Friday, October 21, 2011

Kace's Story

I remember watching "My Sisters Keeper" on the airplane... sobbing out loud. I remember saying to myself, "I could never go through that as a mother, I just couldn't do it." I've now learned never to say never, and to cherish every waking moment you have with the ones you love because never know what path lies ahead for you. 
Kace was diagnosed with Acute Lymphoblastic Leukemia on November 30th, 2010. No mother should expect to know the signs of Cancer. It's something adults get, not kids.  When I look back at photos around October of 2010, I sometimes think, how did I not know? He was pale, had dark sunken eyes, he was tired, whiney, needy, sensitive... totally out of character for Kace. He started bruising and swelling with small injuries that he couldn't explain. How did I not know?  I had x-rays done on what I thought might be a broken clavicle, the next week a broken elbow, the next week a broken arm.  I even asked him if someone was hurting him. My "mother instincts" were going haywire, something wasn't sitting right and no one could give me any answers. 
We ended up putting a cast on him, even thought the X-rays said "possible fracture". In children it's difficult to see if there's a fracture at the bend of the elbow, or if it's their bone plate. But because there was so much swelling they assumed he had broken it. They didn't know it was the Leukemia blasts in his bone marrow pushing on the inside of his bone. 
On the morning of November 30th I woke up next to an exhausted Kace, barely able to move. He had yet another sleepless night with complaints of neck and shoulder pain. I thought that it may be muscle strain from the weight of his cast. Two days prior his pediatrician prescribed him liquid pain medication to subside the pain from his "broken arm"... It wasn't working, something was wrong.  I decided to go  see the doctor who had put the cast on him,  I was running out of options.  Kace was in so much pain he couldn't even lift his little arms. I could visibly see that his lymph nodes were inflamed, his skin around his collar bone was hot, swollen and red in color... something was definitely wrong.  I zipped on a sweatshirt since he couldn't lift his arms above his waist, and we headed up to Primary Children's.  
I'll never forget the look on Dr. Klat's face as I unzipped Kace's jacket, it was terrifying to me. He looked at me and said, "This is not a fracture, I think you need to take him to the ER." My heart sank... what was it then? 3 years prior Kace had spent two weeks in the Neuro-Trauma unit due to a rare auto-immune disease called Guillian Barre Syndrome... was it back? I didn't have time to think. I gently zipped Kace's jacket back up and we headed to ER. I can't imagine what Kace was thinking or feeling at this point; I tried to stay calm and collective and assure him it was all going to be ok and that his neck would start feeling better soon. 12 hours in the Emergency Room~ they sent us home and told us they'd call when they received his test results. Most likely it was Rheumatoid Arthritis and that we'd need to get an appointment with a Rheumatologist the following day. They also mentioned there was a chance that it could be Leukemia, but due to his high blood counts, they were favoring the arthritis. I thought to myself,  how can they say all of this so casually? This is my baby and they just used the work CANCER! The ride home was all a blur... I just remember thinking, it can't be cancer... it won't be cancer. 
The phone call from Dr. Lemmons came too soon. The blood tests were inconclusive, Kace had Childhood Leukemia. I can't really remember what the doctor told me past that point, all I heard was Cancer and come up to the hospital tonight. I literally had to be picked up off the ground because I had fallen down into the fetal position. I couldn't believe this was actually happening....CANCER! I tried to pull it together quick, I had to stay strong for Kace, I had to make him feel safe. I walked into the family room, and with my Mom, Dad, brother, and husband we told Kace that he was sick. We explained that his body was hurting because of a bug called Cancer. We told him he was going to be okay, and that his body wasn't going to hurt anymore because we were going to go up to the hospital to fix it.  His Grandpa and Uncle gave him the most heartfelt blessing, and we headed back up to the hospital. Kace was so brave... I know his angels were surrounding him at that moment.
Kace flew through induction and has been in maintenance since May. He’s adjusting to this new phase of chemotherapy with strength, courage and a dying desire to be 'normal' again. There still are daily occurrences of nausea, stomach pain, exhaustion, headaches... but you'd never know unless you asked him... he doesn't want to be treated any different than the other kids. He goes to school, plays on the playground, does Tae Kwon Do, Breakdancing... all of that with taking daily, weekly, monthly and quarterly dosages of chemo. He's an amazing little man who has taught me about courage and how to look at the glass half full. I can count on one hand the amount of complaining Kace has done through this all. He's never been a victim, only a fighter!  
It's taken me about this long to get my feet under me. I went into a funk when Kace entered Maintenance; all sorts of strange emotions started surfacing.  I think because I finally had time to breathe reflect on all that had happened. It was a crazy 6 months full of ups and downs and we all had been running purely in survival mode. I can now say that I am truly thankful for my trials... and I mean it. Had this not have happened to us,  I may not have learned that life is too short to sweat the small stuff. All we have is today, and what we do today is all we can control. 

To read more about Kace and his battle with ALL you can visit his blog

Written by Kace's mom, Erin Smith.

1 comment:

  1. Kace is such a wonderful example to us all, as are you. I hadn't heard your story before and I cried all the way through. We also got the cancer word thrown at us with a I don't think that's what is it... I remember thinking they had to be crazy to just say CANCER and then tell me to be on my way. It's also still hard for me to look back on pictures before Millie was diagnosed and not feel guilt for not seeing it sooner.

    I think we all go through a weird funck when the "hard stuff" is over. Our brian finally has a chance to say, "what the hell just happened".

    I am so glad things are going better for you all. Kace is a champ!