I've refrained from posting in these past few days, because a lot has been up in the air. I have found that it is easier updating everyone when there is a clear beginning, middle, and end to our story, but these past few days we were stuck in the middle. The direction we were headed relied on pathology reports that were still unclear, and advice from specialists we didn't have yet, so up until now I was hesitant to share.
Ever since we left the hospital, we have been waiting on a pathology report for Cohen’s tumor. Prior to surgery, were told that his tumor could be two different types: Ependymoma or Astrocytoma. We were told by our surgeon that these are considered “benign” tumors, which in my mind was wonderful news. Before surgery, I refrained from doing much research online about these tumors because I was only wanting information on a need-to-know basis, and in my mind all of Cohen’s tumor would be removed during surgery. However, as you know, 5% of the tumor in Cohen’s spinal cord remained after surgery, and suddenly the distinction between an Ependymoma and an Astrocystoma became an important one. The difference is: an Ependymoma can grow back, an Astrocytoma most likely does not. After Cohen’s surgery an Oncologist came to meet with us. I didn’t understand. Cohen’s tumor is “benign”, why do we need to meet an Oncologist? Well you see…….The thing about tumors in your spinal cord or brain is that it doesn’t really matter if it’s cancer or not. Suddenly those lines become blurred. It’s not supposed to BE THERE. & most treatments to get rid of it are the same ones used for cancers. The Oncologist told us that surgery had obviously proven risky for Cohen (because of how it affected sensory to his legs) and that if it were indeed an Ependymoma, it would likely grow back, and that he would advise for Cohen to have Radiation Therapy. That was a very hard day. The Pathologist at Mary Bridge favored that the tumor was an Ependymoma, but it was being sent to Harborview (to UW's pathology) for a finalized report. Knowing that the final Pathology report would greatly influence our next step, we anxiously waited for the results.
We were told that once the pathology reports came back that Cohen's "case" would be presented to something called "The Tumor Board." This board is made up of 30 (or so) top specialists in the NW from SCCA, UW, etc... that get together every Wednesday to discuss complex cases. It's the equivalent of getting 30 "second opinions". Ultimately the tumor board would either give me their recommendation or pros and cons for our different options. I have been thankful for this because sometimes I feel that I am receiving conflicting advice from Oncology & Neurosurgery. (I.e. Neurosurgery is anti-radiation while Oncology is pro-radiation) The Tumor Board is a way to get everyone on the same page.
Last Friday, growing tired of waiting for an answer from pathology, I started making some calls. The first person I got a hold of was our Neurosurgeon who flippantly said, "I saw the report and it is an Ependymoma. It isn't finalized yet, but that's what it is and we will be reviewing it at the Tumor Board on Wednesday." Although I had expected this answer, it hit me like a ton of bricks. I had held on to a shred of hope that somehow the preliminary report would be wrong and some how this would be the type of tumor that doesn't grow back and this would all go away. Feeling devastated and needing more information, I finally tracked down the Oncologist to talk to on Friday as well. He said that he had NOT seen a finalized report-nor could he get his hands on one (he figured because our neurosurgeon did the procedure that maybe someone had called him with results???) He had a hard time discussing it all with me without a report in front of him but said that he did think from what they had seen so far that it was an Ependymoma and went on to talk about collecting spinal fluid to check for cancer cells and radiation, etc... before I told him that was enough for today.
These past few days I have been wrapping my head around the fact that Cohen will most likely have radiation. After a couple of very dark, sad, angry days, I actually came to a place of peace with it after researching Proton Therapy at UW (which is what Cohen would receive) and realizing that we wouldn't have to be IN the hospital for those treatments. This type of radiation is the best kind available and is considered to be less harmful. I was thankful that this type of radiation existed within driving distance from us and accepted that if this was our next step, then that would be okay. I had so badly wanted all of this miraculously go away, but I thought of Churchill's quote, "When you are going through hell - keep going." It seemed to me that while I wish we could go AROUND this, we would have to go THROUGH it to get to the other side.
Then something changed. On Tuesday on my way to Cohen's first Physical Therapy appointment, I got a phone call. It was our Neurosurgeon. He said, "When I talked to you on Friday-I spoke too soon". He went on to say that he was actually told by Pathology that the tumor appears to be a Pilocytic Astrocytoma NOT an Ependymoma as originally believed. I was stunned. I had 100% wrapped my head around this being an Ependymoma and what that would likely mean for treatment. When the Oncologist spoke with us in the hospital, from what I had remembered, he said that if it were somehow an Astrocytoma- that no further treatment would be needed. This was potentially very good news, but I couldn't fully accept it. Jason and I felt that we could only believe this after it was presented to the Tumor Board. Although we wanted to believe it, we were waiting for the other shoe to drop. I was waiting to hear, "..but we need to do radiation anyway..." or ".....actually I spoke too soon again and it is an Ependymoma." We were too scared to be happy.
Today was the day of the Tumor Board meeting & this afternoon I received a phone call from our Oncologist. He led with "I have good news" & said that it was confirmed that Cohen's tumor is INDEED a "Juvenile Pilocytic Astrocytoma." He was initially skeptical just like we were because it was such a big change, but he said that the Pathologist who performed the tests on Cohen's tumor was at the Tumor Board and talked everyone through each test he did, and because of that there was NO DOUBT in his mind that this was in fact an Astrocytoma. Because I've referred to this Oncologist as "Dr. Doom"- when he says he is optimistic, I believe him. Due to the tumor being an Astrocytoma, no further treatment is required at this time. As far as spinal & brain tumors are concerned this is the "best" one to have. It is the lowest grade of this type of tumor. But it is still something that must be monitored. We will have to continue to check for the possibility of growth and keep a close eye on him for any negative effects due to the bit of tumor still in his spinal cord. Next week we will meet with the Oncologist to set up a plan for monitoring Cohen's tumor. The Oncologist said "I don't get to give good news very often." I replied, "I know that. I hope this was a highlight of your day." He said, "This was a treat for me."
Although I felt a huge feeling of relief, there was no jumping up and down from either Jason or I. It's hard to explain. We have been through so much and "Cautious Optimism" would accurately explain our attitude on our best days. I know that in time, we will be able to settle into this new reality and appreciate this victory. But so much has happened, that it will take time for this to sink in and to put our trust into it. Although we do feel hopeful and happy, mainly we feel exhausted. This has been the biggest roller coaster of our lives. Suddenly our worst fear became our reality, and it's hard not continuing to be scared. We still fear for Cohen's future. We fear that his tumor will grow back, we fear for complications down the road with his back due to surgery, fear for his full recovery, and fear that this journey is still far from over.
Now our focus will go onto getting Cohen better. Getting him walking and moving and running like his old self. That will take time and patience, but I believe it will happen. We are also going to focus on the continued monitoring plan. Our journey isn't over, but I would like to think it's just made a turn for the better.
I keep saying I wasn't praying for a miracle. I had found so much to be thankful for and saw so many ways that we were being taken care of during this process. Our situation could have been so much worse. When others said they were praying for miracles, I didn't stop them, but I had given up wishing for one - especially when miracles weren't happening for so many others. But my first thought when I heard this news was, "This is a miracle."
I want to thank everyone who has been SO amazing throughout this process. Between sage wisdom, kind words, unexpected love and support, meals, and family and friends, we have felt so well taken care of during this time. It's been unreal. Thank you so much for everyone who has been by our side and continues to be by our side during this process. You have made more of a difference than you will ever know. We could not be more grateful to all of you.We love you.
Here is to the best news we've received in a long time, and to the hope of continued good news in the future.