Letter from James
August 17, 2007
August 17, 2007 4:57 PM
Wednesday, it was time to head to the airport, Johnson and I said goodbye to Lynette, Becky and Marcee. It was very painful to leave. Sydney is battling so many problems; I don't know were to start. She has been running fever on and off for days. Saturday they put in a feeding tube in through her nose, it's taped to the side of her face. It gags her at times, and she finds it irritating. She is having diarrhea, probably due to the feeding tube formula. Another disturbing change is that she has recently become incontinent. One eye has a clogged tear duct from all the bloody noses and causes pain. Her eye stays partially closed most of the time, and that is disconcerting. She rarely says a word and that distresses us, however we think that the feeding tube hurts when she talks, or at least that is what we hope it is.
With a knot in my throat we head to the airport. An hour before we left for the airport they did an MRI. At the ticket counter Johnson hands me the phone. It's Lynette, in a voice that is eerily calm." The MRI showed", then the phone was dead, was the call dropped or was she crying. Did I hear, "tumors." I knew it is usually bad news when test results come back quickly. I tell Johnson to stay with the luggage and I head to the exit trying to establish the call. Lynette said, "no, not tumors, lesions, probably fungus". I go get Johnson and head back to the hospital. One more time the thoughts go through my mind, that Sydney is not going to live or if she does it is going to be in some kind of disabled state.
I am praying. I don't know whether I should pray for her to live? Or should I pray for to go to heaven, so she could be out of pain. Then it dawns on me to pray God's will be done, so I hear in my head, "may your DAMN will be done". Normally this kind of thought might freak me out, but not right at this moment. I have had numerous crises of faith, but I come back pretty quickly, because when the smoke clears, I do believe Christ is the way; however I am not too crazy about His ways, sometimes. I'm almost to the hospital and in my noisy cluttered thinking I hear a quiet voice say, "I am going to restore her". It took me a couple of seconds to focus on what I heard. I had been busy thinking about what I needed to do once I arrived on the ninth floor. It was an odd and out place thought.
Sydney acting almost lobotomized. There is very little connection going on with her. The next day we have an EEG to see if she has had some kind of seizure. The head nurse excitedly came back and reported no seizure. A sensitivity report just came back on the lung fungus biopsy. The fungus drug we are using is totally ineffective on the fungus in her lung which is probably the same fungus in her head. The good news is they have a drug that is very effective against the confirmed fungus.
The head doctor who is not working on the floor this month just came by to check on Sydney and us. Sydney adores her doctors, especially the Big Kahuna, who is a big, lovable grandfather type. He appeared strained at her "nobody home response" to him. Her eyes were almost completely closed the whole visit. As he was leaving he said, "I love you Sydney"; and her eyes instantly opened wide.
We are now at a medication level that will allow her immune system to come back.
We are grateful for your continued prayers and concern,
Please pray . . .
- GVHD has not surfaced.
- We did not have to surgically put in a feeding tube.
- Lungs clear.
- ADNO virus is finally under control.
- That the fungus in her head be immediately eradicated.
- No GVHD.
- She be quickly and completely restored to health.
- That Lynette's strength and spirit holds up.