Let's see, it's September. It's Childhood Cancer Awareness month. I didn't expect it to be so painful. Last September JR had only just completed treatment. He was still receiving monthly treatments to keep his immune system up. Hair was just beginning to appear over his previously cue-ball smooth head. I felt lost as I returned to the world outside of childhood cancer treatment, and in a new city where nobody outside of our family knew us and our story. Last fall, childhood cancer was still our (very f-ed up) "normal". I didn't know how to "be", or what my place was. I couldn't separate myself from the trauma we'd been through.
But over the past year, tremendous healing took place. So much so that awareness month has brought harbored pain to the surface for Brandon and me. Raw memories have surfaced, and unwanted thoughts, fears and truths brought to mind. It has also brought the awareness that we aren't living in the nightmare anymore. The hellish year of living out each day watching our baby endure chemo and radiation and surgeries and hospitalization, and agonizing over the chances of his survival are behind us. But the fear of the cancer coming back can be debilitating if we aren't careful. This is what it's like every time scans come around -the painful past is brought to mind, and the fear of the worst case scenario tries to snake into our hearts and consume our minds. I grapple with feelings of not having the strength to ever go through it again. But then I realize that I would, for my son, I would. But I pray every single day that my family will never have to endure pain like that again.
So on top of it being awareness month, it is also scan month. Timely. For the first time, JR has gone four months since his last scan. (Year one =every 3 months, year 2= every 4 months, years 3-5 =every 6 months). So, my scanxiety has been CREEPING. Last week I discovered that there is this ball of anxiety hiding out somewhere within me, ready to unfurl and consume me at a moment's notice. JR has been patching his strong eye daily for about 4 months now, in effort to restore some vision in his left eye. Though he hates the patch, and fights tooth and nail every morning when we put it on him, he adjusts after about 15 minutes, and gets on very well with it. However, a week or so ago, JR suddenly was virtually unable to see from his left eye when patched. He was fearful and clinging to me, he was running into things, he couldn't find toys a few feet away from him, or my nose on my face. I was absolutely terrified. Sudden changes are big red flags, and I was right back to when JR was 7 months old and his eye suddenly began to drift in unusual directions. My fear was almost out of control. I called CHOP's opthalmology clinic relentlessly, sent them videos, couldn't sleep, and really was on this crazy anxiety train, like I haven't felt in quite some time. At times I could not reel it in. I lived many days like this during JR's treatment year, and battle it during scan times. However, this was the first time since JR completed treatment that something tangibly scary was happening. Opthalmology was fairly comforting -they didn't feel it was an ER level emergency, and we could come in on Tuesday after labor day when JR's doc was back in town. So I had to battle the anxiety demon for like 3 days, ugh.
Thank God, our ophthalmologist pretty much immediately diagnosed JR with entropion. It's a condition in which the lower eyelid is turning inward, causing JR's lashes to rub against his eye. It's very uncomfortable for JR, so our doc says JR has stopped using the eye to preserve his comfort. Thank God it does not appear to be cancer related, always our number one fear. It is a late effect of JR's radiation treatments, which have badly damaged the structures of his eye. It is our long-term goal to preserve John Ryan's vision in his eye, and it is very much a reality that he may lose vision entirely one day. Entropion requires a two-hour surgery to repair. The surgery will be added to his already scheduled 15 minute "eyelid lift" on this Thursday. JR will also have his 16 month, post-treatment scans. He will be under anesthesia for over three hours. Then we have an oncology clinic visit, alright! It is going to be a very VERY long day, but we will be coming home same day. JR will be swollen and uncomfortable, activities limited until Monday. With it being 4 months since JR's last scans, and this recent incident, I'm feeling a bit fearful, but trying to stay calm and confident.
In my prayers this week I am acknowledging daily that my life is not my own. Nor is John Ryan's life mine. God has a perfect plan for each of us, and we must submit to Him. He loves me and He loves my son, with a love we cannot comprehend, and I can trust Him fully and completely. Clearly, believing in these truths is very hard for most of us, but praying it helps build my faith and gives me comfort.
I want to thank you, our community and loved ones, for your support this month. Our team, "JR's Superstars" has grown to 33 team members (including 13 kiddos!) and raised nearly $4,000 for pediatric cancer research and survivorship programs at CHOP! Check out our fundraising page here: http://chop.donordrive.com/team/JR
We are so inspired and touched by your participation and giving. We are really bummed by the timing of JR's scans and surgeries, but we plan to be there on race day. It will be a "game-day" decision based on how JR is feeling, not even 48 hrs post-op. But we have been given the green light to go, since JR will be in stroller. Our family of 4 will be walking together this year. :)
When I look back over our past year in Philadelphia, I see how God has just abundantly blessed our family. We arrived in shattered condition, grasping for straws as we tried to build a new life in Philly. One year later and JR is thriving, nearly 16 months cancer free. We have been blessed with a daughter to cherish, and a home to call our own. We have built genuine friendships. Brandon has an awesome job. And we, as of last week, have finally found a church we are ready to commit to.
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. Jeremiah 29:11-13