We Have an Answer…
Sarah Kate's labs have confirmed that she is in an HLH (Hemophagocytic Lymphohistiocytosis) flare. She has had constant fevers since Saturday (some in excess of 105); so that, along with dropping blood counts and outrageously high inflammation markers, has left her feeling terribly sick. Sarah received blood today, and her doctors will now monitor her closely as they consider potential treatment options. They will likely start her on a medication that has helped to settle things down in the past. Given Sarah’s history of HLH flares, a bone marrow transplant would be a consideration; however, Sarah is just not strong enough for that to be a viable option. Other HLH treatments like chemotherapy and high-dose steroids are also believed to be too harsh for her, especially considering her chronic pancytopenia. Sarah’s doctors and nurses at Mercy have been incredible... Last night they transferred her to the PICU to keep a closer eye on her. We have been so very blessed by their devotion, kindness, and excellent care. Before Sarah was transferred to the PICU, Alice Eloise’s Uncle Tim took it upon himself to bring her to the hospital to see her Mommy. It was so very sweet of Tim and absolutely wonderful medicine for Sarah.  

 

Sarah looks darn good considering all that she has been through the past few days... But as her Mom, I can attest that those sick girl eyes speak volumes. God provides for our every need, and you, dear friends, are among His very best blessings. Thank you for your continued love, support, and prayers. It is truly comforting to know that so many are supporting us in this fight.

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22 Responses to We Have an Answer…

  1. Sean Samitt says:

    Love and miss you Sarah, if you need or want to talk, feel free to email me or call me (490-269-1677) 🙂
    Hugs from fellow RSDer and Addie-May 🙂

  2. Christina Echols says:

    Thoughts and prayers to you…always!

  3. Missy McCoy says:

    Thank you so much for your update on Sarah Kathryn. We met her on Instagram and love her so much! We commit to lift her up to Jesus and pray His peace will fill all your hearts and that His healing hand will touch her. God bless you all and again, we really appreciate the update. Xoxo Missy and maggiedoodle and fam

  4. Jennifer Shurman says:

    I’m so sorry to hear it’s an HLH flare. HLH is something I never want to go through again with Julia, so I can imagine how you all are feeling. Thank you for updating us as she has been in my thoughts. I always look forward to Sarah Kate’s uplifting posts. I hope she knows how many people she makes smile with her positive attitude. I’ll keep all of you in my prayers and especially Sarah Kate who needs this HLH to calm down quickly. Sending love , prayers, and strength.

  5. Jo says:

    Sweet Sarah, you are beautiful! I can tell how happy you are to see Alice! Doodles are so special. Although Cinder is quite the spoiled puppy. She has gotten so big! She really needs to learn some manners. But I love her so much. Sending love and prayers to you all!

  6. Yvonne says:

    Good Moring Sweet Sarah! Love the picture of you and your BFF. And you’re still smiling….what an angel you are! So glad to hear you are moving in the right direction with a diagnosis and treatment. Stay strong and courageous just like always. Hugs to you and your loving famil. I love you and will continue to pray for your recovery.

  7. Melissa Schmidt says:

    Sarah Kate, I don’t know you personally, but started reading your blog when a mutual friend of your Mom’s started sending them to me. Your unflinching faith, positive attitude and funny, quirky personality shine through with every word you write. I have a friend that is suffering from a hidden disease as well and really struggles with staying positive. I have shared several of your posts with her and she always tells me how much they help lift her spirits. I’m praying for you and your family, that God gives you all the strength and comfort you need to get better and for your doctors, that He guides them in finding a cure for you!

  8. Joanne Orfanos says:

    As always so sorry to hear that Sarah must go through this. Prayers are headed her way. Tell her her new haircut is darling.

  9. Judy Reese says:

    Sarah so sorry you are feeling so poorly! You and Alice Eloise make great looking pair even when you are feeling so bad. You kick that HLH’s butt and get to feeling better! Our prayers are with you and your family! Love and xxxxxxx’s!

  10. Melody Dillard says:

    My granddaughter Sophia, has secondary HLH. She is 3 months old. My heart and prayers go out for this beautiful warrior. Asking God to guide the hands of the HLH experts at MERCY! !!!!!

  11. Ann Flaherty says:

    this study drug may be helpful in getting Sarah stronger, stopping the HLH, and seems to have very few side effects. Check out these websites:
    http://www.novimmune.com/pipeline/ni-0501.html
    http://www.clinicaltrials.gov/ct2/show/NCT01818492

    I wish this drug was available 6 yrs ago when our son had HLH. If it were, we may not be dealing with some of the long term effects we are facing now.

    Best wishes,
    Ann Flaherty
    HLH/BMT mom

  12. Ann Flaherty says:

    Also, just so you don’t think I’m some whacko advertising the study drug, that’s us in the HLH video. The two boys in the blue and red polo shirts. The one in the blue polo is William, the hlh/BMT survivor, and the one red polo is Charles, he donated his marrow to William. I’m the mom with short hair and a black or brown shirt.

    If you have any questions, please feel free to email me.

  13. Lee Ann says:

    Wish there was something I could do! Please know I am here if you have any questions-I know I am not a doctor but I have seen HLH many times. God bless and I am praying really hard!!!! You know one time when Ethan relapsed steroids alone got him in remission–not sure if she can tolerate them or not. Big hugs!!!!! Take one day at a time…

  14. sue deist says:

    Thanks so much for this update. Thoughts and prayers are coming your way always Sarah. I must say Alice looks so happy in the pic 🙂

  15. Melanie Frank says:

    Sending all my love, positive thoughts, prayers and gentle hugs to both you and Sarah!!

  16. Carol Markway says:

    I’m so thankful you have answers and also that you are at Mercy being pampered by the best nurses and doctors ever!! Love you!!

  17. Betty Bashaw says:

    We are praying for you, Sarah. We are praying for your family, too. Our best love is being sent your way.

    P.S. Your Aunt Lisa is my cousin. 🙂

  18. Stephanie Tubbs says:

    Hi sweet girl. So thankful that you have answers and are in such a great place. Two of my most favorite doctors, Dr. Jen York and Dr. Phil Oren, are PICU attendings at Mercy. They are amazing and I just know they will take the best care of you. Prayers for you and your continued healing. -Stephanie

  19. Deanna Brooker says:

    Oh Sarah, I think of you every day and remember you in prayer. I’ve been waiting to hear how you’re surviving this latest flare up. You are a survivor you know, because as a Christian you will win. It grieves my heart so much to know how much you are suffering and enduring. Your courage and faith are such an inspiration to me. May it bless you to know you are an encouragement and you are loved. God’s blessings to you dear one. Deanna

  20. Sorry you are having to go through this trial. Praying for your healing from HLH, Sarah Kate and that the Lord will stregthen you in your spirit to persevere and that you and your family will have peace. I love you sister! The Lord is always with you and loves you no matter what is going on with your health. You are His. And that’s a forever promise…

  21. I hope from the bottom of my heart that the doctors that are treating Sarah KAte for HLH find the better option for her to recover soon. Please tell her I care a lot about her.

  22. amber leigh says:

    I admire Sarah. She’s still pushing and fighting to live. I was also diagnosed to HLH. Even though I am in remission now, I had a long and awful fight in the hospital with liver and kidney failure, I caught pneumonia. I had blood and platelet transfusions. Went through two rounds of chemotherapy.. I had to be intubated three times within a month and a half. I can’t believe I survived this and my doctors tell me the same.