Only a few days after being released from the Sarasota hospital, Carol was having mild fevers on and off.
Once they reached over 100.5 I called Moffitt and was told to bring her directly to the BMT floor where she was immediately admited.
She is now being tested to identify the source of her fevers. Tomorrow morning she will finally have the postponed biopsy.
Thank you.
Jaime
Sunday, January 30, 2011
Wednesday, January 26, 2011
Minor update – Carol is back home
Carol was admitted to Sarasota Memorial Hospital last Thursday due to a spike in her temperature. Being neutropenic (insufficient white cells to fight infections) she had to spend 7 days receiving antibiotics via IV’s to get her fever under control.
Now we are home with her fever gone. I will be administering her antibiotics via IV for another 2 weeks (+/-)
The bone morrow biopsy was rescheduled at Moffitt for next Monday the 31st and a visit with Dr. Tomblyn was rescheduled for Friday the 4th.
Then we should find out the biopsy results and discuss future treatment.
I will update in a few days.
Thank you.
Jaime
Now we are home with her fever gone. I will be administering her antibiotics via IV for another 2 weeks (+/-)
The bone morrow biopsy was rescheduled at Moffitt for next Monday the 31st and a visit with Dr. Tomblyn was rescheduled for Friday the 4th.
Then we should find out the biopsy results and discuss future treatment.
I will update in a few days.
Thank you.
Jaime
Sunday, January 23, 2011
Bumpy road
Carol needed to be admitted to Sarasota Memorial Hospital early Thursday morning after she developed a high fever during the night. The doctor on call at Moffitt suggested I take her to the local emergency room instead of driving all the way to Tampa in her condition.
Since she continues having sporadic high fevers and her blood counts remain lower than the minimum required to be released we are still at Sarasota Memorial for at least another couple of days until her condition improves.
The bone morrow biopsy and follow up appointments with Dr. Tomblyn scheduled for tomorrow at Moffitt will need to be rescheduled for a later time to give Carol an opportunity to recover from this bump on the road.
On the lighter side, Carol’s cousin Freddie was visiting during this time. They managed to do a few fun things just for a couple of days before Carol was admitted. Carol felt pretty bad that for the last few days of her visit they weren’t able to go to the places they planned and enjoy walks on the beach but with the hospital stay limitation they had a chance to spend some time together.
Cousins Richard and Cathy Diamond had planned a bird watching trip to Myakka Park and they took advantage to visit Carol on Friday along with Freddie. Their visit lifted all our spirits.
Today Cathy Lankenau came over to visit Carol for a little while, followed by Sybil and Jay later in the afternoon.
So for now Carol is at the Sarasota Memorial Hospital and looking forward to going home soon.
Thank you again to everyone for all your support.
I Will try to update you soon.
Jaime
Since she continues having sporadic high fevers and her blood counts remain lower than the minimum required to be released we are still at Sarasota Memorial for at least another couple of days until her condition improves.
The bone morrow biopsy and follow up appointments with Dr. Tomblyn scheduled for tomorrow at Moffitt will need to be rescheduled for a later time to give Carol an opportunity to recover from this bump on the road.
On the lighter side, Carol’s cousin Freddie was visiting during this time. They managed to do a few fun things just for a couple of days before Carol was admitted. Carol felt pretty bad that for the last few days of her visit they weren’t able to go to the places they planned and enjoy walks on the beach but with the hospital stay limitation they had a chance to spend some time together.
Cousins Richard and Cathy Diamond had planned a bird watching trip to Myakka Park and they took advantage to visit Carol on Friday along with Freddie. Their visit lifted all our spirits.
Today Cathy Lankenau came over to visit Carol for a little while, followed by Sybil and Jay later in the afternoon.
So for now Carol is at the Sarasota Memorial Hospital and looking forward to going home soon.
Thank you again to everyone for all your support.
I Will try to update you soon.
Jaime
Sunday, January 16, 2011
The waiting game
That was what Dr. Tomblyn proposed to Carol this past Monday. Wait until the end of January for another bone morrow biopsy.
Basically another bone morrow biopsy will be done by the end of this month so we can find out if the donor cells are also attacking Carol’s Leukemia cells, aside from last month’s very acute reaction on her skin that caused her to be readmitted to Moffitt for 6 days.
In theory, if the previous bone morrow biopsy was done while the donor cells were in the midst of causing such a reaction on her skin, Dr. Tomblyn’s opinion is that we probably should have postponed the biopsy to allow the donor cells to attack the most needed area. Carol’s bone morrow.
So, in the meanwhile, we are playing the waiting game, regular “biweekly” visits to her local oncologist for lab work until the 24th.
And talking about lab work. For the past weeks Carol’s blood counts for the white, red and platelets stayed +/- level. This past Monday her lab work showed a little increase on the platelets count, reaching 40. It’s not a huge increase, but since this is possibly a sign that Carol is making some of the platelets on her own, it is very encouraging.
One new discomfort area is now in Carol’s thighs and knees. It seems that there is some donor cells ongoing activity in the femur bones that could cause occasional aching pain. With Dr. Tomblyn’s approval, a couple of Tylenol pills can be taken to help with the pain, but only occasionally, otherwise there is a risk of masking a fever.
The past couples of weeks have been pretty busy with family visiting from far and close.
Cousin David flew in from Seattle to stay for a few days, Frankie and Sandy drove in from Boca to visit both, Carol and also David.
Cousin Howard and Gabriella from Colorado visited while in the area for a trade show.
Cousin Freddie is due to arrive to SRQ this afternoon for a week long visit.
Thank you again for all the calls, cards and emails giving Carol tons of encouragement.
Jaime
Basically another bone morrow biopsy will be done by the end of this month so we can find out if the donor cells are also attacking Carol’s Leukemia cells, aside from last month’s very acute reaction on her skin that caused her to be readmitted to Moffitt for 6 days.
In theory, if the previous bone morrow biopsy was done while the donor cells were in the midst of causing such a reaction on her skin, Dr. Tomblyn’s opinion is that we probably should have postponed the biopsy to allow the donor cells to attack the most needed area. Carol’s bone morrow.
So, in the meanwhile, we are playing the waiting game, regular “biweekly” visits to her local oncologist for lab work until the 24th.
And talking about lab work. For the past weeks Carol’s blood counts for the white, red and platelets stayed +/- level. This past Monday her lab work showed a little increase on the platelets count, reaching 40. It’s not a huge increase, but since this is possibly a sign that Carol is making some of the platelets on her own, it is very encouraging.
One new discomfort area is now in Carol’s thighs and knees. It seems that there is some donor cells ongoing activity in the femur bones that could cause occasional aching pain. With Dr. Tomblyn’s approval, a couple of Tylenol pills can be taken to help with the pain, but only occasionally, otherwise there is a risk of masking a fever.
The past couples of weeks have been pretty busy with family visiting from far and close.
Cousin David flew in from Seattle to stay for a few days, Frankie and Sandy drove in from Boca to visit both, Carol and also David.
Cousin Howard and Gabriella from Colorado visited while in the area for a trade show.
Cousin Freddie is due to arrive to SRQ this afternoon for a week long visit.
Thank you again for all the calls, cards and emails giving Carol tons of encouragement.
Jaime
Wednesday, January 5, 2011
Hello My Dear Family & Friends
Although, I have to admit, going home was almost as frightening as going into the hospital, I am SO happy to be home and have my freedom, my surroundings, bed, food and husband, back. I have been healing and getting stronger every day, rash is gone…that’s a miracle!! No more fevers or any other of the problems I went in for, or got, while I was there.
I do wish this had happened at a different time. Alexia, Trevor & Isabella did not get to share with us, the stay-cation we had all envisioned. They were, however, most supportive and more than good sports about having to drive an hour to Moffitt every day where none of us could enjoy Trevor fishing or Bella running around on the beach collecting shells and making castles. I am very in awe of their sweetness & dedication, and help making me feel better, getting things and food to me and just being the best medicine there could have been during that time.
This past Monday I had my normally scheduled appointment with Dr. Tomblyn at Moffitt (I went without my suitcase and made sure to have my precious yoga class). She was very pleased, as are we, that I was doing so well and was anxious to share my blood work results of that day. My white counts had gone from .39 on the 30th to .69 on the 3rd by themselves, as they cannot be transfused. My hemoglobin was holding and so were my platelets. My albumin took a big leap as well (hospital food vs. home cooking) so my nutrition is also on the rise. Due to these results, my doctor told Jaime could stop administering IV antibiotics around the clock and I may or may not need another round of Vidaza (chemotherapy). Also, that it may have been too soon for that frightful biopsy.
Tomorrow, Thursday, I will go to Dr. Chu’s office for my scheduled blood work and hope to see rising numbers. My take is that there was a war waged last week. My donor’s cells became strong enough, after being off all the immune suppressing medications, to fight the Leukemia cells. Sunday I felt peace in my body and I’ve been feeling stronger ever since. Today I even power walked to my normal tunes!
Exceptional Thanks, to my husband who doesn’t leave my side until he knows I’m safe and who cares for me no matter what the circumstances are, and they have not been pretty. And to all who have kept in touch, visited, listened & loved. Thank you.
I look forward to cousin David arriving Sunday for a few days from Seattle followed by Freddie coming from Cape Cod for a whole week after that!
Carol
I do wish this had happened at a different time. Alexia, Trevor & Isabella did not get to share with us, the stay-cation we had all envisioned. They were, however, most supportive and more than good sports about having to drive an hour to Moffitt every day where none of us could enjoy Trevor fishing or Bella running around on the beach collecting shells and making castles. I am very in awe of their sweetness & dedication, and help making me feel better, getting things and food to me and just being the best medicine there could have been during that time.
This past Monday I had my normally scheduled appointment with Dr. Tomblyn at Moffitt (I went without my suitcase and made sure to have my precious yoga class). She was very pleased, as are we, that I was doing so well and was anxious to share my blood work results of that day. My white counts had gone from .39 on the 30th to .69 on the 3rd by themselves, as they cannot be transfused. My hemoglobin was holding and so were my platelets. My albumin took a big leap as well (hospital food vs. home cooking) so my nutrition is also on the rise. Due to these results, my doctor told Jaime could stop administering IV antibiotics around the clock and I may or may not need another round of Vidaza (chemotherapy). Also, that it may have been too soon for that frightful biopsy.
Tomorrow, Thursday, I will go to Dr. Chu’s office for my scheduled blood work and hope to see rising numbers. My take is that there was a war waged last week. My donor’s cells became strong enough, after being off all the immune suppressing medications, to fight the Leukemia cells. Sunday I felt peace in my body and I’ve been feeling stronger ever since. Today I even power walked to my normal tunes!
Exceptional Thanks, to my husband who doesn’t leave my side until he knows I’m safe and who cares for me no matter what the circumstances are, and they have not been pretty. And to all who have kept in touch, visited, listened & loved. Thank you.
I look forward to cousin David arriving Sunday for a few days from Seattle followed by Freddie coming from Cape Cod for a whole week after that!
Carol
Friday, December 31, 2010
Home sweet home….
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.
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.
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
Tuesday, November 30, 2010
New treatment started after Thanksgiving...
This week was amazing (mostly) as we enjoyed the company of Alexia and Isabella from Thursday to Monday. That gave us all much to be thankful for on Thanksgiving :)
As we previously posted, Carol started the new Vidaza treatment on Monday. Nausea and all that follows lingered for the rest of the day, only to subside after some of the medication kicked in late at night time. Another stronger anti-nausea medication was given to her today and so far there are no signs of discomfort. Hooray!!!!
5 more Vidaza treatments are left which will be done by next Tuesday.
Another bone morrow biopsy will be done by the END of December to determine if the results are already sufficient for the next step. Transfuse Lymphocytes from the original donor. Moffitt has already begun with the request procedures.
Saturday Carol needed a blood transfusion to bump up her otherwise low red counts and while having the transfusion at SMH, Alexia and Isabella came to visit and really brighten her day.
The rest of the weekend with Alexia and Isabella was full of fun activities, with a couple of runs to the beach, a visit to the playground and the usual fun at home. For Thanksgiving we were joined by Joe and Joyce (aside from Alexia and Bells). Also enjoyed were the fabulous meals that Carol so diligently had prepared. All organic and homemade.
We're looking forward to Tuesday which will bring the end of the Vidaza treatment as well as our visit with Uncle Teddy and Aunt Judy!
More updates soon.
Thank you.
Jaime
As we previously posted, Carol started the new Vidaza treatment on Monday. Nausea and all that follows lingered for the rest of the day, only to subside after some of the medication kicked in late at night time. Another stronger anti-nausea medication was given to her today and so far there are no signs of discomfort. Hooray!!!!
5 more Vidaza treatments are left which will be done by next Tuesday.
Another bone morrow biopsy will be done by the END of December to determine if the results are already sufficient for the next step. Transfuse Lymphocytes from the original donor. Moffitt has already begun with the request procedures.
Saturday Carol needed a blood transfusion to bump up her otherwise low red counts and while having the transfusion at SMH, Alexia and Isabella came to visit and really brighten her day.
The rest of the weekend with Alexia and Isabella was full of fun activities, with a couple of runs to the beach, a visit to the playground and the usual fun at home. For Thanksgiving we were joined by Joe and Joyce (aside from Alexia and Bells). Also enjoyed were the fabulous meals that Carol so diligently had prepared. All organic and homemade.
We're looking forward to Tuesday which will bring the end of the Vidaza treatment as well as our visit with Uncle Teddy and Aunt Judy!
More updates soon.
Thank you.
Jaime
Monday, November 22, 2010
Starting a new battle
Dear friends and family.
Today we learned that Carol’s Leukemia cell blasts have returned after the chemotherapy and bone morrow transplant she just underwent.
One positive and hopeful sign is that there are still plenty of the donor cells in Carol’s bloodstream to proceed with another milder chemotherapy drug and a Lymphocyte transfusion with the intention to give the remaining donor cells a much needed boost to fight Carol’s stubborn Leukemia cells.
Starting on the 30th of this month (+/-), Carol will be given a chemotherapy drug called Vidaza, which can be administered via IV during a 7 day period, without a hospital stay.
Dr. Tomblyn explained that Vidaza could probably be administered on an outpatient basis at Dr. Chu’s local practice in Sarasota.
We expect this drug to bring Carol’s Leukemia cells into remission and mostly to help avoid the progress of GVHD. (Graft Versus Host Disease)
Only 4 weeks after the GVHD is under control, or “mostly” under control (small % is OK), a Lymphocyte transfusion harvested from her original donor could be transfused.
I know this is a pretty confusing explanation. If anyone needs some clarification, either Daniel or myself will try our best to do it, in person, via email or by phone. Please let us know.
Thank you again to all of you for calling, writing, texting, or just thinking about Carol.
Sincerely.
Jaime
Friday, November 19, 2010
Updating last post...
On Tuesday the 16th, Dr. Tomblyn contacted Carol to inform her that the bone morrow biopsy preliminary results show a relapse of 15% to 20% of Leukemia blast cells.
Dr. Tomblyn is reducing more rapidly the anti-rejection medication (Tacrilimus / Prograf) to avoid suppressing Carol’s immune system.
Specific treatment options will be discussed at our next Monday appointment @ Moffitt.
One of the possible treatments would be the transfusion of new Lymphocytes from the original donor as long as there are no signs of GVHD. These Lymphocytes would need to be harvested and transfused to Carol as a boost to the originally transplanted cells.
In the meantime Carol continues with her usual routines. Exercising with a little moderation and eating only her delicious organic meals.
I will continue updating often.
Thank you.
Jaime
Tuesday, November 16, 2010
Stable Condition
For the past few weeks while being home, Carol’s condition has been pretty much stable.
Just some minor variations of blood count results, which sometimes climb up and others times go a bit lower.
Dr. Tomblyn @ Moffitt continues monitoring her progress weekly and for the most part she recommends some adjustments to her medication to address Carol’s changing blood count results and also to improve the propagation of the donor cells.
The anti-rejection medication she has been taking since the transplant may also be inhibiting the donor’s cells propagation. Constant monitoring the balance between the needs for her anti- rejection medication while giving her new cells bigger chances to propagate.
For this same reason, the steroids regimen she was given for the past weeks were discontinued. And now (without the steroids) the level of energy and appetite are a bit diminished.
While at home, only in one instance, Carol needed blood transfused and it was done at our local hospital, Sarasota Memorial.
Yesterday, the 15th, Carol had another bone morrow biopsy to determine what percentage of new donor cells are in her body now. Preliminary results could take one week. Two weeks for final results. We are shooting for high numbers!!!
In the meantime Carol continues with her healthy habits, exercising a little slower or walking shorter distances, while still cooking and eating the healthiest of foods.
Now for excitement:
At the end of this week we expect our friends, Beth and Ray to visit us.
Next week Alexia and Isabella will visit us from the 25th to the 29th to help us celebrate Thanksgiving and eat a big turkey and all the trimmings!
December 3rd, Marty and Vera will be visiting us while passing through the area for some business.
We look forward to Aunt Judy and Uncle Teddy visiting from the 7th to the 14th of December for lots special family time.
Alexia and Bella, with Trevor this time are returning from the 25th till the 30th of December for their annual holiday visit for family beach and play time!
Cousins Richard & Cathy, while on a trip to bird watching in Myakka Park, will be stopping by or meeting with us somewhere nearby sometime in January.
We want to thank everyone who visits, calls, Skypes, writes, and texts.
Sorry for the less frequent postings. While things have been pretty stable, there hasn’t been much to report.
Thank you all.
Jaime
Tuesday, October 26, 2010
Continuing treatment while at home
For the friends and family that follow this blog, it’s easy to see that for the past couple of months Carol has been feeling great and looking even better. She is without a doubt the best example of how a patient should confront this disease. Never stopping her exercises, walks, yoga, cooking her organic meals and keeping her chin up, higher than anyone else I know.
With things running very smoothly it’s surprising to see that her white cells, red cells, platelets and % of donor’s cells counts were slowly getting lower. Her last biopsy showed 85% of donor’s cells, compared with 97% on her previous biopsy.
Dr. Tomblyn explained that the medications given to Carol to prevent GVHD could also be preventing the donor’s cells from propagating and completely taking over Carol’s cells.
As a result, Dr. Tomblyn is now rapidly reducing Carol’s steroid medication giving the donor’s cells less obstructions to complete their job. Another bone morrow biopsy is scheduled for mid November to see if these steps accomplish their objective. Other medications could also be increased or decreased if needed.
Of course, with the steroids soon gone, some issues may appear, such as digestive, skin, loss of appetite, etc.
Wednesday Carol will be getting a blood transfusion at Sarasota Memorial.
Rowing is on hold until platelets bounce back.
Everything else will continue as before.
More updates as they develop.
Thank you.
Jaime
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