Sydni | CaringBridge

Sydni’s Story
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At the age of 6, Sydni had her first hospital stay with no explanation as to the cause.  For the next 9 years, she had episodes of unexplained illnesses increasing in severity and length of hospital stays.  In 2017 migraines prompted the doctors to do an MRI on her brain and spine.Sydni was officially diagnosed with Familial Hemophagocytic Lymphohistiocytosis ( Familial HLH) in March 2018.  Familial HLH is a rare disorder of the immune system.   It is a disorder of widespread accumulation of lymphocytes and mature macrophages, sometimes with hemophagocytosis, primarily involving the spleen, lymph nodes, bone marrow, liver, and cerebral spinal fluid. According to a large population-based study published in Sweden, it was estimated to occur in 1.2 cases per million.   Yes, my baby girl is one in a million.

Newest Update

Journal entry by Sydni Lee

Geri here.  It's been 87 days since Sydni's bone marrow transplant.  It's been almost 6 months since we abruptly left our home, my business, my job, and our "people". It's so surreal.  I must say that you can always rebuild a business and finances, get a new job or find a new home.  So reminding everyone to remember what's important.  God is always good even when the world or circumstances aren't.  Relationships and how we treat others is irreplaceable.  Sydni continues to get stronger and the last two weeks have been a clear sign of her body "holding it's own".  The last two clinic appointments she has not had to have any infusions other than some sodium and her regularly scheduled intravenous gamma globulin (concentrated antibodies to boost her immune system) and Pentamidine (to prevent pneumonia).  Her hair is starting to grow back and she is cute as a little chickadee.  She is scheduled for an MRI on her brain Oct 13 and an MRI on her spine Oct 16.  The results will tell us how well her central nervous system is healing.  I know she is healing because her headaches are getting better and she is walking like a champ!!!!  Up and down stairs several times per day.  So thankful to God I can't even express it.  She remains in good humor.  I tripped up the stairs the other day and without missing a beat she said "I think YOU need some physical therapy"  ha ha  .  The most significant thing I want to share today is that Sydni was released to come home to Payson for a visit a week ago. The visit was amazing and then we went back to Tucson for her clinic appointment.  That went great and she was cleared to come to Payson again!!!  So here I am, sitting on MY porch, in my pajamas drinking coffee.  Laundry is going, music is playing, and I'm just soaking in every little thing.  It's hard to explain what Syd and I are experiencing but there are just so many things that we will never take for granted again.  Like not having to get dressed to go get a cup of coffee and being able to do laundry in my own washing machine without having to wait my turn.  We have thoroughly enjoyed our time with my daughter Heather.  Seeing my girls together and feeling somewhat "normal" has blessed my heart and mind more than you can imagine.  One of my favorite things in life is them hanging out at our home and singing together.  So for a few more days we get to enjoy a taste of home.  I am praying that we can be on a two or three time per month appointment routine by November.  But we will take whatever we get!  So if you don't hear any updates you can assume she is progressing well.  It will take one to two years for her to be 100% but she's come so far!!!! Her white blood count has been a 1. for the last two weeks.  Still extremely low and coming up very slowly, however, overall she is improving.  Her nausea and blood pressure are less frequent issues now.  We want to thank every single person who has been a part of this journey.  I can never name everyone and fear anyone feeling excluded but I have to say a special thank you and praise God for Laura and George Corona, Grandma Linda Lee and Aunt Judy, Expedition and Calvary Chapel, Gail Dawson and all my ladies at Above and Beyond Aesthetics, Mike and Lisa McCannon, Brooklyn Klein, Linda Skeen and crew, all the prayer warriors, Josh Johnson and Ronald MacDonald House Tucson.  We have been showered with love, encouragement, financial support etc. from our family, friends, churches, community and strangers.  I'll never be able to thank everyone enough.  It's so humbling and awkward too.  But please know we are forever grateful and forever changed.
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