What a war she fought.

At the early hours of Thursday, June 9^th 2011 the most heroic woman I ever knew and loved, finally found resting peace.

For those who knew Carol since childhood, for only a few years or simply a brief time, I constantly and repeatedly hear how much she meant to every one of you and with what devotion she was giving herself. Her sweetness and profound memories will stay with all of us now that she is gone.
I consider myself the luckiest man in the world for having spent 28 years married to her and several years earlier being friends.

Alexia and Daniel know they had the most caring and devoted mother in the world and Isabella the most loving grandmother there is.

Her sister Susan wanted to share some of her thoughts too.

Dear Friends and Family,

As many of you know, Carol lost her valiant battle against leukemia early Thursday morning, but knowing Carol as you have, you also know that she was victorious in her dedicated battle to squeeze every positive moment out of life.

Her last few weeks were filled with visits from family & friends, several sunsets at the beach, quiet talks with her children, a game of tag with her 3 1/2 year old granddaughter Isabella around our chairs at Siesta beach (which shocked us all with simultaneous awe and fear knowing how fragile she was at that point), and a few short trike rides. As her voice weakened to a whisper, her mental strength and determination to keep going didn't wane. Jaime and Daniel partnered on every detail of her care with so much love and tenderness every step of the way -- such a testament to their devotion. ...friends and Dad & Joyce helped take care of food needs, errands, massaged, we even played a partial game of UpWords last week...what a gift to Carol.

Then she spent a few days in & out, and back in a hospice facility, so she could be kept comfortable. In my(Susan) last conversation with her Tuesday night, I helped her re-imagine our trip to Tuscany together, and she nodded and smiled with every description of those cobblestone alleys, Michelangelo's David, getting lost driving out of Florence, finding our way in Siena surrounded by olive groves. As I lulled myself to sleep that night (back in NJ) imagining being in a double with her rowing to Midnight Pass, her heart began to race "as if she was rowing" according to those in her room -- so it seems we rowed together -- mind over matter.

Whatever relationship you had with Carol, you know that she did everything with care and thoughtfulness -- she was the ultimate perfectionist (ok, sometimes that could drive one a little crazy) and delighted us all with her positive energy, her appreciation of life's simple pleasures, personalizing every act of kindness and punctuating interactions with sweetness, empathy and compassion. She also had great presence - her energy had a way of lighting up a room.

Many of you and we have had the opportunity to spend extraordinary, quality time with Carol -- throughout her life and through her three battles with cancer. The more we focus on the wonderful times and images the better we will heal and be able to keep the beautiful, athletic Carol we knew best in our hearts -- you can be sure she is still trying to make sure that that is what we do!

In the past year Carol has gotten back so much of the love she has given throughout life -- from caregivers whether family, friends, medical professionals, yoga teachers and organic restaurant owners who became dear friends, musicians at Moffitt's Integrative Medicine program, you name it. She became our Velveteen Rabbit...that favorite toy so loved, her "fur" was just about worn off from head to toe(s). We are so thankful to have such quality family members and friends who have been there for Carol, Jaime, Daniel, and also Alexia, our Dad Joe and Mom Joyce, and sister Susan(me) & brother Michael to provide tireless support and unconditional love.

We sign off this blog with heavy but grateful hearts.

Susan and Jaime

It's hard to write

All the previous blogs had some reference to Carol being a fighter.
That fact still did not change. She is still fighting to the end with the little strength left on her.

Her doctor at Moffitt told us that after all the treatments that Carol underwent, they were unable to stop her aggressive Leukemia blast cells and at the end, recommended that Carol use her time left doing what she always wanted to do.

It's ironic that someone can do whatever they wanted to do when there is not much time left to do it.
Last week Carol was admitted, released and readmitted to the Tidewel hospice house, were she is now, only receiving medications to ease the legs and abdomen pain. Basically to make her remaining time more comfortable and pain free.

We can never thank enough to all of you that in many different ways brighten her life while healthy or while going through this long and painful stage.
Sincerely.
Jaime

Where we are

Carol’s previous biopsy was a breath of fresh air and hope because the counts were up and we cheer every platelet and red blood cell along like we know them personally. However, the physical signs of progress were not so evident and in fact, the degree and frequency of pain in her legs intensified over the past few weeks and increased pain medication was needed to manage that. What we learned is that sometimes depending on the exact location of the biopsy, the reading can be different or even misleading.

The latest biopsy results showed a significant increase of leukemia blast cells and there have been some other physical signs, like swollen feet and belly, that all is not moving in the right direction. Carol’s lead oncologist at Moffitt (Transplant team) and local Oncologist have aligned on the current status which is that no other treatment would be helpful or productive and could in fact do more harm than good.

Michael & Sherry are here this week as am I, Alexia will be here tonight, and Trevor will be arriving with Isabella on Saturday.

Last night Jaime, Michael & Sherry, Daniel, Carol & I enjoyed the most beautiful sunset at Turtle beach I’ve probably ever seen – watching that big deep orange-red ball melt into the shape of a hot air balloon until it disappeared on the water was breathtaking and certainly a treasure for us all to share.

For those of you who’ve kept up with this journey, you know that Carol continues to be the most incredibly focused, courageous and determined person – and yes she continues to take an almost daily ride on her tricycle with our Dad most days… and me this week… today she lead the “posse” with our brother Michael, Daniel and me!

We are lucky to have so much love & support and Carol has one of the biggest fan clubs I know, pulling for her every day, having Carol & Jaime over to dinner, bringing home-made love-filled dishes, sending beautiful cards and inspiration in all forms – a fan club made up of family, friends, and others whose hearts Carol has touched in so many ways like the owners of her favorite restaurant “Veg” who don’t just deliver meals but do so with sweetness and smiles and hugs.

So we will continue to focus on sweet moments and smiles we can share, and on holding each other up with all the unconditional love we have for each other.

- Sister, Susan

So Much Up In the Air...

Dear Family & Friends,

Last week started with the wonderful report from the biopsy and was followed by so many hours of more pain in my knees, legs & feet, enough to confuse anyone, especially me. Still trying to keep up with my walking, which is the last thing, so I thought, left to do to keep me moving. Then came the Tricycle idea. My doctor hasn't permitted me to ride my bicycle for fear of me falling and without platelets, bleeding out of control. Also, it becomes quite painful to stand or walk for any length of time. Long story short, I sit on the tricycle, peddle for good circulation (have had swelling in my legs, feet and ankles, and this helps reduce that as well)and can handle that amount of pressure since I'm sitting. I have been constantly reduced from one activity to the next, but just can't stop moving or we'll all be in trouble.

With the wonderful arrival of my cousin Freddie, from Cape Cod, my mental medicine was again given a boost I very much needed, first fitting in an hour at the beach under an umbrella with the beautiful Gulf breezes we've been having. Second day she bicycled alongside my Tricycle and I. I know this all sounds so trivial to most of you, but to me every second is such a gift! Friday the 13th brought another beautiful day, early Tricycle ride with my Dad bicycling alongside me. We had a wonderful dinner and change of scenery that evening at Cathy & Gary's, any time I have the energy to get out of my usual surroundings, ends up being a special moment.

My afternoons are usually full with pain and trying to control it with meds that have been difficult to remember to take or worse, not remembering if I had taken them twice. Either way, it has all been too many drugs for my mind and body to deal with, mostly without enough relief. This was alleviated somewhat on Monday when Dr. Tomblyn prescribed a pain patch which delivers an even amount of meds and I don't have to worry when or if I took it.

The biopsy took place Monday morning and I also needed 2 units of blood and 1 of platelets. A very long tiring day is an understatement. As difficult as it was, that's how beautiful Tuesday was! My tricycle ride with my Dad and topped off with a fun visit from our cousins, Frankie & Sandy, now living in Boca, came to visit for a few hours again lifting spirits I had almost forgotten were there. Sandy topped it off with a much needed hair cut to help control my new doo of curls. Given & received with so much love.

As mentioned in the title, up in the air, I expect some preliminary results next monday, again looking forward to them, as long as they're good.

Thank you all for your sweet comments, emails, cards, phone calls, visits, good wishes and vibes I can feel even through the rippling water I so very much miss. If I haven't returned a call or comment, I still appeciate every thought and word and hope you will stick with me until we meet again.

Love To You All,
Carol

Brief update

Hi everyone and sorry for not posting updates to the blog as often as I would like to.

Carol is continuing with her regimen of multiple medications and doctor visits every Monday and Thursday. Mondays are always in Tampa but Thursdays are sometimes at our local doctor.

Her biweekly lab work determines the need for transfusions of either blood or platelets. In most cases she needs one of them, and occasionally both.

One thing that has been very difficult to manage is the pain on the lower part of her legs. For the past few weeks even with some strong medication, it’s been very difficult to control an acute bone pain that stretches from her knees to her toes, making it a challenge for her to take her walks or function normally when it’s even painful to be standing.

Dr. Tomblyn says that these are probably manifestations of the GVHD activity (fight) between the donor’s cells and her own. Some of the medications that could stop the leg pain could interfere with the donor's cells progress, so Carol is having to take meds that will not cause any issues against these very valuable donor cells.

Another bone morrow biopsy is scheduled for May 16^th. Where we hope the results to show an increase of the donor cell counts, which will explain why there is so much pain in her legs.

Will keep updating you.

Thank you.

Jaime

Breathing In Good Biopsy Results...

After so many months of fear, doubt, hope being held onto with every bit of strength I had, my Dad and I got to hear the final biopsy report from 4/4/11 showed my leukemia blasts went from 15% prior to the first Donor Lymphocyte Infusion to 3% after the first DLI!!! My neutrophils went from .26 to .4, one small step in the right direction, and hopefully we'll see some some rising blood counts in a few weeks. So, still waiting, but with so much more hope than ever!

My next biopsy will be in 4 weeks, very exciting! I'm in the middle of a mental adjustment I wasn't expecting to have the pleasure of experiencing.

Back to last week, I had a great time being with Sherry(sis-in-law), walking, talking, shopping, cooking & all full of nurturing for me as well Daniel. There was also time off for Jaime to spend the day in Miami on business, while Sherry covered any IV's needed during that time.

Friday, just as my Donor Lymphocyte Infusion (DLI) ended, Susan appeared. I had been watched for an hour before they released me to make sure there were no immediate side effects, then off we went down where our driver, Jaime, was waiting to take us home to SRQ. Had a yummy dinner and Upwords was played and as per Aunt Natalie, Upwords/Upwards have been closely related! Saturday morning was a challange with my leg pain intensity just not wanting to cooperate even with the drugs, so at one point I just said "%$#@@$% it, let's go to the beach. We grabbed some supplies and off we went. Walked a bit in lots of pain, so back to our chairs where Susan faced her chair toward me, I put my feet up and slowly the pain went away and I was in heaven with an unbelievable breeze, yellow warning flags flying for swimmers and surfers, and it was just more than anyone could have expected for 11 in the morning! What great beach and sister time all in one! Susan did all kinds of cooking in the afternoon. For us, delicious yellow tail snapper coated in pecan meal and a veggie lasagna and for the carnivores, a meatloaf with veggies, then topping it off with chocolate covered special dessert to take to our Passover dinner.

Skipping ahead to Sunday morning, my donor was in the mood for a power walk, so Susan and I did a 4 mile walk in the beautiful morning air! A quick little shopping trip to Ellenton in the afternoon, and back in time for a most wonderful Passover dinner at Joyce and Dads's. We couldn't have have had a more perfect ending to Susan's trip! Thank you, Joyce, for your warmth, love and good cooking!

I am now awaiting the arrival of my cousin David from Seattle, who won't get to see the space shuttle launch as he planned, but I stayed in his plans. So yeah!! I'm getting ready to spend the next 24 hours laughing. More good medicine!

Thank you all who have been brave enough to continue calling and writing even during all my crabby days and hours. I am so happy to finally be able to give you all some good news!

Love to you all!

Carol

Approaching My Second Lymphocyte Infusion

Hi Everyone,

These have been a very trying couple of weeks due to the waiting and balancing pain in my legs, medication, weekly transfusions of platelets, and red cells. I feel pretty good when the pain is gone and I can, even for a short time, forget what's really going on.

Good news... yesterday while at Moffitt, my doctor visited us while I was having yet another transfusion, and said that although she only had preliminary results from the biopsy, still showing about 15% leukemia blasts, given that my GVHD has been kept to a minimum and and I've been able to stay fairly fever free, just low grade at times, she has scheduled me for this Friday for my next donor lymphocyte infusion. I'm ready. It's getting old, this statis quo. Of course I'm looking forward to some, even just a little positive results. The first one was positive in that I tolerated it well.

In the meantime, my April fun has already begun! Last Sunday while Aunt Brenda & Uncle Jerry were visiting at Dad & Joyce's, Frankie & Sandy made the 3+ hour drive from Boca so there was a small family reunion. So sweet for all of us. As I write, I am waiting for Sherry, my sis-in-law to knock on the door and spend the next three days doing everything we can. Friday, when we have our appointment at Moffitt, we will be picking up my sis, Susan, for a short but sweet visit til Sunday, then Cousin David, from Seattle will come for a 24 hour visit. He was supposed to be coming to see the shuttle launch, but, so much for plans.

I have been walking almost every day with my dear ole Dad and he has come up to my speed and even gone an extra mile without too much complaint! He is also perfectly accomdating when I need to be slow. It has been very good for both of us in many many ways and I am grateful that they are close enough that we can just pop out our doors at a moment's notice.

This past Sunday evening we met Donna & Joe at Turtle Beach for a most beautiful Sunset and even a bite to eat at the Thai Restaurant since it was late and no crowds to worry about. So great to finally see Joe and Donna after all their weeks of business travel!

Thank you to all of you who have called and visited, it's so wonderful for me just to feel your hugs and know you're still there supporting me. It has been a long long road and is still in motion. I so hope to be able to share good news with everyone very soon.

And one more little upcomimg visit, Alexia, Trevor & Bella will be arriving on Thursday, April 21st for spring break, which I am so grateful to be present for. Can't Wait, but, one day at a time.

Love to All,
Carol

Good afternoon everyone, Sorry it has again taken so long for an update, but as I'm sure you all know life gets busy and then there are those times that just take unplanned routes and you have to go with it.

Since my lymphocyte infussion on March 10th, I really can't say that there has been much physical change as of yet. It still may be early. I had hoped that the fact that my last transfusion of red cells which lasted three weeks was a good sign since I just had to be transfused this past Monday with one unit of red and one of platelets.

I went to Dr. Chu's office today instead of Moffitt due to some very good weather advise from my friend, Jeri. I had my blood draw and PA appointments here in Sarasota so as not to chance the wicked weather and traffic risks. I'm not quite as bouncy this afternoon as I was this morning during my power walk with Daniel, my reds are down to 8.5 today and I'm scheduled to be at SMH Day Treatment Center for 2 units of red tomorrow. So it's a bit of a downer and I'm a bit discouraged, but here I go again. If you think this story is getting monotonous, I agree. This is the only way to keep me up and running until something more positive happens with the lymphocytes.

This coming Monday I'll be up at Moffitt again, starting with a Bone Marrow Biopsy and the usual blood draws and doctor or PA appointments as well as a visit to Dr. Greene who oversees my need for daily IV antibiotics which Jaime and Daniel have been administering morning and night. As soon as there is enough information from Monday's biopsy, Dr. Tomblyn will determine if it will be beneficial to infuse a second and larger dose of my donor's lymphocytes which were divided and frozen on March 9th upon arrival.

I have been walking 3 to 4 miles almost daily, depending on the pain in my hips, knees and legs, either with my Dad and/or Daniel, and many of you sweet friends as well. I've also kept myself quite busy with some fun art projects, reading, cooking and the usual daily chores. Taking care of myself has been quite a chore for me, Jaime & Daniel. I am grateful for all they are and to all of you and the enormous amount of support from all who have touched my life during this long year...and counting.

Thank you all for keeping me near and for being such wonderful spiritual boosters.

Susan's visit and blog contribution

While this is a delicate time -- waiting and hoping with every positive thought & bit of karma, that the new donor cells will boost the others to take over -- we focus on the moments when we share smiles & hugs, a game of upwards, and a walk whenever possible! Dad took a few walks with his girls which was very nice.

There is also the positive energy that comes with team work...taking turns shopping, prepping & cooking food (among other daily "chores") ... all less of a burden when divided & conquered. There's that satisfaction of seeing a meal come together & being enjoyed by all...life's simple pleasures (not to mention the even better pleasures of good leftovers for later or the next day, right, Daniel?!).

There are times of the day & eve that are difficult because of pain and/or fever (related to GVHD and neutronpenia), but the times that are pain & fever-free are when Carol's energy returns and we are able to just "be" ...and we all feel that surge of freedom and relief.

Yesterday was a real gift -- Carol & I spent several hours at Turtle Beach -- warm breezes, perfect temp in 70's, clear gorgeous water. She was feeling good all afternoon so we closed our eyes for a little while to breathe in the ocean sounds, walked a bit towards Midnight Pass (one of our favorite places), and just felt very thankful to have a good span of time to enjoy the beach in each others company. We decided dinner was second priority & stayed as long as we wanted to...made a late dinner & stayed up to watch 2nd half of a movie we'd started the night before. Guess you can say we squeezed everything we could out of that day!

Today Dad & Joyce came over to visit for a while...after a slow-ish start, Carol & I fit in a walk in the neighborhood -- it was great to see her pace pick up since her energy somehow rebounded...despite her need for platelets today...mind over matter? Then we headed to Moffitt for Carol's appointment & I left for the airport.

Thank you again for sharing the last 4 days with me....love-filled & lots of amazing team work :-) Susan

A fun weekend and some schedule changing

The lymphocyte transfusion has been rescheduled to Thursday, the 10th due to the donor's availability. Then we will look for a reaction of GVHD within a few days to indicate that the lymphocytes are doing their job.

This weekend we have our always fun visit from Alexia, Trevor and Isabella. My mom has been feeling very achy, but she's able to keep somewhat distracted with games, art-ing, good food and fun outdoors at the beach and around the neighborhood.

Carol’s donor cells will get a boost

Carol will be receiving a lymphocyte transfusion scheduled for March 8th at the Moffitt Cancer Center. The same bone morrow transplant donor (whom we don’t know but so much appreciate her cooperation and invaluable matching blood) is again volunteering her time and blood for her lymphocytes to be harvested.

All the scheduling had to be planned and orchestrated in advance. The harvesting, currier transportation from somewhere in Europe and Moffitt’s own screening procedures before going ahead with the transfusion. Only a small dose of the lymphocytes will be transfused on March 8th. Keeping the rest frozen and used if needed. All at once could cause acute GVHD (fancy word for rejection).

Ideally doctors are looking to have a moderate GVHD reaction to the transfusion. This will show the activity of the donor cells trying to overtake Carol’s own cells, specifically her Leukemia cells. Once the donor cells attack her Leukemia cells, more lymphocyte transfusions are an option if needed to reinforce the donor’s cells' to put her Leukemia into remission.

Doctor Tomblyn informed us that with Carol’s aggressive Leukemia cells, the odds of the donor’s cells plus the additional lymphocytes have a chance to work but are not guaranteed. We all know about Carol's reputation of not going by anyone else's odds. So here she goes to prove that she can beat this disease again.

While we are gearing up for March 8th, we are all excited about another visit from Alexia, Trevor and Isabella from March 4th til March 8th. And Susan from the 10th to the 14th. We all know how much Carol treasures her visitors, but when the visits are from her Sister, daughter, granddaughter and son in-law, words cannot begin to describe her excitement.

On a personal note, sorry to all of you that had to call about Carol's updates. Maintaining this blog as much as I would like to with so many other things going on at the same time becomes a bit overwhelming.
Thank you for your patience.
Jaime

Meds and more meds.

Last Thursday Carol resumed her Vidaza treatment after having to be admitted to the hospital twice in the last two weeks due to constant fevers. The first time she was admitted to SMH, and the second time to Moffitt.
She is now on the second cycle of Vidaza and it’s given at her local oncologist clinic in Sarasota for a total of 7 days. There are two more days left for this cycle. (today and tomorrow Friday)
3 weeks after the Vidaza cycle is completed a bone morrow biopsy will be done to monitor the blast cells. The objective of this drug is to put her Leukemia blasts into remission so the lymphocytes from the donor can be transfused to Carol, giving the original donor cells a much needed boost. Dr. Tomblyn said that additional Vidaza cycles can be given to Carol to accomplish this goal.
The weeks to come are again a waiting game until the next biopsy which will determine what the next steps will be. While at home, she continues with her 4 daily IV antibiotics along with her other meds.

The fun part.
Over the weekend Carol’s sister Susan visited and what a fantastic help she was (as always) not only for Carol's spirit, but also for the body and mind.
Susan took great care of Carol and then she found the time (twice) to cook the most delicious dinners, not just for Carol. She also managed to make some special meals for Daniel and me. We really enjoyed and appreciate it.
Also over the weekend, Carol’s Brother Mike, who was sailing from Burnt Store Marina to Venice, stopped by for a visit.
In the meantime, we are looking forward to Natalie and Al’s visit from Philly next week and Susan returning on March 3rd to be with Carol while I work away from home for a few days.
Will update more soon.
Thank you.
Jaime

Back to Sarasota to continue treatment

To resume her Vidaza treatment at her local oncologist in Sarasota, Carol is being released tomorrow Wednesday from Moffitt after being treated for her fevers during the last 4 days. The antibiotics that were started at Moffitt, will be continued via IV while at home.
Preliminary results of Monday's bone morrow biopsy continue showing signs of stubborn Leukemia cells, so Dr. Tomblyn will start the process of contacting the original transplant donor in order to set up the collection of the lymphocytes to give the needed boost to the transplanted morrow. This process could take one month, but if more time is needed Carol will continue with more cycles of Vidaza until the lymphocytes are collected.
Will continue updating soon.
Thank you.
Jaime

Back to Moffitt

Only a few days after being released from the Sarasota hospital, Carol was having mild fevers on and off.
Once they reached over 100.5 I called Moffitt and was told to bring her directly to the BMT floor where she was immediately admited.
She is now being tested to identify the source of her fevers. Tomorrow morning she will finally have the postponed biopsy.
Thank you.
Jaime

Minor update – Carol is back home

Carol was admitted to Sarasota Memorial Hospital last Thursday due to a spike in her temperature. Being neutropenic (insufficient white cells to fight infections) she had to spend 7 days receiving antibiotics via IV’s to get her fever under control.
Now we are home with her fever gone. I will be administering her antibiotics via IV for another 2 weeks (+/-)
The bone morrow biopsy was rescheduled at Moffitt for next Monday the 31st and a visit with Dr. Tomblyn was rescheduled for Friday the 4th.
Then we should find out the biopsy results and discuss future treatment.
I will update in a few days.
Thank you.
Jaime