A few weeks ago we finally got the results of Willa’s genetic testing. She has tested positive for the RB1 germinal (or germ line) gene mutation.
For most, this doesn’t mean anything but some words that sound like something taken from a MARVEL comic. I wish! I wish it meant Willa gained some crazy superhuman power that gave her the ability to lift cars with a finger or burn through walls with her eyes.
I’ll try to explain:
Our genes, made up of DNA, act as a sort of instruction book for making proteins. Every person has two copies of each gene, one inherited from our father and one from our mother. The RB1 gene, which everyone should have, provides instructions for making a protein called pRB. pRB is a tumor suppressor, which in simple terms, means that its’ function is to protect your body from getting cancer, specifically (but not limited to) Retinoblastoma. So, everyone has two RB1 genes that work to maintain healthy cell growth. When Willa was formed, both of those RB1 genes were either damaged, mutated, or missing. At this point, we don’t know if the damaged gene was inherited, or mutated upon development. But, what we do know is that if it was inherited, it means that either Steven or I had one damaged RB1 gene and never developed Retinoblastoma. Which is possible. Both RB1 genes have to be damaged, mutated, or missing in order to develop this RB1 germ line mutation.
Now, what germinal or germ line means is that the RB1 mutation is present in every cell of Willa’s body. So Willa’s body is unable to produce functional pRB and cannot regulate cell division effectively. ……bring on the Frankincense (that’s for all my essential oil lovers).
I was trying to think of an image to help with this extremely intricate explanation. The best I could come up with was this: it’s like you’re going to sleep in a room in a mosquito infested place, like the middle of the rainforest. Surrounding your bed you have a mosquito net (RB1 gene #1) and just to be extra safe, you add a second net on top of the first (RB1 gene #2). With both nets intact, no mosquitos would be able to get inside to bite you. With one net destroyed there’s a greater chance that a mosquito could get inside, but still not impossible to keep them out. With both nets gone or damaged, you are completely exposed to the mosquitos and you are going to get bit. You just have no control or idea how many bites you’re going to wake up with in the morning, or where those bites are going to be, or when you’re going to get them considering you continue sleeping without the nets. That might be the worst analogy to help explain the RB1 gene mutation, but hey, I’m not getting graded on this stuff.
So far, all of Willa’s EUAs have come back clear. But, with this new information, we can expect that there will be more tumors in her remaining eye. She is also more at risk for certain cancers than the general population. About 25% more likely. But statistics are a hard thing to pinpoint, and really, when your daughter is one of a handful of babies to have this “rare” disease, statistics just fly out the window. 25% starts sounding like an awful lot, and things you never thought could happen all start to seem incredibly possible…….HA! it works both ways for miracles as well as tragedies. Things you never thought could happen all start to seem incredibly possible.
Other cancers she is more susceptible to are pinealoma (cancer of the pineal gland in the brain, osteosarcoma(bone cancer), melanoma, and cancers of soft tissue like muscle. Our genetic counselor assured us that her likelihood of developing these other cancers are higher than the general population, but still very low. Still a tough pill to swallow.
Next week we head back to St. Jude. This will be the biggest trip since Willa’s first visit. She will have an MRI to check her brain, this will be her second MRI. She has another EUA. This will be her fifth EUA (I think, it’s hard to keep straight). Steven and I will have eye exams and blood drawn for genetic testing. Finn and Johnnie June will both have blood drawn for genetic testing. Our geneticist seemed pretty confident that more than likely, Willa is the first in our family to have this gene mutation. Because like I said before, the mutation can either be passed down from a parent, or both genes can get damaged or go missing during development in the womb. She said there’s a 10% chance that one of us has the mutation. Again with the statistics…..
This isn’t what we were hoping for, but we’ve seemed to come to terms with what it all means, or might mean. I’ve stayed pretty silent about it though, because in whole honesty, I was angry at these results. The thoughts swarming around in my mind in the few days after receiving her diagnosis reminded me of Job’s wife when she’s all “curse God and die”. I kept thinking….”I just want to give up and die right now. I don’t want this. It’s not worth it. I just want everything to be over.” And then later, I was extremely ashamed at how similar my heart was compared with Job’s wife who is definitely not someone in the Bible anyone gets excited to learn about. She’s a great example of what not to do. It’s easier to curl up and die inside sometimes when we’re faced with wrenching pain…..
But then last night, Steven said something while I was shouting through tears “This sucks! This freaking blows! I hate this!” He said….
God is using this pain and suffering to grow our hearts to love people more deeply.
And earlier that day I had stumbled upon the scripture that became our sort of mantra during our first trip to St. Jude with Willa that says “For your steadfast love is before my eyes, and I walk in your faithfulness.” From Psalm 26:3. I read the verse that precedes it and it said “Prove me, O Lord, and try me; test my heart and my mind.” BAM! Hit me like a ton of bricks.
Prove me, O Lord, and try me; test my heart and my mind.
For your steadfast love is before my eyes, and I walk in your faithfulness.
And then, as I was thinking about the most random of things, like when I would get to embroider again and what I would want the hoop to say. I thought about one of the first hoops I ever stitched that had the famous line from the 2006 television series Friday Night Lights…
Clear eyes, full hearts, can’t lose.
And all the sudden it was like Jesus busting through our silly pop culture and saying “That’s it! That’s all there is! What I’ve patiently, graciously been showing you…..keep your eyes clear. Clear of doubt and fear and the mess that so easily entangles, and instead center them on my steadfast love that I will constantly, diligently, keep right before your line of sight. Keep your heart full. Full of the truth of my Gospel, growing with love of and for my Gospel, love for all people that I have created in my image that are broken and desperate and longing to be known and held.”
Keep your eyes clear, your heart full and you cannot lose. It doesn’t matter what Satan says. It doesn’t matter what cancer says. “Losing the battle to cancer” doesn’t have the final word because that is not the fight we have been called out to fight! Our fight goes beyond the physical bounds of our ailments and sufferings. Our fight echoes into eternity and beyond our comprehension and we cannot lose while our eyes are fixed upon Him and our hearts swell with His perfect love and grace.
Just like Coach Taylor and the Dillon Panthers: it was about much more than a football game. Even if the scoreboard deceitfully declared that they were the losing team, if they maintained clear eyes and full hearts, they could not be labeled losers.
We can’t lose! We can’t lose! Willa’s fight isn’t against this cancer, her fight and your fight and our fight comes from deep within, where death cannot sting and Jesus stands, ready and willing, to carry us through because He loves us with a perfect love. A perfect love that He wildly extends to all His creation, to all ends of the earth. A boundless love. A victor’s love.
Scientifically confusing notes taken from here: http://ghr.nlm.nih.gov/gene/RB1
During a recent church service, a good friend asked us all to clench each of our fists as tightly as we could. As our fingernails dug into our palms, he went on….”With your fists still clenched, now imagine someone is before you, holding out a gift for you to receive. How easily can you accept what they’re offering you while your hands remain in balled fists? It’s the same with our Heavenly Father. He waits, with arms outstretched, to bless you. But, with your hands and heart tightly clenching onto circumstance, or comfort, control, that relationship, possessions, whatever it is, you make it impossible to receive what He is offering. “
My hands have been tightly fisted around so many things lately. Mainly, my daughter’s health. I keep tightening my grasp around the idea of what the future would look like without any more anesthesia, I-40 road trips to Memphis, pokes, awaited phone calls, or doctor consults.
I cling onto whatever ounce of control I think I have. I have to know everything and once I do, I run with that knowledge and try to play God with it. And I’ve exhausted myself over and over again because I wasn’t created to know it all or control it all or carry it all.
….after our hands had been clenched as tightly as we could for a few moments…”Now, unclench your fists and feel the tension leave your hands, your fingers.”
Open your hands, and feel the weighty struggle of your humanity grasping at things only God was meant to handle suddenly slip out from your grasp and then your heart quickly following after. What once was suffocatingly gnawing at your conscience is now swept away into the all-able realm of our Creator where time and circumstance and season are manipulated by His trusting hands for our ultimate good and His glory.
And then…Oh, then! Then, with hands open, your heart is truly ready to receive what He so patiently has waited to give to you! It won’t look like the comfort or security or success that you can conjure, but it is always good and it is always more of Himself. Always.
As I type this, we are driving down I-81, headed to our third St. Jude visit. Willa has another exam under anesthesia on Wednesday morning. We haven’t heard any results from her genetic testing yet. We’re also in the midst of much more waiting….
We’ve decided to stop talking about the things we’ve “wanted” to do “one day” and start doing them. So, Steven is leaving insurance in a few months and we are moving to Wake Forest, NC so that he can begin Seminary at Southeastern. Here’s my portion of the application essay, it expresses the heart behind this huge change:
Life as a believer in Jesus Christ is comprised of a collection of spiritual “seasons”, each one an opportunity for The Lord to mold our hearts to become more like His. There are seasons of comfort and contentment, when we’re thankful for His blessings, but unaware of our need for grace. During a mountaintop season, our cup overflows and we cannot contain the joy of the Lord, so our outward expression of praise to Him is undeniable. There are seasons of waiting, doubt, or of complacency, of humility, or excitement, apathy, or of unequivocal faith.
There are seasons where we are saturated with the truth of the Gospel and in constant desperation of our Savior. It’s in this particular season that Steven and I found ourselves a few months ago when our youngest daughter, Willa, was diagnosed with a rare form of cancer. We were flung from a place of spiritual lethargy into the capable arms of our loving Father. Our false security in possessions and circumstance was quickly ripped out from underneath us and instead we were being asked to entrust, not only our daughter’s life, but our family’s whole livelihood, to the Lord.
It was during this time of absolute faith that Steven and I began to have numerous conversations about God’s will and desire for our family and Steven’s long-lasting desire to be in seminary and eventually full time ministry. While we are already being asked to go out, in faith, into the unknown territory of childhood cancer, we feel a strong draw to continue living out faith in God’s promises in every area of our life. This means that we are not only willing, but eager to unclench our fists from the comfort here in our city that we’ve called home for many years and be thrust out into the limitless opportunity that a life lived with open hands can offer.
I know that when living in obedience, God promises more of Himself. I know that following Him is not easy, but it’s simple. I know that He is good in every circumstance and that He is faithful and steadfast in every season. I know that I am undeservingly and deeply loved by Jesus Christ and that it is only by His grace that I even exist. I know that my only true calling during my fleeting time here on earth is to proclaim His name and make known His immeasurable grace that He so lavishly pours upon us. In a very practical sense, the best way I can aid our family in that calling as Steven’s helpmeet is to encourage and support him in his desire to complete his schooling at Southeastern Baptist Theological Seminary.
During this merciful season where the pertinence of grace is constantly evident, I want to see our family, under Steven’s leadership, take a step of reckless abandonment for the glory of God.
So now…we wait. Wait for Willa’s genetic testing, wait for her EUA results every six weeks, wait for Steven to be accepted into school, wait for our home to sell, wait for the right time to leave Johnson City. And during all of this waiting, I am constantly reminding myself to open my hands to everything along the way, in that mysterious abandon, trusting that whatever He gives me will be better than anything that I try to hang onto.
I wanted to share details about ocular implants and prosthesis because when I first heard in February that Willa would have her right eye removed, my mind flashed back to scenes from Pirates of the Caribbean…wooden round eyeballs or glass eyes rolling around on the floor or pirate patches for life.
This is the true story: Ocular Implants and Prostheses. (If you’re squeamish about eye stuff, better to not continue on!)
So, after they enucleated (fancy for removed) Willa’s eye, they then sent it off to be frozen indefinitely and used for cancer research. You’re welcome! Kind of feels neat (and freaky) that her eye is sitting in a dark walk-in cooler somewhere.
Next, an ocular coral implant (porous coral ball the size of a small marble) was placed where her eye used to be and then muscles and tissue were connected around that implant.
After those muscles and tissues were all surgically connected, a clear conformer was then placed on top of everything to sort of…hold it all in. This is what has been in Willa’s eye socket making it look super shiny. It also helped her eyelids stay open, rather than drooping shut.
The conformer has been in place for the last six weeks, ever since her enucleation. During her EUA Wednesday, Dr. Wilson removed her lasting sutures, but the conformer stayed in place behind her eyelids until today when our super awesome Ocularist, Rob Thomas, took it out.
When Mr. Thomas told us he was first going to take the conformer out, I had this fear that everything would just…fall out. Ah! But, it didn’t. He took the conformer out (with a cute little suction cup!) pretty easily and Willa didn’t like it, but she took it like a champ.
Then, he put another conformer-type thing on her socket, but this time, it had a tube sticking out of it. So, poor little Willa looked like something out of The Terminator for a few minutes. He used a syringe (without a needle) to squirt this liquid into the tube that ran over her eye socket and as it hardened it created a mold for her prosthesis. Amazing, right?! It was kind of like wax.
He molded it and used this flame to heat these tools to keep molding and shaping it just right. Add a little here, shave a little off there…it was really fascinating. Every now and then he’d have to put it back in, and then Willa just had this yellow/white eye with a few sharpie marks on it staring back at us.
There was a lot of screaming and holding baby hands away from baby eyeballs and lots of crying. I kept looking up at the ceiling and holding my breath and Steven watched every single second of it! But then we got to take a break and I had a margarita at lunch…that helped.
When we went back, Mr. Thomas picked an “iris button” that matched Willa’s left eye the best. He had a treasure trove of these iris buttons in all colors. He fitted that to the prosthesis and then he hand painted on tiny details while holding it up every once and again next to her left eye for comparison. This part was so incredible!
A couple more screams and adjustments later and we were done! Now Willa sleeps with one eye open….but not for long. After the swelling and puffiness goes down, the prosthesis should fit better and kind-of settle in a little more. Then her eyelids will be able to open and close more easily. I will be fantastic until I have to take it out, or put it back in. Ugh. But really, I am so in awe of all of it!
We had lots of conversations with Rob about lots of things, but mostly artificial eyes. He followed in his father’s footsteps and after college he completed a five year ocularist apprenticeship under his teaching. Rob explained that it truly is a trade. His passion and skill for this trade was remarkable.
On the drive home from Thomas Ocular, Steven said that he had been thinking all day about the parallels between the Gospel and Willa’s experience with enucleation and prosthesis. We are all sick with Sin. Jesus takes us in, removes our old, sick and dying hearts/spirits and creates in us a clean heart. Renews a right spirit within us. Willa’s eye was sick, ridden with cancer, and completely removed. And then today….. today, all day, Rob poured himself over this intricate work. He so delicately crafted this prosthetic for Willa that could one day mean the difference between her being rejected or accepted. He was confident, yet gentle and he worked so skillfully to give Willa this gift. To replace her sick eye with his workmanship. Scripture says that we are God’s workmanship. Throughout our lives, Jesus is sanctifying us, He is bent over us day in and day out, delicately forming our hearts to be more like His. He brushes us with His grace, His love, patience, and gentleness. No one is exactly alike…He molds us each in our own singular way with our own unique experiences. He is the ultimate craftsman, entrusted with the trade of making us new. And that…that is pretty fascinating.
A few weeks ago, two days before Easter Sunday, the day that so many parents feel the pressure to dress their children up in the best of clothes, making sure hair is pull back just so, shirts stay unstained and every photo shared is close to flawless…two days before, one of Willa’s eye sutures fell out and God grounded me, once more, in His truths.
Since her right eye loosed itself of that suture, I’ve felt like she’s been exposed. Exposed to what? I don’t know. I just know that it made me uncomfortable. I kept wondering “how do people feel when they see her eye like this?” We’ve been out places with her, and we hear peoples’ hushed conversations. You know the ones. The ones you’ve been a part of when you see someone who looks “different” and you come up with the story that you think fits their image the best. “I bet they were just born that way.” “I wonder what happened.” “I wonder if they feel bad or different.” “It’s probably a delay of some sort.” “Birth deformity.” “Gosh, that’s so awful.” “That’d be so hard.” “Don’t look over there right now, but…” You stare over your shoulder, just long enough to catch a glimpse that’ll give you an idea of how they got that way. I’m not pointing the finger. This is me, too. As much as I hate to admit it, we see someone different and we linger there a moment. We weigh their “offensive” physical traits and make a decision to accept them or not. And I get it. People need to do that with Willa too. I can be patient with that, with people’s ignorance to her situation, the human race’s obsession with outward appearance. But I don’t have to accept it. Because when paired against Jesus’ perfect love, what we do to one another, and to ourselves, while obsessing over fleeting beauty, is absolutely repulsive.
It’s repulsive that I, as Willa’s mother, would explain to a stranger in haste why her eye is missing so that they would accept her. It’s almost unspeakable that I would feel the need to coddle anyone because they’re taken back by a baby with one eye.
When Jesus looks at us, covered in all our sinful bents and deformities, He doesn’t need a moment to figure it out before He accepts us. He doesn’t need us to explain ourselves to Him. Explain how we got where we are, why our hearts are so hardened, bitter, shameful, full of regret. How we got our scars, our wrinkles, stretch marks, permanent frowns. He’s not taken back by our appearance and He sees it all….our faces and our hearts, our gnarled figures and our souls. He accepts it all. He wants it all.
Our resurrected King, when appearing before Thomas, still had His wounds. The living, resurrected Christ, fresh from conquering sin and death, wore His scars. I imagine that if asked, Thomas would tell you that to lay eyes upon the Risen Christ was the most beautiful thing he had witnessed in his whole existence. In all his Glory and perfection, Jesus was marked by pain and suffering. Pain and suffering that led to freedom. What beauty. A mark of vindication! Of Completion!
In a few days we leave to go back to St. Jude. Willa will be fitted for a prosthetic eye. So…before that happens, I want to dwell here and soak up her tiny face with her wound, a reminder of her pain and suffering…..pain and suffering that has led to freedom. Freedom not only of her cancer, but freedom for her parents and for anyone else who has been touched by her story, freedom to rid ourselves of the doubt that God isn’t for us. A reminder that we have all been set free, each one of us with our own wounds and scars….many that we will wear for the rest of our existence. Reminders of true beauty. Sacrificial, unconditional love. Given for us. A conqueror for us.
Oh, give us a thirst for that beauty….mark us with that beauty….raw, bloody, real, perpetual beauty.
….And Willa……golly, are you ever beautiful!
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 2 Corinthians 4:16
A week before we knew Willa had a tumor growing in her right eye, I was asked to lead our women’s group at the start of April. At the time, I had no idea what I would focus the evening on. This blog and all of its readers has been such a part of what I’ve experienced and how I’ve grown that I realized there was no way I wasn’t going to share our time this evening here on the blog for everyone to take part.
As we enter into Good Friday tomorrow and anticipate celebrating the resurrection of Christ this Easter Sunday, I need to hear other people boast in the cross. I want to know and see how God has proven Himself in other people’s lives and stories. I just went through a month of time where the Lord has been more real and evident and intimately closer to my heart than I’ve felt in my whole life. Try as I might, I could not deny the reality of the Gospel and the hope we all have in the cross. But, there is a war in my heart-a tug to pull me away from this truth and towards my own strength…to doubt that God truly loves me, to doubt that there even is a reason or a hope, to doubt that there is meaning in the suffering, to doubt that He won’t forsake us or abandon us. So, what better way to remind us of His faithfulness to us than to each take a moment to boast in the cross of Christ by asking ourselves “What have I gained because He lives?” My hope in entering into Easter weekend, is that I would hear this scripture
For as the rain and the snow come down from heaven, And do not return there without watering the earth And making it bear and sprout, And furnishing seed to the sower and bread to the eater; So will My word be which goes forth from My mouth; It will not return to Me empty, Without accomplishing what I desire, And without succeeding in the matter for which I sent it. Isaiah 55:10-11
that I would hear it and I would know it and trust in it with my whole being. Trust that He will not abandon me. He will accomplish what He began. “He who began a good work in me will carry it on to completion until the day of Christ Jesus.” Philippians 1:6. So let’s share together the hope that we have and remind one another of who it is we boast in and why.
Most of you are aware of the events that have taken place in recent weeks with our daughter Willa, but for those who don’t….our 3 month old daughter was diagnosed with Retinoblastoma-an eye cancer of the retina. After the tumor was found in her eye, everything moved very quickly and we were rushed to St. Jude. Two weeks later we took our baby home, with one less eye and lots more unknowns, but with a restored knowledge of who God is, not only in the midst of suffering, but all of the time. He proved Himself, not by circumstances, because although He answered very specific prayers in very specific ways that met our deepest longings (Willa’s cancer had not spread anywhere else outside of her eye and therefore she didn’t have to undergo chemotherapy), the proof of His faithfulness was found in how He entered into our suffering with us, met us there and carried us through. He gave us the strength and hope to endure. He grabbed our hearts and clung to them, ensuring that our fears would not steal His joy. Even when logic would say “God has forgotten these children, He’s not in this place” while we walked the halls of St. Jude and witnessed large masses of pain-filled hearts…even then He would reassure us of His presence in providential ways like this:
A father was comforted by a stranger-a teenage St. Jude patient undergoing chemotherapy treatment. During the bustle of the lunch hour at the hospital cafeteria, this young teenager put his arm around the father who was in obvious shock over the recent Neuroblastoma diagnosis of his 8 month old son, and in purposed tone stated “Don’t worry. Your son is going to be okay, he’s going to make it.”
We received countless incredible letters from friends and people in our community and from past seasons of our lives….these words from a great friend really stood out:
“I can’t help but think that I’m equally as cancerous, likely much more, than little Willa, yet I’m not aware of it, or worse I’m ashamed to admit it. Praise Jesus, who knows each of our cancers and even still gave his life for us.”
We’re all sick. The only difference setting us apart from Willa is that her sickness is easier to see. But we’re all sick, our hearts are all diseased. we’ve all fallen short of the glory of God. We are a desperate people in a broken world. We all deserve death and judgment. As John Piper says:
All we deserve from him(God) is judgment. Therefore every breath we take, every time our heart beats, every day that the sun rises, every moment we see with our eyes or hear with our ears or speak with our mouths or walk with our legs is free and undeserved gift to sinners who deserve only judgment.
One of the reasons we are not as Christ-centered and cross-saturated as we should be is that we have not realized that everything – everything good and every thing bad that God turns for the good of his redeemed children was purchased by the death of Christ for us. We simply take life and breath and health and friends and everything for granted. We think it is ours by right. But the fact is that it is not ours by right.
We are doubly undeserving of it.
1) We are creatures and our Creator was not bound or obligated to give us anything – not life or health and anything. He gives, he takes, and he does us no injustice.
2) And besides being creatures with no claim on our Creator, we are sinners. We have fallen short of his glory. We have ignored him and disobeyed him and failed to love him and trust him. The wrath of his justice is kindled against us. All we deserve from him is judgment. Therefore every breath we take, every time our heart beats, every day that the sun rises, every moment we see with our eyes or hear with our ears or speak with our mouths or walk with our legs is free and undeserved gift to sinners who deserve only judgment.
And who bought these gifts for us? Jesus Christ. And how did he purchase them? By his blood.
(read the whole article here)
It might sound crazy to hear/read those words…..as I watched Willa screaming while 5 nurses held her down to try to get an IV needle started over and over again, as I witnessed tiny little limp bodies lying in gigantic hospital beds, clutching stuffed animals and mothers and fathers kneeling at their bedside, gently coaxing them awake from anesthesia, as I watched frail teenagers being wheeled by their parents through the hospital…..those words, that confess that all we deserve is judgment, are the only way I can make sense of the suffering….that me and Steven and Willa and every being on this earth are doubly undeserving..that to even exist is an extravagant grace. An extravagant grace that our Heavenly Father lavishes upon us even while we are still sinners! It’s the moment when I’m blissfully lost in this truth that I can boast in the cross of Christ, in Jesus’ death and resurrection. It’s in those moments that I feel like this boasting was all I was ever created to do. It’s all I’ll ever want to do. It’s worth eternities of praise! It’s my whole life, my whole being.
Oh! That those moments lingered. But, the struggle is real and my heart is faint. That’s why reminders are so precious. Because we’re all walking different roads and while one is pressing ahead, full of grace, another is dragging behind, weighted down with apathy. So we pass the baton of remembrance, we raise our Ebenezers…thus far the Lord has helped us! Look and see and remember. BECAUSE HE LIVES! My (and your) Ebenezer this Easter weekend.
Because HE lives….I joyfully endure the reality of childhood cancer.
So, fill in the blank: Because HE lives…..
What has the death and resurrection of christ secured for you?
Raise it high! Be reminded that everything was obtained for us by the cross of Christ and that you are alive only because HE lives.
Here I raise my Ebenezer, Here by Thy great help I’ve come!
If you’re interested in stitching your own “Because HE lives” embroidery hoop as an Ebenezer/reminder of His help, you can use the pattern below. It was originally create for a 4″ hoop, but you can tweak the size of the image to fit whatever size you’d like. Use different stitches and/or colors if you’d like to give it your own unique twist.
Retinoblastoma. This was nothing more than a Google search result I stumbled upon while doing some “overly anxious mom” internet research on infant eye issues. Now, it has become something I know more about than I ever wanted.
There are usually 250-300 cases of Retinoblastoma each year in the United States, making it a “rare” form of childhood cancer. It accounts for about 3% of all childhood cancers. Sort of sheds a light on how extremely prevalent childhood cancer actually is when you see that statistic that says Retinoblastoma accounts for only 3% of all childhood cancers and I have developed a friendship with FOUR mothers whose child has this diagnosis. In just one month. Wow. Childhood cancer is real, folks. More real than we’d ever like to imagine.
Retinoblastoma is a rare cancer of the retina, the thin membrane on the inside back of the eye that is stimulated by light. Retinoblastoma is usually diagnosed before age 3.
Retinoblastoma can be hereditary (passed down in families) or non-hereditary.
- Forty percent of retinoblastoma patients have a genetic defect that leads to multiple tumors in one eye or both eyes. This is known as hereditary or germline retinoblastoma. These patients are typically diagnosed before 1 year of age.
- Patients with hereditary retinoblastoma may pass this disease to their children.
- Throughout their lives, patients with hereditary retinoblastoma are more likely to develop other cancers inside and outside of their eyes.
- Sixty percent of patients have the nonhereditary form of retinoblastoma. Each of these patients develops a tumor in only one eye. Nonhereditary patients are diagnosed on average around 2 years of age.
Untreated, retinoblastoma can spread widely:
- Throughout the retina
- Throughout the fluid inside the eye (also called the vitreous). Large tumors may detach from the retina and break into smaller tumors, called vitreous seeds. Floating in the vitreous, these seeds are very difficult to treat.
- Into the tissue under the retina
- Into the eye socket, optic nerve and brain
- To the bones and the bone marrow
So there are some facts on Retinoblastoma. And here’s where I want you to pay attention. I don’t share this to scare you, but to inform you:
One of the easiest ways to check your child for possible Retinoblastoma is to take a flash photograph of them in a darkened room. The eyes should reflect red. The super annoying red-eye that we all try so hard to avoid, especially before better cameras came along, is now something you absolutely want to see when checking for this cancer.
So, if a normal eye reflects red, what would an eye that is affected by Retinoblastoma look like? More than likely, the eye would reflect back white, or have a sort of “glow” that isn’t red, much like a cat’s eyes glow in the dark.
On light colored eyes, the red reflex is really easy to see. On darker eyes, sometimes there is no reflection at all. There’s a big difference between no light reflection and a white/glowing reflection. Take multiple photos from different angles.
If you start taking all these flash photos of your children and they don’t look 100% normal to you….take them to your pediatrician and ask for a red eye reflex exam, and/or for a referral to an Ophthalmologist. BEST case scenario you’re sent home and feel like an overly concerned hypochondriac! No biggie.
What is a big deal is the timing of this cancer. When caught early and with tumor growth restricted to the eye(s) it is so much easier to treat. The longer it takes for cancer to be diagnosed, the longer it has to spread throughout the body. As Mom and Dad, you are the voice and advocate for your child, especially when they’re too young to tell you if they’re feeling any discomfort or if their vision is blurry. Go with your instinct. If you’re questioning something, anything, get it checked out. I always thought “Oh my goodness I am overreacting. I don’t need to even be thinking about these things. Cancer won’t happen to my kids.”
In hindsight, I wish we had taken more flash photos of Willa’s eyes before her right eye was removed. It’s not a fun thing to document though, and I still get a sick feeling when I see her little eye reflecting white. It’s much easier to post photos of children I don’t know.
Here’s a photo of Finn that we took with the flash on. Nothing reflected back, almost no matter how many times we took a photo of him. He has extremely dark brown eyes. This worried me, I wasn’t sure what that meant…and honestly, I worried up until the point Dr. Wilson examined him and said his eyes were perfect. So….no reflection at all isn’t necessarily an indicator of an issue. White or glowing might be. Johnnie’s eyes are much lighter and they reflected back bright red every time.
So set your flash setting to “ON” and snap some photos. You will see two huge red circles smiling back at you and you won’t have to give it another thought. Put the “I’m just being a worried mother” thoughts out of your head and just do it! ….Grandmas: take flash photos of your grandchildren and check their eyes out, please!
This is a really neat article from the UK about how a toddler’s life was saved because a friend had come across a photo of her on Facebook where one of her pupils looked white. We all know social media has made us all stalkers to one degree or another….so when you peruse photo after photo on Instagram and Facebook, if you see something that looks anything like some of these photos I’ve posted, say something. End rant!
And thank the Lord Almighty that we are blessed enough to have a Pediatrician (cough, cough, Dr. Gill, First Choice Pediatrics) who did not waste a minute referring us to the Ophthalmologist. Who has made multiple house visits to check out our children. Who answers countless texts and phone calls about all sorts of health concerns. Who came over to our own home to initially give us Willa’s diagnosis so that we didn’t have to hear it from a stranger in an unfamiliar office. Who has always been such a comfort and support. Who is extremely passionate about helping kids stay healthy. Who has been like a second father to my husband. Who has never ever made me feel silly when my eyes start to well up with tears during well-checks for my babies. Who loves and cares so deeply. Thank you, Dr. Gill, will all that we have, thank you.
…Oh and “EYE FIGHT TO WIN!!!!” -Willa Bea