Daniel, again, stepped up and took care of Mom for the couple of days he was off from work. He did the same last week, and offered to spend his days off here next week as well.
All the nurturing we put into him while growing up is now showing the results.
He is being very strong and supportive of Carol and me, and aside from being there for us, he brings a lot of fun and pride to both of us, but under the circumstances most importantly for Carol.
Carol is slowly but surely regaining a bit of her new normality. Not to say she’s completely back to normal in every way, but compared with the few days while the chemo got into her body, she is feeling better, looking better, eating better and eager to go out for walks and yoga.
The head of the integrative medicine department asked Carol if she would agree to a video interview where she would be asked about her experiences and her thoughts about the therapeutic benefits of yoga, and massage. During the filmed interview, they taped Carol while at Yoga and massage sessions. They also had a Q&A taped session about the benefits of these two activities.
Needless to say, her stay here at Moffitt would have been unbearable if it weren’t for being able to take advantage of these wonderful activities. Hours before any of these sessions you can see Carol’s excitement building up knowing in advance how much she will enjoy every minute.
Today Carol’s long time friend Beth and her husband Ray took a 3.5 hr (each way) drive for a nice visit.
It made our afternoon into the evening most enjoyable with non-stop catching up and conversation. They also kept up with Carol’s never-ending need to exercise, so then we all walked around the USF campus enjoying a beautiful evening. Their visit filled Carol’s heart with precious memories of so many special moments.
Now a update: Medication and transfusions are part of Carol's every day routine. Next week another bone marrow biopsy will be performed to determine whether the blast cells are either completely gone or at less than the 5% mark.
Once this is accomplished and a match is determined, we start preparing for the BMT (bone morrow transplant). Of course the next immediate goal is to reach over 500 neutrophils so we can go home for a visit!
In the meantime, Carol plans on being home for her much anticipated visit of...guess who? Yes, you guessed right. Isabella with her mom, Alexia and dad, Trevor will be in for a few days arriving on May 29th.
Be back soon
Thank you.
Jaime
Thursday, April 29, 2010
Wednesday, April 28, 2010
Bouncing Back
Hi all,
Carol's been feeling better and better starting yesterday. She had a physical therapist come in and check her progress with a stroll around the hospital floor. A few hours later she got disconnected and we went for a 50 minute walk around the USF campus before settling down. While she was hooked up she re-taught me to play Rummy and I taught her some Texas Hold 'Em. Her appetite has also been fully back as of yesterday. So, overall it's been a quick return to her normal self and she is happy to show it =]
So far today she's had a whole cheese omelette and a cup of coffee and some juice, all for breakfast. We're looking forward to another walk around the campus grounds and more food and games and talking on the phone, for her. Jaime comes back later to reclaim his spot for a couple more nights. Then Cathy will visit for the weekend so she and Carol can have girl-fun :P
Hope all is well with you all and thanks again for everyone's support and love.
-Daniel
Carol's been feeling better and better starting yesterday. She had a physical therapist come in and check her progress with a stroll around the hospital floor. A few hours later she got disconnected and we went for a 50 minute walk around the USF campus before settling down. While she was hooked up she re-taught me to play Rummy and I taught her some Texas Hold 'Em. Her appetite has also been fully back as of yesterday. So, overall it's been a quick return to her normal self and she is happy to show it =]
So far today she's had a whole cheese omelette and a cup of coffee and some juice, all for breakfast. We're looking forward to another walk around the campus grounds and more food and games and talking on the phone, for her. Jaime comes back later to reclaim his spot for a couple more nights. Then Cathy will visit for the weekend so she and Carol can have girl-fun :P
Hope all is well with you all and thanks again for everyone's support and love.
-Daniel
Monday, April 26, 2010
Chemo Boost done
Today was the last day of the chemotherapy boost and gave Carol a difficult time with all the discomfort associated with nausea, etc. Hopefully the drugs will flush out of her body and she will feel better soon.
Aside from the chemo, she is also given two units of blood to raise her cells counts. One just finished and another one is on its way, so it will be given to her until the late hours tonight.
With the chemo discomfort there was no appetite to speak off, but around 7 pm she enjoyed a small cup of a delicious organic chicken broth that her friend Jeri dropped off today while she had to accompany one of her students to the Shiners’ hospital just around the corner.
I will be on a mission to make her eat and drink plenty for the next few days.
Like with the earlier protocol, on the 14th day of this treatment another bone morrow biopsy will be done. We should expect to have partial results around May 7th. (+/-)
In the meantime Carol will be given antibiotics to fight any infections, and transfusions of blood and/or platelets as needed.
Her planned in room Yoga class had to be skipped today, but there is another one already scheduled for Wednesday. I am sure that in no time Carol will be dragging me to the USF grounds for her much needed exercise. I am looking forward to that :)
Thank you again for all your calls and emails.
Jaime
Aside from the chemo, she is also given two units of blood to raise her cells counts. One just finished and another one is on its way, so it will be given to her until the late hours tonight.
With the chemo discomfort there was no appetite to speak off, but around 7 pm she enjoyed a small cup of a delicious organic chicken broth that her friend Jeri dropped off today while she had to accompany one of her students to the Shiners’ hospital just around the corner.
I will be on a mission to make her eat and drink plenty for the next few days.
Like with the earlier protocol, on the 14th day of this treatment another bone morrow biopsy will be done. We should expect to have partial results around May 7th. (+/-)
In the meantime Carol will be given antibiotics to fight any infections, and transfusions of blood and/or platelets as needed.
Her planned in room Yoga class had to be skipped today, but there is another one already scheduled for Wednesday. I am sure that in no time Carol will be dragging me to the USF grounds for her much needed exercise. I am looking forward to that :)
Thank you again for all your calls and emails.
Jaime
Sunday, April 25, 2010
Chemo rerun
Hi everyone.
On Friday Carol started with the chemotherapy’s boost protocol that will extend until Monday.
This is a shorter version of the earlier protocol, but since the chemotherapy drugs build up on the body, its side effects are expected to be a bit more intense.
Carols cousin Freddie visited on Saturday. Freddie was in Florida visiting her sister on the east coast so she had to borrow a car and drove close to 2.5 hours each way to see Carol.
The visit gave Carol a great boost and both were having a great time. Aside for reminiscing for hours they also took advantage of a small break in between her chemotherapy IV’s and both went for a short walk on the USF campus.
Carol and Freddie self portrait…….
On Friday Carol started with the chemotherapy’s boost protocol that will extend until Monday.
This is a shorter version of the earlier protocol, but since the chemotherapy drugs build up on the body, its side effects are expected to be a bit more intense.
Carols cousin Freddie visited on Saturday. Freddie was in Florida visiting her sister on the east coast so she had to borrow a car and drove close to 2.5 hours each way to see Carol.
The visit gave Carol a great boost and both were having a great time. Aside for reminiscing for hours they also took advantage of a small break in between her chemotherapy IV’s and both went for a short walk on the USF campus.
------------------------------------------------------------------------------------
Carol and Freddie self portrait…….-------------------------------------------------------
During most of Saturday, Carol had close to no discomfort, but in the evening and during the night nausea and heartburn disrupted her otherwise nice day.
It's now early Sunday and another round of chemo will start at 9am.
We hope it’s better managed by medications so Carol doesn’t have a lousy day.
Thank you again to everyone of you who continue calling or writing.
Jaime
It's now early Sunday and another round of chemo will start at 9am.
We hope it’s better managed by medications so Carol doesn’t have a lousy day.
Thank you again to everyone of you who continue calling or writing.
Jaime
Friday, April 23, 2010
Boost needed
Hello family and friends.
As we knew at the begging of Carol’s chemotherapy treatment, if the needed results were not accomplished with one cycle of the treatment, another boost of the same medication would be required to further reduce the remaining blast cells to below the 5% target. This time the chemotherapy will be given during 3 days instead of the 5 days it took the first time.
The remaining timeline for this treatment is a Déjà vu of the first one.
On the 14th day, a bone morrow biopsy will be done to make sure that the blast cells have been hit below the 5% mark. This is by no means a setback as some of you may have thought, but a booster to the original protocol.
Carol will probably skip a couple of walks on the beautiful grounds of the USF campus but not the yoga classes, they have been rescheduled for in room sessions. Massages will begin again on Tuesday. She is already hopping to make up the outdoor walks after she is done with the first few days of the chemo medication discomforts, which we all hope will be managed by medications.
Today we had a nice midday walk around the hospital grounds and after Carol finished her shower, the massage therapist knocked at the door. It was perfect timing.
This evening Carol will be given Neupogen to raise her white cell counts as well as during the next 3 days of chemotherapy.
Again we want to thank everyone for all your continued inquiries and well wishes.
I will continue updating you as often as possible.
Thank you.
Jaime
As we knew at the begging of Carol’s chemotherapy treatment, if the needed results were not accomplished with one cycle of the treatment, another boost of the same medication would be required to further reduce the remaining blast cells to below the 5% target. This time the chemotherapy will be given during 3 days instead of the 5 days it took the first time.
The remaining timeline for this treatment is a Déjà vu of the first one.
On the 14th day, a bone morrow biopsy will be done to make sure that the blast cells have been hit below the 5% mark. This is by no means a setback as some of you may have thought, but a booster to the original protocol.
Carol will probably skip a couple of walks on the beautiful grounds of the USF campus but not the yoga classes, they have been rescheduled for in room sessions. Massages will begin again on Tuesday. She is already hopping to make up the outdoor walks after she is done with the first few days of the chemo medication discomforts, which we all hope will be managed by medications.
Today we had a nice midday walk around the hospital grounds and after Carol finished her shower, the massage therapist knocked at the door. It was perfect timing.
This evening Carol will be given Neupogen to raise her white cell counts as well as during the next 3 days of chemotherapy.
Again we want to thank everyone for all your continued inquiries and well wishes.
I will continue updating you as often as possible.
Thank you.
Jaime
Thursday, April 22, 2010
Extended Stay at Spa Moffitt
Hi Everyone:
Carol was given one unit of platelets this morning. Carol “the unstoppable” cannot stay still, so as soon as this task was done, we both took a very nice walk around the college campus and enjoyed the beautiful morning, outdoors. Back to the room and after a shower, she went to her Yoga class, which she enjoys tremendously.
Today the results of Carol’s bone morrow biopsy showed 13% blast cells, so one more round of the chemotherapy is needed to reach the lower than 5% for the bone morrow transplant to be able to be scheduled. The doctor who visited us with these results suggested that the same type of drugs could be used for the next round, since a large number of the blast cells were already eliminated on the first round. The medication decision lays with the head of the department, Dr. Lancet, whom we will probably hear from tomorrow. So here we go again.
We will probably have to stay at the Moffitt resort a few more weeks.
Nothing will change Carol’s determination to overcome this obstacle. The distance for this regatta is just a little longer, a head race, so a bit more rowing will be needed.
Again we thank everyone for the calls, emails, texts and whatever means you use to give us your support. We really appreciate all of your support.
Thank you.
Jaime
Carol was given one unit of platelets this morning. Carol “the unstoppable” cannot stay still, so as soon as this task was done, we both took a very nice walk around the college campus and enjoyed the beautiful morning, outdoors. Back to the room and after a shower, she went to her Yoga class, which she enjoys tremendously.
Today the results of Carol’s bone morrow biopsy showed 13% blast cells, so one more round of the chemotherapy is needed to reach the lower than 5% for the bone morrow transplant to be able to be scheduled. The doctor who visited us with these results suggested that the same type of drugs could be used for the next round, since a large number of the blast cells were already eliminated on the first round. The medication decision lays with the head of the department, Dr. Lancet, whom we will probably hear from tomorrow. So here we go again.
We will probably have to stay at the Moffitt resort a few more weeks.
Nothing will change Carol’s determination to overcome this obstacle. The distance for this regatta is just a little longer, a head race, so a bit more rowing will be needed.
Again we thank everyone for the calls, emails, texts and whatever means you use to give us your support. We really appreciate all of your support.
Thank you.
Jaime
Wednesday, April 21, 2010
Hi there...whoever of you visit here :)
For a day starting out with a bone marrow biopsy, it sure was a good one!! Since I wasn't planning on being able to eat breakfast or go out in case they decided to take me for the biopsy earlier than 2:30 when I was scheduled, I decided to stay in bed a little longer...until Jaime showed up at 8:15...I was so happy to see him! I didn't realize how much I had missed him. I then had to ready myself to hug and kiss Daniel good bye since he had to go back to SRQ to go to work. It was another most fabulous 3 days with one of my many caregivers. They're so bossy though!!
15 minutes later my nurse told me transport was coming to get me since they had a spot for me down at the Bone Marrow Biopsy department. That was great news...gave me visions of breakfast upon return right away!
By 11:00, Jaime was holding my hand and I was able to see his face, so up we were taken, back to our room and breakfast was had by us both. More antibiotic IVs and lunch rolled into one and a knock on the door by the roaming harpist to play us some sweet tunes to try and keep me relaxed before getting disconnected and running off to my yoga class at the Hope Lodge...I can say "my" yoga class because I was the only student and had this wonderful teacher by and to myself. It was truely wonderful, in fact she will be coming to my room on Monday for a private, in-room lesson.
After yoga it was back to the room to be reconnected to the wall and after a few wonderful visits with some of my sweetest friends by phone, while Jaime went hunting for a few organic must haves, it was time for Daniel's yummy stew and a few "chocolate haystacks". Another disconnect from 7:30 til 10...so on went my mask and off we went for an hour and a half walk around the USF campus...what a beautiful night for our walk...I think even Jaime liked it!
So that's about it for now. Jaime's in charge now. Tomorrow afternoon we should get some new and hopefully improved results from the biopsy, but first, I must secure my disconnection before 3:00 for tomorrow's yoga class!
Chau for now from Spa Moffitt where I plan to have as much fun as I can while I can. My next stay here will be long and there will be no escapes and probably no picnic, so I'm making every minute count!
Thank you for all your sweet, funny and most caring cards and notes,
My love to you all,
Carol
For a day starting out with a bone marrow biopsy, it sure was a good one!! Since I wasn't planning on being able to eat breakfast or go out in case they decided to take me for the biopsy earlier than 2:30 when I was scheduled, I decided to stay in bed a little longer...until Jaime showed up at 8:15...I was so happy to see him! I didn't realize how much I had missed him. I then had to ready myself to hug and kiss Daniel good bye since he had to go back to SRQ to go to work. It was another most fabulous 3 days with one of my many caregivers. They're so bossy though!!
15 minutes later my nurse told me transport was coming to get me since they had a spot for me down at the Bone Marrow Biopsy department. That was great news...gave me visions of breakfast upon return right away!
By 11:00, Jaime was holding my hand and I was able to see his face, so up we were taken, back to our room and breakfast was had by us both. More antibiotic IVs and lunch rolled into one and a knock on the door by the roaming harpist to play us some sweet tunes to try and keep me relaxed before getting disconnected and running off to my yoga class at the Hope Lodge...I can say "my" yoga class because I was the only student and had this wonderful teacher by and to myself. It was truely wonderful, in fact she will be coming to my room on Monday for a private, in-room lesson.
After yoga it was back to the room to be reconnected to the wall and after a few wonderful visits with some of my sweetest friends by phone, while Jaime went hunting for a few organic must haves, it was time for Daniel's yummy stew and a few "chocolate haystacks". Another disconnect from 7:30 til 10...so on went my mask and off we went for an hour and a half walk around the USF campus...what a beautiful night for our walk...I think even Jaime liked it!
So that's about it for now. Jaime's in charge now. Tomorrow afternoon we should get some new and hopefully improved results from the biopsy, but first, I must secure my disconnection before 3:00 for tomorrow's yoga class!
Chau for now from Spa Moffitt where I plan to have as much fun as I can while I can. My next stay here will be long and there will be no escapes and probably no picnic, so I'm making every minute count!
Thank you for all your sweet, funny and most caring cards and notes,
My love to you all,
Carol
Tuesday, April 20, 2010
Hello all,
Daniel here, to give you the beat of the last few days.
Sunday I arrived and took over Jaime's place. I gave Carol some pumpkin stew which I made with a recipe from Donna. It came out pretty well as well as the quiche that I gave her a sample of from her own recipe.
We got to sleep as early as possible and I played some quiet songs on guitar to aid her dozing off. =]
Monday we played Upwords (similar to Scrabble). Then we had a nice walk (as is customary whenever Carol is unplugged) for an hour and a half 'round and about the USF campus and stopped by the USF Contemporary Art Museum which had some interesting and some risque contemporary art.
In the evening we had a bit of a problem with the nearest kitchen's refridgerator and had to relocate all of our food to the North wing of the floor. They didn't know when it would be fixed so we started looking for a way to get a mini fridge in the room. Gary and Cathy answered our call for help and are lending us their mini fridge. Later at night we watched "Twilight" before a much needed rest. I think Carol was looking for an alternative and faster way of upping her hemogloben without having to sit through all 4 hours of transfusion! LOL
Today, Michael(Carol's brother & my uncle)who is staying on Marco Island on business, drove up for a visit and picked up my grandfather, Joe, as well as Gary & Cathy's fridge, and headed up here for a visit. After taking up the fridge, of course it was time for a long stroll around USF. It was a beautiful day and we tried our best to blend in with the students. Stopped at one of the cafeterias for a bite and continued on until about 12:30 when it was Carol's next hook up time. After hugs and kisses all around Michael & Joe were on their way. The next knock on the door was the massage therapist, who Carol couldn't resist. Then it was disconnect time and Carol was off to her yoga class.
After that and another hooking up to the totem pole, we went for one more stroll around the nearby parts of the campus =]
Then it was dinner time and Carol finished off the last of the portion of stew that I brought, though it will be replenished tomorrow when Jaime comes back =]
Tomorrow is also Carol's next biopsy after which we hope to find out how the chemotherapy has been helping and whether another round will be needed or she can continue to her bone marrow transplant portion of the treatment.
-Daniel (and edited by Carol)
Daniel here, to give you the beat of the last few days.
Sunday I arrived and took over Jaime's place. I gave Carol some pumpkin stew which I made with a recipe from Donna. It came out pretty well as well as the quiche that I gave her a sample of from her own recipe.
We got to sleep as early as possible and I played some quiet songs on guitar to aid her dozing off. =]
Monday we played Upwords (similar to Scrabble). Then we had a nice walk (as is customary whenever Carol is unplugged) for an hour and a half 'round and about the USF campus and stopped by the USF Contemporary Art Museum which had some interesting and some risque contemporary art.
In the evening we had a bit of a problem with the nearest kitchen's refridgerator and had to relocate all of our food to the North wing of the floor. They didn't know when it would be fixed so we started looking for a way to get a mini fridge in the room. Gary and Cathy answered our call for help and are lending us their mini fridge. Later at night we watched "Twilight" before a much needed rest. I think Carol was looking for an alternative and faster way of upping her hemogloben without having to sit through all 4 hours of transfusion! LOL
Today, Michael(Carol's brother & my uncle)who is staying on Marco Island on business, drove up for a visit and picked up my grandfather, Joe, as well as Gary & Cathy's fridge, and headed up here for a visit. After taking up the fridge, of course it was time for a long stroll around USF. It was a beautiful day and we tried our best to blend in with the students. Stopped at one of the cafeterias for a bite and continued on until about 12:30 when it was Carol's next hook up time. After hugs and kisses all around Michael & Joe were on their way. The next knock on the door was the massage therapist, who Carol couldn't resist. Then it was disconnect time and Carol was off to her yoga class.
After that and another hooking up to the totem pole, we went for one more stroll around the nearby parts of the campus =]
Then it was dinner time and Carol finished off the last of the portion of stew that I brought, though it will be replenished tomorrow when Jaime comes back =]
Tomorrow is also Carol's next biopsy after which we hope to find out how the chemotherapy has been helping and whether another round will be needed or she can continue to her bone marrow transplant portion of the treatment.
-Daniel (and edited by Carol)
Sunday, April 18, 2010
Hello Family and Friends:
This is a postscript to my previous weekend posts that were more about status than impressions & commentary.
Carol’s attitude is really remarkable …she keeps the nurses laughing and has them shaking their heads because she is the most healthy looking patient on the floor. Sometimes they (and doctors too) listen to what she has planned for her day whenever she will be un-tethered, and you can see them smiling with a sense of awe and their cartoon bubble saying “you go, girl!”. Then they sort of pretend they didn’t hear because they know that while where she wants to walk may be just outside of their purview, their nods express their unstated understanding that the most active patients – and those who get dressed on days they feel good – feel the least like patients and the most like themselves, and do much better.
The nurses, PA’s, and even the housekeeper have impressed me in general as striking a balance of being focused on their responsibilities and demonstrating thoughtfulness even while they may be short-staffed and stressed. They make the time to smile and be social with Carol – or is it that Carol inspires that and they wouldn’t be like that otherwise? Hmmmm….
I do feel that most of them are part of an amazing breed of very compassionate & dedicated people, and every minute they take to consider Carol’s need for exercise, freedom, a bit of independence is a gift that Carol happily accepts & appreciates, furthering their tendency to feed those needs. Carol noted that one of the nurses was very strict and matter of fact in the beginning but what I see (and she agrees) now is a balance of caring and relationship-building with someone who respects and appreciates Carol’s insatiable desire to defy the current situation!
Sharing this short weekend with Carol has been a gift to me -- as our time together always is --and to be here when she feels well was of course a bonus for both of us. Getting to know some of the people caring for her has been especially comforting knowing she is in some exceptionally good hands and among sweet hearts (who are clearly enjoying finding their way inside Carol’s heart and vice-versa).
So here’s to Mary, Archana, Leila, Chris PA, Dr. Estrella, Dr. Baz, Angie, Edwina, Xinia, and others who may not always hear about the brightness and comfort they bring to both the people in their care and their caregivers!
And here’s to my sister, to her continued defiance and inspiration to us all,
-Susan (Carol’s sister)
P.S. to the P.S. Carol asked at what point she might be allowed to go home to Sarasota (between this stay and her bone marrow transplant) and the answer is when her A.N.C. level is above 500. Currently it is too low to even be detectable but her doctor said that when it does spring back it can spring back relatively quickly.
Good Afternoon Family and Friends:
Today, Saturday, was my “day 2” at Moffitt, of weekend stay with my best sister in the world :) The weekend is going very well in general, and Carol is feeling well enough to be impatient about how long all the medical processes take and everything that gets in the way of getting out of her hospital room for a change of scenery.
We both had a relatively restful night last night (I think the nurses cut us a little slack on the middle of the night interruptions since Carol was doing so well yesterday afternoon/eve), not to mention that the soundproofing is actually pretty good here so you don’t hear much outside the room after 10 or so.
The morning shift nurse sprung us free after the a.m. platelets & antibiotics were administered for about 40 minutes, so we took advantage of our “get out of jail” card and took a short walk outside around the campus.
After lunch Carol & I enjoyed re-visiting our trip to Italy from October 2008 vis-à-vis a powerpoint story told through many of our best photos and my daily journal notes. Carol also enjoyed a tour of Paris from a trip that Adam (Henry & my younger son) & I took this past Summer, through the same medium.
Later we received a surprise visit from Carol & Jaime’s friend Jeri who has been so thoughtful & dedicated to bringing Carol homemade organic foods since she’s been at Moffitt , so that was a very bright spot in Carol’s day.
Carol was given freedom from IV from 5:30 all the way to 10 p.m., and luckily the rain stopped in time to fit in another early eve walk before dinner. Speaking of dinner, Daniel just sent Carol a photo of the beautiful dinner he made to bring to Carol tomorrow – following his Mom’s instructions to a “T” – a spinach quiche & Donna’s Argentine pumpkin stew. Mommy- pride raised her blood pressure a little but it was worth it :) (Don’t all invite Daniel over to make dinner all at one time now, I get first dibs).
Tomorrow we’ll get to see our Dad and Joyce in the afternoon, and then there will be a “changing of the guards” – Dad & Joyce will take me to the airport and Daniel will take over the caregiver seat through Tuesday. So stay tuned for your next update from Daniel.
This will be a big week this week -- Wednesday another bone marrow biopsy will determine the next step & we are hopeful that step will be prep for the bone marrow transplant.
Thank you for your positive & loving thoughts and wishes each day.
-Susan (Carol’s sister)
Today, Saturday, was my “day 2” at Moffitt, of weekend stay with my best sister in the world :) The weekend is going very well in general, and Carol is feeling well enough to be impatient about how long all the medical processes take and everything that gets in the way of getting out of her hospital room for a change of scenery.
We both had a relatively restful night last night (I think the nurses cut us a little slack on the middle of the night interruptions since Carol was doing so well yesterday afternoon/eve), not to mention that the soundproofing is actually pretty good here so you don’t hear much outside the room after 10 or so.
The morning shift nurse sprung us free after the a.m. platelets & antibiotics were administered for about 40 minutes, so we took advantage of our “get out of jail” card and took a short walk outside around the campus.
After lunch Carol & I enjoyed re-visiting our trip to Italy from October 2008 vis-à-vis a powerpoint story told through many of our best photos and my daily journal notes. Carol also enjoyed a tour of Paris from a trip that Adam (Henry & my younger son) & I took this past Summer, through the same medium.
Later we received a surprise visit from Carol & Jaime’s friend Jeri who has been so thoughtful & dedicated to bringing Carol homemade organic foods since she’s been at Moffitt , so that was a very bright spot in Carol’s day.
Carol was given freedom from IV from 5:30 all the way to 10 p.m., and luckily the rain stopped in time to fit in another early eve walk before dinner. Speaking of dinner, Daniel just sent Carol a photo of the beautiful dinner he made to bring to Carol tomorrow – following his Mom’s instructions to a “T” – a spinach quiche & Donna’s Argentine pumpkin stew. Mommy- pride raised her blood pressure a little but it was worth it :) (Don’t all invite Daniel over to make dinner all at one time now, I get first dibs).
Tomorrow we’ll get to see our Dad and Joyce in the afternoon, and then there will be a “changing of the guards” – Dad & Joyce will take me to the airport and Daniel will take over the caregiver seat through Tuesday. So stay tuned for your next update from Daniel.
This will be a big week this week -- Wednesday another bone marrow biopsy will determine the next step & we are hopeful that step will be prep for the bone marrow transplant.
Thank you for your positive & loving thoughts and wishes each day.
-Susan (Carol’s sister)
Friday, April 16, 2010
Good Afternoon Family and Friends;
Today, Friday , I arrived in Tampa & got to Moffitt to spend the weekend with my best sister in the world :)
After greeting Carol and a very big bunch of hugs, Jaime showed me the ropes, provided me with a quick mini-tour and then off we went to the Bone Marrow Center so I could be tested to determine if I will be a match and can be her donor. It’s just a simple blood test but takes about 3 weeks to analyze, because they will be looking for a minimum of 4-5 matching genetic factors. The nurse there was so sweet and filled with optimism for us that we would have our match soon. Michael’s (our brother’s) test kit was shipped from PA where he lives, so that both siblings’ blood can be analyzed in about the same time frame.
Carol needed a transfusion today, and also receives IV antibiotics on an ongoing basis. The process usually takes about 4 hours (for 2 units) but today it went a bit more slowly because blood pressure was up a little (guess she was too happy to see me) – of course a certain sister of mine had little patience for a 6 hour process that didn’t allow her to escape for a walk outside until 5:30 , but we did fit in a rather competitive game of scrabble until the freedom bell rang! She was convinced that she must have gotten some English professor’s blood in that transfusion when she was beating the pants off me :) We also had a great lunch thanks to Jaime’s shopping spree at the organic market (sure beats hospital food).
The grounds around the hospital are pretty, with walking paths, fountains, tables with umbrellas, gardens. It’s part of University of S. Florida, so we walked around the campus a bit where there are sculptures, streams, bridges. It’s great that Carol is feeling well enough to walk around for an hour (or more if she didn’t have to get back for the next IV, but only Carol can make a joke about feeling like Cinderella at a time like that). It’s also great to be in an area where there are many young students around playing music, setting up for a fashion show, or whatever – nice positive energy!
No other news for now… the nurse on duty tonight is collaborating on the plan to spring Carol free for a morning walk, and we hope to have an uneventful weekend just spending time together. Wednesday she will have another bone marrow biopsy to determine if the cancer is in remission as the chemo may still be working to get the blasts to a lower percentage. Then she can go forward with bone marrow transplant preparations. We will keep you posted.
Your positive thoughts and wishes are appreciated every single day.
-Susan
Today, Friday , I arrived in Tampa & got to Moffitt to spend the weekend with my best sister in the world :)
After greeting Carol and a very big bunch of hugs, Jaime showed me the ropes, provided me with a quick mini-tour and then off we went to the Bone Marrow Center so I could be tested to determine if I will be a match and can be her donor. It’s just a simple blood test but takes about 3 weeks to analyze, because they will be looking for a minimum of 4-5 matching genetic factors. The nurse there was so sweet and filled with optimism for us that we would have our match soon. Michael’s (our brother’s) test kit was shipped from PA where he lives, so that both siblings’ blood can be analyzed in about the same time frame.
Carol needed a transfusion today, and also receives IV antibiotics on an ongoing basis. The process usually takes about 4 hours (for 2 units) but today it went a bit more slowly because blood pressure was up a little (guess she was too happy to see me) – of course a certain sister of mine had little patience for a 6 hour process that didn’t allow her to escape for a walk outside until 5:30 , but we did fit in a rather competitive game of scrabble until the freedom bell rang! She was convinced that she must have gotten some English professor’s blood in that transfusion when she was beating the pants off me :) We also had a great lunch thanks to Jaime’s shopping spree at the organic market (sure beats hospital food).
The grounds around the hospital are pretty, with walking paths, fountains, tables with umbrellas, gardens. It’s part of University of S. Florida, so we walked around the campus a bit where there are sculptures, streams, bridges. It’s great that Carol is feeling well enough to walk around for an hour (or more if she didn’t have to get back for the next IV, but only Carol can make a joke about feeling like Cinderella at a time like that). It’s also great to be in an area where there are many young students around playing music, setting up for a fashion show, or whatever – nice positive energy!
No other news for now… the nurse on duty tonight is collaborating on the plan to spring Carol free for a morning walk, and we hope to have an uneventful weekend just spending time together. Wednesday she will have another bone marrow biopsy to determine if the cancer is in remission as the chemo may still be working to get the blasts to a lower percentage. Then she can go forward with bone marrow transplant preparations. We will keep you posted.
Your positive thoughts and wishes are appreciated every single day.
-Susan
Wednesday, April 14, 2010
Good Afternoon Family and Friends;
This week has been busy starting with my Bone Marrow Biopsy, as you may know, having to let Alexia go home, not easy, walks every second I can as soon as I am disconnected from my IV “totem pole” serving me antibiotics and hydrating me in between. At the end of our beautiful morning walk yesterday, we had a wonderful visit from Sybil & Jay which lifted my spirits and brought sunshine in the form of their home grown oranges. As their visit ended, they, along with Jaime escorted me to a yoga class that I escaped to yesterday over at the Hope Lodge, followed by a little weight training with my PT. Today, much the same, release from the pole, a nice shower and even a ride in the car for the first time since I got here… not far away… to a Children’s Shriner Hospital to walk around in the cool breezy morning air.
Jaime and I were finally just visited by one of my sweet doctors, Estrella, who let us know that my results from the biopsy were still a little iffy, but at 5% blasts. They wanted to see 5% or less, so again I’m sitting on the fence, not too bad. At this point, they want to wait until a second biopsy this coming Monday to see if the chemo is just working a little slow, but still working, rather than going right to more Chemo right away…I like that. Dr. Lancet, my Leukemia specialist here, is out this week, but will be reached by email and consulted for the last word, in the meantime, and if there is any update regarding his opinion, they will let us know.
I think that’s pretty much it for now. It’s already Wednesday and I am looking forward to a visit tomorrow by my sweet friend Mimi. Between her and half the nurses, techs and doctors, my Spanish is getting a good sharpening and further, a bit more medical vocabulary I didn’t even realize I had in me! Tomorrow I hope to make it to Hope Lodge again for another 3:00 yoga class and before I know it, it will be Friday and I will be hugging my precious sister, Susan, who has a date with the Bone Marrow Donor office for HLA typing to see if she’s a match. In the meantime, somewhere in Pennsylvania, my brother, Michael, is doing the same. So the race is on! I hope it’s one of them so we can keep it in the family. If neither of them are a match, they will be searching the world-wide donor registry to find a match (who will surely become a new family member).
Again and Again…thank you all for your wonderfully entertaining calls, cards and visits.
Love,
Carol
This week has been busy starting with my Bone Marrow Biopsy, as you may know, having to let Alexia go home, not easy, walks every second I can as soon as I am disconnected from my IV “totem pole” serving me antibiotics and hydrating me in between. At the end of our beautiful morning walk yesterday, we had a wonderful visit from Sybil & Jay which lifted my spirits and brought sunshine in the form of their home grown oranges. As their visit ended, they, along with Jaime escorted me to a yoga class that I escaped to yesterday over at the Hope Lodge, followed by a little weight training with my PT. Today, much the same, release from the pole, a nice shower and even a ride in the car for the first time since I got here… not far away… to a Children’s Shriner Hospital to walk around in the cool breezy morning air.
Jaime and I were finally just visited by one of my sweet doctors, Estrella, who let us know that my results from the biopsy were still a little iffy, but at 5% blasts. They wanted to see 5% or less, so again I’m sitting on the fence, not too bad. At this point, they want to wait until a second biopsy this coming Monday to see if the chemo is just working a little slow, but still working, rather than going right to more Chemo right away…I like that. Dr. Lancet, my Leukemia specialist here, is out this week, but will be reached by email and consulted for the last word, in the meantime, and if there is any update regarding his opinion, they will let us know.
I think that’s pretty much it for now. It’s already Wednesday and I am looking forward to a visit tomorrow by my sweet friend Mimi. Between her and half the nurses, techs and doctors, my Spanish is getting a good sharpening and further, a bit more medical vocabulary I didn’t even realize I had in me! Tomorrow I hope to make it to Hope Lodge again for another 3:00 yoga class and before I know it, it will be Friday and I will be hugging my precious sister, Susan, who has a date with the Bone Marrow Donor office for HLA typing to see if she’s a match. In the meantime, somewhere in Pennsylvania, my brother, Michael, is doing the same. So the race is on! I hope it’s one of them so we can keep it in the family. If neither of them are a match, they will be searching the world-wide donor registry to find a match (who will surely become a new family member).
Again and Again…thank you all for your wonderfully entertaining calls, cards and visits.
Love,
Carol
Sunday, April 11, 2010
Sunday April 11th
Not too much new to report today. Last night after another tour around the hospital we played a game of scrabble (I won). This morning we got a late start. Both of us were beat from the many interruptions throughout the night.... who decides that it is a good idea to crush recycling bottles outside of a patient's room at 3:45 in the morning?! And, why do all nurses talk to you in the middle of the night like it's day time?! Anyway, I digress. So around 8:30 we woke up, had breakfast and waited for my mom to finish her morning IVs. She received her blood counts from after yesterday's transfusion. Her platelet results are the highest that she has seen since before this all began. He red blood count is also holding from the transfusion. Her white blood cells are very low and expected to be very low tomorrow. Because of this, her energy level is down. However, we still managed to get outside around 10:30 to enjoy the beautiful morning here in Tampa. We sat outside by the rock garden/fountain and got some fresh air. We took a short walk, but mainly relaxed outside. We came back in around noon and she has been hooked up to IVs since. Luckily we are both reading the same book, so i read some to her while she was able to close her eyes and rest. We then both took a short nap. Mom received a sweet visit from Dr. Leiber and his family after our naps. His wife, Stacey, baked some delicious organic blueberry, pumpkin almond muffins. We have been enjoying them ever since. Their daughter, Sage shared some of her canoeing adventures with us and signed up for a rowing class in her future. Mom was so touched that they came and brought such special treats. We had some dinner and now we are waiting to be disconnected from the IV to see what is next as far as entertainment for the evening. Mom will have to stop partying by midnight because she is scheduled for a biopsy tomorrow morning and cannot have anything to eat. Our time together has been really special and we are really enjoying it..even though it is under these circumstances, we are able to have a great time. Her spirits are really high and she continues to be super strong.
Saturday, April 10, 2010
Hanging out with Mom
Hello All
I arrived yesterday (half an hour early ... southwest if you must ask) and was escorted by Daniel to the hospital where Jaime gave me a tour of the facility and instructions for the weekend. We were all very excited and happy to see each other. We talked for a short while to catch up and then went to bed. My mom had a great night and even got to sleep an hour extra before the nurse came in to begin the routine. At 6 am they drew blood to check to see if she needed a platelet transfusion, which she did, later on. We started the morning in a very girly fashion. I surprised my mom with a VERY cool (not according to Daniel..but everyone else in this hospital) wig. So we played around with it and played dress up and took pictures. They say that she actually may not need need it, however she may just take it on for a change of pace...since it's so cool. Who knows, she may start growing her hair right now to mold her new look. I think she got so excited that her blood pressure went up a bit...so we had to find something less fun to do. We decided that we would spy on Isabella's Saturday morning music class by Skye. We were able to watch the whole class without any of the kids finding out. It was a thrill for my mom to be able to join in on the fun. While this was going on, my mom was receiving her antibiotic, which she gets every four hours. During this time, Daniel also arrived. When she was through with her antibiotics, she was able to shower and eat lunch with out being connected to any IVs. Just as we thought we were going to be able to leave for a walk, the nurse came in with another bag of IVs. This time for platelets. So, rather than taking a walk outside, Mom, Daniel and I played a bunch of games. Finally, around 4:30, we were able to go outside for a nice walk around the facility. Mom took us over to the hope lodge for a tour to show us where she will hopefully be staying for two months after her first month and after she receives her bone marrow transplant. We also walked around the campus and the ponds and took pictures. We came back for dinner and some more antibiotics... and the night is still young...so tune in for more tomorrow......P.S. They just unhooked her again...so off we go gallivanting around the hospital looking for trouble.....
I arrived yesterday (half an hour early ... southwest if you must ask) and was escorted by Daniel to the hospital where Jaime gave me a tour of the facility and instructions for the weekend. We were all very excited and happy to see each other. We talked for a short while to catch up and then went to bed. My mom had a great night and even got to sleep an hour extra before the nurse came in to begin the routine. At 6 am they drew blood to check to see if she needed a platelet transfusion, which she did, later on. We started the morning in a very girly fashion. I surprised my mom with a VERY cool (not according to Daniel..but everyone else in this hospital) wig. So we played around with it and played dress up and took pictures. They say that she actually may not need need it, however she may just take it on for a change of pace...since it's so cool. Who knows, she may start growing her hair right now to mold her new look. I think she got so excited that her blood pressure went up a bit...so we had to find something less fun to do. We decided that we would spy on Isabella's Saturday morning music class by Skye. We were able to watch the whole class without any of the kids finding out. It was a thrill for my mom to be able to join in on the fun. While this was going on, my mom was receiving her antibiotic, which she gets every four hours. During this time, Daniel also arrived. When she was through with her antibiotics, she was able to shower and eat lunch with out being connected to any IVs. Just as we thought we were going to be able to leave for a walk, the nurse came in with another bag of IVs. This time for platelets. So, rather than taking a walk outside, Mom, Daniel and I played a bunch of games. Finally, around 4:30, we were able to go outside for a nice walk around the facility. Mom took us over to the hope lodge for a tour to show us where she will hopefully be staying for two months after her first month and after she receives her bone marrow transplant. We also walked around the campus and the ponds and took pictures. We came back for dinner and some more antibiotics... and the night is still young...so tune in for more tomorrow......P.S. They just unhooked her again...so off we go gallivanting around the hospital looking for trouble.....
Friday, April 9, 2010
Friday's report :-)
Hi everyone.
Carol’s week started a bit shaky due to the lingering chemo drugs in her body, but the second part of the week was much more improved with the diminishing side effects.
With more determination than ever, Carol continues to do all she can to maintain her physical optimum level, taking walks around the hospital grounds, doing some stretches with a physical therapist, and even a mini bicycle peddler that helps her tone her muscles. Those who know Carol can surely imagine her doing all these kind of things.
This afternoon Carol’s parents, Joe and Joyce came to visit and brought some special grandmom goodies. Daniel also brought over some of Jeri and Oren’s healing miso soup and he is also spending a couple of days with Carol, and staying with friends nearby.
Today Carol’s daughter Alexia is arriving for a much anticipated visit. She will be staying for a long weekend until Monday afternoon. Carol’s has been very excited with the thought of Alexia’s visit this weekend.
The same excitement will carry over to next weekend with the planned visit of her sister Susan.
The next step is a bone morrow biopsy next Monday the 12th. to confirm if the chemotherapy succeeded in reducing the blast cells counts to below the needed levels of remission to proceed with the bone morrow transplant in a timely manner.
In the meantime she continues to be closely monitored to make sure her blood levels don’t drop below the minimum to require transfusions, but these are things the doctors consider normal and expect her to need now and then.
I will try to update your again shortly.
Thank you
Carol’s week started a bit shaky due to the lingering chemo drugs in her body, but the second part of the week was much more improved with the diminishing side effects.
With more determination than ever, Carol continues to do all she can to maintain her physical optimum level, taking walks around the hospital grounds, doing some stretches with a physical therapist, and even a mini bicycle peddler that helps her tone her muscles. Those who know Carol can surely imagine her doing all these kind of things.
This afternoon Carol’s parents, Joe and Joyce came to visit and brought some special grandmom goodies. Daniel also brought over some of Jeri and Oren’s healing miso soup and he is also spending a couple of days with Carol, and staying with friends nearby.
Today Carol’s daughter Alexia is arriving for a much anticipated visit. She will be staying for a long weekend until Monday afternoon. Carol’s has been very excited with the thought of Alexia’s visit this weekend.
The same excitement will carry over to next weekend with the planned visit of her sister Susan.
The next step is a bone morrow biopsy next Monday the 12th. to confirm if the chemotherapy succeeded in reducing the blast cells counts to below the needed levels of remission to proceed with the bone morrow transplant in a timely manner.
In the meantime she continues to be closely monitored to make sure her blood levels don’t drop below the minimum to require transfusions, but these are things the doctors consider normal and expect her to need now and then.
I will try to update your again shortly.
Thank you
Tuesday, April 6, 2010
What a beautiful day!!!
Hi everyone:
Today was a really god day for Carol.
As expected, her blood counts are still very low so she needed some transfusions. Two units of blood and one of platelets.
Aside from that, no mayor side effects from all the medications and in very good spirits.
A massage therapists and later on a physical therapists worked with Carol today. A very soothing massage and very good stretches plus a walk around the nurse station and into the next wing just to get her muscles back into shape and ready to row.
Carol’s improvement made her feel more comfortable with visitors today, so Carol’s parents, Joe and Joyce came in for a very nice visit in the morning.
Donna Smith visited in the afternoon and really brought Carol a huge amount of love and laughter.
Feeling better today and getting better nourishment, topped with smiles and laughter made this the best day so far.
Again, we want to thank everyone one that constantly communicates their get well wishes via this blog and other means.
Thank you.
Jaime
Today was a really god day for Carol.
As expected, her blood counts are still very low so she needed some transfusions. Two units of blood and one of platelets.
Aside from that, no mayor side effects from all the medications and in very good spirits.
A massage therapists and later on a physical therapists worked with Carol today. A very soothing massage and very good stretches plus a walk around the nurse station and into the next wing just to get her muscles back into shape and ready to row.
Carol’s improvement made her feel more comfortable with visitors today, so Carol’s parents, Joe and Joyce came in for a very nice visit in the morning.
Donna Smith visited in the afternoon and really brought Carol a huge amount of love and laughter.
Feeling better today and getting better nourishment, topped with smiles and laughter made this the best day so far.
Again, we want to thank everyone one that constantly communicates their get well wishes via this blog and other means.
Thank you.
Jaime
Monday, April 5, 2010
Chemo and recovery
Sorry for the delay in this update. We know a lot of you have been waiting to hear some news. The past week has been slow and tough for Carol. She's been dizzy, nauseous and hasn't had a lot of strength or appetite, as expected.
Saturday Jeri came for the day to relieve Jaime while he came home to do some errands. She also brought some Miso broth, fruit, and healthy suppliments. Carol was smiling for the first time she could remember in several days =]. I came in the evening and Jaime came back later on.
On Sunday, April 4th she had her last dose of chemotherapy and had already been feeling better beforehand. She had been reading as well as asking for, eating and retaining food. She had strawberries, a banana, half of a bagel with cream cheese and some Miso soup broth. At night, I stayed in the room and Jaime went home to do some errands and get a night of rest in his bed.
Today is the first day with no chemotherapy though some of the side effects still linger. They are being counteracted pretty well by drugs. This morning we shared an egg and cheese omelet and French toast, and then she had some more bagel with cream cheese. The next thing we are waiting for is her bone marrow biopsy around the 14th day of her stay at Moffitt. That will tell us whether the chemotherapy was successful in putting the leukemia blast cells into a full remission. Afterwards, preparation will begin for the bone marrow transplant. Donor matching test kits are being prepared for shipping to Carol's siblings, Michael and Susan.
Right now, Carol is in the midst of a physical therapy session which is going very well with the exception that she is slightly wobbly with her balance. Nevertheless, she went for a walk around the nurse station with her mask on and did some strength tests with the therapist. They are continuing to do exercises now.
Additionally, direct blood donor forms are pretty much filled out and ready to be sent to those of you who would like to donate. I will go through my e-mail soon to make a list of people to send it to and possibly contact you before I send a copy after I make some instructions
Thanks again for all your support and love. We hope you are all having a good week yourselves.
Daniel
Saturday Jeri came for the day to relieve Jaime while he came home to do some errands. She also brought some Miso broth, fruit, and healthy suppliments. Carol was smiling for the first time she could remember in several days =]. I came in the evening and Jaime came back later on.
On Sunday, April 4th she had her last dose of chemotherapy and had already been feeling better beforehand. She had been reading as well as asking for, eating and retaining food. She had strawberries, a banana, half of a bagel with cream cheese and some Miso soup broth. At night, I stayed in the room and Jaime went home to do some errands and get a night of rest in his bed.
Today is the first day with no chemotherapy though some of the side effects still linger. They are being counteracted pretty well by drugs. This morning we shared an egg and cheese omelet and French toast, and then she had some more bagel with cream cheese. The next thing we are waiting for is her bone marrow biopsy around the 14th day of her stay at Moffitt. That will tell us whether the chemotherapy was successful in putting the leukemia blast cells into a full remission. Afterwards, preparation will begin for the bone marrow transplant. Donor matching test kits are being prepared for shipping to Carol's siblings, Michael and Susan.
Right now, Carol is in the midst of a physical therapy session which is going very well with the exception that she is slightly wobbly with her balance. Nevertheless, she went for a walk around the nurse station with her mask on and did some strength tests with the therapist. They are continuing to do exercises now.
Additionally, direct blood donor forms are pretty much filled out and ready to be sent to those of you who would like to donate. I will go through my e-mail soon to make a list of people to send it to and possibly contact you before I send a copy after I make some instructions
Thanks again for all your support and love. We hope you are all having a good week yourselves.
Daniel
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