So far so good!
Tuesday was a long day getting to Moffitt Cancer Center and checking in. Carol and Jaime got here around 945am and met with Carol's pharmacist, before getting her PICC line installed, which is the tubing that allows fluids to be administered via IV in a semi-permanent port. After that they had to spend hours waiting for the room to be ready. I arrived while they were waiting and around 8pm we got in.
Can't say the room was a very pleasing accommodation. Compared to Sarasota Memorial Hospital and University of Pennsylvania Hospital, these rooms are sub par. On the upper hand many of the nurses and doctors and pharmacists and any other helpers have been very sweet despite that nothing seems to come when it is needed.
Nevertheless to give you an idea of how Carol is doing, an hour or so ago while on her second dose of chemo drugs, she said to the nurse, "Am I on chemo right now?"
Hurray for minimal to no side effects! We're crossing our fingers that it stays this way. She's mainly just tired now but that's all so far and might be because it's near the end of the day.
We really want to especially thank our very special friends Jeri and Oren for the enourmous portion of organic microbiotic home made Healing Miso Soup and brown rice/vegetables that they sent with me for Carol! She doesn't know how she could have survived on the hospital food which is not suiting for a neutropenic patient like herself or anyone trying to maintain a healthy diet. Jaime is also looking at nearby places to get similar organic/microbiotic foods to keep her healthy and well nourished during her stay.
Thanks to everyone for your continued loving support in all forms and again if anyone has any questions about the blood donation information from the last post, feel free to e-mail me!
-Daniel
Wednesday, March 31, 2010
Tuesday, March 30, 2010
BLOOD DONATION
Hello,
Thank you all for your patience with this information.
First, as a brief general update, Carol is at Moffitt Cancer Center preparing to begin the first stages of her treatment and is doing very well so far. Another thing I'll mention for now and in the next post is that we are very very grateful for all of the support we have from you all but while she is at Moffitt she can not receive any kind of Fruit/Vegetable baskets or Plants/Flowers. They will not be brought to her because she is neutropenic and needs to be in isolation because of her low white blood cell counts.
For Donating Blood:
If you have blood type O-, O+, B-, or B+, it can be donated directly to Carol.
If you do not have one of these types, you can still donate blood and let her know that you are doing it for her, but your blood will not be directly donated. It is however, placed into the general pool so it's more symbolic and still greatly appreciated.
Your donation will still need to be analyzed to make sure that it has the best properties to be donated.
You will NEED a "Directed Blood Donation Request Form" filled out by Carol in order to donate. Myself and Jaime will probably keep copies of these to distribute by e-mail, fax or in person.
In order to donate directly to Carol, you will need to donate in Bradenton, FL at Florida Blood Services which is off of Route 301. The address is:
216 Manatee Ave.
Bradenton, FL 34208
If you are too far away to donate directly and you feel that symbolically donating your blood in the way a non-matching donor needs to, there is a rather high fee to ship it, so we hope you are okay with it being a symbolic donation, because we are!
Furthermore, it takes about 3 days for blood to be analyzed before it is sent to Moffitt for Carol.
That is all the information I have gathered so far. If there are any questions I have not answered, please feel free to e-mail me at DanielJGray1@gmail.com or post your question as a comment.
Thanks again,
Daniel
Thank you all for your patience with this information.
First, as a brief general update, Carol is at Moffitt Cancer Center preparing to begin the first stages of her treatment and is doing very well so far. Another thing I'll mention for now and in the next post is that we are very very grateful for all of the support we have from you all but while she is at Moffitt she can not receive any kind of Fruit/Vegetable baskets or Plants/Flowers. They will not be brought to her because she is neutropenic and needs to be in isolation because of her low white blood cell counts.
For Donating Blood:
If you have blood type O-, O+, B-, or B+, it can be donated directly to Carol.
If you do not have one of these types, you can still donate blood and let her know that you are doing it for her, but your blood will not be directly donated. It is however, placed into the general pool so it's more symbolic and still greatly appreciated.
Your donation will still need to be analyzed to make sure that it has the best properties to be donated.
You will NEED a "Directed Blood Donation Request Form" filled out by Carol in order to donate. Myself and Jaime will probably keep copies of these to distribute by e-mail, fax or in person.
In order to donate directly to Carol, you will need to donate in Bradenton, FL at Florida Blood Services which is off of Route 301. The address is:
216 Manatee Ave.
Bradenton, FL 34208
If you are too far away to donate directly and you feel that symbolically donating your blood in the way a non-matching donor needs to, there is a rather high fee to ship it, so we hope you are okay with it being a symbolic donation, because we are!
Furthermore, it takes about 3 days for blood to be analyzed before it is sent to Moffitt for Carol.
That is all the information I have gathered so far. If there are any questions I have not answered, please feel free to e-mail me at DanielJGray1@gmail.com or post your question as a comment.
Thanks again,
Daniel
Friday, March 26, 2010
Just to clarify
This is a basic schedule for Carol's chemotherapy treatment program which all takes place at Moffitt (a 4 week stay, beginning Tuesday, March 30th):
Day 1: Neupogen (To boost white blood cells)
Days 2-6: Chemotherapy (To attempt to force leukemia blast cells into a remission)
Days 7-28: Recovery period
After this, with a successful remission, she should be able to return home and prepare for her bone marrow transplant.
Today, before a nice long walk and several visits from friends, there was a blood test which showed stable results. Carol should be able to wait until she is at Moffitt on Tuesday before having to receive another transfusion.
I'm still trying to get specific info about donating blood. Thanks again for bearing with me and of course thank you all so much for your support and love!
-Daniel
Day 1: Neupogen (To boost white blood cells)
Days 2-6: Chemotherapy (To attempt to force leukemia blast cells into a remission)
Days 7-28: Recovery period
After this, with a successful remission, she should be able to return home and prepare for her bone marrow transplant.
Today, before a nice long walk and several visits from friends, there was a blood test which showed stable results. Carol should be able to wait until she is at Moffitt on Tuesday before having to receive another transfusion.
I'm still trying to get specific info about donating blood. Thanks again for bearing with me and of course thank you all so much for your support and love!
-Daniel
Wednesday, March 24, 2010
Mid-week update...
Hi all, sorry for the wait!
Monday Carol had her second transfusion since February 27th. She received two units of blood to help raise her red cell count. In the afternoon she went for a 3 mile walk to give her new blood a spin.
Tuesday was not very eventful but a good day overall. We went out for a 4 mile walk and got some fresh air and a lively breeze!
In the last post it was discussed that a drug called Vidaza would be used to help bring her condition into a remission. After today's Dr. appointments, we have agreeing advice from Dr.'s Lancet, Chu and Lieber that Carol should instead consider a chemotherapy at the soonest possible time which will be a more aggressive treatment. Dr. Lieber has been giving the best recommendations for supplements and nutrients to keep her organs safe from and combat the side effects of chemotherapy. He also continues to give his most caring support.
The treatment process under a regimen named "CLAG," which comes from the names of the drugs used in the protocol, will begin next week on Tuesday (pending appointment confirmation). It will last 6 days and be followed by approximately 3 weeks of recovery time until Carol is able to come home from the Moffitt Cancer Center where her recovery from the treatment will be closely monitored.
For those of you waiting on details about blood donations, we do now have forms for anyone who is type B+ to make a direct donation. I plan to have full details for all donation scenarios one or two blog posts from today's. Thank you for your patience.
Carol is, of course, continuing her strictly organic diet as well as juicing and vitamin supplements to help her stay super healthy while she waits for treatment.
Thank you all again for your care and support in all forms. We can not say how much every single act is appreciated and what a big smile it puts on my mom's face. If you are unsure of anything you want to ask you may contact me directly at DanielJGray1@Gmail.com
-Daniel
Monday Carol had her second transfusion since February 27th. She received two units of blood to help raise her red cell count. In the afternoon she went for a 3 mile walk to give her new blood a spin.
Tuesday was not very eventful but a good day overall. We went out for a 4 mile walk and got some fresh air and a lively breeze!
In the last post it was discussed that a drug called Vidaza would be used to help bring her condition into a remission. After today's Dr. appointments, we have agreeing advice from Dr.'s Lancet, Chu and Lieber that Carol should instead consider a chemotherapy at the soonest possible time which will be a more aggressive treatment. Dr. Lieber has been giving the best recommendations for supplements and nutrients to keep her organs safe from and combat the side effects of chemotherapy. He also continues to give his most caring support.
The treatment process under a regimen named "CLAG," which comes from the names of the drugs used in the protocol, will begin next week on Tuesday (pending appointment confirmation). It will last 6 days and be followed by approximately 3 weeks of recovery time until Carol is able to come home from the Moffitt Cancer Center where her recovery from the treatment will be closely monitored.
For those of you waiting on details about blood donations, we do now have forms for anyone who is type B+ to make a direct donation. I plan to have full details for all donation scenarios one or two blog posts from today's. Thank you for your patience.
Carol is, of course, continuing her strictly organic diet as well as juicing and vitamin supplements to help her stay super healthy while she waits for treatment.
Thank you all again for your care and support in all forms. We can not say how much every single act is appreciated and what a big smile it puts on my mom's face. If you are unsure of anything you want to ask you may contact me directly at DanielJGray1@Gmail.com
-Daniel
Sunday, March 21, 2010
After a nice visit...
Hello everyone,
Sorry for the delay in updates since Thursday. We were happy to be spending time with Carol's sister, Susan and nephew Jason. We had a wonderful visit with them.
To catch up a bit, on Friday Carol had a blood test and a meeting with Dr. Chu. Her results are slightly lower and a transfusion has been scheduled for early Monday morning (March 22nd) at Sarasota Memorial Hospital. Dr. Chu also discussed his opinions about the bone marrow biopsy results from last Friday's sampling. Again, it is being recommended that Carol begin treatment with minimal postponement. Of the previously mentioned options for treatment, Carol is leaning towards Vidaza as it is the least intense to endure while working for a remission.
Our favorite natural remedies this weekend were Susan and Jason. They flew in to visit and donated lots of love and help wherever they could (out of the house they shared lots of fun activities in beautiful weather. Susan and Carol road bikes, went for long walks in the neighborhood, were joined by myself and Jason for a walk across the Ringling Bridge, around St. Armand's Circle and at the beach where we also searched for and found sharks teeth and sea shells. At home, with some of our help, Susan took over the kitchen and cooked up many delicious, healthy, organic meals with great fresh food that Jaime has been bringing home) =] We are endlessly grateful to have such sweet people in our lives. Here is some proof :) (click to enlarge)
(On Ringling Bridge)
(@Midnight Pass)
This morning Carol, Jaime, Aunt Susan and our friend/neighbor Cathy all enjoyed a Skype call with Alexia, Trevor and Isabella as they found lots of fun and entertaining activities to do from afar.
Many of you have expressed that you would like to help out even more by donating blood for Carol to have and we can't tell you how much this means to us. This is possible and there is a great way for anyone to help out who is interested. I will try to get more details before long, but to our understanding, this is the way it will work. Upon donation, you may request that your blood be used specifically for Carol. If you are the same blood type(B+) as she is, it will be transferred to a blood bank so that she will have your donation when she needs it. If you are not a match, she will still receive a donation. Your blood donation will be used as a "credit" for her use.
Thank you all so much again who have sent your love from near and far in every different way.
-Daniel
Sorry for the delay in updates since Thursday. We were happy to be spending time with Carol's sister, Susan and nephew Jason. We had a wonderful visit with them.
To catch up a bit, on Friday Carol had a blood test and a meeting with Dr. Chu. Her results are slightly lower and a transfusion has been scheduled for early Monday morning (March 22nd) at Sarasota Memorial Hospital. Dr. Chu also discussed his opinions about the bone marrow biopsy results from last Friday's sampling. Again, it is being recommended that Carol begin treatment with minimal postponement. Of the previously mentioned options for treatment, Carol is leaning towards Vidaza as it is the least intense to endure while working for a remission.
Our favorite natural remedies this weekend were Susan and Jason. They flew in to visit and donated lots of love and help wherever they could (out of the house they shared lots of fun activities in beautiful weather. Susan and Carol road bikes, went for long walks in the neighborhood, were joined by myself and Jason for a walk across the Ringling Bridge, around St. Armand's Circle and at the beach where we also searched for and found sharks teeth and sea shells. At home, with some of our help, Susan took over the kitchen and cooked up many delicious, healthy, organic meals with great fresh food that Jaime has been bringing home) =] We are endlessly grateful to have such sweet people in our lives. Here is some proof :) (click to enlarge)
(On Ringling Bridge)
(@Midnight Pass)This morning Carol, Jaime, Aunt Susan and our friend/neighbor Cathy all enjoyed a Skype call with Alexia, Trevor and Isabella as they found lots of fun and entertaining activities to do from afar.
Many of you have expressed that you would like to help out even more by donating blood for Carol to have and we can't tell you how much this means to us. This is possible and there is a great way for anyone to help out who is interested. I will try to get more details before long, but to our understanding, this is the way it will work. Upon donation, you may request that your blood be used specifically for Carol. If you are the same blood type(B+) as she is, it will be transferred to a blood bank so that she will have your donation when she needs it. If you are not a match, she will still receive a donation. Your blood donation will be used as a "credit" for her use.
Thank you all so much again who have sent your love from near and far in every different way.
-Daniel
Thursday, March 18, 2010
Bone marrow biopsy results and current options.
Hello everyone and thanks for your patience in hearing these results.
We all met with Dr. Lancet today at the Moffitt Cancer Center in Tampa and here is what he had to say:
As of today blood work results remained in stable levels.
The biopsy showed Carol having 27% blast cells present. This is, however, still within rationale for use of Vidaza treatment (specifically Dr. Lancet said that as high as 30% blast cell levels have rationale of using this treatment). Dr. Lancet did make it clear that this is an aggressive condition that should be treated with little postponement in order to achieve a remission. Here are the current options as we see them.
1) Vidaza (described more thoroughly in a previous post) may be administered via IV for a period of 7 days and can be done as an outpatient procedure at Sarasota Memorial Hospital. Carol would then have 4 weeks off before repeating the 7 day treatment/4 week break cycle until it is clear whether it is working. If it does not succeed in inducing remission, most of the following options can still be attempted with the exception of the following option and I will explain a little more in its description.
2) At Moffitt, a new clinical study drug can be used in conjunction with standard chemotherapy in the form of an oral tablet taken following chemo. for 4 to 6 weeks. The clinical study drug is specifically designed to treat high risk leukemia because standard chemo may not be as effective in Carol's condition. However, since it is new, there is no proof of any success rate. Also, this treatment is only an option if used as a first choice (otherwise, it is possible to try Vidaza and then standard chemotherapy as well as variations of it if one is unsuccessful).
3) Standard chemotherapy at Sarasota Memorial Hospital for 1 week, plus a 3 week recovery period. Again, if this method is unsuccessful, alternative chemotherapy drugs can be tried.
4) Carol is considering consultations with Dr. Brown, an Arizona-based Naturopathic Doctor who successfully cured himself of cancer without chemotherapy and is a trained oncologist and has additional training in naturopathic medicine. Dr. Lieber and Dr. Brown have agreed to collaborate should the naturopathic remedy approach be employed. This treatment would involve such things as IV vitamin C along with a special cancer-fighting diet that we have already started (using juicing of certain fruits and vegetables as well as other organic foods)
As mentioned in previous postings, a Bone Marrow Transplant will be necessary but the blast cells must go into remission for the transplant to take place and result in the highest probability of an effective cure. The transplant itself is still a high risk procedure but we will be learning more specific information about that from the transplant team when the time comes. Dr. Lancet does feel that Carol's good dieting and exercise habits certainly help here.
There is another appointment tomorrow (Friday, March 19th) for blood work with Dr. Chu to monitor whether a transfusion is needed.
As you can see we are a bit up in the air with this important decision, but pending further consultation with Dr. Chu, Lieber and Brown we will have the knowledge and confidence to make a decision.
Here's a shot of myself, my mom and her sister Susan and nephew Jason who cooked us a delicious salmon dinner tonight for Jaime and Carol's 27th anniversary! (Click to enlarge)
Thank you all so much again for all your caring support in all its forms.
-Daniel
We all met with Dr. Lancet today at the Moffitt Cancer Center in Tampa and here is what he had to say:
As of today blood work results remained in stable levels.
The biopsy showed Carol having 27% blast cells present. This is, however, still within rationale for use of Vidaza treatment (specifically Dr. Lancet said that as high as 30% blast cell levels have rationale of using this treatment). Dr. Lancet did make it clear that this is an aggressive condition that should be treated with little postponement in order to achieve a remission. Here are the current options as we see them.
1) Vidaza (described more thoroughly in a previous post) may be administered via IV for a period of 7 days and can be done as an outpatient procedure at Sarasota Memorial Hospital. Carol would then have 4 weeks off before repeating the 7 day treatment/4 week break cycle until it is clear whether it is working. If it does not succeed in inducing remission, most of the following options can still be attempted with the exception of the following option and I will explain a little more in its description.
2) At Moffitt, a new clinical study drug can be used in conjunction with standard chemotherapy in the form of an oral tablet taken following chemo. for 4 to 6 weeks. The clinical study drug is specifically designed to treat high risk leukemia because standard chemo may not be as effective in Carol's condition. However, since it is new, there is no proof of any success rate. Also, this treatment is only an option if used as a first choice (otherwise, it is possible to try Vidaza and then standard chemotherapy as well as variations of it if one is unsuccessful).
3) Standard chemotherapy at Sarasota Memorial Hospital for 1 week, plus a 3 week recovery period. Again, if this method is unsuccessful, alternative chemotherapy drugs can be tried.
4) Carol is considering consultations with Dr. Brown, an Arizona-based Naturopathic Doctor who successfully cured himself of cancer without chemotherapy and is a trained oncologist and has additional training in naturopathic medicine. Dr. Lieber and Dr. Brown have agreed to collaborate should the naturopathic remedy approach be employed. This treatment would involve such things as IV vitamin C along with a special cancer-fighting diet that we have already started (using juicing of certain fruits and vegetables as well as other organic foods)
As mentioned in previous postings, a Bone Marrow Transplant will be necessary but the blast cells must go into remission for the transplant to take place and result in the highest probability of an effective cure. The transplant itself is still a high risk procedure but we will be learning more specific information about that from the transplant team when the time comes. Dr. Lancet does feel that Carol's good dieting and exercise habits certainly help here.
There is another appointment tomorrow (Friday, March 19th) for blood work with Dr. Chu to monitor whether a transfusion is needed.
As you can see we are a bit up in the air with this important decision, but pending further consultation with Dr. Chu, Lieber and Brown we will have the knowledge and confidence to make a decision.
Here's a shot of myself, my mom and her sister Susan and nephew Jason who cooked us a delicious salmon dinner tonight for Jaime and Carol's 27th anniversary! (Click to enlarge)
Thank you all so much again for all your caring support in all its forms.
-Daniel
Monday, March 15, 2010
Until Thursday...
Hello again,
Today Carol had a blood test with Dr. Chu which he was happy about as platelets are pretty stable from the last visit and white and red cells have decreased, but not significantly. There won't be a need to revisit until Friday. Thursday of course is going to be the next visit to Moffitt Cancer Center to review the results from Carol's last bone marrow biopsy.
Susan and Jason will also be arriving in Tampa the same day, to spend a few days with us. =] Until then, we're making lots of juice with our new juicer and smoothies and other healthy stuff while staying active daily.
Thanks again to everyone for your support!
-Daniel
Today Carol had a blood test with Dr. Chu which he was happy about as platelets are pretty stable from the last visit and white and red cells have decreased, but not significantly. There won't be a need to revisit until Friday. Thursday of course is going to be the next visit to Moffitt Cancer Center to review the results from Carol's last bone marrow biopsy.
Susan and Jason will also be arriving in Tampa the same day, to spend a few days with us. =] Until then, we're making lots of juice with our new juicer and smoothies and other healthy stuff while staying active daily.
Thanks again to everyone for your support!
-Daniel
Sunday, March 14, 2010
The week ahead
Hi Everyone.
Jaime here this time.
Daniel has been doing such a good job with this blog, that I feel kind of guilty stepping in, but I needed to share my angle too.
Carol's newest battle with this “old enemy” is a déjà vu that makes us relive with even more intensity a battle that she already fought and won, not only once, but twice so many years ago.
Nobody I know aside from Carol can take this “bull” by the horns and push it back as much as she has done and continue to do. She is a really amazing and determined fighter.
Every possible vitamin and the healthiest fruits and vegetables are piled up and consumed by Carol in a systematic way. She is feeding herself with the most nutritious diet and exercising a little bit when she can. She is not taking anything laying down.
Carol and I will be celebrating our 27Th. wedding anniversary this coming Thursday. The same day we are set to learn of the biopsy results from her second bone morrow tissue at the Moffitt Cancer Center in Tampa.
We are really hopeful that these results can prove that “chemotherapy” will not be necessary and other medications can be given to her instead.
Monitoring her blood levels is continuing almost daily by her oncologist, Dr. Chu to determine if her white and red cells along with her platelets need transfusions.
On a non medical issue, Carol is looking forward to Susan (sister) and Jason (nephew)visiting her (and us too) for a long weekend.
Anytime that Susan visits Carol, there is such a chemistry floating around that I choose to step aside and watch them both do anything they can, from rowing, bike rides, walks, shop, filling up every minute to the end of each day.
I know this time Susan's visit will revitalize Carol even more that other times, so I am also looking forward to it. Jason is just going to be icing on the cake.
All of your support is strongly felt every step of the way and we are grateful for the unbelievable amount of emails, phone calls, text messages (and soups too) we received. All of them give us a bump in energy and hope, so from the bottom of my heart, thank you so much to every single one of you!!
Sincerely. Jaime
Jaime here this time.
Daniel has been doing such a good job with this blog, that I feel kind of guilty stepping in, but I needed to share my angle too.
Carol's newest battle with this “old enemy” is a déjà vu that makes us relive with even more intensity a battle that she already fought and won, not only once, but twice so many years ago.
Nobody I know aside from Carol can take this “bull” by the horns and push it back as much as she has done and continue to do. She is a really amazing and determined fighter.
Every possible vitamin and the healthiest fruits and vegetables are piled up and consumed by Carol in a systematic way. She is feeding herself with the most nutritious diet and exercising a little bit when she can. She is not taking anything laying down.
Carol and I will be celebrating our 27Th. wedding anniversary this coming Thursday. The same day we are set to learn of the biopsy results from her second bone morrow tissue at the Moffitt Cancer Center in Tampa.
We are really hopeful that these results can prove that “chemotherapy” will not be necessary and other medications can be given to her instead.
Monitoring her blood levels is continuing almost daily by her oncologist, Dr. Chu to determine if her white and red cells along with her platelets need transfusions.
On a non medical issue, Carol is looking forward to Susan (sister) and Jason (nephew)visiting her (and us too) for a long weekend.
Anytime that Susan visits Carol, there is such a chemistry floating around that I choose to step aside and watch them both do anything they can, from rowing, bike rides, walks, shop, filling up every minute to the end of each day.
I know this time Susan's visit will revitalize Carol even more that other times, so I am also looking forward to it. Jason is just going to be icing on the cake.
All of your support is strongly felt every step of the way and we are grateful for the unbelievable amount of emails, phone calls, text messages (and soups too) we received. All of them give us a bump in energy and hope, so from the bottom of my heart, thank you so much to every single one of you!!
Sincerely. Jaime
Friday, March 12, 2010
Daniel's Night Off
Good evening dearest friends and wonderful family! Daniel is out and we gave him the night off from blogging, so you're stuck with me..."the horse's mouth".
This morning was my second bone marrow biopsy, this one done at Moffitt, and the pathologist, who was present during the procedure, showed me and told me it was a very good specimen. I agreed, it was lovely. ;~) Perhaps the Atavan I took had something to do with it? The procedure took about 15-20 minutes and they got me up and out as soon as I opened one eye only half way! From there Jaime wheeled me around, visiting the cafeteria for breakfast and out into the rainy day. He is an excellent driver!
Looking forward to this weekend of no plans to be near any hospital. I really was hoping to row, but it looks like the wind gods are not in our favor and there will be small craft advisories instead. ;~(
Monday I will have my blood work done in SRQ at Dr. Chu's office and Thursday back to Tampa for my results. In the meantime, I will be juicing, smoothie(ing) and eating my way to good healthy blood, and lots of great energy best I can with all the wonderful recomendations from my wonderful Dr. Leiber. Julie's most wonderful chicken veggie soup has given me the strength to write this lengthly blog...so you can blame her!
Immediatley following my appointment on Thursday at Moffitt, we will be swinging by the TPA airport to fetch my sister, Susan and nephew, Jason (he really gets around). That's the most exciting news for now! I can't wait!! I'm planning on Thursday being a wonderful day!! Thank you all for your continued support, love and every text, e-mail, card and phone call. I am so grateful for you all! Love, Carol
This morning was my second bone marrow biopsy, this one done at Moffitt, and the pathologist, who was present during the procedure, showed me and told me it was a very good specimen. I agreed, it was lovely. ;~) Perhaps the Atavan I took had something to do with it? The procedure took about 15-20 minutes and they got me up and out as soon as I opened one eye only half way! From there Jaime wheeled me around, visiting the cafeteria for breakfast and out into the rainy day. He is an excellent driver!
Looking forward to this weekend of no plans to be near any hospital. I really was hoping to row, but it looks like the wind gods are not in our favor and there will be small craft advisories instead. ;~(
Monday I will have my blood work done in SRQ at Dr. Chu's office and Thursday back to Tampa for my results. In the meantime, I will be juicing, smoothie(ing) and eating my way to good healthy blood, and lots of great energy best I can with all the wonderful recomendations from my wonderful Dr. Leiber. Julie's most wonderful chicken veggie soup has given me the strength to write this lengthly blog...so you can blame her!
Immediatley following my appointment on Thursday at Moffitt, we will be swinging by the TPA airport to fetch my sister, Susan and nephew, Jason (he really gets around). That's the most exciting news for now! I can't wait!! I'm planning on Thursday being a wonderful day!! Thank you all for your continued support, love and every text, e-mail, card and phone call. I am so grateful for you all! Love, Carol
Wednesday, March 10, 2010
Another blood work check-up with Dr. Chu
Today Dr. Chu was happy with Carol's blood work and gave us results showing that red and platelet cells were slightly higher so for now a blood transfusion is still not necessary.
My mom and I also had a nice walk in the early evening in some warm weather. =]
Not much else to report for now.
My mom and I also had a nice walk in the early evening in some warm weather. =]
Not much else to report for now.
Tuesday, March 9, 2010
Some notes from the first meeting at Moffitt
This morning Carol and Jaime went to the Moffitt Cancer Center in Tampa for an appointment to review the bone marrow biopsy results and to get a conclusive diagnosis. After reviewing the slides it was decided that the specimens were too diluted. An additional bone marrow biopsy will need to be conducted at Moffitt which will take place this Friday, March 12th at 7am.
The doctor also said that there is a new drug being used in a clinical trial in addition to chemotherapy at the Moffitt Cancer Center that can produce a better outcome. In order to have access to that drug, should Carol need to be treated with chemotherapy, she will receive treatment in Tampa at Moffitt for that 4 week period.
Also, it is possible that the chemicals used in this potential chemotherapy session may not cause hair loss =]
We are all continuing to get great loving support from friends and family and I want to thank you all again.
The doctor also said that there is a new drug being used in a clinical trial in addition to chemotherapy at the Moffitt Cancer Center that can produce a better outcome. In order to have access to that drug, should Carol need to be treated with chemotherapy, she will receive treatment in Tampa at Moffitt for that 4 week period.
Also, it is possible that the chemicals used in this potential chemotherapy session may not cause hair loss =]
We are all continuing to get great loving support from friends and family and I want to thank you all again.
Monday, March 8, 2010
Today's Blood Test
Blood work today is showing low counts of red and white cells and even lower counts of platelets. Dr. Chu says Carol should be fine though and will have another check on Wednesday when she will probably need her next transfusion.
We have continued to receive lovely e-mails, phone calls and comments from friends and family close and far away and are so appreciative for that. Thank you all again for your support
-Daniel
We have continued to receive lovely e-mails, phone calls and comments from friends and family close and far away and are so appreciative for that. Thank you all again for your support
-Daniel
Sunday, March 7, 2010
Power 10
Hi.
First today, a fun morning on Skype with Alexia and Isabella. Then after lots of phone calls from friends and family... Exercise time! Carol had a nice row today with her friend Michael. She was on the water for over an hour rowing about 3 kilometers in some heavy boat traffic and through mangroves. A wonderful day to enjoy before a hectic week.
First today, a fun morning on Skype with Alexia and Isabella. Then after lots of phone calls from friends and family... Exercise time! Carol had a nice row today with her friend Michael. She was on the water for over an hour rowing about 3 kilometers in some heavy boat traffic and through mangroves. A wonderful day to enjoy before a hectic week.
Yes, these pictures were taken today! =]
Saturday, March 6, 2010
Nice Day
Today was pretty relaxing. At first Carol felt a little weak but realized she just needed to eat and drink. She felt just fine after that.
Her friend Pam came over in the afternoon and they went for a nice walk outside and came back feeling refreshed. Later on our friend and neighbor, Cathy came over and they had fun preparing salmon, spinach with cranberries and orange juice, butternut squash and beets for dinner which we all enjoyed =]
Thanks to a great book from Jeri and Oren we now have tons of info on cancer fighting foods and recipes! Yum!
Her friend Pam came over in the afternoon and they went for a nice walk outside and came back feeling refreshed. Later on our friend and neighbor, Cathy came over and they had fun preparing salmon, spinach with cranberries and orange juice, butternut squash and beets for dinner which we all enjoyed =]
Thanks to a great book from Jeri and Oren we now have tons of info on cancer fighting foods and recipes! Yum!
Friday, March 5, 2010
Today's Appt with Dr. Chu
Today was Carol's appointment with Doctor Chu to see if another transfusion was necessary. She is doing well enough to hold off until Monday at which point she will probably need it. This one should be an outpatient procedure done at Sarasota Memorial Hospital. Blood work will be done again on Wednesday to check that everything is going well. She will need to have blood work done frequently to insure that her blood levels don't drop below the minimum markers.
The next part is not certain yet and will be evaluated more deeply on Tuesday at the Moffitt Cancer Center in Tampa at Carol's 8 AM appointment. Dr. Chu did however express that he sees the turnout leaning towards the direction of Acute Leukemia. Since she is so close to the cut-off for making the call on that, it is not certain at this point. It will have to be looked at more closely with Dr. Lancet during her second opinion at Moffitt with results expected around Friday the 12th. Either the chemotherapy or the Vidaza treatments will probably begin by Monday, March 15th. We have learned that the chemotherapy, if needed, can be done at the Sarasota Memorial Hospital as well as the following 3-week recovery period.
What we are pretty certain of is that the Bone Marrow Transplant will be done at the Moffitt Cancer Center at some point (depending on whether or not Chemotherapy is needed). The transplant will leave Carol very fragile and she will need to stay in Tampa at the Moffitt Cancer Center for about 90 days to monitor her recovery. She will spend the time after the transplant in a special recovery facility where constant monitoring can be done.
The next part is not certain yet and will be evaluated more deeply on Tuesday at the Moffitt Cancer Center in Tampa at Carol's 8 AM appointment. Dr. Chu did however express that he sees the turnout leaning towards the direction of Acute Leukemia. Since she is so close to the cut-off for making the call on that, it is not certain at this point. It will have to be looked at more closely with Dr. Lancet during her second opinion at Moffitt with results expected around Friday the 12th. Either the chemotherapy or the Vidaza treatments will probably begin by Monday, March 15th. We have learned that the chemotherapy, if needed, can be done at the Sarasota Memorial Hospital as well as the following 3-week recovery period.
What we are pretty certain of is that the Bone Marrow Transplant will be done at the Moffitt Cancer Center at some point (depending on whether or not Chemotherapy is needed). The transplant will leave Carol very fragile and she will need to stay in Tampa at the Moffitt Cancer Center for about 90 days to monitor her recovery. She will spend the time after the transplant in a special recovery facility where constant monitoring can be done.
Thursday, March 4, 2010
Next Appointment
Hi again.
Thank you all so much for your kind and loving e-mails and comments and phone calls. I hope you all know how much it means to us.
The latest as of today is that there is an appointment set for Tuesday at the Moffitt Cancer Center in Tampa at which time we will find out what exactly we are dealing with and what needs to happen. Until then, we'll continue to take it easy.
As mentioned in the previous post, there's the appointment tomorrow (Friday) to make sure that an additional transfusion is not necessary at this time.
A ton of soup was made tonight which anyone around is welcome to come enjoy with us until it disappears.
Carol is feeling very good and just waiting for some warm weather so that she can get some worry-free fresh air. =]
Hope you're all doing well.
-Daniel
Thank you all so much for your kind and loving e-mails and comments and phone calls. I hope you all know how much it means to us.
The latest as of today is that there is an appointment set for Tuesday at the Moffitt Cancer Center in Tampa at which time we will find out what exactly we are dealing with and what needs to happen. Until then, we'll continue to take it easy.
As mentioned in the previous post, there's the appointment tomorrow (Friday) to make sure that an additional transfusion is not necessary at this time.
A ton of soup was made tonight which anyone around is welcome to come enjoy with us until it disappears.
Carol is feeling very good and just waiting for some warm weather so that she can get some worry-free fresh air. =]
Hope you're all doing well.
-Daniel
Wednesday, March 3, 2010
Introduction
Hello and thank you all for using this Blog so that we can easily keep you all up to speed with my mom's progress.
I'll try to post as often as possible or whenever something changes and Carol, Jaime or Alexia may also make posts but probably myself (Daniel) for the most part.
If we haven't been able to contact you directly, please accept our apology as many things were going on and it was hard to think sometimes about contacting everybody but we greatly appreciate your care and concern and thoughts.
Recently Carol had been a little under the weather and could not figure out why things were not improving after two weeks. She also had some swelling in her ankles so Dr. Lieber ordered blood work on her. The results revealed low counts of her platelet, white, and red cell counts and so he instructed her to go to Sarasota Memorial Hospital for a transfusion of hemoglobin and platelets as well as intravenous antibiotics on Saturday, February 27th. During her stay she needed a total of four units of blood. These cells are normally produced in the bone marrow and for some reason this wasn't happening properly. It was certainly not a fun night but she had visits throughout the night from her nurse to complete her transfusion and deliver medicine. Then she spent a few more days getting rest and had a bone marrow biopsy on Monday, March 1st.
During all this time, Jaime had been stuck in the middle of a business trip in Las Vegas. He had been trying to get a ticket back ASAP, but he ended up not being able to arrive until Wednesday morning after a few long days with little sleep at the airport. I stayed at the hospital with my mom for the first night and visited every day after work until bed time and made sure she had anything she needed from home.
She was allowed to come home on the 2nd and on the 3rd we received a call from her oncologist, Dr. Chu, with results from the biopsy. At this point we are aware of two possibilities which will be determined by a specialist at the Moffitt Cancer Center in Tampa as soon as she can get an appointment there which is TBD. She will also have blood tests this Friday, the 5th to determine whether she will need another transfusion.
If Carol's bone marrow biopsy reveals a count of less than 20% of "leukemia blast cells" she may have Myelodysplastic Syndrome which is the better of the two possibilities. It would require her to have a Bone Marrow Transplant but it will not need to be rushed as she can first be treated with an injected medication called "Vidaza" for some period of time to prevent progression to Acute Leukemia. We are hoping that after the transplant she would be pretty much finished with the whole ordeal.
If her tests reveal over 20% of these "blast cells" then the diagnosis will be that she has Acute Leukemia. This would require her to begin more intense Chemotherapy immediately (within a week or so) which would likely take place at the Moffitt Cancer Center, in Tampa for about 3 weeks where she would have the 8th best facility in the United States for this sort of thing and the proximity of supporting loved ones to keep her strength where she would need it, versus flying out of state for a slightly higher rated facility which is risky and not being able to have the same support. She will still need the Bone Marrow transplant.
The best donors for the transplant are her siblings, Michael and Susan. So they are going to be evaluated by a test called HLA Typing to see if they are a match for her. If not, we are told that the donor would then be searched from a "bank" of registered volunteers as well as any other friends and family who want to be tested in case they can be matched as a donor.
That said, Carol's spirits are high and so are her doctor's. She's been through similar things before so she is not panicked because she has an idea of what to expect from here on out, though it could be rough. It is common for this to happen to patients who are treated with chemotherapy, but normally it occurs within 7 years of treatment. It has been about 14 years since Carol's treatment. Some of us are guessing that this is thanks to what great physical care she takes of herself through her exercise and diet.
Thank you all for taking the time to read this and for any comments, etc. that you make. Many of you have expressed your concern and offered to help and even visited at the hospital as well as here at our home and we all feel really lucky to have such great friends and family supporting us. Thank you so much.
Also I should mention that Carol is currently neutropenic so there are some precautions/guidelines to take when visiting as you can see in the link there. Here is one more link to explain some of the proper diet and care of a neutropenic patient.
I'll try to keep this up to date and you're all welcome to e-mail me at danieljgray1@gmail.com if you wish to ask something more directly. There are links to the right of this blog to help you get notified about new posts and comments.
I have had to update this a few times so I will start to note here when the last update was made. Currently this post has been updated as of 9:04AM March 4th.
-Daniel
I'll try to post as often as possible or whenever something changes and Carol, Jaime or Alexia may also make posts but probably myself (Daniel) for the most part.
If we haven't been able to contact you directly, please accept our apology as many things were going on and it was hard to think sometimes about contacting everybody but we greatly appreciate your care and concern and thoughts.
Recently Carol had been a little under the weather and could not figure out why things were not improving after two weeks. She also had some swelling in her ankles so Dr. Lieber ordered blood work on her. The results revealed low counts of her platelet, white, and red cell counts and so he instructed her to go to Sarasota Memorial Hospital for a transfusion of hemoglobin and platelets as well as intravenous antibiotics on Saturday, February 27th. During her stay she needed a total of four units of blood. These cells are normally produced in the bone marrow and for some reason this wasn't happening properly. It was certainly not a fun night but she had visits throughout the night from her nurse to complete her transfusion and deliver medicine. Then she spent a few more days getting rest and had a bone marrow biopsy on Monday, March 1st.
During all this time, Jaime had been stuck in the middle of a business trip in Las Vegas. He had been trying to get a ticket back ASAP, but he ended up not being able to arrive until Wednesday morning after a few long days with little sleep at the airport. I stayed at the hospital with my mom for the first night and visited every day after work until bed time and made sure she had anything she needed from home.
She was allowed to come home on the 2nd and on the 3rd we received a call from her oncologist, Dr. Chu, with results from the biopsy. At this point we are aware of two possibilities which will be determined by a specialist at the Moffitt Cancer Center in Tampa as soon as she can get an appointment there which is TBD. She will also have blood tests this Friday, the 5th to determine whether she will need another transfusion.
If Carol's bone marrow biopsy reveals a count of less than 20% of "leukemia blast cells" she may have Myelodysplastic Syndrome which is the better of the two possibilities. It would require her to have a Bone Marrow Transplant but it will not need to be rushed as she can first be treated with an injected medication called "Vidaza" for some period of time to prevent progression to Acute Leukemia. We are hoping that after the transplant she would be pretty much finished with the whole ordeal.
If her tests reveal over 20% of these "blast cells" then the diagnosis will be that she has Acute Leukemia. This would require her to begin more intense Chemotherapy immediately (within a week or so) which would likely take place at the Moffitt Cancer Center, in Tampa for about 3 weeks where she would have the 8th best facility in the United States for this sort of thing and the proximity of supporting loved ones to keep her strength where she would need it, versus flying out of state for a slightly higher rated facility which is risky and not being able to have the same support. She will still need the Bone Marrow transplant.
The best donors for the transplant are her siblings, Michael and Susan. So they are going to be evaluated by a test called HLA Typing to see if they are a match for her. If not, we are told that the donor would then be searched from a "bank" of registered volunteers as well as any other friends and family who want to be tested in case they can be matched as a donor.
That said, Carol's spirits are high and so are her doctor's. She's been through similar things before so she is not panicked because she has an idea of what to expect from here on out, though it could be rough. It is common for this to happen to patients who are treated with chemotherapy, but normally it occurs within 7 years of treatment. It has been about 14 years since Carol's treatment. Some of us are guessing that this is thanks to what great physical care she takes of herself through her exercise and diet.
Thank you all for taking the time to read this and for any comments, etc. that you make. Many of you have expressed your concern and offered to help and even visited at the hospital as well as here at our home and we all feel really lucky to have such great friends and family supporting us. Thank you so much.
Also I should mention that Carol is currently neutropenic so there are some precautions/guidelines to take when visiting as you can see in the link there. Here is one more link to explain some of the proper diet and care of a neutropenic patient.
I'll try to keep this up to date and you're all welcome to e-mail me at danieljgray1@gmail.com if you wish to ask something more directly. There are links to the right of this blog to help you get notified about new posts and comments.
I have had to update this a few times so I will start to note here when the last update was made. Currently this post has been updated as of 9:04AM March 4th.
-Daniel
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