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Ray came over to Orlando with me to attend a conference. We brought the kids and planned on seeing the Blue Man Group tomorrow night with the kids. Unfortunately, his arm started hurting and swelling, so we went to the ER. It turns out that he had a deep blood clot in his arm from his pic line. The doctor decided to remove the pic line and admit him for the night to try to break up the clot (to prevent an embolism). Of course Ray's main concern was whether he would be out in time for the Blue Man Show. The doctor said, "yes, if the clot goes away in time."
We head back up to Shand's Monday evening for his BMT work-up. Hopefully this won't delay the transplant again!!!
Friday, January 23, 2009
Sunday, January 4, 2009
New Year's Update on Ray
Ray finished up 6 weeks of chemo around December 19th. His doctor called on Christmas Eve with Ray's latest lab reports and said that it looks like the chemo did not work. He will be taking Ray's case back in front of the Bone Marrow Transplant Board in January.
Obviously Ray became extremely depressed over this news, so we all did everything we could to cheer him up. Ray's biggest wish was to see snow, so, I booked us a week's stay at a family resort ranch in New York. We flew to New York the day after Christmas. We spent 5 days at the resort horse back riding, snow skiing and tubing, enjoying shows, good food and campfires. On our last day, we drove into the city and saw the sites with my cousin and her partner. This was the most energy and fun I had seen Ray have in a very long time! We had a blast.
We are now home recuperating from our trip. Ray wanted to stay longer, but it was time to come home and face the music. We ask for your prayers in Ray's next step in this journey.
Obviously Ray became extremely depressed over this news, so we all did everything we could to cheer him up. Ray's biggest wish was to see snow, so, I booked us a week's stay at a family resort ranch in New York. We flew to New York the day after Christmas. We spent 5 days at the resort horse back riding, snow skiing and tubing, enjoying shows, good food and campfires. On our last day, we drove into the city and saw the sites with my cousin and her partner. This was the most energy and fun I had seen Ray have in a very long time! We had a blast.
We are now home recuperating from our trip. Ray wanted to stay longer, but it was time to come home and face the music. We ask for your prayers in Ray's next step in this journey.
Wednesday, November 12, 2008
Week One of Chemo
Ray received chemo on Monday and today. So far he is very sore (muscle aches) and exhausted. They added some steroids to his infusion today and that seems to be helping the aches. We are optimistic and praying that this works!
Monday, November 3, 2008
Back on the Roller Coaster
Well, after being derailed for a couple weeks, we finally heard from Shands late last week. Ray's doctor wants to try one more type of chemo for 6 weeks before moving to transplant. Of course my insurance denied the claim, so now the BMT team has to fight our insurance company. Fun, fun, fun!
They decided to try the new chemo because they are still very concerned about the transplant. The doctor said that if they blast his immune system too hard, he could go into liver failure. But, if they use a lower dose chemo, his own immune system might come back and fight the transplanted immune system. So, we are praying that this last round of chemo will prevent him from having to go through the transplant. Now we are just waiting for insurance approval and then we will be heading to Shands for 6 weeks.
They decided to try the new chemo because they are still very concerned about the transplant. The doctor said that if they blast his immune system too hard, he could go into liver failure. But, if they use a lower dose chemo, his own immune system might come back and fight the transplanted immune system. So, we are praying that this last round of chemo will prevent him from having to go through the transplant. Now we are just waiting for insurance approval and then we will be heading to Shands for 6 weeks.
Wednesday, October 22, 2008
Not so good news :(
We finally heard back from Shands today and the liver doctors did not like the looks of Ray's liver. Now he has to get another liver biopsy. The case manager did not seem very optimistic. It looks like there is a good chance that he will be turned down for the BMT.
I am frustrated, because MD Anderson in TX had already agreed to take him and we went with Shands because it was in Florida. Now it looks like we might have to move to TX for a 4-5 months if we have to go to MD Anderson. :(
I am frustrated, because MD Anderson in TX had already agreed to take him and we went with Shands because it was in Florida. Now it looks like we might have to move to TX for a 4-5 months if we have to go to MD Anderson. :(
Sunday, October 19, 2008
Year Four
Summer 2008 to October, 2008
Summer
By the end of the Summer, Ray's ferritin was down to 2600 and his ALT was 43.
Fall
Ray was scheduled to have his BMT workup the last week in September. They planned to hospitalize him Oct. 10th and Oct. 17th would be Day Zero for his BMT. Unfortunately, on the second day of Ray's evaluation, it became apparent that his port had an infection. It was determined that he needed emergency surgery to remove the port. Ray spent the next week in the hospital on IV antibiotics and for Gram Negative Rods Infection and Serratia. After running a 104 temperature for several days, the infection finally started to go away.
Last week we returned to Shands to complete Ray's BMT workup. We are now waiting for the word to move forward with the transplant.
Summer
By the end of the Summer, Ray's ferritin was down to 2600 and his ALT was 43.
Fall
Ray was scheduled to have his BMT workup the last week in September. They planned to hospitalize him Oct. 10th and Oct. 17th would be Day Zero for his BMT. Unfortunately, on the second day of Ray's evaluation, it became apparent that his port had an infection. It was determined that he needed emergency surgery to remove the port. Ray spent the next week in the hospital on IV antibiotics and for Gram Negative Rods Infection and Serratia. After running a 104 temperature for several days, the infection finally started to go away.
Last week we returned to Shands to complete Ray's BMT workup. We are now waiting for the word to move forward with the transplant.
Saturday, October 18, 2008
Year Three
Summer 2007 to Summer 2008
Summer
Ray went back to Dr. Perez and the BMT team at Moffit at the end of the summer. Once again, she felt that not enough had been done to treat Ray and suggested that he try other immunosuppresive therapies. Ray had given up going to Dr. Sokul by this time, because everytime we went to see him, it was as if it was the first time he had met Ray.
Fall
Logan's 3rd Birthday
After Ray was rejected by Moffit's BMT team for a second time, we asked for a 2nd opinion. We met with Dr. Cogle at Shands. He agreed that we should try a few more therapies, but that we shouldn't wait too long, or Ray's organs might start sustaining too much damage to do the BMT. Ray's Ferritin had increased to over 5000, so Dr. Audeh finally put him on a subcutaneous pump for desferal 24hrs/5days a week to help his iron overload.
At the end of October, Dr. Audeh put Ray on Rituxin. Thankfully, somebody donated 3 rounds of treatment at $5,000 each (our insurance refused to cover it). Unfortunately, Ray got a bad infection from the subcutaneous pump and had to discontinue the 24/5 desferal. Ray was kept on Exjade and received Desferal via IV after transfusions, but this did not seem to be helping.
Winter
In December, we finally got sibling match results from Ray's brother and sister. They were both a perfect 10/10 match. The BMT team said that they would explore the option of a transplant, but that he needed to get his diabetes and iron overload under control.
Christmas 2007
Spring
That Spring Ray met with Dr. Kulman to have a port placed in his chest so that he could receive 24/5 Desferal iron chelation. The surgery was schuled for the beginning of March, but had to be postponed due insurance issues (my company was bought out by another company and our Cobra was not set up in time for the surgery).
Barbados March 2008
The Port was finally placed at the end of March and Ray was placed on 24/5 Desferal. By that time, Ray's ferritin had increased to over 7000. Ray was scheduled to have a BMT at the end of May. However, during his BMT work up in April, Ray's liver enzymes were elevated with his ALT being 166. As a result, Moffit decided to perform a liver biopsy. on May 21st, we were informed that Ray was no longer a candidate for a BMT because he now had cirrhosis of the liver from all of the iron overload. Dr. Perez said that there was nothing more they could do and that he had about a year to live. She said that there was nothing that he could do to improve his liver and that he would never be a BMT candidate in the future no matter what he did.
Needless to say, we were devestated! However, I was not going to accept this diagnosis, and proceeded to BMT clinics all over the country. I also demanded that Ray be bumped up to 24/7 iron chelation. Within a month, Ray's ferritin went from over 8000 to 3000. Ray also went on a strict Diabetes diet and lost 20 lbs, while getting his blood sugar under control.
Disney Spring 2008
Summer
In June, Ray went to see a liver doctor name Dr. Mitchell. Dr. Mitchell said that he was very impressed with Ray's progress in just one month and felt that he should still be considered a candidate for a BMT. He recommended that we go back to the BMT team at Shands and the Ray continue to take steps to improve his liver function. By July, Ray had his ALT down to 48 from 166. We then went to see Dr. Cogle at Shands, who felt that with Ray's progress, he should be a candidate for a BMT within a couple months.
Beachhouse Summer 2008
Alex's 2nd Birthday
Summer
Ray went back to Dr. Perez and the BMT team at Moffit at the end of the summer. Once again, she felt that not enough had been done to treat Ray and suggested that he try other immunosuppresive therapies. Ray had given up going to Dr. Sokul by this time, because everytime we went to see him, it was as if it was the first time he had met Ray.
Fall
Logan's 3rd Birthday
After Ray was rejected by Moffit's BMT team for a second time, we asked for a 2nd opinion. We met with Dr. Cogle at Shands. He agreed that we should try a few more therapies, but that we shouldn't wait too long, or Ray's organs might start sustaining too much damage to do the BMT. Ray's Ferritin had increased to over 5000, so Dr. Audeh finally put him on a subcutaneous pump for desferal 24hrs/5days a week to help his iron overload.
At the end of October, Dr. Audeh put Ray on Rituxin. Thankfully, somebody donated 3 rounds of treatment at $5,000 each (our insurance refused to cover it). Unfortunately, Ray got a bad infection from the subcutaneous pump and had to discontinue the 24/5 desferal. Ray was kept on Exjade and received Desferal via IV after transfusions, but this did not seem to be helping.
Winter
In December, we finally got sibling match results from Ray's brother and sister. They were both a perfect 10/10 match. The BMT team said that they would explore the option of a transplant, but that he needed to get his diabetes and iron overload under control.
Christmas 2007
Spring
That Spring Ray met with Dr. Kulman to have a port placed in his chest so that he could receive 24/5 Desferal iron chelation. The surgery was schuled for the beginning of March, but had to be postponed due insurance issues (my company was bought out by another company and our Cobra was not set up in time for the surgery).
Barbados March 2008
The Port was finally placed at the end of March and Ray was placed on 24/5 Desferal. By that time, Ray's ferritin had increased to over 7000. Ray was scheduled to have a BMT at the end of May. However, during his BMT work up in April, Ray's liver enzymes were elevated with his ALT being 166. As a result, Moffit decided to perform a liver biopsy. on May 21st, we were informed that Ray was no longer a candidate for a BMT because he now had cirrhosis of the liver from all of the iron overload. Dr. Perez said that there was nothing more they could do and that he had about a year to live. She said that there was nothing that he could do to improve his liver and that he would never be a BMT candidate in the future no matter what he did.
Needless to say, we were devestated! However, I was not going to accept this diagnosis, and proceeded to BMT clinics all over the country. I also demanded that Ray be bumped up to 24/7 iron chelation. Within a month, Ray's ferritin went from over 8000 to 3000. Ray also went on a strict Diabetes diet and lost 20 lbs, while getting his blood sugar under control.
Disney Spring 2008
Summer
In June, Ray went to see a liver doctor name Dr. Mitchell. Dr. Mitchell said that he was very impressed with Ray's progress in just one month and felt that he should still be considered a candidate for a BMT. He recommended that we go back to the BMT team at Shands and the Ray continue to take steps to improve his liver function. By July, Ray had his ALT down to 48 from 166. We then went to see Dr. Cogle at Shands, who felt that with Ray's progress, he should be a candidate for a BMT within a couple months.
Beachhouse Summer 2008
Alex's 2nd Birthday
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