Posted on 08/10/2015
Where do I start? As I sat on the hospital bed while Nathaniel lays his head to rest last week, I wonder why my son was chosen for this journey. Had I known those first five years of his life would be the only normal we would experience, what would I have done differently? Would I have felt more blessed because he was healthy? Ok, I know now where I should start. The day after my last post. Nathaniel came to Children’s Hospital for his regularly scheduled lab visit. While it seemed a routine day, it turns out this day would change our lives more than we ever imagined. Cancer has certainly taken us on a roller coaster ride that seems to not know how to push on the brakes. July 30 certainly proved to be a day that did just that – stopped us dead in our tracks. After his July 17 radiation treatment, we discovered only 13 days later that a 5-6 cm tumor had already formed in his brain once again. The surgeon who reviewed his MRI results basically told us this was it – the end of the road. Given how aggressive his cancer had become it was clear there would be no cure for the cancer that continues to consume Nathaniel’s little 9 year old body. We were told we needed to prepare for his final days, as there is no chemo, no surgery and no radiation that can kill his cancer. We were told we literally had 1-2 weeks before the tumor would take over and cause extreme pain. It was determined that cancer had indeed won this battle. I can’t even begin to tell you how numb I still feel, merely 10 days after being told this news.
Just days earlier last week (Monday or Tues), Nathaniel began to complain of pain in his left arm and leg. Then, Wednesday evening and Thursday morning, he showed that he was having extreme difficulty in moving his left side. DJ took him to be seen and he was immediately scheduled for scans and an MRI. He’d just had radiation on July 17, so we all thought perhaps he was experiencing some swelling in his brain that was causing this new “weakness”. Turns out we all were wrong. It was a tumor on the right hand side of his brain that was causing extreme pressure, thereby “paralyzing” his left side. By Sunday, he was unable to use his left hand and leg. It was heartbreaking to watch my baby boy still plug along and build his legos with just one hand, only using his left to help push the legos together. It’s almost as though he refused to allow himself to be limited.
Back to the day we received the bad news. I honestly feel like we were sent home with our son to watch him die. They asked if we wanted to talk with the surgeon who might be able to provide him some temporary relief. My response: if he has only been given a couple of weeks left to live, why the hell would I want to spend half of that time at the hospital??? When we got home, we talked with Nathaniel and explained to him what the doctors said. Once he understood, he literally just started crying and said “I don’t want to leave!!!” Can you imagine what that felt like for us at that moment? Whether you are a parent or not, the thought alone of that conversation has to make you feel a great deal of sadness or pain. Trying to explain to our boys what was happening was so incredibly painful. My Lucas says to me “Mom, maybe the reason that the doctors said they can’t do anything to save Nathaniel is because there are so many people in this world who ask God for miracles, and he’s given them miracles, and now doesn’t have one to give to Nathaniel.” To hear my son rationalize and try to understand why this is happening is completely heart wrenching. I was so angry and sad and afraid.
Later that evening, Nathaniel’s nurse called and said she wasn’t real happy with the way the discussion went and felt that if his regular oncologist had been there, things might have been a little less chaotic. She also said she really wanted us to talk with the surgeon, who said he wanted to talk to us. We agreed to talk with him. He said he wasn’t sure how much of Nathaniel’s tumor could be removed, but it would definitely allow him more mobility on his left hand side. The worst that could happen is if he hit a blood vessel or nerve, he would be paralyzed. If we didn’t do anything, he’d be paralyzed anyway, so we decided to do the surgery – his THIRD brain surgery in the last 7 months!!
After I got over the shock of this recent revelation, I began calling every single cancer facility I didn’t receive a return call from in the past, or didn’t reach out to at some point during this journey. I was desperate for answers. Finally, I talked to St. Jude’s and they mentioned a 4 week no recurrence trial requirement. I was dumbfounded. The entire time I was having conversations about immunotherapy trials, I was told it was a 6 week no recurrence window, never 4. I immediately emailed Nathaniel’s oncologist and asked if we could find SOMETHING, anything that could keep a tumor at bay for 4 weeks, could he still be eligible for a trial. The answer was YES! Forget the fact that I was highly annoyed that this was the first I’d heard of FOUR weeks vs. SIX. A friend reached out to us to inform us about some alternative methods of cancer treatment that have been successful as of late, and I immediately began a crash course in learning more. Doctors have nothing left, so we have no choice but to try less traditional ways to fight cancer. Desperate times call for desperate measures, and any mother/father out there would do most anything to try and save their child’s life.
In my mind, this is how this will work out – at least this is how my heart wants it to work:
1) Nathaniel has a successful surgery and the surgeon says he was able to remove ALL of the tumor;
2) This alternative treatment is successful and we are able to keep another tumor from growing for at least 4 weeks;
3) Nathaniel is accepted into an immunotherapy trial and the quest to find a solution that allows his own body’s cells to fight off cancer cells begins;
4) We have a 9 year old son who will reach the age of double digits who will live a cancer free life.
I am asking all of Nathaniel’s prayer warriors to please send strength to Nathaniel and our family during this time and with the small bit of hope that we can still get him into an immunotherapy trial, that we reach that milestone.
Unfortunately, we are still having to travel two roads: one for survival and one for death. Can you imagine how difficult and emotionally trying that is? On one hand, we are putting the possibility of death at the back of our minds, yet we are learning how to begin dispensing morphine and injections should a seizure last more than 5 minutes, and learning that at some point, our son will be on so many pain medications to “keep him comfortable” that you realize at some point, it’s no longer your child, just his body. To say we are conflicted and confused is an understatement.
Our family is dealing with so many different emotions on a daily basis, and we continue to be blessed with wonderful friends and family who are providing meals and support wherever and whenever needed. We are so thankful for all that is good in our lives, but life has made it quite difficult to not focus on the difficult things. Keep us in prayer. We will have a two week scan scheduled some time next week to see where we are. We are of course, hoping for good news, and that will have us half way to our 4 week goal. Four weeks, who knew that such little time for most of us is the difference between life and death for our Nathaniel. He remains positive and is so happy that immediately after surgery, he was able to move his fingers and toes. And he’s built several LEGOS since his surgery. He’s certainly been through a lifetime of challenges during the past 3 years, but one thing remains – he continues to smile, and he continues to push himself so that life remains good for him. I feel like if God looks down and sees all that our son is capable of accomplishing, he will deem his life worth saving. I know so much is out of our control, but for now, help us pray. I cannot allow myself to do anything else without completely falling to pieces!