Here is a picture of the gang!! Thanks to Brian and Jennifer Bentley for getting everyone together in North Alabama to raise the money to sponsor a hole and here is the banner.

09/14/07

Hi Everyone,We had a long trip to San Antonio, but we are home safe and sound!! Thank you for all of your prayers!! We had an entire day of tests on Thursday and we met with multiple doctors and a case manager for about 4 to 5 hours on Friday. Everyone was very nice and helpful. They do realize that Daniel is a "critical" case with an extreme medically rare condition ... the metal allergies. The team asked us to stayover until Monday in order to bring an Immunologist / Hematologist into the loop of medical doctors. All afternoon on Friday we were re-arranging hotel accommodations, rental car, and airline tickets. God was so merciful and madeall three of those a smooth transition. We were not charged any penalties and did not loose our discounted rate at our hotel. The immunologist / hematologist said we had 2 options that are drastic, but we need to weigh all the risks and benefits. First of all we could treat him much like an organ transplant recipient and give him immuno suppressive therapy. That is to block the allergic reaction to the titanium. However, that is extreme in Daniel's case because if he were to get sick, he would not have an immune system to fight the germ and with his very poor lung function it would most likely be life threatening. The other option she talked about was a stem cell transplant through a bone marrow transplant. That would be like re-wiring his immune system. The best match possibility would be through a brother first or a sister. Well, Matthew has Type 1 Diabetes. That could be dangerous forhim if he were even a match. If one of the kids are a match, then we would have to implant titanium in the healthy child to see if they would have an allergic reaction. If they did not, then we do the bone marrow transplant. She said allof this is extremely risky to Daniel and possibly if not probably life threatening. However, if we do nothing, and his scoliosis and kyphosis continue to progress and lung function continues to decline, Daniel will not make it to age 14. Age 14 is the earliest they would want to try to do a spinal fusion to permanently stop the scoliosis and his growth. Either way we are faced, once again, with life and death decisions for Daniel.We are still trying to process all this information. Bill and I would appreciate your prayers for us and these decisions as well as your prayers for Daniel. Dr. Campbell, in San Antonio, will be at a National Scoliosis Research Society meeting next week. He is taking Daniel's case to this group to discuss what to do for Daniel. Hopefully he will receive some helpful input. They are a research group so hopefully someone or a combination of great minds will be able to figure something out. All of the children only know that we had to stay and talk with an extra doctor. They have not asked any questions, and there is no need for them to know the gravity of the situation we now face. I believe that there is some truth to "ignorance is bliss". Thank you for all of your prayers and outpouring of support!! We could NOT make it through this without each and every one of you!!! Daniel's golf tournament is coming up on Sept. 22nd, and we are looking forward to a fun day. We are praying for God to provide what we need, nothing more and nothing less. It looks like we will be facing more trips to Texas and extreme medical costs due to the rarity of this situation. We would love to see you there if you could make it. I truly want it to be a celebration of Daniel!! He is a miracle gift from God and we are praying for a miracle, one way or another.I love all of you!!Dawn