Let me begin this entry with an air of gratitude. For whenever things seem difficult, I find that shifting my perspective to what I have to be grateful for is a powerful weapon against negativity of any kind. When I last wrote just two weeks ago, we had both surgery and scans ahead of us. In the days leading up to scans, fighting down fear becomes a moment by moment battle. Everything about scan/surgery day on the 17th was hard to endure, but when JR's oncologist rounded the corner and our eyes met in the waiting room, and she gave me a thumbs up and a smile, none of it mattered. That moment right there, the motion of her hand and expression on her face determined the direction of our lives. My baby is still cancer free. 16 months cancer free. It feels like a new lease on life every time. Layers and layers of anxiety just lift and I nearly collapse in relief. My son is not fighting for his life. We are not in the living hell that pediatric cancer treatment and life is. We have a precious and healthy baby girl. We have a home and my husband is able to provide for our family so I can be with our children. We are surrounded by family and community, near and far, who love us dearly. Yes, we are indeed blessed.
Blessed as we may be, we are going through a challenging time. JR recovered beautifully from his surgeries two weeks ago, and the surgeon did an excellent job with the reconstruction of JR's eyelids. However, while performing the surgeries, the ophthalmologist noticed what he believed to be a cataract on the lens of JR's eye. The cataract would better explain the sudden loss of vision JR experienced at the beginning of September than the lower eyelid problem (entropion). He referred us to a pediatric cataract specialist, for as soon as possible after recovery from the surgeries. That appointment was yesterday. JR has been to CHOP once per week for 3 weeks now, and he is growing wise to it. Not to mention he has a cold, and the appointment was a "fit in" at 12 noon. NOT a good time of day for my 2 children. Basically Charlotte screamed unless I was holding her. And JR screamed unless I was holding him. Hmm. I nearly screamed myself. JR was unwilling to cooperate and the specialist was not able to examine JR. However, with all of the information provided, he is confident that JR does have a cataract. We opted to proceed as if he has the cataract rather than try for another visit to confirm. Especially since this is considered rather urgent.
Here's why it's urgent:
Sight is a learned skill. You learn how to use your eyes to see from a very young age, but using both eyes when young, without interference, is critical. If you or I lost vision in an eye for a month and then had surgery to repair it, we would regain our vision right away, because we've used our eyes for so long. But for JR, his vision has been affected since the age of 10 months (when his radiation treatment began). With the development of the cataract a month ago, he lost a good deal of vision in the left eye (when I was freaking out because he couldn't see when patching). By now he likely has almost no (or no) vision in the eye at all. The first step is to remove the cataract so he has the ability to learn to see again. The lens of JR's eye will be replaced by an artificial plastic lens. Next we have to teach him to see again via patching -forcing him to use the left eye. When we go back to the patch as soon as JR is recovered from cataract surgery, he will not be able to see much, if at all. It will be very hard work to rebuild "functional" vision in the eye. JR will never have full vision in the eye, but it is our goal to get it as good as it can possibly be. The worst case scenario is that JR's vision is gone and will not come back after the surgery, despite patching and glasses. Stupid cancer.
When we left yesterday I was told we'd be contacted by the scheduler to set the surgery date. We heard today that the surgery will be Friday! So here we go again. Anesthesia. No food/drink on Friday until the surgery is complete and he wakes. The painful experience of restraining my baby in my lap while he fights the mask that puts him to sleep. Singing in his ear that he is safe and he is loved like a broken record until they take his limp body from my arms and I can break down myself. Leaving my baby alone in the OR. Watching him wake up fighting the drugs. Blood seeping from his swollen eye. Angry and scared, ripping at the IV in his hand, and the wires coming from his chest. Again holding him close and singing to him while he goes in and out of fitful sleep until the meds finally wear off and my boy comes back to me.
Please keep JR in your prayers and thoughts as we prepare to endure another surgery on Friday. Pray for his peace and his comfort. For his understanding that he is safe in the scary moments when he feels desperately out of control. While you're at it, pray those things for me too.
This is hard. But it's not cancer treatment hard. I remember that my family has been through far worse. The Lord sustained me then, and He will sustain me now.
Teach my song to rise to You
When temptation comes my way
And when I cannot stand I'll fall on You
Jesus, You're my hope and stay