The transplant

The day is coming soon!!!
I wanted to write some clarifications for our family and friends who are trying to understand how the transplant is done. Having had chemotherapy twice in the last couple of months, Carol’s is in a remarkable physical shape to go through this new voyage.
At the recommendation of all doctors involved in Carol’s treatment, she has been trying to gain some weight before the transplant, eating a very healthy diet of fish, vegetables, fruits and adding many other supplements recommended by Dr. Leiber and Dr. Block.
With a very strong body but a bit nervous about the long journey ahead, Carol will be admitted to Moffitt on the 30th of June for her Bone Marrow Transplant.
Here is what her calendar will look for the beginning of her treatment.

6/29
A Central Line access is placed on her chest to have better access to her larger veins.
The picc line on her arm will be removed at the same time.
Other necessary tests, assessment and consultations prior to admission.
6/30 Day Minus 6 ADMISSION
Admission and infusion of the chemotherapy treatment.
The chemotherapy is needed to help wipe out her own blood count in preparation for the transplant of the donors “peripheral stem cells".
7/1 Day Minus 5 Chemotherapy infusion
7/2 Day Minus 4 Chemotherapy infusion
7/3 Day Minus 3 Chemotherapy infusion
7/4 Day Minus 2 Rest
7/5 Day Minus 1 Rest
7/6 Day “0” DAY OF THE TRANSPLANT
(Via infusion of donors peripheral STEM CELLS)
Following the transplant, Carol will be under constant watch by doctors, nurses (and me), to monitor any reactions and given preventive medication to help minimize any of the anticipated side effects.
Depending on how her remaining stem cells react to the new stem cells infused they create a condition called GVHD. (Graph versus host desease)
Doctors do want this reaction to occur because it proves that the new stem cells are doing what’s expected, overpowering Carol’s weaker Stem Cells (4 first days of chemo) and start building up new white/red blood cells and platelets.
Carol’s blood type will then become the same as her donor. O Positive.
Until the transplant, Carol’s blood type is B Positive.

Doctors expect Carol to stay at the hospital for approx. 20/30 days.
For the following 60 to 80 days Carol will need to stay nearby the hospital (temporary housing) for daily visits so they can monitor her progress.
We all know Carol is going to fight hard to regain her life back as soon as possible. She is packing her yoga clothes and her walking sneakers so the USF campus is again on her sight.

Carol wanted to share some of her FEEL GOOD on the water action the last couple of days.

Rowing has been just incredibly wonderful for every part of me! Tuesday we (Jay, Jan and I) encountered 2 huge manatees mating in the stretch leading to Midnight Pass!! Today, Saturday, was a fabulous row with Donna who came to help me launch and kept me going with my interval training (a few, 2 minute-40 hard strokes), but no other crazy stories to tell other than some wonderful meditation at Midnight Pass and so many turtle tracks of turtle moms looking for the perfect place to nest!

We want to thank everyone for the continued show of support in all imaginable and unimaginable ways.
Sincerely.
Jaime

Susan's visit and blog. June 21st.

This past weekend was an infusion of another kind – nothing like sister-therapy, and certainly it works two ways!

I got there late Thursday eve, in time to say g’night, and then we had all day Fri-Sunday together.

Overview:
It was great to be able to squeeze in another visit that allowed us both to just be sisters, work on a new exercise routine, get onto the beach for a walk-run and a swim-float, cook a few meals, go on a little hunt for the perfect hat. Plus, Sunday being Father’s Day, gave us the opportunity to celebrate our Dad together, which doesn’t happen very often (I’m typically not terribly inspired to be in Florida in June…sorry Dad!)

Before I arrived, Carol had had a terrific telephone conversation with a 46 year-old woman who had her bone marrow transplant in February, is traveling & maintaining an active schedule, and also shared that she was in touch with everyone treated on her floor and they were all doing well. She’s even planning to visit Carol at Moffitt. Needless to say, that call was extremely important & uplifting.

Long weekend agenda:
Friday we prepped for a call with Dr. Block, an Oncologist in Chicago who founded Block Integrative Medicine Center. They run a very unique breed of cancer center in that they completely integrate Western therapies with organic cooking, supplements, massage, exercise, etc., so he is an expert on how these can be complimentary to traditional therapies to help fortify and protect the body before, during & after cancer treatment. The objective of the call was to understand how best to tailor Carol’s supplements, diet & exercise to her needs before, during & after the bone marrow transplant, to help her build on her strength & ability to recover and to help ensure maximum protection of her organs while undergoing treatment/transplant and beyond.

It was interesting to hear Dr. Block talk about what supplements to stop taking or to increase, prior to and during treatment, and reasons why. For example, he mentioned that most multi vitamins contain an ingredient that generates growth – not something you want for someone fighting off cancer cells. He recommended against animal fats, including egg yolks & dairy, because they make our bodies more receptive to cancer cells.

He moved onto exercise & recommended that Carol integrate some fast spurts of high level activity into her endurance power-walking, to increase heart rate for 30 seconds or so at a time, in the a.m., to train her body to recover. He discussed the importance of meditation & massage to fortify & focus, relax, heal & recover. He discussed some things that Jaime should do to stay strong too, and ways to work with Carol e.g. massage, to compliment relaxation techniques she can do on her own.

Dr. Block suggested that Carol needs to prepare for this next step like she’s packing her spaceship for a mission – quite a powerful image when you think about it! So when you send your love, pack it for space!

Friday night we went out for a wonderful dinner with Dad & Joyce – to a family-owned restaurant specializing in vegetarian, vegan and fish where Dad & Joyce had found soups to bring to Carol during her most recent hospital stay. The owners came by to meet us and of course were thrilled to be meeting the person who had been nourished by their soups!

Saturday we tested out the new power walk-jog-power-walk routine, enjoyed Siesta beach and the warm, mint green, still pristine (thankfully), calm Gulf waters…at least until almost mid-day when the “leave or fry” alarm went off in my pale freckled skin. Rest of day just did this & that, and then cooked a nice dinner together...Daniel joined too

Sunday after Dad & I did an early beach walk, Carol met up with us & switched places with Dad, so Carol & I could move on to the workout-walk & swim-floating activities along with schools of tiny fish, at chin level with the sparkling surface of the water. Nothing like breathing all that in…and mentally packing all that beauty into that spaceship (mentioned above), till the mission’s accomplished, and till we can do this again.

We wrapped up the day back at Carol’s house where Jaime had prepared a great Sunday brunch and we were joined by Dad & Joyce, watched part of a movie, and then off to the Tampa airport.
Love,
-Susan

June 15th update

Preparations for Carol’s bone marrow transplant continued this week. We met with physicians and nurses that methodically explained and reviewed all the important issues involved with such a delicate procedure.

Also, because of some scheduling issues with the overseas donor, a few more days where needed, so Carol’s admission date is now scheduled for the 30th of June. Prior to her admission, she needs to be at Moffitt the 29th for a “central line” to be placed on her chest and remove her “PICC line” from her arm.

In the meantime she will continue to be seen by her local oncologist (Dr. Chu) for blood work.

Over the weekend Carol took advantage of the beautiful weather and went ROWING.
Yes, in trying to keep her spirits high, she wanted to row, so I helped her to get her shell on the water (as if it was needed) where she met with her friend Becky for a row that started just near the launch area but turned out to be a row all the way to Midnight Pass, where Carol parks her shell and walks to the other side of the dune and voila, she is in the waters of the Gulf. She also went for a spin today with her rowing shell with her friend Jay, who ushered her all the way to midnight pass and back again.

If you look closely, you can see that her left arm is wrapped with a plastic bag to avoid her PICC line getting wet.

Rowing will probably happen again next weekend but this time it will be with her sister Susan, who is arriving on Thursday evening and visiting until Sunday. This is a warning to anyone that tries to contact Carol not to be disappointed if she doesn’t reply until Monday.

Did you know?
The doctor explained that the donor blood type (in this case O+) doesn’t need to be a match of the bone morrow recipient’s (Carol’s type B+) as long as the 10 markers are a match.The curious thing we learned is that a couple of months after the transplant, Carol’s blood type will become O+ because of the donor’s stem cell's blood type origin.
As a side note the doctor also mentioned that in a CSI TV episode, there was a crime committed by someone that left blood and hair traces at the crime scene witch puzzled the investigators because the blood pointed to one individual but the hair to another. The case was solved once it was learned that the person that committed the crime had a bone marrow transplant that modified the blood type. If anything happens to me, please check Carol’s alibi and disregard the blood type.

OK, that’s it for now.
Thank you.
Jaime

June 10th. update

With the date of Carol’s transplant coming up soon, she needs to undergo several tests to make sure all of her organs are in good condition to go ahead with the transplant. This week we already had two trips to Moffitt for her tests and for many required meetings with doctors, nurses, social workers, etc. If everything continues according to plans Carol will be admitted to Moffitt on June 27th.

What happens when she is admitted?
Her stay at the hospital was described to us as the “100 days” treatment.
Carol will have 7 days of chemotherapy treatment. These 7 days break down to 6 days of the chemo drugs infusion and one day monitoring results and side effects but without any more chemo.
The actual transplant day is called “Day 0” of her treatment.
For some reason the count of the treatment chemo described above starts as day “minus 7”.

After the 7 day chemo is done they start the count as “DAY 0”.
On “DAY 0” she will be given the donor’s peripheral “STEM CELLS” which are collected and shipped to Moffitt from an overseas location where the donor resides. We are not allowed to know where the donor resides, but we were told the donor is a 24 year old female and not from the USA.
For at least 2 weeks after the transplant she stays at the Moffitt’s Bone Marrow Transplant wing.
After that she will be released from Moffitt, but must stay at a local housing location (not determined yet) for the following 2 months. She will need to stay nearby to be constantly seen and tested to monitor her progress.

Side effects from the chemotherapy drugs are expected to be stronger than what she experienced during the two rounds of the “CLAG” chemo protocol she just finished, but there are other possible side effects related to this type of transplant. Mainly the side effects are caused by the NEW STEM CELLS fighting Carol’s remaining stem cells, which is expected with this protocol.

Here is a brief technical explanation:
The type of Bone Marrow Transplant Carol will be having is called “Allogeneic” which means the stem cells come from a DONOR, not her own.
The additional symptoms caused by the transfusion of the new “Stem Cells” is called “Graft Versus Host Disease” (GVHD)
All patients going through an allogeneic transplant are expected to encounter some side effects, but all patients react differently. No specific scenario is given but we are told to expect side effects to occur, mainly on her skin, mouth, eyes, digestive system and liver, but since Carol’s physical condition is above other patients having similar treatment, we hope that her side effects are milder. Medications will be given on an as needed basis to combat any of these side effects.

Some of you expressed interest in finding out more details about this procedure, so here is a link for those of you to learn: http://en.wikipedia.org/wiki/GVHD

We also wanted to thank Carol’s friend Janie, who will be participating in a 100 mile bike ride on November 7th. She will be pedaling to help raise money to benefit the Leukemia and Lymphoma Society in Carol’s honor. “Thank you Janie!!!”
Interested in learning more? Check out her site/blog for more details and pictures: http://pages.teamintraining.org/sun/curewhee10/jewellyjij

The lighter side ;)
Carol’s sister Susan will be visiting again next weekend. “YEAH”
Of course, there is already a glow on Carol’s face. I already know what these two will be doing next weekend, aside of their endless conversations, they will definitely have plans for many physical activities. Walks, bike rides, rows….. (No mountain climbing in Sarasota for now except for the Ringling Bridge)

Ok, that’s all for now.
More updates soon.Thank you.
Jaime

Lots of updates

Most importantly, a donor with 10 out of 10 genetic markers was found. As incredible as it sounds, this perfect match was located for Carol. We were told earlier that at least 8 out of 10 markers would be sufficient to consider a donor, so finding a donor that matched the 10 markers is nothing short of a miracle. Not much information about the donor can be shared by the BMT team for two years after the transplant, but we learned that it’s someone overseas.

Today we met with Dr. Lancet who told us that the bone marrow biopsy showed that Carol’s Leukemia Blast Cells are still in remission. He added that because of her being in remission it would be better to proceed with the transplant soon. A tentative date of June 27th was given to us for the bone marrow transplant but we will need to meet with the BMT team in the next few days to confirm that and pre testing dates.

As expected Carol has mixed feelings about all this news. On one hand finding a good donor is great news, on the other hand knowing that she will have to return to Moffitt for the transplant brings many other mixed feelings and worries to the surface. If the date is confirmed Carol will have 3 weeks to strengthen her body and mind to conquer this next battle. So we will start pumping her up with the healthiest of foods and the best of juicing fruits and vegetables.

To change the subject a bit, over the weekend Alexia, Trevor and Isabella visited us and as usual Carol got magically rejuvenated as soon as they arrived. Of course most of the credit goes to the smallest of the trio (I am sure Trevor and Alexia understand). The weather was perfect so short trips to the beach were part of every day’s routine.

Isabella loved jumping into the calm waters of the gulf and playing in the pool at our home and her great grandparents’ home. She took control of our house after just a few minutes of getting here and that was just fine with all of us. Especially Grandmom Carol. On the last night we all went to the beach to see the sunset and ended up at the ice cream parlor for a treat.

More updates soon as we continue to work with the BMT team on the next stages.
Jaime

While waiting for a bone morrow match

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

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

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

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

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!

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

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

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".

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.

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 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

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!