"What a difference a year makes", people say from time to time. We constantly reflect on that very statement. After living a full 12 months in crisis, this current 12 month cycle of a year has us regularly flashing back to where we were at this time, one year ago. It can be difficult to remember, but also so rewarding to witness the sharp contrast in JR today. Full of life, health, and hair! The one thing that hasn't changed is JR's sweet and joyful demeanor, and radiant grin.
One year ago today we were in Philadelphia, and we never imagined we'd be back, under remarkably different circumstances, one year later. During the majority of JR's year of treatment, we didn't think much about the future, it was far too frightening. At this time last year, JR was alternating weeks admitted to CHOP for intense rounds of chemo, and weeks at the Ronald McDonald House. With radiation therapy under anesthesia, every morning, 7am sharp, 28 days. It was the most brutal and grueling leg of the battle. And John Ryan was just 10 months old when we arrived. It was a Thanksgiving miracle that JR was discharged from the hospital -I believe on Thanksgiving Day, his counts recovered just in time to be with family for the holiday and JR's first birthday the next day. I remember how filled with gratitude we were that Thanksgiving weekend.
JR visits the ophthalmology clinic at CHOP regularly, to address issues with eye infection and vision. After several visits over the past three months, the doctors seem to have gotten his infections under control, and JR is now on a regimen of over-the-counter eye drops three times per day, and prescription eye gel before bedtime. This is the least amount of medication this child has been on since he was 6 months old! At this time, JR's vision seems to be normal, truly remarkable as the entire region endured 28 rounds of radiation therapy. JR will continue to be closely monitored by opthalmology as he is at risk for a host of issues. But for now, all is very well.
JR has visited the oncology clinic monthly for checkups and his hour-long pentamidine infusion. The pentamidine helps protect his weakened immune system, and he has completed 5 out of 6 post-treatment rounds. I never thought I'd miss JR's port, but each month when three plus nurses hold him down and attempt to access the tiny vein in my toddler's hand for this IV infusion, I LONG for the port! It has been so brutal, resulting in a lot of (literal) blood, sweat and tears for us both -well, only JR bleeds, and I just wish desperately to trade places with him. It's pretty awful. I'm so thankful that there is only one round to go! After 6 months, JR's immune system will remain weak, but not at a dangerous point to where pentam is still needed. It will be a full 12 months before JR's immune system functions normally.
So speaking of six months... JR is approaching 6 months cancer free! While this is an exciting milestone, we have to get through scans before we can celebrate. JR's MRI and CT scans are scheduled for December 3rd. Prayerfully we will get results by the end of the day, as we did at 3 months, since he is scheduled early (7:30am). Please, we ask for your prayers in the weeks leading up to his next scans, and especially on scan day. It is such a hard time for us as we fight off our fears of the cancer coming back. JR is most at risk for recurrence of the (original) cancer in the first few years after treatment. If any live cancer cell escaped treatment, there will be a recurrence of the cancer, it just may take a while for it to grow to the point where it can be detected. This is a very real, and terrifying fear that we have to face every three months for the next five years. Thanks for lifting us up in prayer and positivity.
We are so very happy. But at times it feels like a vulnerable happiness as we know that everything we cherish can come crashing down in an instant, as it did on July 16, 2013. The dread and fear of the worst case scenario can be hard to push out of mind at times. Cancer has changed our perspective of life in various ways. On one hand I feel a loss of innocence, or perhaps naivety, an inability to live "care-free" and without a deep pain. I sometimes miss what it was like to be me before my baby was diagnosed with cancer. But on the other hand, I cherish what I do have in a way I wasn't before capable. The love and closeness I feel with my son and my husband is so powerful it's overwhelming. The intimacy I share with God is so real and so rich. The gratitude I have in small, "normal" moments brings me great joy. I wouldn't trade all of that in for the "old" me. It's an interesting dichotomy.
This holiday season will be a very special one for my family. We start with Thanksgiving and the celebration of JR's second year of life. It truly is an exciting time in the life of our family, with so much to be grateful for, and so much to LOVE and CHERISH. We wish you a wonderful Thanksgiving season and thank you for the blessing of your love and support.
JR has been busy being a toddler: