A Birthday present I’d like to give back

Posted on 01/22/2015

It’s taken a while to get myself together to post an update on Nathaniel. I wasn’t sure where to start and when all of my emotions were gathered to attempt articulating into thought, I just couldn’t stop the tears. Tears of feeling defeated, discouraged and very afraid. One thing I can say about my son is that he is very aware of his body and is able to identify when something just isn’t right. He makes us aware of what he is experiencing and is always able to clearly explain his symptoms. For that I am thankful.

One week before Thanksgiving I posted a photo of Nathaniel with a poster that read “9 months cancer free!!”  I have to say it had to be one of the happiest moments of our lives. We’d reached a milestone for the first time since Nathaniel’s 2 year battle with cancer.  Needless to say we were able to celebrate the holidays with a big sigh of relief and appreciation of all that makes us thankful.  Reaching that point in our lives – alive, cancer free, and together, was taking us all on a road to recovery and healing.

While most children returned to school after the holiday break, Nathaniel did not. He wasn’t feeling well. He was vomiting every couple of days and while he kept fluids down, he just wasn’t very energetic. We took him to see his primary doctor and she seemed to think it was “the bug” that had been making its way across many children and families. We were advised to give it another week or so or if things became worse, then we were to bring him back in to be seen again. Shortly after that visit, Nathaniel was no longer holding down fluids, was throwing up 2 or 3 times a day, and was very lethargic, experiencing severe headaches in the same spot, the left side of his head. He wasn’t himself, so rather than take him back to his primary doctor, I opted to bring him to Children’s Hospital because I wanted to be 100% certain that we were only dealing with a bug. I tend to be a bit paranoid when it comes to Nathaniel having the “average” sickness, and I now know I will never stop being overly cautious when it comes to my children not feeling well.

Fast forward to January 13, my 44^th birthday. I opted to spend a night at home with the most important men in my life. However, that was the day I brought Nathaniel to Children’s. I wanted to be assured he was fine so we could go home and celebrate my birthday with a nice dinner. While expressing my concern about his recent condition, I was told that I should not be too concerned about anything serious going on in his head as it relates to cancer, as the brain would not be a normal path for his type of cancer to take.  He was severely dehydrated so they hooked him up to an IV for fluids and agreed to do an MRI to rule out that possibility. I felt relieved that we would get more definitive answers —-until the results of the MRI were revealed.  His oncologist came in and said “I have some bad news. We found a tumor in his brain”.  It was located in the left frontal lobe right above his eye. I know he must have said a hundred words after that, but once he said those words, it felt the way it plays out in the movies, where you enter this tunnel and hear nothing else as you try to process what you were just told. I was absolutely numb, and Nathaniel was so tired, his only response was “can I sleep now?”

Once DJ arrived, we spoke more in detail about what needed to happen with Nathaniel. The most immediate step was to remove the tumor. His surgery was scheduled the next morning. It was a 6 hour surgery. The numerous things that could happen during a surgery like this had me incredibly stressed and afraid, so I called on my prayer warriors and asked that they help spread the news of Nathaniel for a safe and successful surgery. The surgery indeed went well and I am beyond amazed with his attitude and recovery. The first couple of days were the most stressful, with the first night being one that could potentially have led to Nathaniel having seizures. While he slept fairly comfortably, thanks to generous amounts of medication, I hardly slept a wink, just in case something happened and the ICU nurses couldn’t hear him, I was there to make sure they were alerted. While on day 2 he was still in a great deal of pain, I was a bit relieved when he woke up and asked me to open his box of Legos so he could begin building. Brain surgery one day, Lego building the next. I am constantly amazed with his perseverance, attitude and determination.

On one hand I am:

scared – We are entering territory that has not been well traveled when it comes to his treatment options. They are suggesting the first step after surgery to be radiation in the tumor bed. The thought of radiation just takes me back to the beginning of his diagnosis, being afraid of all that is unknown. He’s never done radiation before, and it scares me that it will be happening in his brain.

Angry –while it may not be a normal path for osteosarcoma to take, it’s not the FIRST time this has occurred in the history of cancer. DJ has asked in the past why his entire body isn’t scanned, and they have responded that they do not want to unnecessarily expose Nathaniel in an area where they wouldn’t need to, particularly because Osteosarcoma does not normally travel to the brain. Seems like a moot point now because he will now be exposed everywhere, but we should have at the very least, been given the option to have his head scanned along with the rest of his body prior to this. It could have been that this would have been caught earlier so that the 5cm tumor would have been much smaller or never allowed to grow at all.

Heartbroken – My genuine belief is that no parent brings a child into this world to suffer. My children are a part of me and one of the sole reasons my life has a purpose. Before I became a mother, I knew I wanted children and would love them to pieces, but I had no idea just how much I was capable of loving.  The day they were born, a part of my heart was given to them that will always keep us connected. Their pain is your pain, and even more unbearable when there isn’t much you can do about it.

Hopeful – I want to believe that our family has been chosen to take this path for a purpose that is greater than anything we can understand. I’m hopeful that we will get to a place where this can be a memory of the past and that our future will be bright despite the amount of trials we have experienced and continue to experience. I am hopeful there will be a treatment that will get our son to a cancer free life and that we will get to watch our boys grow into the men they are meant to be, making us incredibly proud along the way.

Blessed – There is no way that I cannot feel blessed through all of this. We are blessed with three beautiful, smart, loving, and wonderful boys. I could never imagine my life without them. They bless our lives every single day, and constantly melt my heart with their words and actions. They have a father who feels the same way about them as I do and I have a husband who continues to put his family first above all else. We are surrounded by family and friends who are equally devastated by the tragedies our family continues to experience. They are willing to help in any way they can, and will step up to the plate when it’s necessary. Our friends can be relied on any time, making them extended family if you will. They care deeply about Nathaniel and our entire family, and for that we are blessed. So despite the part of our lives that does not bring many smiles, how can we not take a moment to count the many blessings that we have been gifted?

While recovery from the surgery is going well, there are a few things happening that concern me, but I hope they are temporary.  We have to meet with Neurology tomorrow and hopefully they will be able to alleviate my concerns.  The day we brought him home from surgery felt like the first day I brought him home when he was a newborn. I was responsible for washing and cleaning his incision. I was scared to hurt him, just like the first time I gave him a bath as a baby with that umbilical cord. Was the water too hot or were my hands not gentle enough? The first time I washed his incision I just cried. I generally try to maintain myself with I am with him but I just couldn’t. Nathaniel asked me why I was crying. I could only reply by saying “my job as your mommy is to protect you son, and I just don’t know how to protect you from this.” I assured him I was going to do my best to figure it all out and I just said I’m sorry that he had to know what cancer is when I just want him to be a kid. He just hugged me and kissed me and said “it’s ok”. I fell apart even more because I wanted to say “it’s not ok”, but instead I just hugged him and kissed him back and told him we would figure out this stupid cancer thing so we can get on with our lives. Oh the pain I feel is unimaginable! But so is his strength.

At this time, it’s unclear what treatment path Nathaniel will take. According to the oncologists, this is such a rare occurrence that some research is required as to how he should be treated. Radiation is the only thing they are certain about at this point. We meet with the oncologist next Wednesday. I will post an update after that. Until then, please keep our son and family in your prayers as we once again take this journey with Nathaniel that we hope will lead us to a healthy, vibrant, cancer free life.

I thank each and every one of you for joining us through our son’s journey and offering the love and support you have to lighten the load. Blessings and gratitude to you all.