Proverbs 3:5-6 “Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths.”
I really like a routine. I like a plan, I like an emergency exit in the back of my mind, I like knowing what is going on around me and I like planning for what is next. I like a routine so much that for as long as I can remember I have washed my face, my hair, and my body in the exact same order, every single shower. Now my goal here is not to label myself as having some obsessive tendencies, more of a goal to explain why I’m starting to have a hard time again.
I’m not saying this time has been easy. Austin and I have been through more trials in the past 6 months than we ever thought our marriage would withstand in 60 years. If you would have asked me on November 21 what day I was looking most forward to, I’m pretty sure my immediate answer would have been “Sloane’s last day of chemo.” I remember the feeling of holding her for two nights in a row in the hospital when her chemo was infusing and I just wanted it done. I stared at that iv pump like I could make it go faster. I remember the drive home from the hospital on the day she got diagnosed, I remember the next few days as a blur, summed up by crying, a lot of phone calls, and a little bit of sleep. And selfishly, I distinctly remember the feeling in my stomach that I just wouldn’t make it here, to this day, through all these doctor appointments, to now. I’m not saying I am not genuinely happy for Sloane to be done with chemo, but I’m also honestly terrified at what is next. We didn’t really go into this treatment with a clear cut plan for what to do after the systemic chemo finishes. It’s always been a ‘wait and see’ kind of thing, which as you can imagine is a very hard thing for me. And now it’s basicslly time for the ‘we’ll see when we get there part’ and it makes me so scared.
What we know our current plan consists of is this: a MRI tomorrow to obtain more tumor measurements and make sure there is no cancer growth to her brain. One more round of chemo April 19/20. An eye exam under anesthesia May 15 which will determine the next steps. We are hopeful the next steps will contain more “watching.” Our ophthalmologist said he would perform eye exams every 6-8 weeks for a while; these eye exams could just be for monitoring or they could include cryotherapy to the small peripheral tumors in right eye. What we also know is if the tumor shows regrowth or advancing cancer in the left eye, then the next step of treatment would be IAC (intraarterial chemo) or eye removal if necessary. These are things we will deal with if necessary, but we have chosen not to dive too deep into them until the time comes. We know Sloane is in a high risk period for the next 3-5 years for tumor regrowth. Because of her RB1 gene mutation she will be watched closely with MRI’s every 6-12 months. Her ophthalmologist will see her very frequently. Other than that, we are putting our faith in God and trusting him to guide us.
“Your love never fails, it never gives up.”
This has been a very humbling experience, one I hope I never have to travel again, but one that has indeed changed my life, one that has been totally paved by prayer. I may be a little bit more jaded, a little bit more anxious, a little bit more obsessive, but I’m also a little bit more trusting, my faith is a lot stronger, my marriage is rock strong, and my family is closer than ever. I am continuously in awe of the power of prayer.
For now, please pray for Sloane, please pray she rocks out the next few weeks and finishes her last round of chemo stronger than ever. Please pray for her MRI tomorrow, for a clean scan with no surprises.
St. Lucy, pray for us.
Blessed Father Solanus Casey, pray for us.
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