Back on the Rollercoaster

 My daughter’s tumor regrew…

…after 3 ½ years…

…when her lead oncologist just left the hospital…

…and in the middle of a global pandemic.

Sometimes things aren’t ideal. Sometimes life isn’t what you imagined or what you wanted. Sometimes it just sucks.

Today is the day we expect to get results from her latest testing to help guide our next steps. I’m sure I’ll write more later about those next steps but for now, I wanted to write about the right now. We’ve always been really open about this journey and I want to be open about the journey 2.0.

There are a lot of weird emotions and thoughts that come with going back into treatment. See, the first time around, you are terrified because you don’t know what is coming, but the second time you are terrified because you do. The first time, you don’t know how lonely it will feel but the second time you know that you will have a new tribe to fill the void of those who will bow out. The first time, you cling to your faith and the second time, you grip that faith just a little tighter.

They say ignorance is bliss and it’s so true. On October 1, 2014, if you had told me that the next day our baby girl would be in the operating room for a 15-hour brain surgery, I wouldn’t have been able to handle that. If you had told me that when I left my house that day to drive 6 hours North that I wouldn’t come home again for months, I wouldn’t have been able to handle that either. If we had been told on March 13^th that we would miss the rest of the school year and would return to school on the computer in the Fall, none of us would have been able to handle that. So right now, as I have no idea what the upcoming weeks, months, and years of treatment might look like, I know that I can’t handle that knowledge.

When Tillery was first diagnosed in 2014, so many people rallied around us in support. Within a few months, only a few people were still checking in on us. The road of childhood cancer is hard and heavy and unless you have to walk it, it’s really difficult to opt-in to walk it along with someone else. Many of the people who jumped in with us then and have jumped back in with us now are those who have walked it themselves. For many of those close to us, returning to this journey is reminding you of how hard and heavy it was to follow along before and we know that’s why we haven’t heard from you. It’s ok. The hospital is a hard place to be and it’s even harder to choose to be there.  

Even with as hard as it was, I’ve often said that our days in the hospital were the times that I felt closest to Christ.  Those days of desperation with no answers, no understanding, and no way to see the future, I was in a close relationship with Jesus as I pleaded with Him daily. There was NOTHING I could do on my own and I had to give up control and turn it all over to Him. In the years since those days, I’ve gone through periods of falling out of my faith routine. Sometimes I’ve tried to take the reigns and be in control of what’s happening. Sometimes I’ve tried to just find my own answers. Since hearing the news that Tillery’s tumor has grown, I’ve been in a better routine of prayer and reading Scripture. God always finds a way to take what you are in and work it for good and I know He is working for us right now.

I’m not sure what is to come in the next few days and weeks. I’m not even sure about in the next few hours when we expect to hear from Tillery’s medical team. What I do know is that we have known that this time may come and we have done all we could to stay in this world. We have all the resources we didn’t have 6 years ago and we have faith in our chosen medical team and our Savior to guide us through this.

We can’t promise it will always be fun or cute but you know it will always be honest and true. We will share our hearts and our journey and allow you to join us as much as you would like. In many ways, it’s a little easier now. In other ways, it’s much, much harder. Again, I’m grieving the kids we lost during our first round, as I know those friends won’t be at the hospital with us this time. I’m also grieving all the new parents we will meet at clinic as we remember how widespread this childhood cancer world really is. I’m glad to know of so many great organizations for support but sad that while we’ve poured into these organizations to help others, now we are back at that place again, ourselves.

It’s still a rollercoaster. We never got off it, but the ride got pretty lame for awhile. Here’s hoping that we remember that even when we go on a downward spiral or an uphill climb, there will also be times when we straighten out and catch our breath. We might not get off the ride but we’ve ridden it before and so we can anticipate the unknown. Buckle up, here we go again.