Posted on 04/07/2015

Let me be clear. In no way am I professing to be a “supermom”. However, there’s something to be said about the mother who can manage to get children to practices and games, attend school programs, birthday parties and most child-related activities on a regular basis, still managing to remember each child’s favorite color, food, AND name, while ensuring each and every one of them feels your love.  To me, that is a kind of unexplainable super power that prevents her from having a full blown adult meltdown. However, I do not do it alone. DJ is equally involved in all that happens with our children. So many say to me they don’t know how I do it. My belief is, any parent in our situation would do no less than we have been doing for three years now.  To know my son and see him in action, you would not look at him and say “poor kid”.  In fact, you would say, “WOW! He is something else”, as you watch him run around having fun, cracking jokes, giving you intel on the upcoming sneak peeks into next year’s Transformers movie, and Wal Mart and Target “exclusives”, you do not look at this kid and see all that is happening inside of his little body.

As many of you know, on January 13 a tumor was found in the left frontal lobe of Nathaniel’s brain. Emergency surgery occurred the very next day, and the surgery was a success, with chemo and radiation to follow nearly a month after the surgery. Up until March 18, Nathaniel had been progressing and healing well, as though he’d never skipped a beat. He managed to continue going to school, keep up with homework, and did well therapy. In fact, on Thursday, March 19, during his regularly scheduled hospital visits, Nathaniel started the morning with physical therapy, followed by speech therapy. The speech therapist just told my husband that morning that she felt comfortable switching from every week to every other week, since he had been progressing well. After appointments, Nathaniel finished his day at school, came home, did homework, and by the time I arrived, he was busily building a Lego that he’d received from the hospital as a reward for doing all of his exercises with PT. Shortly after dinner, we began to clean up, and I asked Nathaniel to grab a juice for his brother. He walked over to the refrigerator and literally stood there staring into the refrigerator.  I actually thought he was ignoring me because I’d asked him to do something for his brother. I then told him to go ahead and just sit back down if he wasn’t going to be helpful, and he did. I asked him another question, and he still didn’t reply so I told him I would move his Lego until he decided to answer me. If you know my son, touching his Lego’s is not something he takes lightly. Rather than Le’ggo my Eggo, his response would be “LE’GGO MY LEGO!!!”  When there was no response from him, I knew something wasn’t right. His eyes had glossed over, I couldn’t explain it, it was more of a blank stare that I’d never seen before. I looked straight at him and asked if he could hear me.  Still, nothing. I then said “Nathaniel, if you can hear me, and you’re not playing or pretending you need to tell me now because you’re freaking me out”. Still not receiving an answer, I immediately told the boys to get their shoes on, called DJ and told him something wasn’t right. I was going to drive him to Children’s Hospital. I quickly placed my ear near his heart, and it was beating fine. I picked him up, took him to the car and once I started to strap him in, he made an attempt to say something but nothing was coming out of his mouth. I panicked even more, and then called 911. I knew there was no way I could make it in time given I had no idea what was happening. It was a horrifying experience. Matthew and Lucas just kept trying to talk to Nathaniel, they kept their cool. I was so proud of them for how they handled the situation. Once paramedics arrived, Matthew, my 3 year old, ran up to the first paramedic and said “my brother isn’t talking”.  By the time we’d arrived to the hospital, he was having a full blown seizure. The goal was to get Nathaniel stabilized so they could get a scan of his brain to determine what was happening. The next few hours were almost a blur as everything happened so fast.  The end result was that the seizure was a result of yet another tumor, almost two months after the first one, in the same exact place.  Completely disheartening given that this tumor was able to grow in such a short amount of time.

Needless to say, another surgery was required, but a greater discussion needed to be had. The surgery went well and Nathaniel is healing great. In fact, after awaking from the sedation, he stayed up and asked if he could build a Lego that was left for him as a gift. Amazing? I think so. He stayed up all night, played with his Lego, watched the Lego Movie and his iPad, as if he hadn’t undergone a 5 hour surgery on his brain. He never ceases to amaze me. His doctors were taken aback at his alertness and having all of his faculties in order the way he did.  As well as he bounces back, it is so hard to understand how cancer continues to overpower his little body.

I knew in my heart the conversation we were to have with Nathaniel’s oncologist, and though I cried buckets while he was sleeping, once we had the actual conversation about the reality – the reality that THIS WAS the one medication and treatment plan that had been successful with the small majority of patients whose bone cancer had traveled to the brain.  What now? We began the conversation about quality of life issues vs. continuous surgeries, etc. If the tumor returns, which they are fairly certain it will, what would be next for us? The answer is not something I’m prepared to discuss or grasp or acknowledge. What parent ever wants to have to make a decision about whether or not we decide that we are no longer going to fight the fight, that cancer has won and will consume his little body until he just can’t take anymore. I cannot for the life of me even begin to put into words the level of pain I feel in my heart, the amount of tears I have cried, the number of prayers where I have begged and pleaded for God to lay his healing hands on Nathaniel and allow me to keep my son here with us in this world because I do not know how I could awake every morning with Nathaniel not in my life. I do not want to be the mother who lost a child—surely no mother wants to be that mother. I look around my home and see our family pictures and it tears me to pieces to think that he could one day not be with us. I then realized that even Supermom has a Kryptonite, and I know should I ever be exposed to that kryptonite, there is something inside me that will die and destroy me to my core.

I have had such a difficult life compared to most, but I’ve always worked to stay above it all, remained positive, and believed that eventually all would work itself out, and that God was always looking out for me despite it all, that He had a plan that I just didn’t understand. At this point, I will never grasp the concept that my life would be without all three of my sons. I continue to pray for a miracle, and we are looking into alternative medications while his oncologists attempt to add a different twist to the treatment plan hoping something will work, but it is more so to keep the cancer at bay to allow us the maximum amount of time with Nathaniel. I will never stop trying to find something that will work for him until I have no choice, and I continue to pray that I will never have to make a choice that will break my soul and heart into a million pieces. I have taken a leave of absence from work so that we can spend more time  together until I can take a moment to exhale, and pray that through a miracle of God and the thousands of people we have praying for him, Nathaniel’s cancer will eventually be gone. It might be a childish wish, but it’s my wish, and I own it. I pray every day to wake up with my three boys and watch them grow into healthy young adults, who will fill my home with lots of grandchildren. Today, he is here with us and he is going full speed ahead, and for that I am more than grateful. I hope you all had a wonderful Easter celebration, honoring the Resurrection of our Lord. I believe in God and his ability to heal, I always have. I just hope my belief is enough to keep my life whole. Blessings to you all.

I will keep you posted soon with information about an upcoming fundraiser for our family.

Categories: Our Journey

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