Nice weekend with one minor hiccup

One minor hiccup this past Friday was learning that results from the tests from Monday (endoscopy) showing as suspected, that her cells are fighting the donor’s cells (GVHD). To help with the symptoms the doctor started her with a regimen of steroids. Beginning with a 50 mg daily dose and reducing 10 mg per month (5 months total).
Carol’s 100 days of treatment hit the middle mark this week. Another month and a half will be all the time she needs to stay in Tampa, continuing her treatment and taking her meds while being home in Sarasota.
Saturday was a fun day. Joe and Joyce visited us bringing along a bunch of delicious goodies to prepare lunch, so we spent a little time enjoying the visit and obviously the food.
Later on Saturday, our friends Joe and Donna Smith arrived with a great smile and tons of goodies and cooking tools which they used to prepare dinner at our apartment. Donna must have checked all kinds of known and unknown sources to bring only things Carol could eat, due to her stomach issues.
So the fun begins with Joe and Donna taking over our kitchen and preparing the most delicious dinner from scratch. They made delicious Tilapia, mashed potatoes, steamed carrots and string beans. They even brought some non alcoholic, all natura ginger beer (aside from wine) so Carol could have a drink too. We sat and ate dinner and talked about many subjects for hours. We enjoyed every single morsel of food and every second of their company. We look forward to our next encounter, but next time Carol and I will bring the goodies and do the prep.
Today Carol spent a little time skyping with Isabella. It’s her third birthday. “HAPPY BIRTHDAY BELLA”
She is 3 and already acting as if she were 10!
After he is done work today, Daniel will be coming to stay with Carol for a couple of days until Tuesday, when Cousins Frankie and Sandy take over for the next few days.
Michael (brother) & Sherry (sister-in-law and previous caregiver and in-house artist) will visit either Friday or Saturday when they are done their sailing trip!
We look forward to all our visitors and volunteer care-givers and continue being thankful to you all for communicating and helping keep Carol in good spirits!
Thank you.
Jaime

Cousins visit and more...

Carol continues at a steady pace with her recovery and doing all kinds of exercises to keep her body and mind strong. Exceptions to her rouitne workouts are only when the weather gets in her way. For the past few days the heavy rains have forced her to take her walks around the lake at various times of the day when the rain lowers the heat and humidity. Otherwise the cooler evenings are better. She also fits in workouts at the gym when it rains. There is still one activity she really craves (rowing anyone?)
On Monday's visit to Dr. Thomblyn (head of her medical team) Carol was told that her blood counts from last week were very good and that she was doing very well overall. Tomorrow we should have the results of the biopsy of tissue samples from her digestive track and see if any modification to her meds are warranted.

Now the fun part....
Tuesday started with a great visit from cousins Frankie and Sandy, who drove all the way (4 hours each way) from their new place in Boca Raton to spend a couple of days with Carol. They made the much anticipated move from New Jersey to Boca Raton, so we will get plenty of opportunities to see them more often.

We had a lot of fun during their visit reminiscing about family and friends, which happens every time cousins in our family get together. All the while trying to make a dent to our half way done puzzle.
Aside from having a really good time with them, Frankie and Sandy came up with a very nice surprise...volunteering to come back next week, this time for the roll of caregivers. It will give all of us a nice break but most importantly, it gives Carol a shot in her arm (not literally) and I can get back home or make a short business trip.
Our son Daniel has been giving both of us great support. Taking over the care giving duties any days he gets off from work every week since Carol was admitted to Moffitt. He is always very gentle and careful and keeps pace with his mom while also having lots of fun walking, working out or playing games with her,taking her to the clinic, to the doctor appointments and her yoga classes 3 to 4 time a week.

Thanks to all of you that call, send cards and letters, text or email and keep up with Carol's progress.
Jaime

Chick Flick and Other Simple Pleasures

This was my first weekend as caregiver in the apartment, vs being a companion in the hospital, which carries a layer of added responsibility….particularly if the “patient” is in need of a lot of care. So far so, so GREAT. I arrived yesterday morning (Friday). Carol looks and feels very good, she has energy and counts are all in good shape. As long as she is on anti-rejection meds, she may continue to need to supplement magnesium, and potassium & sodium levels are still low, but those are of course very minor in the scheme of things. Bottom line is, we are able to go out together when needed or for walks when the sun goes down (she is sun-sensitive now and it tends to be oppressively hot this time of year anyway). Yesterday right after a quick lunch, we had a date to get to the movies – this was the first time in 6 months that Carol went to a movie theatre (yes we saw a chick flick, Eat, Pray, Love...totally predictable Hollywood writing & ending but fun nonetheless!) . There are certain times I wish I could capture Carol’s expression or her sense of excitement on film, and this was one of those times, but you’ll have to imagine what it must be like to finally have a little freedom to be in a public place (with a mask) when it’s not too crowded and feel normal, not be wearing that patient label…enjoy some popcorn (another first in many months), get lost in that movie. Later we made a terrific dinner together (so nice to cook together and enjoy it together) and went for a walk at sunset (it’s August in Florida…I wonder how even the Herons and Grebes can breathe??).
Today we went to the fitness center (walked around the lake until we lost our cloud cover) and again, so great to be in a public place doing what normal people do, and doing it together, was healthy for both of us of course! Dad & Joyce came for a visit at lunchtime, and we celebrated Dad’s birthday a little early – so nice to be together for that….they brought lunch, we had birthday desserts & I shared some travel photos…very sweet visit. We went out to run an errand or two, including picking up some ingredients to compliment our dinner, and ended the day with our favorite game of scrabble.
We’ll see what tomorrow will bring beyond the required visit to the clinic. I may not get to finish this weekend tale before I fly back to NJ, but I’m SO happy to see Carol doing so well, and taking small steps to regain some freedoms and enjoy some of life’s simple pleasures…I’m so proud of her ability to make the very most of being present in the moment, keep her mind sharp and have such inner strength and forward-focus. Of course the love & support & dedication of her men & daughter & parents & extended network of family & friends helps to keep powering that engine :-)
Susan (sister)

Going and going......

Just a brief update to let our friends and family know that Carol is consistently getting satisfactory blood test results. She continues her visits to the clinic which were already reduced to only twice a week (Thursdays and Sundays) with only a weekly consult with Dr. Tomblyn who reviews her progress and adjusts her medication accordingly.
Everything is on target and we hope she can complete her 100 days cycle on time.
The normal day to day events are a brisk walk around the lake after sundown, Yoga, four times a week, some beading, some reading, some cooking and a lot of waiting for these 100 days to be over so she can come home.

Here she is on one of our walks. If you can see her smiling is because she is getting ready for Susan’s arrival tomorrow morning and have sisters bliss for a whole weekend.
Short but sweet.

Thank you.

Jaime

Biopsy results and catching up...

Sorry we didn't get a chance to update the blog for quite a few days. Not that we didn't have some great news to share, to the contrary. Here is a little recap of what happened the last few days.
Since Daniel and I are writing portions and gluing them together, this blog could be a bit confusing. Sorry for that, but the most important news is that Carol continues her progress at a very steady pace, not just by her own doing, which is quite remarkable, but we must also give credit to her extraordinary donor.

This portion is written by Daniel.
Yesterday I went with my mom to her appointment with Dr. Thomblyn who did her weekly checkup and gave us some great results from the last bone marrow biopsy!
She told us that there is no evidence of disease in the bone marrow.
The number of blood-forming cells in the bone marrow is about 40% which is where it should be at this point.
Bone Marrow Post-Transplant Engraftment: Percent Donor: 98%
Blood stream cells (a.k.a. myeloid cells, neutrophil): Percent Donor: 100%
T-cells (lymphocytes): Percent Donor: 97%
Her blood type will not change over to the donor's blood type for 3 to 6 months because of the red blood cells life span being about 3 months

30 days after her bone morrow transplant Carol needed another bone morrow biopsy to see if any of the Leukemia blast cells were present on her morrow, and how the donor stem cells propagated (engrafted) onto their new (Carol’s) body.

Bottom line: NO LEUKEMIA BLAST CELLS
And 98% & 100% DONOR BLOOD SUCCESS.

So to recap, Monday the 9th. Cathy Lankenau took over the caregiver’s job and stayed with Carol until Thursday the 12th. This allowed me to take a short business trip and then some time taking care of things at home. Thanks to Cathy for being here and for such a nice break for all of us.
Daniel was able to take over for Cathy on Thursday and then again, it was my turn on Friday.
This week started also with Daniel being with Carol until my return tonight.
Confused? We all are, but it’s great to have some relief, not only for me, but also for Carol. We all appreciate having such a great group of friends and family that so willingly cooperate under these circumstances.

Again, Daniel’s notes here.
To catch up from last week:
Cathy and my mom began their girl time, got some tea going and before long, went for a yoga session. Afterwards they came back for a walk and dinner.
Tuesday morning they visited the fitness center for the first time since being given permission from Dr. Thomblyn. Wednesday was another fun day of yoga and delicious foods and walks.
I came Thursday to find the girls playing on a Wii that Cathy and Gary have lent for the duration of my mom's stay here. They hadn't played it much before due to lack of batteries for the Wiimotes. Cathy had to go and we've been hoping to find time to play some more between all the other things going on.
Friday I left early to get to work and my dad came here to stay until Sunday night when I came back to stay with my mom until Tuesday night. My dad is back now.

OK, now we have to think about what we forgot to tell you and prepare another blog soon.
Thank you all.
Jaime

Steady progress!!!!

For the past few weeks Carol’s blood work has been showing improvement at a steady pace. She continues eating well and exercising very actively. Walking, elliptical or yoga, and some days all of the above. The apartment complex has a very nice walkway surrounding a big lake. Carol is walking 4 times around at the end of the day when the temperatures are lower and the sun is not out. Sunsets are just fantastic.

She is smiling behind her mask

Yesterday Carol had her 30 days after the transplant bone morrow biopsy test. We will have preliminary results in a few days, with more detailed results 2 to 3 weeks later. Detailed results will show the percentages of stem cells that belong to Carol and the ones that came from the donor. They are all Carol’s now :-)
After the morning biopsy we had an appt. to see Dr. Tomblyn, her head transplant doctor, for her weekly review. Dr. Tomblyn was very satisfied with Carol progress over the past weeks and after a check up and medication review, Carol was told that visits to the clinic are now further reduced to twice a week (Yeah!!!) So for now Carol needs to be at the clinic only on Thursdays and Sundays.
Aside from that, other restrictions were also lifted.
She can now go to the apartment’s gym, to a restaurant (when it’s not full and sit away from the crowds), go to the movies (eat popcorn too). Of course continuing to be very careful, wearing a mask when going out, and making sure that gym equipment and other things she touches are cleanly wiped, and of course constantly washing hands.
Carol had a bunch of really great caregivers and visitors over the past weeks. We are all very grateful to all of them for giving us all a bit of a break. For Carol to have a refreshing change to her daily routine and for me to have a bit of a break to go home and do some work.
Sherry Kravitz took over the caregiver’s job for a few days last week. Tons of kraft projects and a great time overall.
Daniel also spent a couple of days in Tampa and had a chance to visit with his aunt Sherry.
Chris Gilligan visited on Sunday for a few hours. She brought some goodies to eat and play with.
Cathy Lankenau arrived yesterday and she will stay with Carol for a few days. Its girls time again!!!!
Thank you to all of you that continue calling, texting and visiting. It’s doing a great job lifting, even more, Carol’s already great spirits.
Will keep you posted.
Jaime

Goin easy :)

Hello there,

Daniel here.

The last couple days have continued to go well! No long infusions, just quick stops at the clinic for vitals and blood work and then off on our own. I arrived while my aunt Sherry was taking care of my mom so it was great to spend time with the two of them and see them having fun together.

They worked on several art projects together and made lots of delicious food. The morning before we took Sherry to the airport my mom's blood counts had all gone up again so everything is still going well with that. After we left the airport, we came back and ate, played games and then it was time for an hour long yoga session. After that we went for a 4 lap walk around the lake (longest yet!). We had plenty of food left from Sherry's cooking which we enjoyed again for dinner.

The next day we went for a short walk after breakfast. We also were visited by a woman from the apartment complex who cleaned the patio for us and replaced our pots and pans with some stainless steel ones and more stuff for the kitchen. My mom did an hour yoga session at noon and later on we made a trip to get some groceries that we needed and the final ingredients for some muffins to be made that night. We played part of a game of UpWords before my dad arrived and I had to head home.

We had a very good couple of days together!

Thanks again for taking the time to check this and for all the love you've all shown us.
I hope everyone is doing well!

-Daniel

Time for more fun

Sorry it's been so long since the last post. it's been an exciting few days.

I arrived on Sunday afternoon for a little more R and R with Carol. We went straight to the BMT clinic from the airport to find out that Carol 's lab reports were so good that they didn't need to give her anything.

Jaime took us to the apartment to show me around before he left to go home and get ready for his business trip to Miami. Carol and I both took a short nap, then off we went to the craft store for more fun supplies.

Monday morning we got to the clinic at 7:30 and they just took her vitals and she didn't need any blood work. At 8:00 we saw Dr.Thomblyn and she was very happy , she said that all Carol's lab work looked great and cancelled her chest x-ray. Dr. Thomblyn also said we didn't need to come back till Wed.


Yay! two days off!


Monday night Carol flushed her ports herself, the first time since the nurse came to the apartment to show her and Jaime how to do it. Then we did art projects and listened to 70's music till almost 10:00 Due to the secret nature of the projects, and to keep recipients from seeing the secret ahead of time pictures will not be posted.


Today we slept till 9:00, what a luxury. Then we had a nice relaxing brunch before going to yoga class. After the class, we went home for a little lunch. Since it was so hot out we decided to go the mall for our walk. So we got a little exercise and a couple of cute tee shirts too!

Then back to the apartment to meet Daniel. Once Daniel arrived I went to the market for stuff to make dinner, while Carol took a little nap.
Carol flushed her ports again, this time with more confidence and efficiency that last night.

The three of us just finished a big dinner of Scallops, Bok-choy, and rice with more veggies.
Time to enjoy a cup of tea, some ginger snaps, and each others company.



It's been fun and inspiring to be here with Carol once again. and so good to see her growing stronger by the day.

Thank you for reading this blog, and for all of the wonderful encouraging comments. Keep them coming, they mean so much.

Love, Sherry