Letter from James and Lynette
June 3, 2007
June 3, 2007 3:31 PM
Dear Faithful Friends,
I cannot believe it has been over 5 weeks in the hospital. I feel like I have been reminded over and over again this stay of all of the ways God has sustained and carried me. It was very difficult to return, when Sydney had been doing so well. I told James I felt like the Israelites. I was starting to complain about waiting at the apartment, explaining to God that we were ready to go home now. So it was really hard when we ended up back here with so much diarrhea that Sydney could only eat bread (or what I call manna) and then a three day fast. I was easily discouraged. One morning, during our 2nd week, Sydney had been crying with stomach pain, I was tempted to numb myself with T.V. or anything rather than journal. I opened my journal and a verse fell out. "One day Jesus told his disciples a story to illustrate their need for constant prayer and to show them that they must never give up." Luke 18:1. Once again God was showing me the way to go.
If I call on my faith of a mustard seed (which He has given me, and I am not worthy), it is not long before I feel God's amazing peace that calms my worry. He has given me strength again and the desire to sing praises in the morning. It is not always easy. I am embarrassed to admit my struggle with discouragement sometimes. After all He has provided the most incredible doctors, nurses and volunteers. I have never been here alone. I had my mother and mother-in-law making fresh bread for Sydney that took 5 hours to rise and bake. Now Aunt Marcee is doing the baking. My other sisters, sister-in-laws and brother are constantly serving me and Becky has moved in to my house and has taken over my responsibilities at home with the help of Easter. My friends are carpooling and taking care of my children and their activities including Drivers-Ed! We have countless others who have kept us nurtured and fed. I am so blessed. Yet, as disgusting as it is, I continue to struggle with my own flesh and weakness. My first response to adversity is still disappointment. Hopefully the time it takes for me recognize my weakness and my need for Him has shortened. When I get out of the way, His hope is amazing and I can see the truth in Psalm 126:3, "The Lord has done great things for us, and we are filled with joy." He has done great things and continues to do great things!
The boys are growing and becoming so responsible. I know He is working in Sydney. She is already a miracle. She continues to amaze me. When she was told that she couldn't eat, after a brief cry, she began writing out all of the food she would serve at her party when she returned to the apartment. It took hours to plan all of the details. She hasn't stopped talking about food and planning. One morning I was asleep and woke up to her perched at the top of her bed on the phone ordering breakfast for both of us. Each night I hear her give her very patient nurses instructions on how to mix her medicines and she then asks for Benadryl to help her sleep! She is asking the doctors daily to let her know when she can leave. She is on steroids, but seems to only be moody in the morning. Beware to those who try to engage her before 10 or 11. She likes to have mommy time, her Bible study and then she paints. She has become quite the artist. My prized possession and an answer to prayer is a drawing she did. It is a sketch of the hospital with her bed and figure in the window. A smiling star is above the building and she has written at the side, "Jesus is watching over me." Praise the Lord!
This past week she has felt stronger and the fasting helped. Her diarrhea is better and we were able to visit the apartment on two separate occasions for about 5 hours. It was great for all of us. I am sure Sydney will ask daily when she will be able to go back again. She is not afraid to ask anything.
I continue to thank our Lord Jesus Christ for all of you.
1 Thessalonians 5:16-18
"Rejoice Always; Pray without ceasing; In everything give thanks; for this is God's will for you in Christ Jesus."
I arrived in New York a week ago with James and Johnson. Sydney had just completed a three day fast that was made 10 times harder because of the steroids. She couldn't wait to eat, and she was told to start slow and only eat bread. I am sure that was a big disappointment to Sydney, but Lynette is so good at preoccupying and distracting, that it was tolerable. The next day, no diarrhea. Then we introduced banana and she had a little diarrhea. OK, she's not healed, but this was better than the three liters of diarrhea she had been having. The next day she was back on bread only. We struggled with disappointment. Then Sydney was allowed to visit the apartment for four hours. What a morale boost. Yesterday, the diarrhea was minimal. One more time we appear to be gaining altitude.
The doctors don't like to predict, or I think they are committed to being honest When I try to get them to tell me that we are going to get over something, they can't commit, so I come back with, "It is likely we will get over the graft verses host disease (gvhd)?" "Yes, but . . . ." I hate the "but." The gvhd and the steroids suppresses the immune system, therefore she is at risk for infection.
A couple of days ago a test that can reveal fungus advancement began to rise. They increased a drug to defend, but the drug has a difficult time unless it's is accompanied by some of her own immune system. Her immune system is dropping.
Sydney has been in more dangerous spots than this, and she was miraculously spared. Lynette was talking with the head doctor about Sydney's fungus at transplant. He said it was the most severe he had ever seen, and then they purposely destroyed her immune system for the transplant. The fungus should have killed her then. Lynette said to the doctor it was miraculous. He agreed. Lynette is convinced that God put on her heart that He will restore Sydney. So we try to not walk by sight, but by faith. I find this very difficult much of the time.
Lynette and Sydney are amazing. For the last year our boys have now spent most of their vacation time hanging around a hospital room, playing what Sydney wants to or watching Hello Kitty. They almost never complain. We have many friends and family that keep our wheels from coming off. God has truly sustained us through them.
Please pray . . .
- Skin gvhd is almost gone.
- Diarrhea has greatly improved.
- Infections have been held in check.
- Sydney is a miracle.
- For all the kids on our floor (and that we will be of some help to them.).
- Gvh-d goes away completely.
- No infections.
- That we trust God not by sight, but by faith.
- God is glorified.
- That we will be in Dallas soon.