10/24/2014 Shylee has lost her fight and has been lifted up by Jesus and is safe in the Kingdom of Heaven.
Please pray for the family during this time of sorrow.
Anyone who feels in their heart to donate to help towards services for Shylee and her resting place may do so through this campaign.
Shylee was born with severe congenital neutropenia or Kostmans Syndrome. She was diagnosed at 3 months old. Since then we have given her a shot everyday to promote white blood cell growth. Up until the last year, the shots have worked but now, for her long term health, she would need a BMT (bone marrow transplant). For the last year we have made several trips to St Judes but have always had to stop because of a virus or something. On our last trip, it was discovered that she had a membrane growth on her heart valve so she underwent open heart surgery about 8 weeks. That operation was a success and she was cleared to continue on with the BMT. She underwent chemo for 10 days, had the BMT transfusion and then on infusion day +9 her system started to crash. She had low blood pressure, which they could not get to raise, and all the other problems that came that. We were told her only chance for survival was to transfer to LeBonheur Children's Hospital and be put on the ECMO bypass machine. We were also told that she was so critical she might not survive the 2 mile trip. She did. They now have her bp stable with meds and now we are trying get kidney,lung and heart function back. As I told you earlier, she has started to produce a very small amount of urine per hour (yay!). Until today, her toes and fingers were black, but color has tarted to return. She is still being kept paralyzed due to the bypass lines in her major arteries. Yesterday an xray of her lungs showed so much fluid you could not see any lung tissue. Today, we can actually see a small amount of tissue (yay again). The infectious disease docs cannot determine whats the cause of the infection that brought this on so it's hard to pinpoint an exact bacteria or virus.
I'm sure I've left out a lot, like her developmental delays And the fact that she's has had a feeding tube since birth.
Through it all, she is the most joyful and happiest child you can imagine! Oh yeah, and she loves Sponge Bob.
Please everyone, Cheney and I would like to ask your help in giving to Shylee's Mom and Dad while they are by Shylee's side in Memphis , TN. This is very far from home for them (Savannah, GA) . Lets give them a little extra help so they don't have to worry about meals, sleep, baths, travel, and things they may need while out of town so long.
Thank you from the bottom of our hearts, God and Shylee appreciate your thoughts and prayers.
The smallest of donations can help if they are all put together !
Your empathy and compassion are so appreciated !
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