Sydni’s Story

Site created on April 3, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.  
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

Update by Syd's mom:  I was disappointed to see that the last update I wrote in November somehow did not post and got deleted so I'll try to briefly recap.  I wanted to thank everyone who has donated to caringbridge, and at the same time clarify that if you have donated to caringbridge it supports their site. (which is a great cause!) Just know it is not a donation to our family.  We ARE NOT presently asking for donations but I needed to clarify because some people have thought they donated to help Sydni's needs and I felt bad to tell them that was not the case. - So quickly, going back a bit, we wanted to share that in November Sydni received a letter and a really cool bee pin from her donor!!!!  This was such a surprise and honestly we didn't know that was allowed until one year after transplant.  It was the most amazing letter and this gives us hope that at some point they can meet.  Sydni and I both wrote back to the donor.  The letters have to go through the Donor Registry coordinator as it has to be confidential at this point.  The letters are not allowed to share any identifying information on either side, although we do know it's an international donor.  It still blows our minds that her life was literally saved by the generosity and sacrifice of a total stranger. - We have been thoroughly enjoying the God given gift of being home for longer periods of time.  Thanksgiving and Christmas at our own home was such a blessing. We're slowly getting organized and settling into some sort of routine.   Sydni's hair is growing back the same beautiful red color although now curly.  Cold and flu season is upon us and has me a bit on edge as I've been informed by her medical team of the possible consequences.  I've been fighting a cold and thus keeping any contact with Sydni to a bare minimum.  It's weird but seriously I've contained myself to my bedroom.  My daughter, Heather, got engaged so that is joyful news and something to celebrate and focus on.  Although, it brought to light how much this horrible disease has really affected our entire family.  Upon Heather's announcement of her engagement I knew I had to sit down my children for a deep discussion.  You see, when we were seeking a bone marrow donor for Sydni, her sister Heather and myself were both tested to see if we were a match.  The results came back that both Heather and I carry the gene for HLH thus would not be able to donate marrow.  So Heather, her finance Travis, Sydni and I discussed that the Dr. stressed how important it is that having the gene means if they ever want biological children they would need to first go to genetic counseling for obvious reasons.  Anyways, I knew at some point I would need to have this discussion but couldn't bring myself to it until it was necessary. One crisis at a time ha ha. Thankfully, both girls and Heather's fiance took it well, discussed options and threw in some good humor as usual.  - We've been blessed with opportunities to help promote marvelous charities and foundations such as the Bald Beauty Project, Ronald MacDonald House Charities of Southern Arizona, Be the Match to name a few.  We strongly believe that anything we can do to have something positive come out of all this is not only our duty but a God given privilege.  Like they say - "pay it forward."   Sydni has had the opportunity to attend her young adult oncology support group sponsored by Courtney's Courage.  It is one of the most helpful things for her.  Yesterday, she had her regular clinic appointment in Tucson. She has proven to be quite a good driver.  The last two trips she drove all the way. Proud mom moment!  Anyways, at clinic they had to clean out her port because they couldn't get it to draw blood.  I'm told this is common.  It's the first time she had it done.  We were told that basically the medicine used to fix the problem is like pouring drano down the sink.  The medicine eats away the calcified tissue/fluids and bingo, the port is able to be accessed again.  Medicine is fascinating that is for sure.  So we are thankful to report her numbers are holding steady. WBC is 2.4.  Her kidney is doing better for the first visit in awhile so that is wonderful.  Her platelets dropped in half but Dr. wasn't concerned.  Her legs have petechiae but it's not bothersome to her. They cut back some medicines and we will cut them more before the next appt.  She's scheduled for brain MRI next month which we are hoping will be the big hallelujah moment we've been praying for.  Syd and myself of course would like nothing more than to be done with her daily blood thinner shot and seizure meds.  / Syd's Child Life Specialist presented her with a very special and significant "Bead of Courage" yesterday.  It's a Survivor Bead.  Needless to say I cried and shared a lot of personal feelings with Sydni.  I hadn't really thought about it until she was given this bead, but it's a beautiful truth I'm grabbing a hold of.  She is that.  She is a SURVIVOR!  I am confident she has crossed the threshold into this new state.  No longer in the daily life threatening critical stage.  Watching all that has transpired this is mind boggling, humbling and surreal.  A miracle granted by a loving God for sure.  Currently Syd is focusing on her online courses, wanting to gain strength through exercise and of course helping with her sisters wedding.  She keeps busy with artwork, wire wrapping stones and making jewelry.  We plan on updating again after the MRI!!!  We are so thankful to God for carrying us through and for each of you! I can't believe it's been 6 months to the day since Sydni's transplant.
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