Posts
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
Year Two
Summer 2006 to Summer 2007
Summer
Alexander was born at the end of June and 3 days later, Ray was sent in for a Bone Marrow Biopsy. Dr. Saba, from Moffit, raised Ray's Cyclosporin to 300 mg. Ray was placed on oral Exjade for his iron overload, but his ferritin soared to over 4000. In August, Dr. Saba referred Ray to Dr. Perez and the BMT team at Moffit. Dr. Perez and her team said that it was too soon for Ray to be seeing them and said that he needed to try other medications to resolve his PRCA.
Fall
Over the Fall, Ray continued under his primary hematoligist's care. After a long abscence in hearing from Dr. Saba and Moffit, we discovered that Dr. Saba had had a heart attack and nobody was following Ray's case.
Winter and Spring
Finally, in February, Ray was re-assigned to Dr. Sokul at Moffit. Dr. Sokul switched Ray to Cytoxan, which he continued to take into Spring, with no response. By February, Ray's liver enzymes were elevated with an ALT of 104 and by March they rose to 140.
Summer
By the end of Summer, Dr. Sokul decides to refer Ray back to the BMT team at Moffit. At that point, his iron overload was beginning to cause beginning signs of liver damage, however, we were not informed of this damage, we only read about it a year later when we received all of the old reports.
Summer
Alexander was born at the end of June and 3 days later, Ray was sent in for a Bone Marrow Biopsy. Dr. Saba, from Moffit, raised Ray's Cyclosporin to 300 mg. Ray was placed on oral Exjade for his iron overload, but his ferritin soared to over 4000. In August, Dr. Saba referred Ray to Dr. Perez and the BMT team at Moffit. Dr. Perez and her team said that it was too soon for Ray to be seeing them and said that he needed to try other medications to resolve his PRCA.
Fall
Over the Fall, Ray continued under his primary hematoligist's care. After a long abscence in hearing from Dr. Saba and Moffit, we discovered that Dr. Saba had had a heart attack and nobody was following Ray's case.
Winter and Spring
Finally, in February, Ray was re-assigned to Dr. Sokul at Moffit. Dr. Sokul switched Ray to Cytoxan, which he continued to take into Spring, with no response. By February, Ray's liver enzymes were elevated with an ALT of 104 and by March they rose to 140.
Summer
By the end of Summer, Dr. Sokul decides to refer Ray back to the BMT team at Moffit. At that point, his iron overload was beginning to cause beginning signs of liver damage, however, we were not informed of this damage, we only read about it a year later when we received all of the old reports.
Year One
Summer 2005 to Summer 2006 Summer 2005
Ray continued to build his pool business, while receiving two blood transfusions every other week. The hematologist kept hoping that this was a temporary condition that would resolve itself.
Fall
Unfortunately, by September, it became apparent that this was not going to go away on its own. Ray was then put on Prednisone in an attempt to stop the Aplasia. Instead of curing his PRCA, the Prednisone just unmasked his diabetes. At this point, we were beginning to fear that Ray would some day need a bone marrow transplant. After reading information on Stem Cells and the side affects of BMT's (infertility), we decided to have another baby and store the stem cells.
Winter
In December, the hematologist decided to try IVIG (Intravenous Gammaglobulin). Ray's bone marrow failed to respond to this treatment after 3 rounds and he was now going into iron overload due to the constant blood transfusions. They began to treat him with Desferal (iron chelation) intravenously for 1 hour after each transfusion.
Spring
In March, the doctors started Ray on Cyclosporin. Although Ray started showing a little response to the Cyclosporin, He was still needing regular blood transfusions.
Summer
Finally, in June, Ray was sent to Moffit Cancer Center to see Dr. Saba.
Ray continued to build his pool business, while receiving two blood transfusions every other week. The hematologist kept hoping that this was a temporary condition that would resolve itself.
Fall
Unfortunately, by September, it became apparent that this was not going to go away on its own. Ray was then put on Prednisone in an attempt to stop the Aplasia. Instead of curing his PRCA, the Prednisone just unmasked his diabetes. At this point, we were beginning to fear that Ray would some day need a bone marrow transplant. After reading information on Stem Cells and the side affects of BMT's (infertility), we decided to have another baby and store the stem cells.
Winter
In December, the hematologist decided to try IVIG (Intravenous Gammaglobulin). Ray's bone marrow failed to respond to this treatment after 3 rounds and he was now going into iron overload due to the constant blood transfusions. They began to treat him with Desferal (iron chelation) intravenously for 1 hour after each transfusion.
Spring
In March, the doctors started Ray on Cyclosporin. Although Ray started showing a little response to the Cyclosporin, He was still needing regular blood transfusions.
Summer
Finally, in June, Ray was sent to Moffit Cancer Center to see Dr. Saba.
Reality Check
Late July 2005
A few weeks after returning from TN, Ray, Hunter, Logan and I were in Orlando at a convention for my work. One night Ray complained of an excruciating headache. This was strange for Ray because he rarely gets sick. He finally decided to go to the ER around midnight. Unfortunately the ER didn't take him seriously, and after waiting over 2 hours with other patients being taken around him, he went back to the hotel. He decided to pack up the kids and head home to see our family doctor.
The next morning, I received a call a call from Ray that our family doctor was admitting him into the hospital because his red blood count was only 4.2. They proceeded to run every test under the sun to determine where he was loosing blood. They finally determined that he was not bleeding anywhere. After doing a bone marrow biopsy, he was diagnosed with Pure Red Cell Aplasia. After 6 units of blood and a week's stay, he was sent home.
A few weeks after returning from TN, Ray, Hunter, Logan and I were in Orlando at a convention for my work. One night Ray complained of an excruciating headache. This was strange for Ray because he rarely gets sick. He finally decided to go to the ER around midnight. Unfortunately the ER didn't take him seriously, and after waiting over 2 hours with other patients being taken around him, he went back to the hotel. He decided to pack up the kids and head home to see our family doctor.
The next morning, I received a call a call from Ray that our family doctor was admitting him into the hospital because his red blood count was only 4.2. They proceeded to run every test under the sun to determine where he was loosing blood. They finally determined that he was not bleeding anywhere. After doing a bone marrow biopsy, he was diagnosed with Pure Red Cell Aplasia. After 6 units of blood and a week's stay, he was sent home.
Prelude to Ray's BMT
July 2005
While vacationing in TN, looking for land, Ray began experiencing headaches and intense fatigue. We just attributed this to him being overweight and physically exerting himself.
While vacationing in TN, looking for land, Ray began experiencing headaches and intense fatigue. We just attributed this to him being overweight and physically exerting himself.
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