Posted on 07/30/2015
Sometimes all you have left is prayer and faith. Sometimes you reach what seems to be the end of the road and yet you have faith that “something” will come along and change your circumstance. This update has been a long time coming, but to be honest, it’s taken me some time to process what is happening and the best course of action that will keep me in a place of optimism and sanity, and the continued belief that God is still watching over our family. My only request to anyone who has come into our lives is that you continue to pray for Nathaniel and our family, and my one special request for prayer is that we get him into an immunotherapy trial. I strongly believe immunotherapy is the one option that could save our son’s life, and I’m hanging on to that hope so tight, it’s all I can think about until we get the word that he has been selected to participate.
June scans revealed yet another tumor growing in Nathaniel’s brain. While it was obviously disheartening to all of us, there was one thing that I determined to be a “silver lining”. A couple of weeks prior to Nathaniel’s scans, I emailed Nathaniel’s oncologist with a heartfelt plea to help me find a way to get Nathaniel into an immunotherapy trial, as I’d spent a lot of time researching the benefits and successes. I made it clear I was not willing to give up until every single option before us is exhausted. As we reviewed Nathaniel’s scans and this new tumor, his oncologist told me at the time I had emailed him he was attending a conference where they were discussing immunotherapy on sarcomas (he has Osteosarcoma), and learned of a trial coming up in late August. At that moment, I felt as though we were given another chance to find a cure for Nathaniel’s cancer, and that God must have heard all of the prayers for Nathaniel that so many of you given. As we learned more about the trial, we were told that his tumor had to be treated in order to be eligible for the study. We then made plans to have him treated with radiosurgery. This occurred on July 17.
As I continued to request more details about the study, I received an email from his oncologist that made me feel as though the rug had been pulled out from underneath me. It turns out one of the other requirements was that he had to go 6 weeks without a recurrence before he’d be considered for the trial. At the time receiving his email, timing was such that it was already too late for him to be considered for the August trial but he mentioned there is another one mid-September. I worried we would be too late for one and too early for the other because the tumors have been coming back so quickly even after chemo and radiation. Completely broken hearted, all I could do was cry. I cried with so many emotions going through my body: fear, disappointment and defeat. How could this happen? How could he have not known about this requirement beforehand? I was completely frustrated because I truly was relying on his medical team to have those bases covered. After my crying session, I pulled my thoughts together in an email to his oncologist, essentially asking what our options are at this point, and made it very clear I wanted no stone unturned. I allowed myself some time to cool down, reviewed it again the next morning and just became mad all over again once I re-read my email, so I hit the send button. I’m sure he got my message loud and clear. We met with his oncologist two days later and went over what needed to happen in order for Nathaniel to be considered for the mid-September trial. It’s a lot to absorb, but I made certain that he understood completely that saving our son’s life is our highest priority and whatever needed to happen on our end we would make happen. I am sure I left no doubt that we were going to do everything and anything to get him in. The only thing out of my control at this point is keeping the cancer away for at least 6-8 weeks. We are doing all we can to stay positive and thankful that there is another option we can consider for Nathaniel. It will be a long road ahead, both scary and difficult with so much unknown. You’d think at this point, we would be acclimated to this kind of normal, but it’s not. Every option, every change, every tumor becomes more and more scary. It’s clear that cancer does not plan to leave our life any time soon, so all we have left is to change things up and try something that has never been tried before.
We would ask that everyone supporting our Nathaniel pray for one thing: For Nathaniel to get into this trial in September – that’s it. That’s all we want to ask for right now because I believe once that happens, the rest will fall into place.
There are days I wonder why this journey has had to be so difficult and trying and why my son has had to fight so hard for a normal life. I see the frustration in his eyes at times and I see that there are days he is truly just TIRED and can’t do one more thing asked of him. And yet, while we are all mentally and emotionally exhausted, we know that there is no way we’re going to give up now. We are so close to something I believe may be the answer to all of our prayers.
I will post an update as we get closer to his six week scans and I’m hoping part of that update will include some positive news. Thank you all for your continued support, love, and encouragement.