Eye Fight to Win-Retinoblastoma Awareness

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.

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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.

RB EyeWhat 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.”

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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.

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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

Lead Me On

**I have to add a thank-you here, after spending the last hour writing up this post. Thank you for reading my words and following along. Blogging this experience has been almost crucial to the processing of all these events. I’ve sat down at this keyboard uncertain, and through honestly confessing on-screen and in my heart before The Lord, I am going to walk away emboldened by the freedom that can only be found in Christ. Praying that He will use these words to relieve you of the regret, guilt, control, anxiety that you’ve been clinging to tonight. Thank you, readers. Now read on!

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Drawing by my incredibly talented friend, Lauren Zook. Instagram: @laurenzook

Since we’ve been home I’ve really struggled. Mainly with these things:

1. I don’t know how to, in every day mundane life,  maintain the intimacy I felt with Christ while we were at St. Jude. I am frustrated beyond belief with this. I feel down. The closest thing I can compare it to is coming back home after working a summer at Doe River Gorge. It makes sense…the past few weeks definitely can’t be described as a mountain-top experience, but spiritually, in our desperation, we were lit up and bonded with The Lord in almost every moment. We had to be to get through it. So now what? We get good news and get sent home and then just…forget? Wouldn’t you think God would just get so frustrated with us for proving Himself over and over only to have us continuously choose countless idols over Him? We desperately need the Gospel. BUT MAN! I just want to finally get it. And stop forgetting that in every season I am desperate for Him. It is my state. My glorious state that propels me ever onward into the arms of grace. Whether in progress or poverty…always desperation.

2. I feel like we abandoned families that didn’t go home when we did. There are so many children with disease, in situations that seem incredibly hopeless, and parents that have been pleading for good news for a.long.time. We get the scare of a lifetime, hop over to St. Jude, have Dr. Wilson pop out an eye and then high-tail it back on home. Or, that’s what it feels like. What about everyone else, Lord? What am I supposed to do with this overbearing feeling of needing to help them? How can I fully relax in your miraculous work in our daughter, but also continue on in heartbreak for the other faces I passed at St. Jude? The countless faces I studied, hours on end, marked with #childhoodcancer. It seems almost oxymoronic or cruel. And deep down I know that it truly isn’t and that one day I will have clarity, but tonight, I am so heavy and confused.

3. I miss the bond we shared between each person at St. Jude. Sometimes, being back home, I feel like people have elevated us, or maybe displaced us a little, like we’re a little bit foreign because we’re going through something most people won’t experience. But the truth is, I’m just as clueless. I was never one to have the right words to say to someone in hard seasons. I still don’t have the right words. I don’t even know what I would tell myself. I miss the freedom we had in knowing that the couple sitting next to us has a child battling disease too. You get to skip all the obligatory or awkward steps, and cut right to it. It’s just understood. And it’s not that our community hasn’t been amazing. Everyone during this season has increased my faith in the body of Christ tenfold. I just miss the unspoken familiarity that came with St. Jude families.

4. Tonight I am more scared of cancer than ever before. Maybe it’s because it’s so real now. I can’t deny any longer the problem our humanity has with disease and sickness. I can’t protect myself, my husband, or my kids from falling victim to its brutality.

5. I am experiencing incredible levels of regret and guilt. I want to jump into Mr. Peabody’s time machine and rewind the clock to January, to the moment I decided to stop trying to nurse Willa. I had just gotten mastitis and with two other young children, I felt like I just couldn’t do it. I had no idea there was a tumor in her sweet little eye. I HAD NO IDEA! And if I had just waited, just pushed through, a few more weeks and I would’ve known that my baby was sick. I don’t have a lot of regrets…usually with time I am able to make sense of every situation. I’m not there yet. I want to take that back so badly, with every fiber of my being. I want to give her what every mother was created to give their baby. I want to nurture her and provide for her. And I can’t. I keep hearing these stories of people and children who were diagnosed with cancer and then switched to an incredibly healthy lifestyle only to be declared cancer free not long after. All I want to do is juice as many leafy greens and good things I can get my hands on, down 32 ounces of it every hour and then breastfeed my baby all day long.

6. I still think I can control cancer. I still think I can control my circumstances. Just read numbers 4 and 5 on this list. I’m scared of cancer because I’m trying to control it. I’m holding onto regret and allowing guilt to batter my heart because I honestly think that if I could nurse Willa then cancer won’t ever be able to harm her again. God proved His goodness to us in miraculous ways last week, and it only took four days being home for me to try to take the reins again.

 

I feel exposed and beat-up. You entertain fear and then Satan doesn’t waste a second of opportunity to snag you. I feel snagged. Anxiety is tripping me up, guilt is weighing me down. I’m exhausted. I’m sprinting circles in my mind: Kale! Chia seeds! How can I get the kids to eat better? I have to toss out the clorox wipes, like right now. What’s better than peanut butter? GMO. Non-GMO. Stomach aches, why does Finn always have a stomach ache? What about fluoride? Plastics, crap! Plastic is everywhere! I need glass baby bottles. Hydrogenated oil. What the heck is soy lecithin? Sunbutter. Almond butter. Whole wheat is bad? Bread is sugar. Sugar is bad. Sugar causes cancer. Thank God I haven’t had a coke in weeks. Coke. How is coke regulated by the FDA and still allowed. FDA. They allow too much. Cheetos? Toxins in everything. FDA approved. Approved to make you sick. Or fat. Or both. Maybe they want us to die in mass numbers. The U.S. has the highest rate of cancer. Other countries have banned food that our government says is okay. Let’s sell our house. Yes, let’s start a homestead. Grow everything. Everything from scratch. Beets. Goats.

STOP! Stop! You can’t continue like this. You’re losing it. Stop and meditate on these words…

Oh how I love You! How I love You! You have not forsaken me!!!

He has not forsaken me. He has not forsaken Willa. He has not forsaken you. I don’t know about numbers 1-6. I just don’t. But, I don’t have to know. I just have to know my God and King. See His steadfast love. Live into His faithfulness. Oh, what a brilliant thought! To stop and only know one thing. The one thing.

Oh Lord, keep us from stumbling. Good Shepherd of my soul….take my hand and lead me on.

(Lyrics taken from Shepherd by Bethel Music)

Thy Glory in My Valley

IMG_4685This past week has been a roller coaster. Waiting on pathology and waiting for our other two children to arrive safely  from the opposite side of the state and waiting to get their eyes examined and waiting to hear if their eyes looked okay. …waiting and trusting.

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I had a bad case of nervous stomach for 6 days. But, we had a lot to keep ourselves busy. Mom and Dad came to Memphis to help and support us, and love on Willa, of course! They arrived Monday evening. The next day, Steven’s parents arrived with Finn and Johnnie and then things got real exciting! We missed those kids like crazy. I had forgotten how easily little ones can wear you out, but it is so worth the exhaustion.

I was a little worried about how they would react when they saw Willa’s eye. It did not phase them one bit. Finn wanted to make sure she was okay, but they didn’t shy away from her at all. Children are so amazing. Our good friends’ kids were the same when we visited them for lunch earlier in the week. I was worried the sight of sutured eyelids would frighten them, but they were just incredibly loving and curious.

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We were able to get out and go to the Memphis Zoo on Wednesday. I tried to enjoy it, but swirling around in my mind were all the unknowns that were upon us, and I couldn’t stop thinking about Willa’s temporary IJ line that was sticking out of her neck and pulling at her skin every time she turned her head. At the right angle, I could catch a glimpse behind the dressing at the sutures that were holding the line in place. Her sweet little skin being pulled like that reminded me of fishing when I was a kid, and having to pull the hook out of the fish’s mouth. Agh!  Even if Willa had gotten used to it, I never did. I hated that thing. We were asked to keep it in place for at least 7 days, while we waited for her pathology results, just in case she needed chemo, then they could just go back and “re-wire” it to make it permanent.

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Getting blood drawn.

Each day we had to go to the hospital to get it flushed. Nurses made comments (in the best baby talk) like “How could they do this to you, you shweet thangs?? They needs a spankins’!” One of our favorite nurses, Keisha (who held me when I couldn’t handle seeing Willa poked on day 1), was the best at being so gentle with Willa’s line. Each day we told her more and more of Willa’s story and our lives. She is amazing.

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Right after her temporary IJ line was removed. SO glad to be rid of that sucker.

 

On Thursday we were told that pathology results would be in by the end of the day. We had to rush Willa to appointments that were all made “just in case” of chemo……if we are fully honest, I think we started to lose hope at this point. “Do they know something we don’t?” “Why so many ‘just in case’ appointments?”

Then it was time for Finn and Johnnie’s exams. They hated the eyedrops. My goodness is Finn a fighter! But, of course, afterward he kind of wipes his hair out of his eyes and says “that didn’t hurt at all!” Finn got a free eyepatch out of that. Looks just like Kwazy’s from Octonauts.

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Most legit pirate eyepatch ever.

 

Dr. Wilson is so cool. I mean really, he is. A glance through some fancy round lens into Finn’s eyes looking left, right, up, down, and then I heard “Perfect! They look great!” RELIEF. Two-thirds of the weight off of my shoulders! We all clapped…..and then Finn played on our Child Life Specialist’s iPad.

Johnnie’s turn. A glance through some fancy round lens into Johnnie’s eyes, a flashlight, and then…ULTRASOUND?! My heart started racing. Ultrasound? Why does he need to do an ultrasound? What did he see??? On the screen, I strained my eyes to look for what he had been so concerned about that he needed to do an ultrasound of her eyes. I think I stopped breathing. But then…”Perfect! All four eyes are perfect.” PHEWWWWW! …The ultrasound was just used because she’s too young to listen and look in different directions for Dr. Wilson to have gotten a good look at her eyes.

After the kids passed with flying colors, I didn’t have a care in the world. I knew it was going to be OK. I knew that Willa wouldn’t have to have chemo. I just knew. I had a renewed joy. I even gave the kids a Twix and the melted chocolate that ended up all over everything didn’t even phase me. They don’t have Retinoblastoma. Their eyes are healthy. They could’ve done just about anything at this point and gotten away with it. I didn’t care. They were healthy!!!!

Then Dookers and Wubbs (Mom and Dad) left to catch their flight home while Papa and Peaches (Jeff and Debbie) took Finn and Johnnie back to their hotel for a nap. I was feeding a dozing Willa back at our housing. It was so quiet. And Steven and I knew it would only be an hour or two before we heard results.

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I was staring down at Willa, watching her eye get heavy, opening and slowly closing, when Steven’s phone rang. My heart leapt out of my chest. I don’t even remember what he said to Tracy on the phone, I just remember he turned toward me and threw his fist up in the air! HOORAH! The happy sobs were uncontrollable. It was the kind of crying where there aren’t many tears, but your whole torso shakes and your shoulders double over. I held onto Willa and marveled at God’s love for us. Her little body was rocking up and down because I couldn’t stop with the whole shaky cry-thing I had going on.

Now, I’m sitting in our hotel room in Nashville. Tomorrow, we will be home. HOME!

Willa’s journey with Retinoblastoma isn’t over. We return to St. Jude at the end of April for another EUA (I think), to get her sutures removed, and a fitting for her prosthetic eye(I think). We are waiting on genetic testing results, which take about 6-8 weeks. We still don’t know if Willa has Unilateral or Bilateral. Since she is so young, it’s possible that tumors just haven’t developed in her left eye yet, so that’s why her exams and future scans are so important. If caught early enough, if anything were to develop in her left eye later on, they would be treated by laser or cryotherapy.

Is it strange to say that I’m excited to return? I love St. Jude. I love that my heart has been made aware of the reality of childhood cancer. I will never be the same. In the past three weeks I have been more aware of our desperate state and The LORD’s perfect ability to reach down and carry us through some of our darkest hours than ever before. I love St. Jude because Jesus is so evident and so alive there. Hope and glory ring out louder when you and everyone around you is walking through a valley.

Lord, in the daytime stars can be seen from deepest wells,

and the deeper the wells the brighter thy stars shine;

Let me find thy light in my darkness,

thy life in my death,

thy joy in my sorrow,

thy grace in my sin,

thy riches in my poverty

thy glory in my valley.

-The Valley of Vision

 

It’s Gonna be OK

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A few hours after her eye enucleation and in observation.

 

Willa’s surgery went almost as well as expected yesterday morning. Leaving her in that operating room was so hard to do.  She was awake in my arms when I walked her in. She didn’t like the gas mask much, but she must’ve liked the way it smelled, because she started licking the gas.

Everything went as smoothly as anticipated, except that they had the hardest time starting an IV. Dr. Wilson said they called almost every doctor that was available to come try to find a vein. After an hour and a half and tons of pokes, they gave up and came out to tell us. We thought the surgery was complete when they asked us to speak with them. Ha! Dr. Wilson hadn’t even begun yet!

They ended up having to put in a temporary central line since finding a vein was virtually impossible. Dr. Wilson said he hasn’t seen that in 15 years! After another 45 minutes or so, he was able to finally begin the enucleation.

While in the waiting room, we were blessed to have another couple to talk to who’s daughter was in surgery as well. This helped pass the time for sure. Their daughter fought lymphoma two years ago and treatment was successful. It was nice to talk to someone who really understands what you’re going through and where you’re coming from. And it was a great change of pace to here Steven and them talk about Tennessee football!

When we were called back to see Willa she looked so tiny on her little bed. She had a bandage over her right eye, but her left eye was open and she was looking at everything, taking it all in. She was pretty pitiful for most of the day yesterday. She hardly ate, and any time she was coherent it seemed she was uncomfortable. She didn’t really cry, just kept making sweet little moaning sounds. I think it was more just trying to wake from being under anesthesia for the past three days. Not to mention, 2.5 hours of it just for this surgery alone.

This morning she got her bandage off. Here eye is swollen, and the sutures are a tad bit startling just at first, but overall it really seems like a piece of cake when you’re talking about getting rid of cancer.

We thought we would be headed home on Sunday or Monday, but now that she has a central line in place we have to stay the whole week. Hopefully we will hear from pathology in a handful of days. If the results come back positive and the cancer has spread, she will have a spinal tap to make sure and then start chemo treatment. If the results come back negative we will get to head home!!!!!!!

So in the meantime, we are resting and waiting. We also have to get Finn and Johnnie June examined, and that might happen as soon as this week while we’re already here.

You all….yesterday, I was an emotional wreck, wrought with anxiety, because there’s so much we still don’t know. All of the genetic talk just totally overwhelms me and I hate that getting our other children checked out is even something we have to consider. I was exhausted and Willa wasn’t very happy. Every time she tried to cry I didn’t know what was wrong. Gas? Her eye? Nausea? The central line? The tape on her face? Her neck? Her chest????

Today, I’m hopeful and on fire! Willa’s eye (or lack thereof) looks incredible. Her nurse practitioner was thrilled with her recovery so far. She is resting and happy today. Even gave us a few smiles!

I’m also just so in awe of St. Jude. I haven’t had much time, up until recently, to process how blessed we are to have been referred here. Willa’s treatment is impeccable. Her nurses, especially Emily in the Medicine Room, have been OUTSTANDING. The nurses here cry with you. They don’t just care for your child, they love your child. The sight and sound of Willa fighting and screaming when they were drawing blood during her labs on the first day here was too much for me; one nurse held me while I struggled to pull it together. She just held me and told me I didn’t have to be strong, that it was okay to cry, that God had a plan for even this. They’re like angels, these nurses!

The doctors explain everything to us without the slightest hint of arrogance. They are some of the most humble professionals I have ever encountered. Extremely intelligent in their specific field, and extremely humble…making so sure that parents truly understand what’s going on with their child. Pray for the St. Jude staff. I have no doubt that billions of prayers are said for these beautiful people. They are strong enough to get their work done, and still be personally invested in each patient. Their hearts are open, leaving them vulnerable to the pain and suffering they see everyday, but also open to developing a deep relationship with patients and their parents. There’s no way they could do that without the Holy Spirit strengthening them and filling them with hope.

All of the extra things St. Jude does for patients in their Child Life department are amazing. Every day at lunch there is some type of live music being played. Some players from the LA Lakers were here the other day signing autographs. …..tons of employees are cancer survivors. I am forever changed. Forever motivated to no longer ignore childhood cancer, but to embrace the battle and be a small part of it, whatever that looks like.

On the TV in our housing lobby this morning I saw that St. Jude was just named one of the top places to work by Forbes. Duh! It is incredible. If I ever went back to school to work full-time, I would get a degree to be a Child Life Specialist at this hospital….that’s how much of an impact it’s left on me. I’m even slightly excited to have Finn and Johnnie here, because they are going to LOVE it! I mean……red wagons to ride in?? Even just that is enough to make them squeal and that’s just two steps inside the front doors.

I think a lot of this is me coming to terms with Willa having cancer. Now when I walk the halls, holding little Willa in my arms, I feel like we are part of the club. We get it. I’m not nervous anymore to see these kids’ faces. I’m fighting, Steven’s fighting, Willa’s fighting, we’re fighting with them.

It’s obviously not “cloud nine” all the time. I get hit with waves of fear. I hear a child crying out in pain in the room next door. I still want to suck cancer out of every little body here. I get angry. But, there’s something about this place, and these awesome kids, that reassures me: It’s gonna be OK.

 

Hurdle-Jumping

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This is how Willa rolls at St. Jude!

 

Alright! Willa experienced the first of what looks like will be many many many EUAs (Exams Under Anesthesia). She was the most perfect baby to not have eaten for 6 hours and still not cry before being sedated. She just fell asleep in my arms and barely noticed when they put the gas mask on her. Steven and I decided that I would walk her into the OR, so I suited up, and laid her down on the little table (that they made extra cushy and warm)….then they let me give her a little kiss on the cheek and I walked back out. I cried.

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Right before EUA, with bed-head. Sorry Willa, we forgot a baby brush…

 

Waiting in the waiting room was almost torment. But it was neat to see other kiddos there with prosthetic eyes, you can hardly tell! I read a beautiful letter from a beautiful friend and prayers from The Valley of Vision to help pass the time. Steven read some AMAZING paragraphs in Cries of the Heart. Here’s an excerpt:

It is a continual effort not to listen to the moods which arise from physical condition, never to submit to them for a second. We have to take ourselves by the scruff of the neck and shake ourselves, and we will find that we can do what we said we could not.

Unless we train our emotions they will lead us around by the nose, and we will be captives to every passing impulse or reaction. But once faith is trained to control the emotions and knows how to lean resolutely against weaknesses of character, another entryway of doubt is sealed shut forever. Much of our distress as christians comes not because of sin, but because we are ignorant of the laws of our own nature.

Oswald Chambers

Dr. Wilson called us back after about a 45 minute wait. By the way…Dr. Wilson has the coolest glasses. He’s pretty hip. First word out of his mouth today was “unfortunately” and I almost barfed, but then he told us what we pretty much already knew: “Unfortunately, Willa does have Retinoblastoma.”

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Snazzy science photo of Right eye with tumor(top) and left eye, totally healthy(bottom).

He showed us a snazzy scientific  photograph of her eyes. Her left eye is perfect, PRAISE GOD! He didn’t find any tumors or growths there. He did say, however, that the tumor in her right eye is one of the biggest, if not the biggest Retinoblastoma tumor he has ever seen in a patient her age. And this guy is the leading Retinoblastoma specialist in the world, so I think Willa needs a prize or a huge scholarship or something, right?? Talk of chemo lasted about 10 seconds and then we quickly moved onto eye enucleation (I sound so smart when I say it like that). So….Friday she will have her right eye removed. And at this point, no chemo. Hopefully it will stay that way.

We were very discouraged after her exam. Dr. Wilson couldn’t say whether she had Unilateral Sporadic Retinoblastoma or Bilateral Hereditary Retinoblastoma, and it sounds like it’s more gray area than we at first thought. You see, all of Willa’s symptoms point to Unilateral, however, since she is so young, it’s possible that she has Bilateral and tumors just haven’t had the chance to develop in her left eye yet. So, it looks like more waiting is probably in the cards for us. After they remove her eye on Friday they will study the tumor and should have some more information, but even then, it’s more of a waiting game. We will return back here to St. Jude every SIX WEEKS for EUAs to make sure there are no more growths. If growths are found, it would confirm that she has Bilateral Hereditary Retinoblastoma, BUT, the good news is that tumors would be found when they’re minuscule and removed with laser treatments.

Phew…that’s a lot, and it’s still not all of it, and I’m just as lost as you are reading all of that.

Main points are: no tumors in left eye, right eye being removed, MRI tomorrow to check to make sure there are no tumors in her brain, EUA every six weeks, Finn and Johnnie will be examined, and St. Jude is a part of our lives for the next 18 years.

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After EUA…not happy.

 

Willa was a wreck when we were taken back to see her. Wires everywhere. Screaming. Nurses trying everything. Toots and burps from all the gas. She was feisty! And it took a lot to calm her down enough to eat anything. Our hearts at that point just burst and splattered all over that post-op floor. I hate cancer. Every time I lock eyes with one of the patients here I just want to grab them and suck the cancer out of every corner of their bodies with my cancer-sucking vacuum.

Willa’s MRI is scheduled for tomorrow morning at 8:00…another huge day and hopefully more peace about what exactly is going on with her. Then, surgery Friday.

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About 5 hours after EUA…back to her happy little self!

Another hurdle down….a handful more to go.

Waiting

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Today and Yesterday have been incredibly long and exhausting days. We arrived here at St. Jude yesterday evening and spent a handful of hours in kind of a “triage” for after hours. Willa was checked out, got her vitals taken and seen by a doctor. We watched The Bachelor intermittently  to help pass the time, but it was mostly waiting.

We got to our housing later that night and as soon as I walked into our room I was overcome with a strong desire to not be here anymore and to be home again. I think that I’ve viewed cancer as a death sentence my whole life and never really gave it much more thought. So, being here for only a few hours and seeing so many little bald headed beauties bopping around was too much for me. I wanted out. I didn’t sign up for this. I’m not strong enough and it’s time to go home.

But….two slices of Domino’s pizza, a few hours sleep, and a schedule for the following day that was like the golden ticket to Willa’s freedom from this tumor began to change all of that previous thinking. As I’m drifting away from denial I’m grabbing ahold of the reality of childhood cancer and the choice to play the victim or to do everything I can to help Willa fight.

This morning we were up at 6:30 and prepping for the day. We had appointments stacked one on top of the other. All most of it was pretty low-key. A lot of waiting. Willa is the most perfect baby….she has barely cried or complained the least bit about being wayyyyy off schedule. Though she doesn’t so much like having three nurses hold her down to draw blood(mommy and daddy didn’t like that either). She smiles at us and falls asleep in our arms. She is the sweetest little trooper.

Tomorrow is a big day, a HUGE day. Tomorrow we head to pre-op for Willa’s EUA (exam under anesthesia). They will sedate her and Dr. Wilson will thoroughly exam both of her eyes. He is looking for various things during this exam. He should be able to tell us: 1. if she does in fact have Retinoblastoma. 2: if the tumor is contained in her right eye and hasn’t spread into the brain. 3. if there are any tumors in her left eye.

With this exam, along with genetic testing, we will finally know whether Willa has Unilateral Sporadic Retinoblastoma(which is what we are praying for, other than a miraculous misdiagnosis altogether) or Hereditary Retinoblastoma.

If Willa is diagnosed with Unilateral Sporadic Retinoblastoma she will probably lose her right eye, but that would be the end of this road. Other than having an incredible prosthetic eye, her life would be completely normal after removal….with the exception of how abnormally amazing this experience has already been so far and the legacy she is already living! There’s a 60% chance that her Retinoblastoma is Unilateral Sporadic.

If Willa is diagnosed with Hereditary Retinoblastoma, she will likely lose her right eye and she will be on strict observation for other cancers in the future, especially tumors in her brain, Leukemia and bone cancers. There’s also a chance with Hereditary Retinoblastoma for there to be future tumor(s) in her left eye. There’s a 40% chance that her Retinoblastoma is Hereditary.

After her exam under anesthesia, Dr. Wilson will tell us about his findings and then she has to be observed for 6 hours, so we will be confined to a little hospital-type room for a majority of the day after post-op.

Then Thursday, she is scheduled for an MRI which she will also be sedated for. Obviously we are hoping that there aren’t any other masses or growths found.

The next two days are big….they are what we are anxiously awaiting, yet dreading. There’s a fork in the road just up ahead. Each road is extremely different from the other and we have no idea which one we will be traveling.

Pray for the miraculous because God does not lack the strength. Pray for full hearts and courage because the Spirit that raised Christ from the dead now dwells within us. Pray that we would trust Him in the waiting because He has continuously proved His steadfast love to us.

Also, our address here is:

Willa Blackburn

St. Jude Children’s Research Hospital

262 Danny Thomas Place

Memphis, TN 38105-3678

Halfway There

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Hotel bed is Willa approved.

As I’m lying in this enormous bed awake in the dark, encouragement constantly streams from the words of so many through texts, letters, emails, and comments. I have to stop right now and just say thank you! And thank the Lord for how, not only does He never leave us or forsake us, but He continually reminds us with tangible evidence of His grace when we begin to doubt. Support hasn’t stopped since the moment we were given Willa’s diagnosis. And Christ’s love truly is never-failing and has not and will not cease. I am thankful that He is patient with my anxious heart, and reminds me through your words of hope that He is right beside me, closer than my skin, and feeling the weight of all of it.

There are moments I begin to believe that we are being punished, or that our situation is laughable, or deserved….but that is worldly grief. And worldly grief produces death. I want a godly grief, the kind that reminds me that I am alive, that I am a living daughter of The King. The kind that leads to salvation without regret.

For see what earnestness this godly grief has produced in you, but also what eagerness to clear yourselves, what indignation, what fear, what longing, what zeal, what punishment!

2 Corinthians 7:10-11

As Michael Scott from The Office says: “There’s grief….and then there’s good grief.” There’s my comedic relief for the moment.

When we arrive at St. Jude later this evening, I am praying that The Lord will grant me eyes to see each child and their families as another chance to lead us all to repentance. Rather than look on each patient’s situation with pity or worldly grief, I pray that I am reminded that God is revealing His goodness to and through those children and babies and teenagers too. Lord grant us a godly grief!

Look to the One who does not avoid our suffering but enters in, who does not despise our brokenness but redeems it.

May our tears of grief lead us to repentance, and may we receive refreshment for our souls. Amen.

Amanda Bible Williams, She Reads Truth

Now to check out Nashville’s best in yarn boutiques to buy us some time, err buy us some yarn…..poor Steven!