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