Our Journey at Shriners…

We checked LilyGrace in today at Shriners Hospital in St. Louis at the Metabolic Research Center.  Hopefully, we will find out more about her diagnosis of Fibrous Dysplasia and learn new possible treatments.  There was some confusion at church about her stay in Shriners this week.  We are not here for a surgery.  We are here to begin the research process with the Metabolic team.  They are one of the best in the nation and we are blessed to have been accepted into their research program.  I think the confusion could have been due to the failed surgery at Children’s and the doctor’s recommendation for LilyGrace to be a patient at Shriners.

Today has been a long day.  We have a little better understanding of Fibrous Dysplasia and also an assurance, from the doctor that her bone tumors are not cancerous.  We are very grateful for this affirmation and are a bit more at ease.  We do understand that FD lesions can possibly become cancerous later down the road, but that is not the norm.

We’ve only been here one day and are already extremely impressed with the doctors, nurses and staff at Shriners.  We have been greeted with warmth and compassion at every turn.  We are actually in the family quarters area which is nicer than most hotels.  Being a children’s hospital it is geared to children.  However, this Dad felt right at home with the air hockey table, xbox, ps4 station and the wii u.  There is a basketball hoop shooting game that LilyGrace and I enjoyed.  She hasn’t quite got the hang of making the baskets but has really enjoyed throwing the balls in the air.  In her defense, she has made a few baskets.  By the end of the week, I’m sure she will be beating us with no problems.

We would like to ask y’all to continue to pray for LilyGrace and the rest of the family.  She has been a little nervous about this week but is finding her stay at Shriners to be very luxurious for now.  We will see how she is feeling after her blood work/tests tomorrow.

That’s pretty much all for now.  Lynette and I just wanted to give a quick update.  We have had several texts and Facebook messages asking about everything.

Thanks for your prayers,

Isaac, Lynette and LilyGrace

About Isaac

I am married to the love of my life and we have been blessed with three beautiful children. We also have a dog and a rabbit. God has been extremely good to us and we are blessed beyond measure. I have been serving the Lord as Worship Pastor and other in other various ministry areas since I was 16 years old. I believe God calls all of us to live a life of discipleship. I greatly enjoy building relationships with my family, church, community and arround the world. Being intentional with your decisions and your relationship is extremely important when following Jesus. Some of my other hobbies include spending lots of time with my family, volleyball and swimming with my kiddos. I also have enjoyed the opportunity to participate in many musicals and opera scenes. Some of my favorite Christian authors are Max Lucado, Beth Moore, A.W. Tozer, C.S. Lewis, Philip Yancy and many others.
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9 Responses to Our Journey at Shriners…

  1. Floyd Buffington says:

    I’m sure Lillygrace will some become a member of the “Shriners Kids Family” stories like this make me proud to be a Shriner and a Member of the Board of Govenors at St. Louis Hospital.


  2. Judy Smith says:

    Love and prayers for all of you


  3. Josh Smith says:

    Glad everything is going well and thanks for the update. That is good news about not being cancer. Praying for you guys.


  4. Mary Lou Edwards says:

    Sending prayers for all of you!


  5. Gloria Dowden says:

    Praying that the doctors will come up with just the right plan for Lily Grace and that soon this will all be a memory of God’s grace and miracles in your lives.


  6. Donise Malone says:

    Prayers for all Isaac & Lynette.
    May the doctors continue to answer your questions and give you knowledge about what lies ahead. May God give you the peace and understanding to help Lily as she goes through this journey in her life.
    We love you all and continue to pray for you. Thank God for his love and know he is in control. …..He will take care of you.
    All our Love


  7. Sandy Stolze says:

    Love to all of you and of course prayers. Please let us know if there is anything at all we can do. Good to know all the geeat things I’ve heard about Shriners is true. Sounds like everyone is in good hands.


  8. Shawn Parks says:

    So glad 2 hear first day went so well. They have a special reputation I pray they take great care of u & Lilly Grace. Greatfull bone is not cancer.


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