We’ve gotten many questions about how we discovered this tumor so I thought I’d tell the story from the beginning. This is a window into how we discovered Zach’s condition, interacted with physicians and came to the surgery on Monday, May 23rd, 2011. In a future posting we’ll talk about moving forward post surgery–how his prosthesis will work as well as ongoing oncology management.
Warning: this one is a little long. Read what you want. Also, thanks for the positive feedback about our updates. This has been a help for us to be writing and sharing in our journey.
On Tuesday, May 3rd as I was burping Zach on my shoulder I was looking at him in that sweet “mommy-looking-over-at-her-baby-as-she-burps-him” kind of way. It’s one of my favorite views of my babies—their little heads either resting on my shoulder, looking up adoringly at their human source of happiness and contentment, or else their heads bopping up and down as they strengthen their little necks, trying to hold their head up and look around…and I was looking at his eyes. I noticed that it really seemed like I could see not only my reflection in his eyes but almost that I could see into his eye—like to the back of his eyeball. But it was only in certain light at a certain angle. In some angles I could see the pupil and in others I couldn’t. But then I thought maybe I was just seeing things. I kept watching him intently that day and the next, asking people I saw if his eye looked different to them or if I was just seeing things. Wednesday night I told Tim I was concerned. He looked and agreed.
The next morning I made an appointment with our pediatrician for the upcoming Tuesday and an appointment at Kellogg Eye Center in Brighton for June 6 (the soonest they could get me in at the time.) The pediatrician visit was a six-week well-baby check as well as for his eye. When she looked she said he had no red reflex in that eye and that we should get into Kellogg as soon as possible and to tell them he had no red reflex.
When I got home, Tim did some preliminary research online on “absent red reflex.” In that search we learned that having no red reflex is a symptom of numerous conditions, which is why you need to be seen by a specialist – to determine what is causing it. So we called Kellogg back, telling them to let the doctor know Zach’s age and that he had no red reflex and it was a matter of some urgency. Our ophthalmology appointment was immediately moved up to just one week later— Thursday, May 19th.
In the meantime we learned that among the conditions it could be were cataracts, cancer (retinoblastoma), detached retina etc. So those very words entered our minds as distinct possibilities for what could be wrong with Zach. We prayed against the worst ones, obviously! And then we began the waiting game… 🙂
Thursday, May 19th finally came. The morning took us dress shopping for the girls for a Bat Mitzvah we had for my cousin coming on Sunday night. Then came the 1:00 PM eye appointment for Zach at Kellogg in Brighton with Dr. Gappy. Tim met me there (I had Bekah and Ellie with me also) and they dilated his eyes. We waited the 30 minutes or so and then Dr. Gappy examined him. He told us Zach had a detached retina but there were a number of things that could cause a detached retina.
While I was writing this part of the message, Tim simultaneously discovered right here next to me that May 8-15 is Retinoblastoma Awareness Week! How weird is that??? Our discovery and diagnosis happened on either side of this week.
Okay, back to the story…
Dr. Gappy told us he wanted us to go immediately to Ann Arbor where they could do an ultrasound on his eye to see what was causing the detachment and listed a tumor as among the possibilities. Concerned and feeling the urgency, we made a bunch of phone calls and texts, trying to arranged for our kids to get picked up from school – Tim’s parents were able to come and take care of them, and we headed over to Ann Arbor for the emergency appointment.
I’ll never forget that moment walking to the exam room in Kellogg. As I left the waiting room and walked through the doors toward the exam room, there at the end of the hall were at least half a dozen doctors and interns in white lab coats standing in a semi circle waiting for us. The doctor directed us to the room they were standing near. That image remains etched in my mind. I think I knew something big was going to happen at that moment.
The first ones to look at Zach were two Fellows, followed by Dr. Archer. Within two minutes of looking with the main light that they shine in his eyes and the lens, and also the big contraption thy put on their head, he told us Zach had a malignant tumor in that left eye. It was called retinoblastoma. He brought in the pediatric oncologist, Dr. Demirci, and had him look. Dr. Demirci went for the headset, but Dr. Archer informed him that he wouldn’t even need to put on the head contraption to see it. He then proceeded to explain what it was, and what our treatment options were. It was very “whirlwind-ish.” Our heads were spinning. I remember thinking things like, “Malignant. that means cancer right?” and rushing through my internal dictionary of words like benign, malignant, tumor, cancer, making sure I was correctly understanding him, and more:
“is he seriously telling me the best option is to remove my son’s eye??? I just walked in this room 10 minutes ago! You tell me my son has a cancerous tumor in his eight week old eye and then you just move right on to talking about prognosis? Can you pause for a millisecond and ask me if I’m ok? Can I breathe? Maybe we’re just supposed to take this like we’re having a cup of coffee over the morning newspaper. Seriously???”
Thoughts like that were spinning around even as I listened to him inform us what we needed to do—and to do so as soon as possible. The doctor spoke matter of factly, not unkindly, but not particularly sensitively. And I’m thinking,
“wait, where’s the ultrasound? Aren’t we supposed to do an ultrasound? How are YOU so sure this is a tumor? Are all tumors in the eye cancer?”
The answers to those questions were confirmed. We did see the tumor in the ultrasound, and quickly came to realize that this tumor was so large that what we saw when we looked at him, thinking it was the back of his eye, was in fact the tumor – totally visible to the naked eye. And we discovered that tumors like this in the eye are always malignant.
The news began to hit me emotionally in the quiet after the doctors left the room. It was now me and Zach and Tim and our stroller, diaper bag, my computer bag (you never know how long you’ll have to wait in doctor’s offices!), my coffee, water bottle… I held Zach and began to cry. I couldn’t believe it. This sweet, beautiful little baby boy God had just given us has this thing growing in his eye that he can’t see through. When he looks at me, all he sees through that eye are shadows at best. Funny how it since he moved it so readily it seemed like he totally was seeing things! Tears streamed gently from my face as I took him in with both my eyes, I thought about the loss, almost as if I’d lost him. We’d only just gotten there, we’d only just left Brighton, it had only been a few minutes…this news shouldn’t be ours…it was just surreal.
And yet I didn’t feel hysterical and confused. Somehow God enabled me to have enough composure to walk through all the next steps with clarity and a sort of matter of fact-ness that really was probably necessary. We made the appointments for surgery on Monday and left, discussing how we’d tell the girls, pouring our broken hearts out to God, asking him to be glorified in all the things that would come to pass and praying, through our tears, for a miracle.
On the drive home I called a friend of ours whose daughter (friends with my oldest) has a prosthetic eye and I told her about our most recent news. She proceeded to tell me that that was precisely what had happened with her daughter and immediately entered into our experience with such compassion and encouragement I couldn’t help but give God glory as I thought about the odds that we’d know a young girl with a prosthetic eye who had had RB! More than that, with only around 10 cases of RB in MI per year, it was helpful to learn that Dr. Archer was her current doctor! She told us Dr. Archer was one of the top specialists in the country and we were working with the best!
From there it was a whirlwind of phone calls, emotions, logistics, prayer gatherings, constant prayers, tears, emails, research, talking with different doctors, seeking second and third opinions, asking God for healing, and trying alternative measures in the three days we had till surgery.
We prayed for wisdom—and God answered with the ability to reach 8 specialists in less than four days. We prayed for healing—the elders of our church came and prayer with us for Zach.
We even pursued a fast acting homeopathic cancer remedy that has been known to shrink tumors considerably within 24 hours! Those events and connections were invaluable even in just seeing God’s hand of providence at work – being able to connect with people who are rarely at their phone, :), finding new kindred spirits and alternative health counselors.
We came to Monday morning still hopeful that the first stage of surgery, the exam under anesthesia would reveal a miraculous healing. However, it did not happen. Dr. Archer came out to the waiting room where my parents, Tim’s parents, my sister Abby and brother Ben were gathered around and showed us the pictures of the MRI and the photos of his eyes. The tumor was 80% or more of his left eye. His sight could not be saved and the rapid growth of the tumor and it’s closeness to the optical nerve (being a port to the brain) made removing the eye the wisest measure to remove the cancer from his little body. We had prayed for wisdom and clarity and we felt both at that time. Knowing the risk of all other treatment options we chose his life over his eye.
And that, dear reader, brings us up to Update #1 in this blog…