect from all the drugs? Are there things we can do even during treatment to prepare children to handle the emotional toll it takes? As adults, we know words like “stress” and “over-whelmed”. A two year old does not have any clue what these words mean! Let alone communicate these emotions to an adult!

These emotions and thoughts are something my son needs to work on. His behavior has a real root cause and his therapist and I are on a mission to help him. To teach him there is a better way. That anger and hitting are not ok. He is safe. He is loved. He is not a bad boy. But bad things did happen to him. And we understand why he is upset. We get it.

My daughter is also in therapy now. She is learning how to deal with anxiety. I see a therapist for parenting my children who have walked through a trauma. The journey is just beginning for us. But I am hopeful that we will be better in the end. I want my story to be a light to other parents to let them know that they are not alone. That they are not bad parents. That something bad happened to them and there are places to get help. We got this parents! We can do hard things and live to tell about it!

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