Friends & Family,
First, we both want to thank you all for bearing with us while we have waited for various appointments and conversations to happen hoping that we would gain further clarity on Stephen’s diagnosis. As of today we do have more information that we want to update you all with as well as some big life changes that are coming for us.
After our last email update I worked to get on the phone with the neurosurgeon’s nurse who we had been communicating with to try to gain some clarity on whether the tumor actually was cancerous or not. In our first conversation she affirmed that the tumor was noted as a grade 2 out of 3 and that they would call it malignant in reference to it being more aggressive. I had always thought cancer was a black and white thing — you either have it or you don’t. There aren’t supposed to be gray areas with it. But the longer we spoke it became clear that his tumor seemed to fall into this weird gray area. She was struggling with how to communicate about it to us so she decided to send the pathology to some of her contacts for them to look it over and said she would call me back a few days later. We spoke again later that week and she stated that the pathologists she sent it to affirmed that it is grade 2 and they would call it malignant. She also said she did some more research on his specific type of tumor and recognized that it could spread so she wanted to refer us to a neuro oncologist for further counsel. She apologized for not doing so sooner and also for misreading the report initially and telling us that it was grade 2 OR 3, 3 being much more serious, rather than grade 2 OF 3.
Later that same week we were having dinner at a neighbors house and some of their family members were present. They’re all involved in the medical field in various ways (almost everyone is around here) and when we went on to describe Stephen’s tumor type and grade, one of the guests (who is a PC physician) stated that the tumor was “pre-cancerous”. Immediately upon hearing that term I felt like that made more sense for how to describe the gray area things seemed to be in of “malignant, but kind of not malignant”.
After all of these conversations, including the radiologist stating that he “wouldn’t call it cancerous”, we were still left feeling rather confused about what it was and what we needed to do moving forward. Our hope was that the appointment with the neuro oncologist would lead to further clarity and that we could get some more questions answered.
We had the neuro oncology appointment this past Wednesday the 21st. At the appointment we described the varying perspectives we had received on the tumor and that we were seeking more clarity. As she read through the pathology report with us she highlighted a few statements in it and told us how she would interpret the information given. She specifically pointed out one line and stated how it would mean the tumor was not very aggressive. This bit of information was in contrast once again to what we had been told by the nurse and other pathologist. She stated she wanted to bring Stephen’s case before the tumor board that was meeting on Thursday and see if they could give us a more solid answer. She also encouraged us getting a second opinion at any of the top hospitals for neuro oncology.
We received a call today with a report back from the tumor board. She said the pathologist that initially reviewed his report once it came back from Mayo Clinic was present as well as many other Drs/oncologists, etc. Their conclusion was that the tumor was actually more between a grade 1 and grade 2 — that if there was a grade 1.5 that’s what it would be. Grade 1 is benign and non aggressive, grade 3 is malignant and aggressive, grade 2 is sometimes malignant and sometimes benign. She said that they concluded that it is benign and that no further treatment is needed at this time but to continue monitoring for any signs of re-growth with regular imaging. The tumor has now gone from possibly grade 3 and cancerous to almost grade 1 and not cancerous. To say we feel some whiplash might be an understatement.
In the midst of the confusion, we have had to make some difficult decisions about where we need to be for Stephen to best heal and receive the care that is needed. We had been making plans for what our fall was going to look like here in OK until we received the call that the tumor was malignant. When we heard that news it felt as though there was no way we were going to be able to continue on with life as normal and do the things we had planned to further put down roots here. It was becoming clear that Stephen needed time and space to rest and heal. We knew that was not going to be possible with the increased work load in the fall. I also was planning on launching a photography business here and that was going to take much time and effort that now would need to directed at helping Stephen with diet and lifestyle changes to cope with the diagnosis and possible future treatment. We also felt a growing need to be near his family for the support and help with the boys. Our neighbors have truly been amazing and have helped in so many ways, but we knew we would need more than we could expect them to give with childcare and such.
After much prayer and deliberation, we made the difficult decision to put our home on the market and to plan on returning to IL to be near Stephen’s family and other community. We have been working overtime getting the house ready these past weeks. It went live on the market one week ago (Friday the 16th) and went under contract on Sunday the 18th. The closing is set for October 7th — two weeks from today. It has definitely been quite a whirlwind of change and we are working on packing and preparing for the move while also trying to mentally/emotionally adjust to the fact that we are moving again and leaving another home we thought we would be in for many many years to come.
We know that God has a bigger plan in all of these things. We would not have ended up listing our house and deciding to move back without the cancer diagnosis. The fact that it may not have even been an accurate diagnosis is something we are marveling at. While we don’t know all of why we are supposed to be back in IL again and so soon, we trust that God has a purpose and is directing all of these things to lead and guide us where He wants us to be. Interestingly, one of the top recommendations for where we should go to get a second opinion was Northwestern in Chicago. The oncologist was raving about the Drs there saying they are some of the best in the world for neuro oncology; that we would be seeing some famous Drs (she was fan girling a bit). It is amazing that we will be right where we need to be once again for Stephen to receive the best care possible moving forward.
We appreciate your continued prayers!
— for our hearts and emotions as we say goodbye to another neighborhood we have fallen in love with and the boys say goodbye to all their neighborhood friends
—for Stephen as he transitions out of work and into a season of rest. That he would not feel like a failure or less than for not working in this next season and that the Lord would accomplish the work He desires to do in Stephen’s heart during this time
—That the details of moving would come together — including someone to drive our moving truck to IL as Stephen cannot do so with his eye still healing
Thank you for your love and support again. We love you all and look forward to seeing many of you in the coming weeks and months!
Laura (& Stephen)
P.S. We did do a follow up visit with the neuro ophthalmologist and he was thrilled with the healing that is taking place with Stephen’s eye and said he expects him to make a full recovery! We are praising God for such a good report and shed many happy tears together.
Thanks for the update, Laura! If you find yourself in a pinch without a driver let me know, I might be able to swing it. And I related to much of what you shared. God calls some strange plays sometimes—or they can seem strange to us, at least. God’s grace to you guys to run the play well. And may the dots connect someday for His glory and the strengthening of our faith!
Thanks for the update. We love and pray God's blessings on you.