It is a little late,

but, I realized that I hadn't updated this since before the 2nd bone marrow transplant.

As I alluded to in April, Ray's 1st BMT failed to engraft. Because over 60 days had passed from the transplant, they decided to do another full transplant with chemo and everything. Unlike the first transpant, Ray suffered from day 1. The second transplant caused him to get Lymphoma and another type of pneumonia. The lymphoma attacked his intestines and kept him from being able to eat. Finally after about 5 weeks of no food, they put him on TPN (IV nutrition).

On Father's day, we almost lost him. I had left on the Thursday before, to visit my father and Ray was doing better. We even had him walking with a walker. He promised me that he would be even stronger when I returned Sunday evening. However, the morning of Father's Day, I received a call from the PA saying that I needed to hurry back if I wanted to say my goodbyes. I don't think that I had ever been so scared in my life! When I reached the hospital, Ray didn't seem to recognize me. He had a tube down his nose to keep the fluids from backing up in his stomache. This was making it difficult to keep his bipap mask on for his sleep apnea.

The doctors warned me that his breathing would probably continue to deteriorate and we would have to decide whether to put him on life support. They explained to me that most patients from the BMT unit don't ever make it off life support and that if he did, he would not have a very high quality of life. They were basically telling me that it would be kinder to just let him go. I wasn't giving up that easily though. I made the remove the tube to his stomach so that I could get his bipap mask on correctly. I then sat by his side and prayed the entire night. By the next morning, his oxygen saturation was beginning to improve and he recognized me. They had to put the tube back down into his stomach to keep the fluid out, but, he continued to improve over the next few days. We were even able to have a little Birthday party for Alex in the Bone Marrow Unit.

Unfortunately, a few weeks later, the lymphoma perforated Ray's bowel, forcing them to conduct emergency surgery. They warned us that the chances were slim that he would make it through the surgery. But, they did not know my stubborn husband and God's will. Ray not only made it through the surgery, but made it through a second bowel perforation and surgery a few weeks later. In addition, he made it on and off life support throught the month of July.

Due to slow engraftment, Ray was given several boosts of his brother's stem cells. Finally in August, they discharged him to our apartment in Gainesville. Ray was doing pretty well. He was walking with the assistance of a walker and started physical therapy. However, after a week, his left knee started swelling and giving him agonizing pain. Then one day when we were leaving the clinic, Ray slipped and I could not keep him from falling. During the fall, he twisted his knee and he had to be re-admitted. Ray was convinced that he was never going to make it out of the hospital.

Over the next couple months, we tried moving Ray to an acute care hospital (which was a total joke) and a skilled nursing facility. It soon became apparent that there was something else wrong, because Ray was loosing weight very quickly (240 lb in Aug. to 144 lb in Oct.). The doctors determined that Ray was suffering from Graft vs. host in addition to the Pure Red Cell Aplasia, Cirrhosis of the liver, iron overload, lymphoma, pneumonia and knee injury.

In October, I had to move back home and go back to work since our Cobra was getting ready to run out. It was so difficult to leave Ray up in Gainesville. He would call me crying, saying that he was going to die up there all alone. I was completely torn between being home with my kids (whom I had been away from for 9 months), my job and Ray.

By mid October, I had Ray re-admitted to Shands. Within days, he seemed to be doing soooo much better. We actually had a birthday party for him on November 17th and took him outside to watch the kids play. After we left, he called me at least 10 times saying how wonderful his birthday party had been! Ray was obviously feeling better as evidenced by this video he created for me:
http://sendables.jibjab.com/view/eaztLMcNZuAAsy41

A few weeks later, Ray was moved into the new BMT unit at Shands. I was in Pittsburgh so, I didn't get to see his new room, but he said that it was just beautiful. He would get so excited everytime a helicopter would come by his window (he was on the top floor) to land on the roof! A couple of days later, I was told that Ray was going to be able to transfer him to a hospital in Tampa so that he could be closer to home while he went through the rehab to learn to walk again. He was scheduled to be transferred that Friday (Nov 6th) at 10am.

The night before (Nov.5th), we must have called each other 10 times, we were so excited! Then, Friday morning at 5am, Ray called me to say that he had an excrutiating pain in his shoulder and he did not think that he would be going anywhere this weekend. The nurses loaded him up on pain medicine and scheduled him for an x-ray and CT to determine the source of the pain. A few hours later, he called to say that the pain was spreading and that he was really worried that they were not taking him seriously. I spoke with the nurse and she assured me that everything was under control.

From the airport, I called Ray and spoke to his mother. I could hear Ray's breathing in the background and the alarms on his machines going off. His mother told me that they had been going off for over a half hour and the nurses would not come, even though she had paged them several times. I called the nurses station and spoke to the charge nurse who tried to tell me that the beeping was because wasn't keeping his oxometer on. I wasn't buying it, so I asked to speak to the PA. He said that he had been in there earlier in the morning and that Ray should be going down for the CT scan. I told him that I thought Ray was getting worse and I wanted him to check on him.

A few minutes later, Ray's mother called to tell me that the doctors were in the room and that Ray's Oxygen Saturation levels were in the 80's even though he was on oxygen. I could hear the doctors in the background trying to get Ray to keep his mask on. The next thing I know, the doctor is on the phone asking my permission to put him on life support. I said, "Yes, do everything you can to keep him alive until I get there!" For some reason, I thought that if they could just do that, I could pray and will him into recovering as he had all of the other times.

Unfortunately, I could not get a direct flight, so, I did not land in Tampa until 7pm and then had to drive to Gainesville. The moment I walked into the hospital room, I knew it was too late. His body was being kept alive by machines, but he had already joined the lord.