Just a brief update.
Yesterday Carol was released from Moffitt after spending 6 days having some treatment to control the spiking fever and a very intense rash.
Aside from being bummed for having to go back to the hospital, these were exactly the same days Alexia, Trevor and Isabella arrived for a visit.
Since Carol couldn’t be home, Alexia, Trevor and Isabella made the trip to Moffitt each day to spend a few hours visiting Carol.
Being released from Moffitt was not a given, but since Dr. Tomblyn believes that Carol is a very reliable patient, it was OK for her to go home and continue with the antibiotics regimen be given via IV at home as if she were at the hospital.
The specially prepared antibiotics were delivered last night and this morning a nurse from SRQ came by to teach us how to give Carol the IV meds.
So here we are hunkered down and ready to see the ball drop. (if we manage to stay up)
Thank you again to everyone that reaches out to Carol in many different ways.
Jaime.
Friday, December 31, 2010
Wednesday, December 29, 2010
Plan B
Hello All,
As you know, Trevor, Isabella, and I arrived on Friday, December 24th.... the same day that my mom was admitted into the hospital. We have been taking it day by day. The fever has been up and down and the antibiotics that she was given led her to an opportunistic bacterial infection (C DIFF) which was treated by different antibiotics. She has had a rash, which they say is due to GVHD and is being treated with topical creams. Today, the doctor came to give preliminary results of the biopsy. It showed 30% blasts, which is up from 20% since the last biopsy. The plan is to get the bacterial infection under control and begin another round of Vidaza to try to reduce the blasts. Another biopsy will be taken in late January. While not great news, we are hoping that another round will reduce the blasts and that the donor cells will continue to take over and do what they need to do. The doctor stated that the rash may be a sign that they are beginning to take charge...and since they just started giving her the rash and fever it may be too soon to tell. In the meantime, Trevor, Isabella and i have been spending most of our time at the hospital. Bella has packed her toys up and taken her show on the road. Grandmom has taught her a few new games and she has also taught some to grandmom. There has been dress up, dancing and even some singing. Grandmom has been very busy with Bella and we have enjoyed watching them interact...and give us a break from daily candyland...Please continue to send strong good vibes our way.
Thanks
Alexia
As you know, Trevor, Isabella, and I arrived on Friday, December 24th.... the same day that my mom was admitted into the hospital. We have been taking it day by day. The fever has been up and down and the antibiotics that she was given led her to an opportunistic bacterial infection (C DIFF) which was treated by different antibiotics. She has had a rash, which they say is due to GVHD and is being treated with topical creams. Today, the doctor came to give preliminary results of the biopsy. It showed 30% blasts, which is up from 20% since the last biopsy. The plan is to get the bacterial infection under control and begin another round of Vidaza to try to reduce the blasts. Another biopsy will be taken in late January. While not great news, we are hoping that another round will reduce the blasts and that the donor cells will continue to take over and do what they need to do. The doctor stated that the rash may be a sign that they are beginning to take charge...and since they just started giving her the rash and fever it may be too soon to tell. In the meantime, Trevor, Isabella and i have been spending most of our time at the hospital. Bella has packed her toys up and taken her show on the road. Grandmom has taught her a few new games and she has also taught some to grandmom. There has been dress up, dancing and even some singing. Grandmom has been very busy with Bella and we have enjoyed watching them interact...and give us a break from daily candyland...Please continue to send strong good vibes our way.
Thanks
Alexia
Monday, December 27, 2010
Happy about visits but not happy about being back at Moffitt
Carol’s sister Susan spent almost 9 days with us, from Thursday the 17th to the 24th.
Obviously Susan is always giving the best imaginable support to Carol with whom she shares the same taste for almost any activity, exercise, food, and most of all a great sense of humor. Aside from being of so much support to Carol, Daniel and I also receive a good amount of support in any many ways, and we all appreciate it immensely.
When I took Susan to the Tampa airport I then picked up Alexia, Trevor and Isabella who flew in from PA miraculously at the same time Susan was leaving (after last minute flight change at the Philly airport).
Soon after Alexia, Trevor and Bella arrived home, Carol started running above normal temperature and developed a skin rash. When Carol's temperature reached 100.5 I contacted the BMT clinic at Moffitt and was told to bring her to the hospital to make sure she doesn’t have an infection. Her white cell counts are extremely low, so it’s important to be very cautious is very susceptible to infections.
It was good that we came to Moffitt. Carol’s temperature spiked to 102.9 and the rash spread all over her body. The doctor at Moffitt said that it’s something they see with patients who are tapered of the anti rejection medications for the GVHD.
Carol was given antibiotics via IV and topical cream to control the symptoms. She needs to stay at the hospital for a few days to better monitor her symptoms. So we are at Moffitt since the 24th at midnight and mostlikely will be here until the 28th., when her bone morrow biopsy was already scheduled.
Yesterday, Alexia Trevor and Bella visited Carol at the hospital and we all had a great time.
Thank you.
Jaime
Obviously Susan is always giving the best imaginable support to Carol with whom she shares the same taste for almost any activity, exercise, food, and most of all a great sense of humor. Aside from being of so much support to Carol, Daniel and I also receive a good amount of support in any many ways, and we all appreciate it immensely.
When I took Susan to the Tampa airport I then picked up Alexia, Trevor and Isabella who flew in from PA miraculously at the same time Susan was leaving (after last minute flight change at the Philly airport).
Soon after Alexia, Trevor and Bella arrived home, Carol started running above normal temperature and developed a skin rash. When Carol's temperature reached 100.5 I contacted the BMT clinic at Moffitt and was told to bring her to the hospital to make sure she doesn’t have an infection. Her white cell counts are extremely low, so it’s important to be very cautious is very susceptible to infections.
It was good that we came to Moffitt. Carol’s temperature spiked to 102.9 and the rash spread all over her body. The doctor at Moffitt said that it’s something they see with patients who are tapered of the anti rejection medications for the GVHD.
Carol was given antibiotics via IV and topical cream to control the symptoms. She needs to stay at the hospital for a few days to better monitor her symptoms. So we are at Moffitt since the 24th at midnight and mostlikely will be here until the 28th., when her bone morrow biopsy was already scheduled.
Yesterday, Alexia Trevor and Bella visited Carol at the hospital and we all had a great time.
Thank you.
Jaime
Wednesday, December 22, 2010
Update from Jaime and Susan
Hi everyone.
Sorry for not updating lately. Carol is doing very well, continuing visits to her Moffitt and local doctors for routine lab work and blood or platelet transfusions when needed. Over the past two weeks she had one blood and two platelet transfusions.
On her last visit to Moffitt, Dr. Tomblyn was optimistic and explained that one of the markers on Carol’s lab results called LDH that is aligned with leukemia cell production has been trending downward since she removed anti-rejection and a few other meds from her regimen, giving donor cells a better chance to take over. Needless to say, all optimistic reports are very welcome and make the light at the end of the tunnel much brighter.
Next bone morrow biopsy is scheduled for December 28th, and based on the results we learn on our following visit January 3rd Dr. Tomblyn will determine next steps.
It’s possible as discussed earlier that her doctor may recommend giving her original donor’s cells a “lymphocytes boost”, which requires harvesting them from her young European donor and transfusing them to Carol. But it’s too early to tell -- Dr. Tomblyn will not make a decision prior to seeing the bone morrow biopsy results.
Meanwhile Carol is continuing with her regular routine, walking, yoga, organic foods, etc. She is also tremendously enjoying the visits of so many family and friends that have been here one after the other since who knows when.
Judy and Teddy spent a few days visiting last week. Tons of reminiscing about years back.
Now Sister Susan is here. Walks on the beach and in the neighborhood, yoga at home or at Moffitt, cooking home or eating out, games of Upwords. The two are going and going and going………….(Susan: I had reported to Dr. Tomblyn that Carol’s energy at times seems to totally defy her counts which are expectedly low. One would think “only her blood knows for sure” but Carol’s mind over matter takes charge!).
Last Friday we were invited to Donna and Joe’s. Friends Brooke, Ron and Alex were there, along with a few other friends. We all had a great time, not to mention the delicious food -- it was a joy to be out socializing with Carol feeling good.
This Friday, Susan will head back to NJ as Alexia, Trevor and Isabella, will be arriving for a week-long visit. Everyone is looking forward to belated Hanukkah and birthday (Alexia) celebrations and of course celebrating just being together.
Posted by Jaime & Susan
Sorry for not updating lately. Carol is doing very well, continuing visits to her Moffitt and local doctors for routine lab work and blood or platelet transfusions when needed. Over the past two weeks she had one blood and two platelet transfusions.
On her last visit to Moffitt, Dr. Tomblyn was optimistic and explained that one of the markers on Carol’s lab results called LDH that is aligned with leukemia cell production has been trending downward since she removed anti-rejection and a few other meds from her regimen, giving donor cells a better chance to take over. Needless to say, all optimistic reports are very welcome and make the light at the end of the tunnel much brighter.
Next bone morrow biopsy is scheduled for December 28th, and based on the results we learn on our following visit January 3rd Dr. Tomblyn will determine next steps.
It’s possible as discussed earlier that her doctor may recommend giving her original donor’s cells a “lymphocytes boost”, which requires harvesting them from her young European donor and transfusing them to Carol. But it’s too early to tell -- Dr. Tomblyn will not make a decision prior to seeing the bone morrow biopsy results.
Meanwhile Carol is continuing with her regular routine, walking, yoga, organic foods, etc. She is also tremendously enjoying the visits of so many family and friends that have been here one after the other since who knows when.
Judy and Teddy spent a few days visiting last week. Tons of reminiscing about years back.
Now Sister Susan is here. Walks on the beach and in the neighborhood, yoga at home or at Moffitt, cooking home or eating out, games of Upwords. The two are going and going and going………….(Susan: I had reported to Dr. Tomblyn that Carol’s energy at times seems to totally defy her counts which are expectedly low. One would think “only her blood knows for sure” but Carol’s mind over matter takes charge!).
Last Friday we were invited to Donna and Joe’s. Friends Brooke, Ron and Alex were there, along with a few other friends. We all had a great time, not to mention the delicious food -- it was a joy to be out socializing with Carol feeling good.
This Friday, Susan will head back to NJ as Alexia, Trevor and Isabella, will be arriving for a week-long visit. Everyone is looking forward to belated Hanukkah and birthday (Alexia) celebrations and of course celebrating just being together.
Posted by Jaime & Susan
Tuesday, December 7, 2010
Vidaza was completed today
The last few days were filled with good visits, starting with Bari (Carol’s sweetest Yoga teacher) who drove in from Tampa to spend some time with Carol. They ran into town for some fun and ended up walking on Siesta Beach.
Later that day, our long time friends from Pennsylvania, Marty and Vera, took a ride from Sanibel (there for business of course) and visited us for a wonderful evening, sharing stories, laughs, music and Thai food.
Today, Carol’s Aunt Judy and Uncle Teddy arrived for a visit, so we got to catch up with them and will no doubt be sharing a few outings with them in the next week while they're here.
Now back to Carol’s progress.
Fortunately the change in the medication to fight the discomfort of this latest chemotherapy drug calmed down after all. Only the first day of chemotherapy caused some discomfort (nausea +), but when Dr. Chu changed her to a different anti-nausea medication, no more uncomfortable symptoms from the Vidaza were felt.
With 7 days of the Vidaza treatment completed today, Carol will need to wait a few weeks to have another bone morrow biopsy. A few days after that we will learn how the Vidaza treatment contributed to suppressing the Leukemia blast cells, so Carol can be cleared for a transfusion of her donor's lymphocytes. We hope to find out this Monday, December 13th if they were able to contact her and if she has agreed to donate these cells. Lymphocytes would then be harvested in Europe from the original donor and flown to the US/Moffitt to be infused into Carol’s blood stream.
For now Carol will continue with the same routine, visiting her SRQ doctor on Thursdays and the Moffitt doctor on Mondays.
More updates soon.
Thank you.
Jaime
Later that day, our long time friends from Pennsylvania, Marty and Vera, took a ride from Sanibel (there for business of course) and visited us for a wonderful evening, sharing stories, laughs, music and Thai food.
Today, Carol’s Aunt Judy and Uncle Teddy arrived for a visit, so we got to catch up with them and will no doubt be sharing a few outings with them in the next week while they're here.
Now back to Carol’s progress.
Fortunately the change in the medication to fight the discomfort of this latest chemotherapy drug calmed down after all. Only the first day of chemotherapy caused some discomfort (nausea +), but when Dr. Chu changed her to a different anti-nausea medication, no more uncomfortable symptoms from the Vidaza were felt.
With 7 days of the Vidaza treatment completed today, Carol will need to wait a few weeks to have another bone morrow biopsy. A few days after that we will learn how the Vidaza treatment contributed to suppressing the Leukemia blast cells, so Carol can be cleared for a transfusion of her donor's lymphocytes. We hope to find out this Monday, December 13th if they were able to contact her and if she has agreed to donate these cells. Lymphocytes would then be harvested in Europe from the original donor and flown to the US/Moffitt to be infused into Carol’s blood stream.
For now Carol will continue with the same routine, visiting her SRQ doctor on Thursdays and the Moffitt doctor on Mondays.
More updates soon.
Thank you.
Jaime
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