A Glimpse Into The Heartbreaking and Graphic Reality of Childhood Cancer

Gosh there are so many things in my reality to be thankful for. I read something yesterday that said "What if tomorrow you woke up and all that was left was what you had actually thanked the Lord for. It made me think. Yeah, I need to spend more time thanking God and less time yelling at Him.

Today was one of those days that I was reminded again of the reality we are in. It hit me quick. Almost like when you are 9 months pregnant and you all of the sudden have to pee. Like "omg tie your shoes, tie your shoes, keep tying your shoes-oh crap I'm wearing Toms" until you can compose yourself enough to stand back up and walk to a bathroom. That's what happened today in clinic. Kicker had just been accessed {the nurse had put a needle through his portacath to be able to take labs and administer chemo}. We were sent back out to the waiting room while we waited for his labs to come back. I just looked around the room that was filled with babies, kids, teenagers. They were all bald. Their faces were grey, they looked exhausted and very very sick. This sweet little baby who couldn't have been more than 7 months old, was sitting in her car seat with an IV line hanging from her arm. She was bald. Not just baby bald, but no eyelashes or eyebrows bald. I had Selah in my lap and I did everything I could to busy myself playing with her hair so I wouldn't start crying. The clinic door opened and in comes another family, with a bald toddler who was wearing a mask and holding his bottle of Zofran (anti-nauseous medication) with a death grip. I quickly looked down and continued helping Kicker color his dinosaur picture.  I couldn't look up. If I did, the tears would have spilled over and I would not have been able to stop it. Thankfully our nurse called us back shortly after, and we went to the infusion lab.

The infusion lab. Ugh. Picture a big, cold, stuffy office filled with cubicles, but without the sophistication. Instead of short walls surrounding each desk space, you have curtains. Instead of emails and faxes, the occupants are receiving chemotherapy and Zofran.  Instead of the sound of phones ringing and light mumbling you hear vomiting and crying.  The nurse assigns you your "chair." Today we were number 9. Kicker knows his numbers so one of his favorite things to do is find his chair. We walked by a sweet teenage girl who was laid back in her chair. Her face was so puffy from the steroids that you could barley see the whites in her eyes. She was wearing adorable skinny jeans and a new pair of Toms. Her mommy was rubbing her bald head and saying quietly "it is going to be ok honey, its going to be ok." Then we saw our first roommate from the hospital. Sweet little Alex. He is 5 and has stage 4Nueroblastoma. When I asked his mom how he was doing, all she could do was nod her head 'no.' I asked if he had been hospitalized since we were with them and she told me they had been admitted 4 times since December.

Finally we get to chair 9. I get the iPads out, the coloring books, snacks and water. Kicker sees his 'robot' (IV pole) and immediately starts telling sissy all about the robot and how the robot gives him his super power juice. I smile as I see his strength and his pride in what he is going through. Quickly that moment of admiration is interrupted by the loud and strong sounds of our next "cubicle" neighbor dry heaving. She couldn't have been older than 6 or 7. As she was vomiting, she was crying to her daddy and telling him that she wanted to go home. I saw Selah quickly look up and her eyes darted to me with concern. I immediately distracted her so that she wouldn't say anything inappropriate or offensive out loud. Everything about this shit is inappropriate and offensive. There really is no way to hide that or to escape it. The reality for most of these children is offensive and unfair. Knowing there is something that these kids can do to ease their pain, to help with their fight and to make them more comfortable is what makes me crazy. I know that we have been blessed with how amazing Kicker has done. The fact that he has not had one single side effect from 14 rounds of chemo is nothing short of a miracle. And although I know that could all change in a minute, I have to believe that everything we are doing alongside his conventional treatment is helping.

During our brief meeting with our Oncologist today I couldn't help myself but voice my concern about the lack of education and provision for diet and detox implementation. He L-I-T-E-R-L-L-Y went silent. When he didn't respond he packed up his computer uncomfortably and said "I will see you next week." And.that.was.it. That is so overwhelming. To feel so alone in what you know is truth. The minute I begin to question myself and everything I have studied, everything we are doing for Kicker, I am quickly reminded of the reality of most cancer patients. And that it is NOT Kicker's reality. I know that this could change and that is why we live 15 minutes at a time. But I know that Kicker is not a statistic. He is outside of the box in regards to his fight with cancer and I pray that he is bringing light to the need for better treatment for these children.

Our reality gives us many reasons to be thankful. Our reality is so much richer now. The little moments that used to not mean much, mean EVERYTHING now. As a parent I would always say "I never knew I could love someone so much." But now I know that is not true. When you think you could lose your child, that love becomes bigger and deeper and more than words could even describe. Our reality isn't pretty, but it is blessed and I pray that God will use us to help make other families going through this, stronger and ease just a bit of their pain.

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Season Johnson

Season Johnson, B.A., NTP uses her knowledge in preventive healthcare and nutrition science to educate families on how to achieve real health in a real-life way. Through a nutrient dense diet, detox remedies and healthy living, she is helping her 3 year old son, beat cancer and thrive during conventional treatment.