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Posted 2017-01-23T04:36:08Z

Day 180 - a steady uphill climb!!

It’s been 6 months since Lyla’s bone marrow transplant in Minnesota, 3 months since we found out about her last bump in the road and two months since we’ve been back home in Arizona. And, a long time since I’ve written a blog post, sorry! 

The last few months have been pretty crazy getting moved back into our home after 5 months, transitioning Lyla to the BMT team at Phoenix Children’s hospital, ALOT of doctor visits and infusions, keeping Lyla in isolation, recurring norovirus since she has no immune system, and an insane lack of sleep and frustration from steroids keeping Lyla up every hour of the night and us trying to regain some sense of normal life.  Our saving grace for the past two months has been help from our family and most especially from Lyla’s Nana (Steve’s mom), who for the second time in the same month dropped everything in Wales to come live with us and help take care of Lyla.  We literally could not have survived the last few months without you, Janice.  Thank you from the bottom of heart, we are going to miss you immensely!!! 

In last few months, Lyla has had 4 infusions of retuximab, an immune suppressant drug, and has been on high dose steroids to wipe out her immune system AGAIN. The goal was to kill the T cells creating the antibodies against the donor platelets and red blood cells. With the hope that once the cells start growing back, the memory of those antibodies will be forever gone and never appear again.  It’s a tricky process because after the infusions and a very slow wean off steroids, the only thing we can do is wait, hope, wait, and hope some more.  It’s going on two months and we are still waiting!  All signs so far are pointing to a happy outcome though!!  Lyla’s platelet and red blood cell counts have remained strong, even as her steroid dose has been declining week by week.  The drop in steroids allows the T cells to re-grow and if those antibodies come back, the first indicator is normally a drop in counts.  The hard part is we won’t know if it’s worked for sure until Lyla is completely off steroids and her immune system is fully recovered, which won’t be for at least another month or so.  We are very optimistic she will pull through this last bump in the road though!!  In the meantime, we are continuing to keep Lyla safe and germ free at home but all of us are happier and happier each week as the horrible drug called steroids slowly disappears from our lives! :)

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Comments (8)

  • Liz Berkenkamp
    Liz Berkenkamp

    Bless you dear family!!

    3 years ago · Reply
  • Christine Tibbott
    Christine Tibbott

    Wonderful to get an update on Lyla and you all. Think of you all the time and LJ keeps me up to date with photos of Lyla. What a wonderful smile Lyla has. A ray of sunshine which we are in short supply of here in the UK at the moment! Everyone here sends their love and best wishes. Much love Christine xxxxxxx

    3 years ago · Reply
  • Rebecca

    Sending love and hugs from the Graystons. You are doing an amazing job xxxx

    3 years ago · Reply
  • Julie Purschke
    Julie Purschke

    So good to hear an update!! The Purschkes have been thinking of you all, and Lyla and your family continue to be in our hearts and prayers. Nicholas and I just loved looking through all the photos! She's getting so big and what a beautiful smile! And so good to see Janice too, what a blessing she is to your family, God's angel for you all! We will pray for the good numbers to continue to rise and for the steroids to go away :-). You need your sleep!!! God bless your sweet family!

    3 years ago · Reply
  • Roger Bisnett
    Roger Bisnett

    Keep the faith! Love you all! Dad

    3 years ago · Reply
  • Melanie Neal McCubbins
    Melanie Neal McCubbins

    I like to read these posts because 1) it puts my stresses with my four kids into perspective, 2) you guys are such an optimistic breath of fresh air. You all are an inspiration to me! Lots of loves!!! (oh yes, and i love that she is eating goldfish, just like her mama. ;) )

    3 years ago · Reply
  • Hayley D
    Hayley D

    So glad to read you've had some great help -- moms make everything better! I really hope those nasty meds are going to be exactly what she needs to fight through this. Crossing everything and hoping for the best! And hope you can get some sleep soon!

    3 years ago · Reply
  • Anne Knutson
    Anne Knutson

    So sorry Lyla has to endure those nasty steroids. Great you have Steve's parents helping out! I miss them - Tulum was so wonderful! I could use a day of their cheer here in Ohio! Auntie Anne

    3 years ago · Reply