Sorry we neglected this blog for a little while, but we all had so much to catch up with that updating the blog was left out. Many of you spoke, emailed or texted with Carol already so our apologies to the ones that didn’t get any news.
Since Carol got home last Monday, things have been closer to normal considering that this is a break before the bone morrow transplant.
Her blood counts from a test done this past Monday showed that they were moving in the right direction. She is even starting to produce some of her own platelets, which her oncologist described as “remarkable”. He also commented that Carol did “unusually well” while at Moffitt, maintaining her sanity and body strength with some of her exercise routines and walking escapades. Also important was avoiding any infections while having low white blood counts during and after the chemo.
Now, while being home, Carol is getting back to her “new normal” life. Walks, yoga, cooking, you name it. Maybe doing all these things at a slower pace, but she just doesn’t stop.
Tomorrow (5/27) Carol will again have a bone morrow biopsy at Moffitt to make sure her Leukemia blast cells are kept at the lowest levels (below 5%) to avoid having to go through another round of chemotherapy. This treatment would help maintain blast cells from propagating.
The fun begins Saturday!
Trevor, Alexia and Isabella will be visiting us for 4 days. Needless to say Carol already plans not to sleep (just kidding) to make these days feel the longest possible. We will probably need to give her some sleeping pills hidden in a smoothie so she gets her needed beauty rest (kidding again).
For the friends and family that inquired about volunteering as bone morrow donors, there is some clarification about what the requirements are for someone interested in becoming a bone morrow donor. Please continue reading below for more detailed information from Carol's sister.
Thank you again.
Jaime
All -
A few clarifications from Moffitt Cancer Center (Christina who works with Anita Davis in the Bone Marrow Transplant Team):
When a sibling is tested, and are not found to be match, they do NOT automatically go into the bank, and must start the registration process on their own !
• When you register online @ www.marrow.org is, after completing a detailed form, they send you a swab kit. There is no required paymenet for the kit, but a donation is optional.
• This is a preliminary step to a blood test that will be required if your swab passes an initial set of genetic "filters".
• If your swab results in 10 genetic factors that match a patients' who needs stem cells, they then contact you & you are asked to obtain a physical and a blood test.
• The patient's insurance covers the blood test (probably the physical, too, but not sure).
• If you cannot commit to being a donor at that time for whatever reason, you will be asked a few health related questions to be sure you are eligible for a future date.
-Susan
Monday, May 24, 2010
Tuesday, May 18, 2010
Home, sweet home…
Yesterday, Monday the 17th, Carol’s white cell counts made it to 1.28 and the neutrophils made it to 490 from her 5 AM draw. The doctors made their rounds and gave her and Susan the good news…they were being evicted.
Her white cell counts climbed up quite rapidly and gave Carol the much needed break from the hospital, the IVs, the nurses and the wake up calls.
We don’t know for sure when she’ll go back to Moffitt for the transplant, but for now she is home sweet home……..
For Carol’s continued care while at home, one of the nurses that checked us out, gave us some guidelines to follow and a list of activities to avoid. I was also instructed how to administer one daily injection of Neupogen (under the nurse’s guide) which boost her white cell counts. Carol said I didn’t even hurt her. Good thing because I have 6 more shots to go.
Dr. Chu, her local oncologist, will monitor her blood counts to make sure they maintain the necessary levels as they continue rising. If transfusions are needed they can be given at Sarasota Memorial Hospital. Next week she will have another Bone Marrow Biopsy at Moffitt to make sure the blasts are staying away and a week later she’ll have an appointment with Dr. Lancet at Moffitt to go over the results and discuss the next steps.
Of course she is a bit overwhelmed having been away from home for a long time, and getting back to her new normal.
Today Carol's aunt Natalie flew in from Philly to visit for a few days. The original plan was for the visit to take place while at Moffitt hospital, but with the quick eviction Carol received, the visit was moved to Sarasota instead.
We will still post blogs as needed, but may be less frequent.
Thank you.
Jaime
Her white cell counts climbed up quite rapidly and gave Carol the much needed break from the hospital, the IVs, the nurses and the wake up calls.
We don’t know for sure when she’ll go back to Moffitt for the transplant, but for now she is home sweet home……..
For Carol’s continued care while at home, one of the nurses that checked us out, gave us some guidelines to follow and a list of activities to avoid. I was also instructed how to administer one daily injection of Neupogen (under the nurse’s guide) which boost her white cell counts. Carol said I didn’t even hurt her. Good thing because I have 6 more shots to go.
Dr. Chu, her local oncologist, will monitor her blood counts to make sure they maintain the necessary levels as they continue rising. If transfusions are needed they can be given at Sarasota Memorial Hospital. Next week she will have another Bone Marrow Biopsy at Moffitt to make sure the blasts are staying away and a week later she’ll have an appointment with Dr. Lancet at Moffitt to go over the results and discuss the next steps.
Of course she is a bit overwhelmed having been away from home for a long time, and getting back to her new normal.
Today Carol's aunt Natalie flew in from Philly to visit for a few days. The original plan was for the visit to take place while at Moffitt hospital, but with the quick eviction Carol received, the visit was moved to Sarasota instead.
We will still post blogs as needed, but may be less frequent.
Thank you.
Jaime
Sunday, May 16, 2010
Dear Family & friends,
This update is from sister Susan.
First things first…some more happy news:
Carol’s overall white blood cell (WBC) count took a big jump up to .93 today (from .44 yesterday) and the ANC was up to 320 (undetectable yesterday) -- goal is greater than 500 for Carol to get to go home to Sarasota for a little bit.
Latest guestimate from doctors & nurses is that at this rate, Carol might be able to go home by Tuesday (yes, 2 days from now!)
We heard this morning from one of her doctors that actually once she gets home she will not need oral antibiotics, as her immune system is bouncing back – she may also be able to do without transfusions during this period. Needless to say, the next 48 hours will be both exciting & a bit overwhelming given that it’s been just under two months here at the Moffitt Cancer Center being cared for by health care professionals and caregivers every day and knowing all the boundaries. In any case it will be a precious time for Carol & family to have a new “normal” for a while in the comfort of home...yay! I suspect that the first real luxury will be a full night’s sleep without nurses & techs hopping in & out of the room, not to mention regaining privacy and savoring the buzz in the kitchen and other spaces.
Carol will be monitored while at home a few times a week, and will continue on Neupogen to build her immune system. Once a bone marrow donor match is found, as mentioned before, it will take some time to coordinate with the donor to initiate the process for the transplant. The transplant involves about a month of treatment and careful monitoring here at the Moffitt Cancer Center in a special wing, followed by 2 month stay either at The Hope Lodge or apartments near the hospital where she can continue to be monitored as she recovers.
So for now, one foot before the other…we will breathe in every minute of progress and joy of being together and seeing Carol enjoy the simple pleasures in life that matter the most.
The daily scoop
We enjoyed a visit with Dad & Joyce for a few hours in the afternoon, following a game of UpWords and during our “lunch period” …they brought some goodies like fresh pineapple…mmmm.
Then Carol’s friend Virginia who lives in Austin came for a visit here while visiting Sarasota. Carol and Virginia enjoyed contemplating their next row together and we both enjoyed hearing about her friend’s experience as a software engineer working for many years with NASA!
Tomorrow should be interesting: count status… departure timing to be confirmed…packing for the return to Sarasota! The nurses and doctors will miss Carol, no doubt, not to mention the festive love-filled decorations & practical accommodations of Carol’s room – probably not too many patients have their digital photo frame screwed into the wall, cards hung on 5 different lines of nylon thread at every diagonal of the room, photos of family, rowing & encounters on the beach, etc., personal fridge with organic foods, organizers to keep things accessible, etc.!
The next update will be from the next-in-line caregiver or one of the “regulars” (Daniel or Jaime :) ),
-Susan
Dear Family & friends,
This update is from sister Susan – arrival late Friday night, staying through Monday.
First things first…some very happy news:
Carol’s overall white blood cell (WBC) count was up to .44 today. The goal is to get to .5 at which point they can break out a subset that will show among other things, how those neutraphils (ANC) are doing that signal that her immune system is on the way back up. So why is this such good news? Because when the WBC is up to .5 and the ANC is over 500, Carol gets to “bust outta this joint” and go home to Sarasota for a bit!!!
Since her WBC has gone up so significantly in the past few days (.17 yesterday all the way to .44 today), the nurses are placing bets on when Carol might be able to go home in the neighborhood of Wednesday 5/19-Thursday 5/20 :) Whoever wins gets to come over for a celebratory dinner next time I’m back in town to cook it!
Once she gets home she will be able to be on oral antibiotics vs the IV (which in & of itself will bring a great sense of freedom, being totally untethered) and as her immune system continues to bounce back, the goal is to be able to do without transfusions. We don’t know how long she will stay home – all depends on how quickly a bone marrow donor match is found, then some time to coordinate with the donor to initiate the process for the transplant.
Speaking of that, one of the team Physician Assistants communicated the importance of spreading awareness of the need for bone marrow donors because if more people are in the database, it increases the chances for everyone needing a donor to identify a match. If you’re interested in being a donor, go to www.marrow.org and you can register and be tested -- if not a match for Carol you can choose whether or not you’d like to be a donor for someone else in need.
Now for the daily scoop
I arrived rather late Friday night, just in time for us both to turn into pumpkins & pass out for the night.
Carol’s friend Karen surprised us in the a.m. – she did the Miles for Moffitt 5K run for Moffitt Cancer Center in Carol’s honor, and was wearing a photo of Carol carrying her boat (see photo). Carol enjoyed that visit and was very touched by her friend’s thoughtfulness.
Carol & I fit in a short walk this morning and also one late this afternoon. Good thing there’s a lot of shade and a beautiful air conditioned Student Union building on USF campus with some art work to enjoy here & there to escape the heat .
In between walks around USF campus, we played a new game I brought called “Origin”, based on common expressions, their meanings and challenging players to guess their origins…fun but we could have used some help from some of you! Other than that, Carol fit in a nice long nap, enjoyed the great organic foods that Jaime picked out, and ended the eve with another hot game of scrabble.
Until the next update,
-Susan
This update is from sister Susan – arrival late Friday night, staying through Monday.
First things first…some very happy news:
Carol’s overall white blood cell (WBC) count was up to .44 today. The goal is to get to .5 at which point they can break out a subset that will show among other things, how those neutraphils (ANC) are doing that signal that her immune system is on the way back up. So why is this such good news? Because when the WBC is up to .5 and the ANC is over 500, Carol gets to “bust outta this joint” and go home to Sarasota for a bit!!!
Since her WBC has gone up so significantly in the past few days (.17 yesterday all the way to .44 today), the nurses are placing bets on when Carol might be able to go home in the neighborhood of Wednesday 5/19-Thursday 5/20 :) Whoever wins gets to come over for a celebratory dinner next time I’m back in town to cook it!
Once she gets home she will be able to be on oral antibiotics vs the IV (which in & of itself will bring a great sense of freedom, being totally untethered) and as her immune system continues to bounce back, the goal is to be able to do without transfusions. We don’t know how long she will stay home – all depends on how quickly a bone marrow donor match is found, then some time to coordinate with the donor to initiate the process for the transplant.
Speaking of that, one of the team Physician Assistants communicated the importance of spreading awareness of the need for bone marrow donors because if more people are in the database, it increases the chances for everyone needing a donor to identify a match. If you’re interested in being a donor, go to www.marrow.org and you can register and be tested -- if not a match for Carol you can choose whether or not you’d like to be a donor for someone else in need.
Now for the daily scoop
I arrived rather late Friday night, just in time for us both to turn into pumpkins & pass out for the night.
Carol’s friend Karen surprised us in the a.m. – she did the Miles for Moffitt 5K run for Moffitt Cancer Center in Carol’s honor, and was wearing a photo of Carol carrying her boat (see photo). Carol enjoyed that visit and was very touched by her friend’s thoughtfulness.
Carol & I fit in a short walk this morning and also one late this afternoon. Good thing there’s a lot of shade and a beautiful air conditioned Student Union building on USF campus with some art work to enjoy here & there to escape the heat .
In between walks around USF campus, we played a new game I brought called “Origin”, based on common expressions, their meanings and challenging players to guess their origins…fun but we could have used some help from some of you! Other than that, Carol fit in a nice long nap, enjoyed the great organic foods that Jaime picked out, and ended the eve with another hot game of scrabble.
Until the next update,
-Susan
Friday, May 14, 2010
Time doesn’t fly
It’s been one week since Carol’s Leukemia blast cells were reduced to below the 5% mark. She was told that waiting for the white cell counts to go up was going to be slow and boring. They were kind of right in both cases. Time is slow but white cell counts are taking a bit of an upturn today. Hopefully, this is the beginning of the steady incline up and beyond the much waited for 500 ANC count.
Aside from some visits from friends and family, Carol sticks to the regular routines. Walks, yoga, massage, painting, reading a book, etc……
Wednesday afternoon Carol received a very nice visit from 2 friends from her rowing club, Judi Day and Cheryl Rayla. Of course, Carol took them for a short tour of the the USF Campus.
Wednesday evening Carol had to be given platelets as she was having some bleeding from a very small skin biopsy done that morning, and her platelets were at 7! The normal range is 150 to 400. Afterwards, Bari, her yoga teacher came to the room for a relaxing breathing/healing practice.
Today Carol's friend Chris Gilligan came for a nice visit, and again there was a lot of girl talk so I had to hit the road. Chris walked with Carol to the art room on the other side of the hospital where they picked up her last art project and returned to the room to find the nurse waiting for Carol to be hooked up to her antibiotics IV. Check out the picture of both chicks hugging the totem pole.
A walk outside with Chris was out of the question. Maybe next time……
Tonight is Susan’s arrival (Carol's sister) that promises to be another great weekend for both of them. For sure they will plan activities for every minute of Susan’s visit. It's always been that way every time Susan and Carol get together.
I am being sent home for the weekend.
More updates soon!!!!
Thank you.
Jaime
Aside from some visits from friends and family, Carol sticks to the regular routines. Walks, yoga, massage, painting, reading a book, etc……
Wednesday afternoon Carol received a very nice visit from 2 friends from her rowing club, Judi Day and Cheryl Rayla. Of course, Carol took them for a short tour of the the USF Campus.
Wednesday evening Carol had to be given platelets as she was having some bleeding from a very small skin biopsy done that morning, and her platelets were at 7! The normal range is 150 to 400. Afterwards, Bari, her yoga teacher came to the room for a relaxing breathing/healing practice.
Today Carol's friend Chris Gilligan came for a nice visit, and again there was a lot of girl talk so I had to hit the road. Chris walked with Carol to the art room on the other side of the hospital where they picked up her last art project and returned to the room to find the nurse waiting for Carol to be hooked up to her antibiotics IV. Check out the picture of both chicks hugging the totem pole.
A walk outside with Chris was out of the question. Maybe next time……Tonight is Susan’s arrival (Carol's sister) that promises to be another great weekend for both of them. For sure they will plan activities for every minute of Susan’s visit. It's always been that way every time Susan and Carol get together.
I am being sent home for the weekend.
More updates soon!!!!
Thank you.
Jaime
Tuesday, May 11, 2010
GO white cells GO!!!!!
After Carol’s leukemia blast cells reached the lower than 5% required to proceed with the bone morrow transplant, a new goal needs to be achieved next.
This time the goal is for Carol’s white cells to start building up until the 500 ANC level is achieved (absolute neutrophil count). At that point she will be able to go home for approximately a month while preparing for the bone morrow transplant.
For anyone interested in knowing when she will go home, PLEASE BE PATIENT, as we will not be able to tell until her white cell counts starts to climb up. Blood counts are done daily, but for a few days are not expected to improve significantly.
As usual, this morning we took our nice walk around the USF campus. The weather was a bit worm, but a nice breeze helped us deal with the temperature. When we got back to the hospital, Carol wanted to make a stop by the Art Class where she did some of her creative painting on silk.
For lunch Carol had a delicious soup that her friend Cathy prepared with all natural and “organic” ingredients. I know that Carol enjoyed it and plans to get the page for the recipe from The Cancer Fighting Kitchen from Cathy and probably ask me to prepare it next time I am home and bring to the hospital.
Today our good friends Ron and Brooke Hatch stopped by to visit Carol (and me) as they started the trip to their home in Maine for the seasons (snow birds). We had a nice time with them reminiscing mostly about rowing and friends. We can’t wait for the next time we can get together in more homey surroundings... Like the water!
This time the goal is for Carol’s white cells to start building up until the 500 ANC level is achieved (absolute neutrophil count). At that point she will be able to go home for approximately a month while preparing for the bone morrow transplant.
For anyone interested in knowing when she will go home, PLEASE BE PATIENT, as we will not be able to tell until her white cell counts starts to climb up. Blood counts are done daily, but for a few days are not expected to improve significantly.
As usual, this morning we took our nice walk around the USF campus. The weather was a bit worm, but a nice breeze helped us deal with the temperature. When we got back to the hospital, Carol wanted to make a stop by the Art Class where she did some of her creative painting on silk.
For lunch Carol had a delicious soup that her friend Cathy prepared with all natural and “organic” ingredients. I know that Carol enjoyed it and plans to get the page for the recipe from The Cancer Fighting Kitchen from Cathy and probably ask me to prepare it next time I am home and bring to the hospital.
Today our good friends Ron and Brooke Hatch stopped by to visit Carol (and me) as they started the trip to their home in Maine for the seasons (snow birds). We had a nice time with them reminiscing mostly about rowing and friends. We can’t wait for the next time we can get together in more homey surroundings... Like the water!
I took this picture of Carol, Brooke and Ron as we walked them to their nicely loaded minivan to wish them a safe trip back home.
Carol's sister Susan will be visiting again for a few days starting this Friday.
Just the notion of Susan's visit brightens Carol's days way before her arrival.
More updates soon :)
Jaime
Friday, May 7, 2010
Yeah!!!!!! Blasts are lower than 5%
As the title of this blog reflects, this afternoon one of the doctors came by to give us the GREAT NEWS that Carol’s aggressive Leukemia blast cells took a dive to below 5%. This is something we have been waiting to hear from the day we arrived at Moffitt.
Needless to say this is a very important threshold in her treatment and it means basically that she can now go ahead with the preparations for the bone morrow transplant later on.
Tonight Carol starts with a medication to bring up her white cell count for her ANC (absolute neutrophil count) level to reach over 500 so she can go home. YES HOME!!!!!!!!!!!!
While waiting all day to have the biopsy results, Carol had a visit from her brother Michael, and sister in-law Sherry. This was a great distraction and made the hours of waiting go faster.
Michael and Sherry drove up from Venice, having sailed from the Burnt Store Marina (somewhere between Punta Gorda and Ft. Myers)
It was a very nice visit, including a (never failing) walk around the beautiful USF campus. See the picture I took of the 3 of them at the very contemporary Marshal Student Center.
Sometime after our walk, the massage therapist, Elaine, surprised us and Michael, Sherry and I had to take a hike for half an hour.
After Michael and Sherry left, Carol took me for another short celebratory walk, this time we only had half an hour, so with a short leash we had to stay close to the hospital and after a much needed shower, Carol got into her PJ’s, got connected to the IV for antibiotics and meds. She will be started on an injection to raise her white blood count starting tonight so that her ANC will start coming up.
Now we are sitting around having a GLASS OF WINE (none alcoholic) to celebrate.
We are all very happy today and start counting the days/hours so we can go back home for at least a small break.
More updates soon!!!!!!
Thank you.
Jaime
Needless to say this is a very important threshold in her treatment and it means basically that she can now go ahead with the preparations for the bone morrow transplant later on.
Tonight Carol starts with a medication to bring up her white cell count for her ANC (absolute neutrophil count) level to reach over 500 so she can go home. YES HOME!!!!!!!!!!!!
While waiting all day to have the biopsy results, Carol had a visit from her brother Michael, and sister in-law Sherry. This was a great distraction and made the hours of waiting go faster.
Michael and Sherry drove up from Venice, having sailed from the Burnt Store Marina (somewhere between Punta Gorda and Ft. Myers)
It was a very nice visit, including a (never failing) walk around the beautiful USF campus. See the picture I took of the 3 of them at the very contemporary Marshal Student Center.
Sometime after our walk, the massage therapist, Elaine, surprised us and Michael, Sherry and I had to take a hike for half an hour.After Michael and Sherry left, Carol took me for another short celebratory walk, this time we only had half an hour, so with a short leash we had to stay close to the hospital and after a much needed shower, Carol got into her PJ’s, got connected to the IV for antibiotics and meds. She will be started on an injection to raise her white blood count starting tonight so that her ANC will start coming up.
Now we are sitting around having a GLASS OF WINE (none alcoholic) to celebrate.
We are all very happy today and start counting the days/hours so we can go back home for at least a small break.
More updates soon!!!!!!
Thank you.
Jaime
Wednesday, May 5, 2010
What a busy day!
Today I got here early and things started out normal with the doctor coming to visit to check up on my mom. After breakfast, her massage therapist knocked on the door and I was out for 30 minutes while she had a relaxing massage :) Next we relaxed a while until she was unplugged and we went out to start a short walk. Before we could cross the street to the USF campus, Mimi arrived with some organic spinach lasagna and a special, healthy, ginger(amongst several other things)-heavy drink. After I got that stored in the fridge we all went for a stroll on campus and wound up in the Student Center for some air-conditioned, high-altitude strollin'. We walked around the top floor and took stairs down to the next floor until we reached the bottom.
After that, we all suddenly had a craving for ice cream and ended up indulging (just this one time!) at the Ben & Jerry's in the Student Center, from there we went back to the room for lunch. Immediately after we finished, we had a visit from one of Moffitt's musicians, Loyd, an upright bass player who serenaded us for about 20 minutes :) It was very relaxing. Wanna see?
While he was finishing we got a call from the art studio here, asking if Carol would like them to come to the room for an art lesson but since she was unplugged, we said we'd go there! We walked to the other side of the hospital and Carol spent an hour working on what developed into what she now calls her "avatar".
Time to get back to phone calls and opening mail and maybe some reading before bed time. Tomorrow at 9:30am will be hopefully the last bone marrow biopsy for at least a few weeks and Friday evening we should have some results from that.
After that, we all suddenly had a craving for ice cream and ended up indulging (just this one time!) at the Ben & Jerry's in the Student Center, from there we went back to the room for lunch. Immediately after we finished, we had a visit from one of Moffitt's musicians, Loyd, an upright bass player who serenaded us for about 20 minutes :) It was very relaxing. Wanna see?
While he was finishing we got a call from the art studio here, asking if Carol would like them to come to the room for an art lesson but since she was unplugged, we said we'd go there! We walked to the other side of the hospital and Carol spent an hour working on what developed into what she now calls her "avatar".
After art, it was time to be back at the room for her private Yoga class. She found a note and a small gift waiting for her from the woman who interiewed her about the yoga and massage therapy benefits at Moffitt. At this point, I was pretty worn out and decided to take a nap while she continued her non-stop activity-packed day. From what I gathered she had a very relaxing session and was able to find her relaxed, balanced place. :)
As if the day couldn't get any better, her friend Janie popped in and spent some time talking to Carol about her past and about a ONE HUNDRED MILE BIKE RIDE that she is going to be doing soon in my mom's honor, raising funds for The Leukemia Society. She even gave us these nifty bracelets to sport in support along with our efforts. :P After a short walk outside to get a photo op before Janie headed home.
As if the day couldn't get any better, her friend Janie popped in and spent some time talking to Carol about her past and about a ONE HUNDRED MILE BIKE RIDE that she is going to be doing soon in my mom's honor, raising funds for The Leukemia Society. She even gave us these nifty bracelets to sport in support along with our efforts. :P After a short walk outside to get a photo op before Janie headed home.
Time to get back to phone calls and opening mail and maybe some reading before bed time. Tomorrow at 9:30am will be hopefully the last bone marrow biopsy for at least a few weeks and Friday evening we should have some results from that.
Thanks to you all for all the ways you keep her spirits up from near and far =]
-Daniel
Tuesday, May 4, 2010
Tuesday May 4th. update
I got back to the hospital on Sunday evening to find Carol and her friend Cathy very involved in an intense Scrabble match, so I had to remain quiet until they finish their game. Cathy won that match and she also won the Saturday Upwords game so Carol will have to wait for the next visit to get even.
Monday at mid morning after Carol and I took a short walk (hot and sticky outside) we spotted our friends Sybil and Jay across the street arriving to the hospital so we all walked in together. Sybil brought Carol a yummy spinach quiche she made with her own garden’s spinach and other organic ingredients.
Jay invited me to lunch so we took a ride to Evos, the healthy burger joint around the corner from the hospital and gave Sybil and Carol a chance to have some girl talk.
At our return, the 3 of them took a walk around the USF campus and visited the Student Center for a cool walk and the Contemporary Art Museum for some cool culture.
Jumping into another subject, the results of the blood samples submitted by Carol’s brother Michael and sister Susan revealed that neither of them are a matching donor. Carol was hoping that one of them could have kept everything in the family. The BMT team (bone marrow transplant) is looking into a match from the national bone morrow registry, indicating that locating a donor should not be difficult.
Thank you again for all your calls, cards and emails.
Jaime
Monday at mid morning after Carol and I took a short walk (hot and sticky outside) we spotted our friends Sybil and Jay across the street arriving to the hospital so we all walked in together. Sybil brought Carol a yummy spinach quiche she made with her own garden’s spinach and other organic ingredients.
Jay invited me to lunch so we took a ride to Evos, the healthy burger joint around the corner from the hospital and gave Sybil and Carol a chance to have some girl talk.
At our return, the 3 of them took a walk around the USF campus and visited the Student Center for a cool walk and the Contemporary Art Museum for some cool culture.
Jumping into another subject, the results of the blood samples submitted by Carol’s brother Michael and sister Susan revealed that neither of them are a matching donor. Carol was hoping that one of them could have kept everything in the family. The BMT team (bone marrow transplant) is looking into a match from the national bone morrow registry, indicating that locating a donor should not be difficult.
Thank you again for all your calls, cards and emails.
Jaime
Sunday, May 2, 2010
Weekend Update by Cathy
Carol and I have had a fun two-day slumber party here at Moffitt World! She is serious about bolting from the room as soon as she is untethered from the I.V. antibiotic drip, so one quickly learns to have their sneakers and sunscreen applied well in advance. Today we walked around the USF campus and wandered into the Student Center. We were impressed by this beautiful, open, sunlit, 4-story building. We took the elevator up to the top floor (Carol can’t go up stairs – blood pressure issues), walked each floor, and took the stairs down. Carol is tickled to have found an inside, air-conditioned venue for her walks when the weather gets too hot and muggy.
Healthwise, there is not much improvement in numbers, but this is expected for right now. The doctors expect to see her white blood cell count begin to climb between days 10 – 14. Today is day 8 (from the first day of the second round of chemo). Her white blood cell count is .04 (4.0 – 10.9 is normal). Her blood pressure was high all day yesterday, but it was more acceptable (130/77), last night when she was lying down in bed. She is taking a very low dose blood pressure med., and the nurses are closely monitoring her blood pressure to see if that needs to be changed.
Carol’s appetite has been very good while I have been here. Jaime keeps her personal fridge stocked with great food from the nearby organic market … as well as special concoctions created by Daniel and other friends with an organic, gourmet “thumb”.
I will sign off now as I am being challenged to a Scrabble game. Since I dominated the Upwords game yesterday, it’s the least I can do!
Thursday, April 29, 2010
Waiting for the next bone morrow biopsy
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
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
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
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