Caring Cousins

Frank and I arrived on Tuesday, August 30 at 3 pm to be greeted by Daniel and Carol. Our instruction lesson took place shortly after our arrival; our instructor was quite good and well versed on the subject. His name is Daniel Gray, and he covered everything in short time. He hooked us up and we were ready to go. Then Daniel was off for a few days to do his own things.
Frank went to the grocery store to stock up on the things to make our party complete. After his return home we started preparing the evening meal. We had so much fun cooking and eating, laughing, chatting and just plain family time. Our time here with Carol has been great; to say she is an inspiration to us is putting it in the simplest of terms! Keeping up with Carol is no easy task! But she is keeping us on our toes. Carol is the fastest power walker of us all, and has run us ragged each evening. Spending time doing word games has been lots of fun, and believe it or not, watching TV is almost non-existent because there are so many other things to do. The puzzles are maddening, but we can’t resist trying to find those tiny stinking parts to fit into a 1000 piece puzzle where everything looks alike. I think it is Jaime who stirs it up then leaves the puzzles for us to complete. He starts them for others to suffer over. Thanks Jaime!!!!
Our time here is coming to an end and I’m saddened to say we will miss all of the fun we have been having. All of the simplest things that we all take for granted at times, are the things we have enjoyed the most while being here. The yoga classes, the trip to the hospital for the blood work report, the family meal time and preparations, games, the evening walks and most of all spending time with Carol have been great. By the way, Carol is doing extremely well, all of her numbers are up and getting to where they need to be!!
Thank you, Carol, for honoring us with the opportunity to share in your recovery. It means so much to Frank and I.

Warmly,
Sandy & Frank

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

Magnesium Sucks!!!

July 28, 2010

Last night we had a better sleep at the apartment. Mom has yet to sleep smoothly through the night due to some some uncomfortable side effects. This being said, we both feel it is better than hospital sleeping. We had an early wake up (6am) due to an early appointment at the clinic. We got a nice little room with a bed and comfy chair, as opposed to a small partition with one chair. Mom got her vitals and blood work taken first.
Soon after, the blood work came back and we were both very pleasantly surprised that her white blood cell and neutrophil count had nearly doubled! Yesterday white was 3.41 and today it was 5.01, which puts her in the normal range!!!! Her neutrophil count yesterday was 440 and today it was 1450!!! This meant that all of her IV antibiotics were stopped today. That was great news...her magnesium count, however, was down, so they made her have another IV of that. Unfortunately, that is the stuff that makes her feel "yucky", so towards the end, she was uncomfortable.
During most of the process, she was making plans for the rest of the day and we were playing games (me beating her of course..because no mercy... )during the last hour, she started losing some steam and began feeling tired...but not before enjoying a delicious salmon wrap... i made sure to keep her fed and hydrated...
Daniel came in from Sarasota to hang out with us. We caught up while the IV finished. Finally, around 2:30, it was done and rather than going through with all of our best laid plans, we went home to the apartment for an energy boosting nap. Mom woke up feel better, but tired. After nap, i did some some shopping and we cooked some dinner. Now, before bed, I am going to whip everybody's butt in whatever game we decide to play...
Gotta go...
Alexia

Free At Last

I will continue where i left off. Last night we played some games, laid low and tried to get a good night sleep. Mom had a headache throughout the night, so her sleep was a bit disrupted, however after breakfast she was feeling better than the last couple of days. Her fever has not returned, so this morning they let us know that we would get to go home...to the Tampa apartment. Mom's blood levels are still holding steady and mostly on the rise...at least the whites are (3.41) ... and that is what we are after!
As soon as we heard that we would be leaving today we began to search for what was packable so we could bust out in a flash! We watched a movie and waited around for all the different teams of nurses and doctors to give us the "blessing" we needed to leave. Finally, at around 3:30 we were told we could evacuate...good thing mom had her sneakers on...I've never seen anyone take off so quickly...Later, when i found her pacing the parking lot waiting for me to catch up, (just kidding ..as the caregiver i never left her side) we loaded up and took off...FREE AT LAST!
Since then we have been at the apartment trying plan healthy recipes for the rest of the week. Together, we have concocted some tomato sauce...with a green tint (spinach)...and are going to be sitting down to a home cooked meal momentarily. Later, we plan to take a short, slow walk around or by the lake and head in for a long awaited restful night sleep!
That's it for now...stay tuned...
Alexia

Monday, July 26th

I arrived Saturday evening (a little delayed due to weather) and was greeted by Jaime at the airport. First stop, hospital to see mom. I found her beautiful as ever, but with chills and lots of covers. Her previous fever had broken in the morning, but had returned this evening. There were no signs of infection, just something that "happens" and "is normal", we were told. Not great news for our plans of freedom, fun and frolicking in the very cool apartment that i was told about. So, the doctors told her that she had to be fever free for 24 hours in order to go "home". Prior to getting my tour and instructions for the next few days, I hunkered down and ate mom's hospital dinner...because she eats stuff that is way better for her..and someone has to eat it! Since we were illegally parked, we rushed out and ran over to the apartment so i could get acquainted with the roads and my instructions for discharge. We got a few things together at the apartment and i packed my little bag for the hospital. Night one for me. Mom and i got caught up a bit, but we were so tired we both went to bed. There are lots of visitors through the night, checking and measuring things. Both mom and i woke up pretty tired. Her fever broke in the morning, but came back closer to mid day, which left her feeling tired and "yucky". Even so, we were able to play a couple of rounds of uno...and p.s. even through the yuckiness, she still managed to beat me...and a game of upwards. She has been eating pretty well considering she isn't really interested in food due to the metallic taste in her mouth. As far as her numbers, her white blood cell count was .84, hemoglobin was .89, platelets were 235 and her neutrophils, were 130. The neutrophils, which are the ones needed to fight infection, need to go above 500, so it was great news to hear that they were climbing. Mom was able to take a nap while I snuck out to the apartment for some supplies and a shower. After waking up, she felt a bit better and her fever was still down. We were able to take a walk through the hospital and she showed me the bone marrow transplant wing, where she had spent the first 3 weeks during the transplant. She was able to see some of her nurse friends there and i was able to hear what a wonderful mother i have...not that i didn't already know that...Last night, mom was given magnesium sometime during our supposed sleep. This is the medication that makes her feel "yucky" so we were both up quite a bit. This morning although tired, she seems to be feeling better..she was hungry and her numbers jumped to whites- 2.04, neutrophil - 530, hemoglobin hovered at 8.8, platelets are a slight bit lower at 224, which is great! The fever is still down, so if everything continues ...we may get out of here tomorrow! That's all for now...I will keep you posted.
Alexia

Back to Moffitt for a couple of nights

Things are going as expected.
This time the expected was a bit discomforting for Carol.
Yesterday she developed a fever of 101.3 (need to report to the Moffitt clinic if over 100.5).
The nurse I spoke to asked me to bring Carol to the clinic for some blood work and other tests. Good reason to stay at a nearby apartment.
They were all prepared for Carol's arrival by the time we got there with one nurse immediately taking care of her. Several blood tests and various analysis were done within minutes of arriving. They also started her with antibiotics and hydration via IVs.
Results from the blood test came back all clear of infection, so the initial determination for her condition is called "NEUTROPENIC FEVER". The reasons were not immediately identified. Basically, her cells are fighting against the donor cells and until her white counts start to rise it's normal. Carol was then admitted to the hospital for a couple of days to keep a close eye on her, until she is without a fever for 24 hours to be able to go back to the apartment.
Doctors always said to EXPECT some signs of the transplant progressing and showing some signs of GRAFTING, which means the new stem cells are propagating AS EXPECTED.
So we are now back at Moffitt until fever free.

The lighter side.
Thursday afternoon our friend Jeri took a ride to visit and after a little yoga she cooked a meal for Carol. Daniel was here and helped getting the needed supplies for the great meal she prepared.
See Jeri in action (sorry Jeri for the poor angle/we need to do better next time).

Saturday will be a great day because Alexia is flying into Tampa at around 6PM and staying with Carol until Thursday morning. We hoped to be back at the apartment by the time Alexia arrived but Carol is still running a temperature of 101.3.
I will keep you updated.
Jaime

First Day on our own!

Hello everyone,

I hope you're all doing well.

Today was my mom's second day since being discharged from the hospital to a nearby apartment. It's a very comfortable place with a kitchen and 2 bed/2 bath, fully furnished, and in a very nice complex.

The day began early with blood work at 730am at Moffitt. My dad and I went to finish moving things into the apartment while the blood work was being done. When we got back, my mom was resting/napping and receiving some fluids in the BMT Clinic. Around 1130, the nurse came and told us that an infusion of magnesium was being added for a 2 hour period. Towards the end of it, my mom was beginning to feel uncomfortable and slightly nauseated. They slowed the delivery of the fluidic magnesium but it took several hours for the effects to wear off. Meanwhile, I attended a class for caregivers from about 330-5 and when I returned my mom was finally feeling better and ready to go. We came back, had a snack, went for a walk around the lake (about a mile including her warm-up on the eliptical) and then ate dinner and prepared for sleep before another day which will hopefully be much more easy and more fun =]

-Daniel

Ahead of schedule!!!!

A few days before we were expecting it, doctors informed Carol that she was being released from the BMT floor by tomorrow, July 20th.3 weeks after her admission for her Transplant. Not yet to go home, but to continue treatment on a daily basis while at a nearby temporary housing.
Carol was very fortunate to have received her Stem Cells from such a perfect matched donor. We are not allowed to know who the donor was for at least a year, if not two, but we can’t wait to express our gratitude for such a life saving gesture.
Doctors also added that because Carol has been steadily maintaining her body and mind in excellent shape (walks, yoga, stretches, and all kind of arts and crafts projects) while enduring the repeated chemotherapy sessions, they didn’t see the need for Carol to continue staying at the hospital’s BMT floor any longer and that she could be seen daily at the Hospital’s clinic.
Carol’s gets all the credit for her efforts and determination to defeat this latest threat at all cost.

So from now on, there is no need for Carol to be hooked up to any of the IV medications, nor being woken up several times in the middle of the night or early mornings by doctors and nurses checking on her or taking her vitals and blood samples.
All of her meds will now be in pill form with daily visits to the BMT clinic for blood work and additional tests to ensure that she continues her progress while at the temporary housing nearby. I will post the new address in the next blog.
Thank you.
Jaime