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.

20 thoughts on “Hurdle-Jumping

  1. Karen Speropulos says:

    Alison, thank you for taking time to update all of us here in Johnson City. I didn’t get a chance to write a letter before your send off on Sunday, but you all have certainly been in my prayers. My heart breaks for all that you have to go through right now and that little Willa is having to endure. I love your honesty and truthfulness. God can handle it and the rest of us need to be reminded of the raw-ness of where life really is for all of us, so so fragile. You are in our prayers; we will continue. You are loved, so loved.
    –Karen Speropulos

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  2. Amy Kiger says:

    Sweet baby! I have walked in your shoes, and I know today was a tough day. Praying for good news from here on out! My son is a wreck every time he wakes up from being sedated. And it breaks my heart every time! Hang in there! I promise it gets easier.

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  3. Myra Schill./ Debbie's friend says:

    Prayers today for all. Talked to A friend of mind that’s a pediatrician . She looked at me and said ” Saint Jude is where Willa needs to be… ” praying for you .

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  4. Traci Deaderick says:

    Adopta,
    I’ve been routinely following your posts and praying for you, little Willa and your entire family. I update Zach daily when we get to talk, and both out hearts and all our are with you. I cannot even begin to imagine half of what you guys are experiencing. Your strength and unshaken faith is encouraging, and I applaud you for it. Keep it up. You guys will get through this. We love you. Let us know if you need anything and we will do what we can.

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  5. Sheryne says:

    Me and my 8month old baby boy will be praying for you every night before bed (around 8 o’clock here in France) from now on during our ” going to bed” routine. I find confort believing with all my heart that there isn’t one cancer cell that goes anywhere with out our loving God being fully aware of it.

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  6. NANCY BROWN says:

    What a beautiful post. It made me cry. I will be thinking and praying for her and the family daily. God can work miracles. Love to you both.

    Aunt Nancy and Uncle Jim

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  7. Jennifer says:

    As a retinoblastoma survivor who’s left eye was enucleated and right eye tumors removed via photocouagulation, I hope to leave you with a sense that everything will work out for your daughter. As my mom would say, the check ups under EUA were the worst, the waiting …. But 37 years later, I’m here and turned out to be a school psychologist just like your mom. There is hope for a bright future. May you continue to stay strong and have peace that things will work out.

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  8. Laura Ainsworth says:

    Made me cry! Boy you know how to tell a raw story! But I love your heart and the honesty!
    Sounds like even in the early stages here, there is a plan for today and a plan for this week …and the other plans that are still to come are being planned out by the Lord! He’s got them covered! And they are being bathed in prayers by so many!
    Willa is super blessed to have such a wonderful momma like you!
    Lifting you up!

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  9. Kelly Mata says:

    Praying the God of all comfort grants you peace and serenity. You have MANY praying alongside you. The battle is the Lord’s…..I pray you rest in Him!

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  10. Julie Whitlock says:

    Dear Allison,
    Willa is a precious little girl and loved by so many; that is evident by the posts here. Your faith in our great God is also ever present! His Holy Spirit is comforting your spirit as you walk through these sad, uncertain days. There is definitely Light that is shining from this very dark place your family is finding themselves.
    My name is Julie Whitlock and I live here in Collierville, TN, a suburb of Memphis. I heard of your situation and trip here to St Jude, from a dear friend, Angie Gibson that knows one of your grandparents that lives at Appalachian Christian Village. Angie thought perhaps I could check on you while you are here in town and lend any assistance you might need. As a fellow sister in Christ, please accept my phone number, 901-289-7252, and call anytime that you think of something I could help with. I will come down to the hospital and visit in a day or so and introduce myself. You’ve already met my daughter, Patti Honnoll. She works there at St Jude in the Sonography dept. She remembered scanning Willa and meeting you guys! She said you were such sweet people and Willa just slept through her entire scan!
    We are here to lend any help you need, really! I look forward to meeting you and being able to pray with you. Little Willa is in good hands here at St Jude, but she’s in the best hands of Jesus! He loves her so much, as He does you and Steven and all your family.
    God’s blessings,
    Julie

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  11. Nikki Dolan says:

    Tim and I want you guys to know that you are constantly in our thoughts & prayers…lifting Willa up during surgery & days following.

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  12. Julie Ekstrand says:

    You have no idea who I am, but your blog popped up on a mutual friend’s wall, and I wanted to let you know that your family is in my prayers. I also wanted to tell you how awesome I think you are! You are beautiful, you are strong, and you are being cradled in the arms of the Creator of the universe! I love how outspoken you are with your faith and being so very real about the times the Evil One is knocking at your door. Do not give in to him! God is faithful, and He loves you and your precious little Willa, and He is walking every step of the way with you.
    My 4 children are all adults now, and we’ve been through our share of serious challenges. One of the biggest things I can proclaim is how very faithful our Savior is, and because of how He has proven Himself to ALWAYS be in every day and every situation, my faithfulness in trusting Him has grown. I know you will find the same to be true in your own lives.
    Praying for this day.

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  13. Karen Grant says:

    We continue to pray daily for all of you! Your postings are heart wrenching and we pray for God to give you grace for each step ahead.

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  14. Lindsay Fooshee says:

    Meeting with my prayer group gals to pray in the morning… we will pray fervently for Willa as well as you and Steven during surgery. I’m reminded of one of the names of God tonight: Jehovah Rapha: the Lord who Heals. We will pray for a neat and efficient surgery as well as super-quick healing and recovery. We love you all so much!

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