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

21 thoughts on “Waiting

  1. Sarah Good says:

    Hi there! A mutual friend sent me Willa’s story and asked for prayers for you all, knowing that our family has walked a similar road. My daughter was diagnosed with medulloblastoma (malignant brain tumor) in March 2011, 11 days after her fourth birthday. We live in Kingsport, and we spent our first terrifying moments at Niswonger as well. After Kellan’s diagnosis, we headed straight to Memphis for surgery at LeBonheur, and then stayed for 7 months of chemo and radiation at St. Jude. She is now a happy, healthy second grader who is one year away from the magic of remission.
    You are now at the most amazing place on earth. I am fully convinced that God lives full time at St. Jude and just outsources from there. Willa is in the best possible hands. We are covering you in prayer in Kingsport–I wanted to reach out to you because I remember how reassuring it was to talk to people who has walked this road before me. Please don’t hesitate to email me (sar4680@gmail.com) anytime–I would love to support you guys any way I can, even if it’s just telling you about the best places to eat in Memphis or what to do when you’re bored. We are praying.

    Sarah Good

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  2. Linda Robbins says:

    I am praying for you both and precious Willa. May God give you the peace that passes al understanding and both the doctors and you wisdom as her treatment is planned. May Willa and you feel the love of our Lord and Savior.

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  3. Cortney and Joel Leachman says:

    Praying for you all that our precious Father is ever present with strength and comfort for all of you!

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  4. Angie Burnette Gibson says:

    There is a 100% chance that God is in control. I am praying so fervently for your sweet family and for precious little Willa. Your support system spreads so far you almost cannot see it all. Please keep us posted how to pray and any needs that you might have.

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  5. Sarah says:

    Oh Allison… What a wait. I am praying that God’s good, pleasing, and perfect will be made complete. And praying that His perfect will involves Willa kicking this cancer’s butt and having a dramatic story to tell when she’s older. And yes, blood draws suck! I always think it’s somewhat ironic that humankind can split the atom and make tracks on the moon, yet nobody has figured out a less barbaric way of getting blood out of a baby?! That would be a greater definition of civilized in my opinion… 🙂

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  6. NANCY BROWN says:

    Steven Allison and Willa Bea… I have been thinking about you everyday and also praying for you. I know that God works miracles in peoples lives everyday. With all the people saying prayers I know things will work out. Although we live away from you guys and our other family we think of everybody daily. We love you and will continue to pray for your family.

    Aunt Nancy and Uncle Jim

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  7. Rebekah says:

    I invite you to like a page on Facebook called Autumns Adventure. It is the page about my daughters journey with Bilateral Retinoblastoma. At 9 1/2 weeks old she was diagnosed and now at 9 1/2 months she has been cancer free for 3 months after removing one eye and numerous chemotherapy treatments. Even though this cancer is rare those of us who have been through it like to stick together and help one another out.

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  8. Sandra says:

    May the comforting Holy Spirit wrap around your family like a warm blanket. Agreeing with you and others for a miracle for your sweet baby…God give you strength and peace now and
    in days ahead…

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  9. Cathy Miller says:

    I am praying for your precious baby and for all of your family. I pray that you will feel the love of family, friends, and even strangers like me that are praying to our Heavenly Father on your behalf. Praying for the doctors and for all who are caring for your daughter, and for you that you will constantly feel God’s love and peace, even when you do not understand all that is happening around you. . (Read Psalms 139 when you get a chance) lots of “hugs” are good too.

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  10. Emily Sharp says:

    I learned about your story through the McQuain’s. As a fellow mommy and as a fellow believer, I stand with you in prayer as well! Praying for the miraculous. Praying peace over your heart as you carry so much burden for your little girl and your boys! Thank you for sharing your story and being so vulnerable!

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  11. Teagan Jacobson says:

    Anxious to hear results.
    Questions…
    Will you be at the hospital for a while regardless of results?
    Do you have your sewing stuff with you?

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    • garlandandpendant says:

      Teagan,
      Right now, it looks like we could be heading back home as soon as this weekend, but we have to wait for MRI results to confirm that. And Yes! I do have my sewing stuff! Still haven’t really had the chance to get it out, but man, I miss it!

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  12. Jeannette Tysinger says:

    Praying for your sweet little one’s health and healing and for your strength and peace during this time. FYI, we had a nurse at St. Jude tell us that about 10-20 minutes before the shots or blood draws, you can let you baby suck on a sugary treat (like a sucker or pacifier dipped in sugar). The sugar releases endorphins which lessen the pain. It worked wonders for our son. I started keeping Dum Dum suckers in my purse for such occasions.

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  13. Gayle Meredith Green says:

    I just now read about little Willa. I am so sorry you all are going through this. I am praying for you and will put Willa on the prayer chain at church.

    Jesus tells us to ask in his name and it will be done. He promises us. Please take comfort in knowing that God is in control and that he hears our prayers. Love to all of you.

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  14. Jamie montgomery says:

    Praying hard for y’all Allison! Loved the video! She is so so cute and sweet. You and Steven are so strong, we miss you guys!

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  15. Nellie Chan says:

    Allison, this is so very random but I came across Willa’s story via the retinoblastoma hashtag on Instagram. Our daughter was diagnosed with retinoblastoma when she was a month old and we’ve walked a very similar path that you are currently on. Please know that I’m praying for you all, using the hard-won truth our family has gained over the past year and a half. Your faith is already such a beautiful thing to see and it’s been a blessing to me. If we can help in any way, please don’t wait a minute to let me know how. chan.janell@gmail.com

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    • garlandandpendant says:

      Thank you so much for sharing your story with us Nellie! We are so encouraged and comforted through hearing about other families who have walked or are walking the same road. Retinoblastoma doesn’t seem all that rare considering how many people have come forward and said they have a child diagnosed with it or they were themselves when they were babies, etc. Thank you for praying!!!

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  16. Wayne & Michele Muncey says:

    Dear Steven & Allison
    Michele an I are praying for you all. We not only pray for Willa’s healing but for God to comfort you as you travel through this dark time.

    We love you
    The Munceys

    Like

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