Letter from James and Lynette
July 7, 2007
July 7, 2007 9:18 PM
As many of you know, we are out of the Hospital!!! As much as we love and will miss all of Sydney's caretakers and volunteers, it is so great to be out. Sydney is thrilled to have her own space and continues to make lists of the food that she hopes she will soon eat. "The brothers" (as Sydney calls them), James and Aunt Becky are here and Sydney loves telling them all what to do. I don't think I have even begun to realize what a huge help and joy they bring.
Sydney is still pretty frail and has been fighting a virus and the fungus in her lung as well as high blood pressure. Her discipline still amazes me and though she is not the jovial little girl we once knew, she rallies to face whatever she may be asked to do next. Yesterday it was getting a shot in her leg and spending 10 hours in clinic. Even though the hours in clinic are long, I am so thankful we are able to be out-patient. We are on numerous I.V. medications during the day and hydration at night. It keeps me busy, but I am thankful to have the job.
I feel I am still on a tight rope sometimes. It is stressful, but as long as I don't look down, I can keep moving. When I start to get comfortable with my circumstances, I am tempted to watch everything too closely or try to control what I can, so that Sydney will move in the right direction. It is such a lie and one more deception to cause me to live by sight and not by faith. Any little hiccup and I quickly see my lack of control, my immaturity, my weakness and my need to constantly depend on His power and strength. I also recognize the many ways I still seek comfort and rest from outward things instead of Christ. (Something sweet to eat or T.V. at night - they are harmless in themselves, but I know my motivation in using them). It only makes my life more chaotic and harder to face reality and therefore experience joy.
Christ is the only way. He is my only true hope, my only true comfort, my only true rest, my only true joy, my only true Savior. It is moment by moment, but when I get past myself and my circumstances, I can experience hope in Him and press on.
Be still and know that I am God.
"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."
Psalms 25:4, 5
Show me your ways, O LORD, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long.
You all have been a tool that Christ has used to encourage me. I thank God so much for all of you.
Friday the doctor told us Sydney's galactamanin (fungus indicator) was high. CT scan showed the fungus had increased in the one spot from .9 to 1.2, plus there were a few small spots elsewhere. Liver inflammation or toxicity was upper 200, they have seen it there or close to there before on Sydney. However if it hits 300 they will have to stop the fungus drug. I don't think they have great options if they have to stop the drug. Hypertension has become an issue, because of the steroids and the drug that is treating her adeno virus has beat up her kidneys. When your kidneys don't handle the fluids effectively your heart gets overloaded. They had hoped the virus would be gone by now.
They said, "Sydney is the healthiest looking kid in light of the fungus and virus"
GVHD on the skin is looking good. The stomach GVHD is improving. They are lowering the dose of steroids
Sydney is weak and frail.
Please pray . . .
- We are out of the hospital and all together.
- GVHD is improving.
- That Sydney is completely restored.
- The fungus and viruses are eradicated.
- GVHD goes away quickly never to be seen again.
- Liver, kidney, and heart regain healthy function.