Letter from James and Lynette
September 4, 2007
September 1, 2007
I had one of those dreams that seemed so real, that once I awoke it took a few minutes for me to realize it was only a dream. The dream was of little Sydney talking, she was talking fast and feisty. Then I realized I was in the hospital room and it was only a dream. Later that day I told Lynette about the dream, and she said she had the identical dream. We talked about how hard it was when we realized it was only a dream, but how amazing it was that we had the same dream.
September 3, 2007
Sydney has GVHD all over her skin, and it is terribly itchy. She said three sentences today. I was thrilled, but my optimism is becoming very guarded. She has now gone 48 hrs with no fever. We took her on a walk. She cried and moaned the whole way. After one lap I was positive she would go back to her bed, but to my amazement she chooses to go another lap. Her personality is starting to clearly show up. Lynette and I just moved her back into her bed; she whined with pain and blamed it on me. It was clearly her mom who caused the pain, but after I pleaded my case she still claimed it was definitely my fault. She's back.
This is the first time she has shown pain for three or four weeks. I assume the pain is good, but it's draining to hear her whimper and cry. We have to continually keep her from scratching her skin. Then she throws up. Now she is asleep with a continual cough. We have an MRI of Sydney's head tomorrow.
Now Sydney stopped crying so she could talk to Johnson on the phone, she moans, coughs, and whimpers as they talk. It's mostly him talking, which is nothing new. We keep asking if she wants us to take the phone, she doesn't. Then she says "I love you Johnson", as they hang up. Obviously I am typing through my tears.
We have family coming in and out continually seeing to our every need.
Grateful to you,
I must say, though much of this has been very hard, the past few weeks with Sydney not responding was the most difficult thing I have been through. I would just sit and stare at her. I have always been busy caring for her and it was so hard for me to have nothing to do. I would struggle through prayer. I fought off fear and despair. I questioned everything. I came to the point where I did not have the energy to defend my faith I just believed. I soon felt some peace again. It comes and goes. I know the answer is to keep my eyes on Christ and not on the raging sea. It is so encouraging to remember all of you and your prayers.
This week I am overjoyed to hear Sydney speak, even complain, it is great. Her first words were directed to me when I wanted to sit her in my lap after a walk and she said, "I don't want to sit in your lap". I told her she could do anything she wanted to because she spoke to me. Since then she has spoken more, though not much. I will take whatever she wants to give us. We are now battling to keep a balance of fighting the fungus and finding something that will fight the GVHD that will not suppress her immune system.
Thank you all for continuing to walk this road beside us bringing us encouragement and directing us back to the truth.
Please pray . . .
- Sydney affect is coming back. She is talking.
- The swelling must be going down in her brain.
- No fever.
- MRI looks good.
- GVHD goes away.
- T-cells come in fast.
- No fungus.