Willa’s Story

For Your steadfast love is before my eyes,

and I walk in Your faithfulness.

Psalm 26:3

Read this post to start at the beginning of Willa’s journey to fight retinoblastoma.

Our little Willa Beatrice (Willa Bea) has been diagnosed with Retinoblastoma, an eye cancer of the retina. Retinoblastoma occurs in about 1 out of every 20,000 children. It’s a rare from of cancer, but it is the most common form of eye cancer in children. We are receiving care at St. Jude Children’s Research Hospital in Memphis with the best team possible: Dr. Wilson, Dr. Brennen, and our favorite Nurse Practitioner Tracey. Watch this video for an inside look at the incredible RB Team at St. Jude.

 

**Update as of September 2016**

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You’d never know this kid had/has cancer. She’s just our Willa. Super sweet, incredibly hard-headed, tough as nails, and keeps the whole family in stitches in ways I can’t even comprehend. She’s such a joy! She makes these constant trips to Memphis so enjoyable. Sure, she gets grouchy and she’s even started throwing (adorable) mini tantrums, but she is the definition of God’s mercy, because let me tell you, He shows me so much mercy through her during what ought to be extremely exhausting and difficult trips.

After the enucleation of her right eye in March 2015, Willa remained tumor free until October 2015. Two tiny tumors had popped up in her left eye and were treated with laser successfully. We didn’t see much until the following January, where a tumor re-grew in one of those previous areas. This spot was lasered again and for a good while we were going back to St. Jude every three weeks to keep a good “eye” on the situation. She received laser treatment each time, and there was an “elevated area” of concern that Dr. Wilson wasn’t about to let go unchecked.  I was starting to think we might never get back on the every six weeks schedule, but here we are! Clear scans for the first time in what feels like forever in August of 2016.

 

 

11 thoughts on “Willa’s Story

  1. Karen McMurray says:

    Our prayers are with you that God will completely heal Willa and that He will provide you strength and peace in this journey.

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  2. Emily says:

    As I walked by my two hoops that you made that are hanging in my daughter’s room I thought of you and your family. I am praying for Willa and your whole family.

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  3. Curt and Beth Barnes says:

    Dear Stephen and Allison,
    Stephen’s dad, Jeff, let us know about your precious baby and the journey that you are all on. Our son, Luke, has been a patient at St. Jude for the past 2 years and 4 months. He will continue his treatment for leukemia for another 2 months.
    I remember the day we left for Memphis like it was yesterday and all the pain and heartache we felt leaving our other 2 children at home and for what our then 9-year-old son was going to endure. Be assured that God has got this. You are going to an incredible place, filled with love and hope and amazing people working so hard to cure all childhood cancers. You have an unbelievable support group who will pray for you and do things for you that you never dreamed they would do. And you have one powerful, mighty, merciful God that you can go to at any time of the day or night with your petitions, knowing that He never sleeps or slumbers. He hears your prayers and His Son is there to intercede for you when you do not know what you ought to pray.
    Please know that we are praying and telling others to pray. Please call us if you need someone to talk to or have any questions about Memphis or St. Jude. You can call or text at 423-202-0293 or email us at curtebarnes@comcast.net.

    In the grip of His grace, Beth Barnes

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  4. jessica says:

    I hope this gives you hope…I have a very good friend who’s son was diagnosed with retinoblastoma when he was about 18 months old. He is now 19 years old and lives a normal life! He can even drive. He has never let the loss of his eye stop him.
    I have another friend who is now 26 and was diagnosed with retinoblastoma when she was a baby as well. She now has a perfect baby of her own, drives and has a job…she has never let the loss of her eye stop her either!

    GOD IS GOOD! God Bless!!

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  5. Susan says:

    The daughter of one of my friends was diagnosed with retinoblastoma when she was 1. She had surgery and chemo and today she is a happy and healthy and vibrant 9 year old.

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  6. Eileen Weeks says:

    My precious Allison,
    As I read the detailed journey you and Steven are on, I am just amazed by your transparancy, deep emotions that bubble up, ability to express yourself so beautifully, and God’s strength and grace. The father who encouraged you to embrace the pain gave you such good advice. It is bitter sweet……pain and closeness to our Lord as He carries you through the whole experience. He is there and will be there! Willa is in my constant prayers. You and Steven are lifted up to the Father each day. Your strength comes from the Lord. I love you sweet gal. Eileen

    Liked by 1 person

  7. hillvj says:

    Our strength comes from the Lord. He will guide you through all of this and He will receive the glory. Thanks for your beautiful word of expression that you have so freely shared. I know this has touched many lives and will continue to do so.

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  8. M. Lynne Roffino says:

    I am a nurse and worked with retinoblastoma patients and their families for years. I was always amazed at how strong the patients were, even as infants, and what wonderful advocates the parents became. From the moment of terrifying diagnoses through the continuing examinations under anesthesia, while holding our collective breaths, that we all endured, until finally the child and family emerged victorious, we lived in prayer. losing an eye is far easier than losing a child. It helped when we showed our parents some of our other patients photos and asked them to see if they could tell which was the real eye. But I will never forget my first patient. He was older than most of the others, I am thinking about 7 years old. He came in for an EUA, and after he was taken to the OR, I stayed behind to speak with the parents. He had his enucleation as an infant. I asked Mom if she was worried about how he would be treated in school? She answered, that she was terribly worried until she was doing laundry one day, and as she checked the pockets of his jeans, she pulled out a wad of $1.00 bills. She asked him, where did all this money come from? He answered nonchalantly, “I told the kids at school that if they brought a dollar, I’d let them watch me take my eye out.” She said after that, she never worried again. Later one of our patient’s fathers met this same young man at a picnic for retinoblastoma patients in our area. The boy was bragging to the father that he was the best football player, the best baseball player and soccer player at his school. I have a sister in law who is blind as a result of retinopathy of prematurity. She has several degrees including a masters. She works full time and does some consulting work with some airlines. Don’t tell her she can’t do something or she will prove you wrong. For years she did cooking demonstrations at the fair and now is a judge of baking and other food items. After many years in nursing, I can tell you that there is no such thing as a perfect person. We all have some flaw. Even the most perfect specimen of a human being on the outside might have terrible cholesterol levels and might drop dead of a heart attack at age 25. After working with children with eye problems for so many years, I was startled when my youngest daughter got her first driver’s license and complained that it showed her lazy eye. What lazy eye? I asked, then looked at the photo. I took it to our eye plastics doctor and said, what do you think of this? He did a CT scan and said she was just fine. It was eye opening, pardon the pun, that it is true that no two eyes on the same person are the same. How many times did we ask, which is the eye we are supposed to put drops in because the prosthetic looked so real. I no longer work in the hospital. Now I am a school nurse. I have some former patients whose parents keep in touch with me by Facebook or emails. When I learn about upcoming EUAs, I pray until the results are knows and then some. We called them our children. They will always be our children. the gentleman who makes the prosthetics in Dallas also has a prosthetic eye. This was a wonderful gift for those youngsters and adults who lose eyes, either from disease or accident because he knows what they are going through. They developed a terrific bond with him. I think you will find that this wretched disease will bring about a whole new family for your child and your family. That outside of your immediate circle there are professionals and strangers who love you and your child and will treat all of you as if you were their own family. Love is a powerful healing force.

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