It’s Gonna be OK

photo-189

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.

 

28 thoughts on “It’s Gonna be OK

  1. Lee Anne says:

    To see you Choose Joy, to hear the fight in your words makes my heart sing. I love you sweet lady and you are doing an awesome job! We continue to pray and lift you guys up throughout the day. Thank you so much for sharing.

    Like

  2. Karen says:

    Praying for all of you! And thanks for your transparency; y’all are incredible to share this. Definitely impacting people you’ve never met; praise be to God!
    Karen Stenstrom

    Like

  3. Leslie and Tom Oyler says:

    We are praying for you and the st Jude’s staff. May you be filled with a peace that surpasses any human understanding. Know you are dearly loved by the Oyler families and myriads more. Thank you for the updates that are coming from your heart. Prayers are continuing and help me to look past some of my struggles to focus on you and the many others in such incomprehensible situations. Blessings, I pray.

    Like

  4. putapuredukes says:

    Is it weird to say, “I love your sweet Willa?” I hope not. I found y’all just after you posted about her diagnosis and have felt so drawn to you and how you talk about our Jesus and your baby (I have an etsy shop, a son, daughter and a new baby daughter, Noa, born in October…so we have some similarities going on).

    I imagine it’s slightly jarringing to think about your baby not having one of her eyes any longer…even knowing it’s for an unavoidable reason. I love that you don’t shy away from grieving that, but are also so thankful to be in a place and time where the tumor could be detected so early and removed so safely and precisely.

    Thank you for your faith and authenticity. Good thing Jesus’s lap is so big because I’m right there with you!

    Like

  5. Jennifer says:

    Happy the surgery is behind you all. She probably did like the the anesthesia. You brought back a memory of my anesthesiologist who called herself mother goose and would give me a choice of what flavor I wanted during my EUA and would tell me a story as I fell asleep. Praying the results allow you and your family to go home soon.

    Like

  6. NANCY BROWN says:

    I am glad she is through the surgery. Keep the faith because God has a plan for Willla. Love you both.

    Aunt Nancy and Uncle Jim

    Like

  7. Carol Rohrer says:

    Sweet, lovely Allison – I am sorry that you and Steven are having to experience this trauma and heart pain, I am sorry that Willa is having to go through this physical pain and the loss of an eye, but I do know that our God is with you and is preparing the way for you. Your testimony of this is beautiful and encouraging. I am praying for you all. Sent with love.

    Like

  8. Linda Robbins says:

    Praying for you. My heart is so heavy for you and Willa.
    May God give you the peace that passes all understanding.
    Mrs. Robbins

    Like

  9. Angie Grizzle says:

    I’m so blessed to be reading and learning more anout St. Jude’s . You never wish any of your loved ones or friends to be there, but to here of the wonderful love and care given is so amazing !
    I’m so thankful Willa has this care and I am thankful your family is well cared for. Sending prayers Yiur way

    Like

  10. Ashleigh says:

    Your darling Willa is beautiful! I have been following your work and just adore your beautiful family! Prayers and happy thoughts for you and your loved ones.

    Like

  11. Keight says:

    Is it weird to say, “I love your sweet Willa?” I hope not. I found y’all just after you posted about her diagnosis and have felt so drawn to you and how you talk about our Jesus and your baby (I have an etsy shop, a son, daughter and a new baby daughter, Noa, born in October…so we have some similarities going on).

    I imagine it’s slightly jarringing to think about your baby not having one of her eyes any longer…even knowing it’s for an unavoidable reason. I love that you don’t shy away from grieving that, but are also so thankful to be in a place and time where the tumor could be detected so early and removed so safely and precisely.

    Thank you for your faith and authenticity. Good thing Jesus’s lap is so big because I’m right there with you!

    Like

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

    Allison,
    I’ve never met you ; but I know Steven. Your words are heartfelt . It was as though we were thre with you . Tony( spouse) and I have been praying for your baby girl , you and Steven, and your other 2 children. You ARE in an amazing hospital. I believe with all of my heart that people that take care of sick children are very special human beings. Thigh I have not been in the place that you are and have been; I am well aware of angels in my life . That my Heavenly Father surrounded me with them . My doctor is one of them.

    Like

  13. Amanda Burrow says:

    My two boys, husband and I havd been praying for you guys and your beautiful Willa. We have mutual friends in Lindsay Fooshee and Katie Wilburn.

    Our youngest is a St. Jude patient, and we have been so grateful that your Willa was sent to St. Jude. That place does God’s work thru the earthly angels that work there…praying continually for Willa’s recovery and that in Jesus’ name the path report is clean!!!!

    Peace and comfort be yours today and in the days ahead.
    Love in Christ,
    Amanda and Travis Burrow

    Like

  14. Sarah Good says:

    Yes. To all of it. Angels live at St. Jude. People don’t understand that I actually have some fond memories of Kellan’s cancer journey…unless they have been to St. Jude. She still gets pumped up for her scans and checkups. Prayers continue. So thankful for blessings thus far.

    Like

  15. Megan says:

    You are awesome, Allison. Seriously. We are praying for you guys and crying along with you. “The one who has called you is faithful and HE WILL DO IT.”

    Like

  16. Megan Carson says:

    You are awesome Allison, seriously. We are praying for you and crying along with you. “The one who has called you is faithful and HE WILL DO IT.” Love you guys.

    Like

  17. Kara G says:

    Following Willa’s (and your whole family’s) journey and holding in you in the brightest light. My own Willa Rose (2) is one of Charlotte, Owen, and Leo’s cousins on the other side. So thankful for a successful surgery and continued prayers for strength and clarity for both you and the medical team.

    Like

  18. Aggie King says:

    Answered prayers, we will keep praying for Willa and all of you and St. Jude and all that work there and all those precious children! And in spite of all that is going on, “God is Good, All the Time”

    Like

  19. Troy and Dianne Burrow says:

    We pray for precious Willa and your family. We also pray for her grandparents whose walk we have walked. Our grandson, Layton, was diagnosed with Acute Myloid Leukemia at the age of two. It has been a terrifying but incredible journey and Praise be to Almighty God, doctors and nurses of St Jude, Layton is a very healthy 9 yr old today. Stay strong and know you are surrounded by the Father and the Heavenly Realm.

    Like

  20. Micah Whitson says:

    Sending love and prayers to you guys and little Willa from snowy Boston. May God give y’all strength, solace and rest. And that he might change the world through her.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s