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
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
Tuesday, October 19, 2010
I love you my beautiful sister
Thank you for sharing your very first weekend home with me.
What an incredible, courageous, positive, fun, energetic-beyond-words schvester you are!
All weekend long I just couldn't believe I was there with you in Sarasota -- it was like a most delicious dream, and I'm just so glad I didn't have to wake up to an alarm and a rude- awakening that it was time to get up & go somewhere without you -- there we were...it was real!!!
I was hoping to write something for the blog...I'm not sure what I'd write other than this because there are just no words to capture how joyous a weekend it was to know you're HOME and that your smile, appetite, energy, outlook, sweetness, sensitivity, creativity, humor, joie de vivre (I could go on!) are all quite in-tact. So much joy in sharing some of life's simple pleasures...biking, beach walks, art festival, UpWords, cooking & laughing together.
Reading some of the latest posts and especially Jaime's post from the other day, clearly the depth of influence your journey & attitude has had on those who love you is impossible to measure. For you there may be an endless sense of gratitude for all the love & support you've received. While I'm probably not speaking for myself when I say that we wouldn't have had it any other way, I bet that most of us could not have imagined the degree to which our lives too are forever changed ...we have new strength and love, new ways to cope , that we never thought possible. You may think I am the wind beneath your wings as your cell phone sings when I call, but truly you are mine!
I love you to the moon... and back,
Susan
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