Hello friends! Now that we have met with all of our doctors I can provide you with the latest update.
Nick had an MRI Oct. 2nd. It took an entire month to schedule and came right down to the wire since we had already made plans to travel to Duke a few days later. Looking back, I know that the stress involved in scheduling this – calling over a dozen times during prep periods or while waiting in the car to pick up this child or that, leaving messages, missing calls… – all of that was part of Satan’s plan to rob us of our joy.
Spiritual warfare is REAL y’all! Sometimes it takes a more subtle form – like the scheduling of the MRI, hence why I didn’t initially recognize it. Other times it’s very overt. When you train your eyes to see it, it’s impossible to NOT see it.
Things become very tense leading up to every MRI. In recent months it has definitely felt like we are living from one to the next. We had high hopes of great gains in motor function and speech. As it turns out, we realize (barring a miracle) that there won’t be any “WOW!” kind of improvements. Instead, any gains he make will be very slow and steady. But you guys – it’s HARD to be the tortoise! Those “what ifs” start to creep in. Usually I do a pretty decent job of dismissing them. Fear is not of God and has NO place in my life. I have to make a conscious decision to TRUST in the One who first loved us. And it’s not a one time deal. It’s constant – every day, multiple times a day.
But this MRI felt different. The weight of what was to come was crushing me. Physically I could feel it. I was becoming restless and not sleeping well. We were all becoming short with one another. The fear was starting to take over. We had our annual staff retreat at the Motherhouse of the Dominican Sisters of Mary, Mother of the Eucharist. They are INCREDIBLE! They are the Sisters that run my school, my colleagues, my friends, my extended family. I look forward to this day every year. It was Oct. 1st. I was struggling to hold in the emotion for days. And as is common, the waterworks just start flowing as soon as I take a minute in silence to just be with God. Praise God for the Sacrament of Reconciliation! Satan was attacking me here too.
If you’ve every done the personality tests you know what it means to be melancholic. Every single test I take, I get the same results. Basically I’m almost entirely Eeyore by temperament. This means, among other things, that I very acutely sense my own faults. I know exactly who I am. So I’m more prone to scrupulosity – I’m not doing enough, I should be doing more, I’m a failure, and on and on and on. When it comes to Confession, I can’t just go at the drop of a hat. I WANT to, but I feel like I need adequate time to prepare – more appropriately, adequate time to come to terms with my failings. So Satan was feeding me the lie that I am not enough. I am not good enough. My prayer time is not what I want it to be, but I know that life is not what I want it to be either. We have Mass daily at school, which is a total game changer. I am grateful. But right now, with the demands of caring for my family & my students, I know it’s unrealistic to expect that I can sit for hours in adoration, attend pro-life rallies, participate in processions and conferences, Bible studies…. All things that I WANT to do. But I have to stay focused on what God is calling ME to right NOW. And that is to be present to the people that mean the most to me. That is my primary vocation. I try to use the ordinary moments of my day to talk to God. Internal conversations with Him as I fight back fear and tears roll down my face as I stare into a sink full of dishes, or as my eyes droop as I sit in the hallway folding laundry. Right now it’s like a conversation on Voxer. I tell Him what I need help with and go about the doing of the day. Then unexpectedly He’ll show up in little things that show me He’s always there, I’m not alone & He’s got this.
I honestly don’t know how much of a confession it was vs a total unloading of all the emotion. But God love the priest. He was patient, loving, empathetic, encouraging. Confession was just what I needed to get through the next few days.
October 2nd. The feast of the Guardian Angels. Sarah’s birthday. This MRI was different. Sarah came into this world under the weighty umbrella of a “brain tumor.” She has lived her whole life helping us carry this cross. IF we got bad news, I knew I couldn’t ruin her birthday, but I worried that I wasn’t going to be able to hold it in. She would know. Instinctively she would know. I just couldn’t bear the thought of crushing my sweet baby girl.
The MRI was scheduled for the morning while I was still teaching. A dear friend got Nick there and waited with him until I arrived, just as the door opened and they called us back for the results. I just kept praying. I looked at Nick and said, “Whatever happens, we can do this.” I knew he was feeling it too.
And then the doctor opened the images and compared this one from the last. It looked pretty much the same. Praise God there were no new areas of concern! There may be one tiny spot of increased enhancement in one very small section. But nothing of concern. And here we were – living in the gray once again.
It was a strange mix of relief and in some way disappointment. Leading up to an MRI there are only ever two scenarios that enter into our consideration. Either, “YOU’RE HEALED!” or, “It’s time.” We never prepare ourselves for more ambiguity. Any feeling of disappointment is truly bizarre, given that half of your black & white options are undesirable! But there’s something about living in ambiguity – the lack of actionable items – that makes it much harder than living in the black & white. We get tired of, “We could do this, or this, or this, but really there’s nothing to suggest one course is better than the other…” UGHHHH! But this time I praised God for living in the gray. Because gray matters. Gray means we’ve been gifted with more time. Gray means that we could celebrate the gift of another year with our gorgeous girl. Gray means there are more volleyball games to attend, more Cub Scout activities to participate in, more family movie nights. Gray means that we can approach the holidays with joy rather than dread. Gray means there is more time to carry this cross, to be purified by it and to grow in holiness because of it. Gray means there’s still HOPE! There’s always hope! Living in the gray is not easy, as I’m sure many of you can relate. But it can be glorious if we continue to surrender and allow God to work. That’s what we’re trying to do these days.
So as we enter this next phase of gray, we praise God that the tumor seems to be dormant. We have decided to go back to regularly scheduled infusions of Avastin. This happens once every three weeks. After the biopsy in March, there was great hope that Avastin would provide a WOW moment. However, if that were to happen it would have happened months ago. It didn’t appear to be providing any benefit to Nick, and so we decided to pause infusions in late August. This drug takes about 3 weeks to work its way out of your system. Throughout the month of September we noticed a significant decline in speech and cognitive function. The benefits Avastin was providing did not become clear until after we came off of it. Our doctor at Duke explained it as maintenance – similar to insulin for diabetics. It will allow Nick to live with some degree of normalcy. He had the first infusion yesterday afternoon, and we are hopeful that his speech and cognitive function will return to the level prior to pausing treatment. The only risk of long term use is the potential for high blood pressure and accompanying issues, but since he will be constantly monitored it’s not much of a concern. It’s unlike Grandpa who refuses to go to the doctor and lives with untreated high blood pressure.
Therapy is also key. We are continuing aquatic therapy once a week, paying out of pocket. We are also evaluating local indoor pools so that we can purchase a membership and keep up with the at home therapy plans. If we stop therapy we lose all progress! And Nick most definitely wants to keep walking! We are also on the hunt for the best speech therapist who can work with both the expressive and receptive aphasia he is dealing with.
Please keep up the prayers, because without them we could not function! We are so grateful for all of you.
Jesus, we Trust in You!