Posted on 09/09/2015
I want to take a moment to thank all of you who continue to pray for our son and our family. I wish I had better news to report and I wish I were writing with some level of optimism that we were just two weeks closer to reaching our goal. Unfortunately, just one month after Nathaniel’s last surgery, we are once again faced with another tumor growing in his brain. It’s like a bad dream you just can’t wake up from no matter how hard you try. Up until a weeks ago, Nathaniel was feeling great! He was actually going to school and doing his best to live a normal life, which many 4th graders take for granted, as they should. A few days prior to his MRI, there was haunting evidence that things may not be good: he began to experience a loss of appetite, and then, the ever dreaded headache. Any time he complains of those things, I feel that pain in my gutt that leads me to the place of tumors and surgery and no hope of a cure. Even though I prayed and prayed that his results would be good and wishing that I would be told I was just being a worry wart, there is a part of me that will always be waiting for the other shoe to drop. More times than not, that shoe drops, that bubble bursts, and my heart breaks more, even when I think it isn’t possible. I have spent numerous hours researching the great number of methods used to treat osteosarcoma and treating brain tumors. Unfortunately, what I’ve come to learn are there are more roadblocks to Nathaniel’s recovery than I would have ever thought possible. Either what I have found is only available to adults, due to lack of trials done on children, or the treatment plans are designed to treat brain cancer vs. bone cancer. I understand Nathaniel’s cancer is a bone cancer that has spread to the brain but what I don’t quite understand is the difference, why medication is not beneficial for him that’s used to treat brain cancer. A tumor in the brain is a tumor in the brain. It might sound elementary to think along those lines but sometimes you come to a point where you wonder why it all has to be so complicated.
I find myself growing incredibly impatient. My heart believes there is something available to him that could save his life but for whatever reason, it is not within our reach. This time, we were provided some options: another surgery to remove the tumor, followed by more radiation, followed by a medication designed to prevent new blood vessels from forming in the brain. While I am appreciative that we had choices, none of them were ideal. However, given how quickly Nathaniel has bounced back in the past, we decided along with Nathaniel, to move forward with the surgery. We knew the risks involved and that there might be a higher risk of infection or stroke due to the fact that he had the same surgery a little over a month earlier. We learned a big lesson today: History DOESN’T always repeat itself – well maybe only the bad stuff does, but the good stuff, not so much. Three hours into the 4 hour surgery, the surgeon appears before us to tell us that there was an excessive amount of bleeding in the brain, he wasn’t sure if he’d hit an artery, blood vessel, it wasn’t clear, but one minute Nathaniel was stable, the next, massive bleeding. He couldn’t remove the tumor because he felt it was too dangerous to do so. Instead he worked on getting the bleeding to stop. What he determined is that it was the actual tumor that was causing the bleeding and once he removed the bone flap and moved everything out of the way to begin removing the tumor, the tumor somehow “expanded” in his brain. How does that happen you ask? Well the short answer, NO IDEA, as this surgeon has NEVER had that happen before. All the rarities that the world has to offer and my son offers medical rarities to no end it seems. It’s rare for Osteosarcoma to travel to the brain, only a handful of cases in the world, and turns out for the surgeons polled here, no one has ever experienced what happened to Nathaniel today. Why is that? Why can’t the rare, unexplainable be, hmm, we went into his brain to remove a tumor that miraculously shrunk with no explanation, or it turns out the tumor was benign when we were certain it was malignant, you know, something along those lines would be a great rarity to celebrate right? No, not Nathaniel, he has to continue to stump the medical community with tumor riddles to be solved. The tumor has now expanded in his brain and is now bigger than it was before surgery, and he now not only has to heal, we have to worry about whether or not this serious impact to his brain has caused immobility in his body or brain damage. I realize my explanation of this may sound very matter of fact, but the truth is, I’m scared as hell of what the next few days will look like, and I am trying so hard not to melt away in heartache.
What does this mean? We don’t know. He’s heavily sedated right now and has had a very tough day. His brain has suffered severe trauma, and we have no idea what the impacts will be. It will take time for the swelling in his brain to go down. For now, he’s stable, and while he’s only woken up a few times, he has acknowledged us. He still has the breathing tube in his throat, but we are hopeful the tube can come out tomorrow. He has a drainage tube coming out of his brain to prevent the brain from swelling further.
DJ and I and our family and friends had our share of tears and scares today. We didn’t share the news with Lucas or Matthew today, we’ve decided to see how tomorrow goes, hoping tomorrow is a better day. We have such a great support system, I honestly don’t know how we could do any of this without the people who consistently provide support and love to us through this journey. My friends are my family because they have been here through the good times and the bad without any expectation. We are indeed blessed. One thing is unsettling: what I need is to see my baby boy alert and awake, and able to speak to me, so I know that my Nathaniel is back. I am begging for another opportunity to hear about the Lego he wants to buy once he leaves the hospital thanks to a gift card from a friend, and the Mario game he and his daddy pre-purchased before its release on Friday. And before he went into surgery, he said to me, “now Mom, don’t forget! Have my orange soda ready for me when I get out of surgery”. He’d already instructed his Dad to get him some “meat” when he is ready to eat because he knows he will be starving.
I am sitting here after this long day, journaling today’s heartwrenching series of events, sitting next to his orange Fanta, waiting for my baby to wake up and demand the drink he asked for before he went into surgery. It’s a little joke that after surgery, he is quite cranky with me thanks to the steroid medication he takes to help with the swelling. He is quite demanding with no filter, and under any other circumstance, he would be given a time out or consequence, but we’ve come to chalk it up to “it’s the meds”. The surgeon has joked with me that he purposely flips a “feisty with mom” switch when Nathaniel is back in surgery just to make life interesting for the 24-48 hours after surgery. Today, before surgery, I asked if he could leave that switch off, but I was only joking. What I wouldn’t give at this moment to have my crabby little post-op boy well on his way to recovery, with the hopes of returning home tomorrow. Unfortunately, this time, that will not happen. Tonight I will pray that tomorrow holds better news for my strong boy.
Please keep my family in our prayers while we continue to walk down this ever winding uphill road of constant challenge. While so many of our days have been filled with various obstacles, tonight I am thankful for a wonderful father to my sons, a husband who puts his family first and three amazing children who continue to teach all of us a great lesson about life: How to endure, how to focus, how to stay positive, and how to stand strong despite all odds. They continue to teach me, and I continue to learn because many days, when I want to give up and surrender, they remind me that there is so much more beauty to this life than we realize. Our experiences with cancer have been beyond heartbreaking, but we have also been blessed with just as many wonderful memories together as a family, and we have become stronger and wiser and closer through it all. Our hope is for a full recovery and we begin by taking this on, one day at a time. Until we know more, thank you for the continued prayers. We still need them and appreciate them more than you can imagine.