Posted on 02/03/2015

In my younger years, I was always intrigued with the term “the road less traveled”.  To me it meant being a cut above the rest, venturing where only the bold and strong have been, and bravery in a person to be a leader, not a follower, taking a risk for a greater reward. Today, I’m not sure that the meaning has changed, but I’m honestly not that excited to be on the road less traveled. Here’s why:

We have met with the radiation oncologist as well as Nathaniel’s regular oncologist, and while there is a plan in place for radiation and treatment, we are entering uncharted territory. It’s been emphasized over and over how Nathaniel’s cancer spreading to the brain is very unique. It’s not the first occurrence but it’s incredibly rare. So rare that there are more studies explaining just how rare this is versus studies of successful treatments.

In 2012 when Nathaniel was first diagnosed, aside from the fact that I felt like I’d been hit by a ton of bricks, we had to move swiftly to remove the tumor. We were faced with making the decision to move forward with his rotationplasty surgery. We were of the belief that Nathaniel losing a limb paled in comparison to losing his life. It had also been a very successful surgery on many osteosarcoma patients and his quality of life would not be as diminished.  I have to admit, I’d convinced myself that once he was done with chemo, that we would be able to put this behind us and move forward  with our lives, with cancer being a thing of the past.

In 2013 when the cancer returned to Nathaniel’s lung, I remember how difficult it was to get out of the ICU unit because his lungs wouldn’t expand and I had a strike of fear in me once again that my son would be taken from me. I remember getting on my knees and begging God to let me keep my son, and to please heal him. The very next day, Nathaniel’s situation improved and I felt that God had definitely heard my cries. I truly believed that while this major setback was scary indeed, this was just one more hurdle, and we would again triumph and resume our lives. We were falsely elated with great news the week before Thanksgiving. Nathaniel had reached a milestone, 9 months of clean scans. I can’t even describe to you the happiness my heart experienced and how blessed we felt during the holidays. Once again, I thought we could put cancer behind us, and begin to think of ways that our family could help make a difference for other cancer patients. Unfortunately, that notion was short-lived.

This week, while consulting with the radiation oncologist, he mentioned that because we are now dealing with the brain, Nathaniel would need to get an MRI every 2 months…..for the rest of his life!  It shocked me a bit to hear that and I know it sounds crazy but I realized for the first time that cancer will never be a thing of the past. It will be with us every step of the way throughout Nathaniel’s life. Hopefully not the cancer itself, but surely the aftermath of it will never go away.   There’s no hurdle to get past anymore, we just have to accept that this poison will always haunt my baby’s well-being and health.

I feel so many emotions it’s not even possible to explain each one. Aside from the obvious fear and anger, I feel cheated, and I also feel that way not just for Nathaniel, but all of my boys who have ultimately been cheated of a normal childhood- the childhood I’d only dreamed of providing for them. Rather than saving money for vacations, we will be tasked with fundraising and saving money for medications, meals for Nathaniel who is truly done with hospital food, gas, co-pays and every expense in between. Even mini-vacations are nearly impossible when a child is in treatment as blood counts could be low and fevers are an automatic admittance to the hospital for possible antibiotics and transfusions. I want to take a moment to thank all of those who have reached out and provided support. Our family is more than grateful.

Many have asked how Nathaniel is taking this. I’ve asked him numerous times of his feelings and if he has questions. His reply is “I’m kind of OK, and just want this cancer to be gone forever”. He also says, he’s ”ready”.  He’s ready to fight once again, he’s ready to face the challenges of chemo and ready to take on radiation since he now feels better after learning more about the radiation treatments. He felt better because treatments would only be about 15 minutes long.   I felt worse because even that short 15 minutes could bring potentially severe, long lasting harm to his body/brain. To hear him explain in his own words to his classmates about what has happened and what’s ahead, I pause in awe as to how matter-of-fact he is, and I think to myself so many times “who is this kid?”  He is an incredibly inspiring child without realizing his impact.  I recall when Nathaniel first entered ECE, his all-time favorite book that he liked to read most every day was “The Little Engine that Could”.  Who knew how much that book would epitomize his life today.  To some degree, he continues to be the little engine that could. Despite all that he has endured and what is facing him in the coming years, he has the attitude of “I think I can, I think I can”.  No wonder I consistently beam with pride when it comes to his strength and attitude.

So here we are…this week Nathaniel will be fitted for a mask that is used for radiation to insure that his head is in the same exact place each treatment because the radiation is very focused and precise and will aim toward the tumor bed.  Radiation will begin in the next week or so. He will have 3 radiation treatments, every other day, and shortly after will begin chemo treatment. The scary thing about radiation is that we are going into the brain, and the negative impacts to the brain can be many. One other possibility with any radiation is that it could bring on another type of cancer (because one isn’t enough, right?). We will meet with his oncologist next week to finalize his plan. His doctor has consulted with several different experts across the country, including a few facilities I contacted personally while I was home with Nathaniel after his surgery.  We will also be doing genetic testing on Nathaniel to see if there is a possibility of identifying which gene may be causing this inability to fight the cancer cells. No idea what will come of that, but at this point, I am trying to cover all bases on what we can do to rid his little 8 year old body of cancer.

We are keeping many families in our prayers these days as we continue to connect with many more cancer families.  There’s always an immediate connection when you meet another cancer family. We all understand the road we have been down, and the challenges and fears are very similar. There are many terms that we use every day to describe mommies. There’s “soccer mom”, “stay at home mom”, and then there’s the ever growing “cancer mom”.  While it’s not a title I ever wanted, and would never wish for another mother to have, I will wear it proudly because I will always be proud of my Nathaniel. To my Lucas and Matthew, who have also been hugely impacted, they are “Super Siblings” in every sense of the word.

Thank you all so much for your continued support and concern for our family. Please keep us in your prayers as our family begins down this journey of the road less traveled.

Categories: Our Journey

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