My Family Cancer Story: RJ Niko.

This isn’t a book related post but it’s something that means a great deal to me and I’m going to post it here anyway.

I have four brothers and four sisters so including me that’s 9 of us. From those 9 kids, my parents have 21 grandchildren. Our family gatherings are always loud, chaotic and to us, just perfect. All of us brothers and sisters are pretty close and all of our kids are extremely close so when bad news hits our family, we all feel it big time.

On September 2, 2010, we received a phone call from my sister Helen in Colorado. She’s the mother to four beautiful boys and her oldest son, Robert Joseph Niko was diagnosed with osteosarcoma. Osteosarcoma is the most common form of bone cancer in children and adolescents. Upon hearing the news, tears immediately rushed to my eyes and fell down my face. I could literally feel my heart breaking inside my chest. This isn’t the kind of news you’d like to hear about someone you love. Especially someone as young as RJ.

RJ is fourteen years old and had just started his freshman year in high school when we got the news of his cancer and to see the determination in this young boy is an inspiration to our entire family. He’s been so strong and positive about it that it makes me feel like such a wimp because I cry like a baby at least twice a day just thinking about everything that RJ is going through and what he will be facing in the months to come.

I can remember him as a baby, running around in his diapers, laughing like a loon and just being the happy baby that he was. He was such a tiny little thing with bright big blue eyes that changed colors with whatever shirt he was wearing. He has a smile that can light up a room and a laugh that is so infectious that you can’t help but laugh along with him even though you have no idea what you’re laughing at.

My sister Helen has been keeping an online journal of RJ’s cancer treatments in an effort to keep our family (which is large and spread out all over the world) updated on everything. These updates are what gets me through the day. Here’s an entry Helen wrote that wraps up our reality right now:

“Results from this morning’s biopsy has confirmed that RJ has Osteosarcoma, which is the most common bone cancer found in children and adolescents.” A parent’s worst nightmare has just become my new reality.

As the tears poured down my face, Dr. Wilkins continued with the diagnosis and detailed the series of tests and surgery that need to be completed before we could even begin chemotherapy. Luckily, Rob was able to hold it together long enough to get the information we need. After a short period filled with tears, disbelief and grieving (for the life that we now leave behind), Rob and I broke the news to both RJ and his younger brothers.

RJ took the news really well. He got a little teary but remained strong and confident for his brothers. “Don’t worry … I’m gonna beat this!” Maybe it’s RJ’s teenage mentality of invincibility or that at age fourteen he cannot even begin to imagine what the next year will hold for him. Either way it has helped RJ remain strong and confident.

His younger brothers took the news harder. Seth, age 13, quietly listened but never made sound. He tends to keep things bottled up inside, but he sat there next to RJ, quietly shaking his head in disbelief as the tears flowed freely.

Kaleo, at age 10, was the most vocal. He cried when Rob said that RJ would have to have surgery to insert a tube into RJ’s chest where they could give him chemo and medicines. Having had 3 major surgeries on his feet, Kaleo knew first hand the pains of surgery and recovery. “I don’t want RJ to have surgery! It hurts too much.”

Our youngest, Kainoa at age 5, slept through the entire conversation. This ended up being such a blessing. By morning, when everyone had their emotions under control, Kainoa only understood that RJ was really sick and had to go to the doctors a lot.

As the oldest of four boys, RJ has always been the big brother, leader of the pack. However, I know that in those quiet moments when he thinks no one else is watching, I see the look of uncertainty and fear. As a mother, it breaks my heart that he worries so much about everyone else around him.

Like any typical teenage boy, RJ loves sports and the outdoors. From snowboarding to wakeboarding, bike riding to hiking, football, soccer and most especially basketball, RJ loves them all. He is an active member of Scout Troop #587 where he is working towards his Eagle Scout. With five merit badges and an Eagle Scout project to go, RJ was certain that he would have his Eagle rank by summer 2011. Though his sports activities will be on hold for at least a year, he is determined to continue working towards his Eagle rank.

With one round of chemo under his belt, RJ is not quite so nervous about round 2, which will start on October 4th. We have been back and forth to Denver (about an hour drive from Loveland) for a CAT scan, full body bone scan, audio, ECHO, EKG … and many other things that I cannot even begin to remember or even know how to spell. Through it all, RJ has been such a trooper. Yet we know that this is just the beginning.

RJ will have at least three, but may need up to five, rounds of chemotherapy before the doctors perform surgery to remove the tumor. Chemo will entail one week in the hospital, two weeks at home (barring any complications during his two weeks out of the hospital). After the tumor has been removed, his doctors will determine how much more chemotherapy will be needed. Currently, they do not anticipate the need for radiation treatments, but it cannot be ruled out completely.

Chemotherapy, plethora of pre-chemo tests, week-long hospital stays, emergency room visits, numerous prescriptions, home health care nurses and supplies, physical therapy after surgery … the list seems endless. Physically, emotionally, financially drained we press forward, what other option do we have?

“Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee withersoever thou goest.” (Joshua 1:9). This has become our family motto. This is our option. This is our reality.

This is a boy that loves his family and we love him. I’ve watched him grow into such a handsome, strong young man and I’m so blessed to have him in my life. I love this kid like he was my own and it is why I’m writing up this blog post, in hopes of reaching out to my readers and friends for help.

On October 23, 2010– RJ’s friends have put together a 5K walk in RJ’s honor that will be held in Loveland, Colorado and all of the proceeds will go directly to the Niko family to help with the extraordinary medical expenses that they’re incurring. It is my hope that this blog post will reach as many people as I can to get the word out there for my nephew.

If you’re in the Loveland, Colorado area and would like to participate then leave me a comment here or shoot me an email at rowena[at]thebookscoop.com and I’ll get you the information you need. Registration for adults is $25 and for children it’s $15. If you won’t be able to make it to the walk but would like to donate, you can do that as well.

You can register and donate at RJ’s 5K walk page by clicking on the picture:

From the bottom of my heart, I thank each and everyone of you who took the time to read this blog post and chose to help out my family. The amount of love and support that our family has gotten over the course of the last month since we found out about RJ’s condition has given me such peace and made me realized just how blessed we are to have such wonderful people in our lives.

THANK YOU!

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