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