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

Hopeful for Harvest

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You’re in the time between planting and harvest. The Lord has planted all these amazing seeds in your lives over the last month that He WILL develop into an incredible harvest of fruit in your life! But all you feel right now is a plowed up field. The fruit will come, it always comes, but The Lord will be the one to bring it all to fruition. He wastes nothing, Al, not a single moment of the last year since the very moment Willa was conceived has been a mistake or a misstep. Every single second has been within His firm grasp and for His specific, exact purpose. And it WILL bear fruit! It already is!

How can I doubt that He will show up and comfort me with His truths when He provides exactly what my soul is thirsting for?

For as the rain and the snow come down from heaven and do not return there but water the earth, making it bring forth and sprout, giving seed to the sower and bread to the eater, so shall my word be that goes out from my mouth;

it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it.

Isaiah 55:10-11

BAM! His burden truly is light. Weightless.

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

 

Feel all the Feels

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Can’t wait to have them all back together again.

 

In the past two weeks we have received more encouragement than I have in probably my whole lifetime. I have really tried to read every word that every person has taken the time to write. We are incredibly grateful for this immeasureable support.

One email I received had the best advice I’ve been given….A father to a Retinoblastoma survivor himself, he writes:

Embrace every bit of pain you experience. Do not try to ignore it or numb it. Engage it, so that you might get everything out of this that God would have for you. He will get you through this, but don’t just try to survive; commit to grow and keep your eyes wide open to God’s hand on your life. You will eventually look back on this time with amazingly sweet memories.

It had been probably just one or two full days after we received Willa’s diagnosis that I realized that I hadn’t been alone with the Lord and allowed myself to truly feel the weight of all of it in His presence. I was getting along well with keeping myself busy with all three children, cleaning, preparing to leave for Memphis, playing in the snow. But I knew that wasn’t God’s intention with the pain.

You see, ever since Johnnie June was born about a year and a half ago, I’ve been scared to “feel all the feels” in front of the Lord. And plead with Him. And scream at Him. Cry with Him. I’ve been consumed with trying to form the right words, spend the right amount of time praying, staying above the surface with Him to avoid the hurt, the sanctification, the hard stuff, the reason we exist. I had prayed for Him to, quite frankly, speed up the labor process with Johnnie and get her here faster, because it wasn’t fun and it hurt and I wanted Him to save me from it. And He didn’t….I felt abandoned and really and truly until the past few months I’ve remained in that spot.

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So, after two days of holding it all together following Willa’s diagnosis, I felt the tugging of the Spirit to let.it.go. I sat down, probably opening my Bible(I don’t remember, because at this point I was still trying to save face) and played the song “You Make Me Brave” by Bethel Music for the first time ever. And then it happened. The tears would not stop. I sobbed. I CRIED OUT TO THE LORD! I was literally writhing in pain, pulling at my clothes, unable to contain the hurt that had welled up inside of my heart. And you know what? I’ve never felt closer to my Creator. I feared abandonment, but instead I was received, enveloped in open arms of mercy.

He wants all of you, always. In the midst of the struggle He is jealous for your broken and contrite heart.

The sacrifices of God are a broken spirit; a broken and contrite heart, O God, you WILL NOT despise.     Psalm 51:17  (emphasis mine)

So, if you’re holding back, if you’re happy and comfortable staying busy while ignoring the hurt so you can just survive it. Stop. Pour it out and allow Him to bear your burden! How long do you think the alternative will keep your head above the waves? When you feel it all, yes, it hurts, it’s the worst pain imaginable….but you know you’re alive. In allowing God into the darkest parts of our hearts by ripping off the bandaid of facade and bleeding out the reality of our broken and desperate state, we’re invited into the greater story.

We’re alive and we’re living for a love and a cause that cannot be contained beneath our circumstances. We’re invited into the Gospel, into the lap of Jesus, who has already won the battle for us. So give up! You don’t have to be strong in front of your Maker. Feel all the feels. I dare you, I really do. In confidence I can say, you can never be prepared for the hurricane of grace that is waiting to saturate your tired heart.

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.

 

Thanksgiving

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I’m going to make it short tonight, because I want to just spend the last bits of this evening not reflecting on the days and events that have unfolded recently.

First and foremost, Willa’s MRI results came back and we were told that she has no tumors or growths in or on her brain! Such a praise! After she had just come out of sedation and I was feeding her, Steven nudged me to ask the Lord specifically that there wouldn’t be anything more found in the MRI(this was hours before we were given any results). I started crying. “I’m scared to ask!” …I know that literally hundreds of people have been praying for our sweet Willa. In boldness there are masses going to the throne and pleading with Him for specifics. And I was scared to ask. But, it only took my husband’s nudging to prompt me to ask Abba Father for what was truly on my heart. I want prayer to always feel like climbing up onto His lap and wrapping my arms around his neck. I think it starts with not fearing to tell Him the desires of our hearts.

I don’t want to overlook how incredible it is and how amazing it feels to know the MRI results and be surrounded by the warm hug of an answered prayer. I really want to let the relief sink in and be saturated by His goodness, overcome with thankfulness. Thank you for praying with us! Thank you for asking boldly of the King, even if some of you were scared to approach Him with specific pleads. Thank you!

Tomorrow morning at 7:30 am Central time, Willa will be in surgery to have her eye removed. I don’t know what much else to say, because I don’t know what to expect. On the one hand, I’m extremely grateful that the tumor will be gone….and on the other, I am mourning the loss of her beautiful eye and already worrying about how long it might possibly take me to get over myself and my discomfort. I want to immediately be so familiar with Willa’s new change that I don’t even flinch for a second.

After the tumor is removed it will be tested for genetic purposes, as well as to make sure the cancer has not spread elsewhere. This was new news to us. The MRI didn’t show any other tumors, but it did tell us that the tumor she does have is so big that it is right on the line, just big enough to raise a red flag. They have to make sure it didn’t cross the “eye boundary”…..This is the most sense I can make out of what Willa’s doctor was saying. From what I understood today, there’s a 50% chance the cancer has spread and if it has, Willa will have to start chemo. There’s also a 50% chance the cancer is contained within her right eye and once it’s removed we just keep returning to St. Jude for exams to check for any future growths.

We won’t find out what pathology finds in the tumor for about a week after tomorrow’s surgery. We will have returned to Johnson City by then, so we will receive a phone  call with these results. More waiting….

God threw us over a huge hurdle today and I want to rest in thanksgiving. Grace, thanksgiving, joy. Eucharisteo.