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

Saturday Evening Post

“Executive Summary” on the Medical & General Well-Being Front

Carol’s been doing remarkably well – and all the doctors and nurses continue to be pleasantly surprised by her level of activity, alertness, and good humor (they are all interconnected, of course!). Her energy and attitude are infectious and she no doubt entertains the staff more than the average patient (the only “infection” allowed around here).

Since I arrived Friday morning, Carol’s white blood cell counts have gone down as expected, but her platelets and hemoglobin levels have remained fairly constant. After her last dose of methotrexate tomorrow, (a drug that’s sometimes used as chemotherapy agent but is being used as intentional immunosupression to allow for her new cells to take over), her counts may dip further causing her to be more tired and potentially could worsen the mouth sores (a typical side effect, which she’s experiencing to a lesser degree than most patients at this point in treatment). On the other hand, one of her doctors suggested that she’s doing so well, that she may actually be at a plateau point now and could be trending upwards in the next few days…we hope he’s right …shall see. Her doctors say it looks likely that mid-late next week Carol may be moving on to recovery at either the Hope Lodge or nearby apartments!

Long Weekend Activity Log & Visits

Carol & I have power-walked the halls a few times – have music (and each other) -- will travel. It’s a good thing there are different colored paths in the design of the floor so the nurses know which side to stay on to stay out of our way J. While we are limited by the geography of the Bone Marrow Transplant wing, Carol’s stamina has not so far been limited (today we walked for an hour straight at power-walk speed).

Yesterday we had a number of visits besides the doctors, nurses & techs – Bari the Yoga teacher (we both enjoyed yoga), the Massage Therapist (that was not a shared activity with me!) Physical therapist (didn’t really need her services with this much going on), and the discharge nurse…whew!

The discharge nurse’s visit (one of several that she’ll make to be sure each of her caregivers hear instructions first-hand) to discuss the next step once she leaves the BMT wing at Moffitt Cancer Center, boundaries and precautions (mostly risk of infection, falls), what symptoms to be concerned about & what to do about them. She’ll need to go to the clinic at Moffitt Cancer Center daily to have her vitals checked, blood drawn, and possible IV’s as needed. Once at this phase of the Journey, Carol will be able to take oral anti-rejection meds vs wearing the pump she has right now, and will be able to come and go, including limited outdoor walking (with a mask) as long as she doesn’t spend too much time in the heat or sun – a few tastes of freedom J

Yesterday & today we’ve been busy making beaded jewelry (Carol has WAY more patience for this than I do, and much better at engineering solutions with limited hardware!).

Tomorrow afternoon we’re very much looking forward to seeing our Dad & Joyce and then it’ll be time for “changing of the guards” from me back to Jaime (who hopefully has had some time to catch up over the past week between Sherry’s visit & mine, while thoughtfully ensuring there are some organic food choices in the fridge for us).

-Susan (sister)

P.S. You may have noticed the photo of Carol’s new room decoration – her personalized training gloves that I brought as a symbol of her strength, endurance & resilience. Who knows, maybe after all this she’ll take up kickboxing J

July 14, 2010 Girls on vacation

So it's my turn now!

I've been here since Monday afternoon.

Monday morning Carol got a red blood transfusion, but her white count was going down and her platelets were still low.
Tuesday morning she got a large bag of platelets and her third of what will be four doses of Methotrexate for immunosupression.During which time she sucked on her special melon ice made for her by Cathy.It did the trick but made Carol so cold that she needed an extra sweatshirt and a warmed blanket.A little while later we had lunch and the day got better from there.
Today Carol woke up with the worst headache immaginable, but after some pain medicine she felt better. Within an hour or so she was her self again.
After thinking it was going to be a horrible day it was so good to see that smiling face.
Her red blood count is at 10.9 which is still in range.Platelets are up to 67 from the lol be out of here west which was 11. Today Dr.Thomblin came in and told us that she thinks Carol may be out of here the later part of next week. She'll still have to stay in the area to be monitored for two months. We won't know where she will be staying until the time comes, but we'll keep you posted.

There are people who come in to teach yoga and do physical therapy.And Carol takes every advantage offered her to be active and positive.I thought I was coming here to cheer Carol up, but the energy and attitude she has is so uplifting I just don't want to leave.

We have laughed,played,talked,and walked
(amazingly fast,where does she get all that energy?)We have spent the past few days doing some art projects and making jewelry. We've also had time to catch up.I am grateful to have the opportunity to spend this time with Carol, and I intend to be back in a few weeks.

This may seem like a weird place to spend my vacation, but my roommate is the best and the sunsets are spectacular.

See you soon, Sherry

Arts n' Tracks

Hello all,

Daniel here, visiting for just a day right now. Hopefully longer next time.
Yesterday my mom started on a small dose of Methotrexate as an anti-rejection medication which can cause mouth sores and some other side effects. Half an hour before this began to 15 minutes after, she had to suck on ice (specially made by Cathy with cantaloupe and mint leaves) to help prevent the mouth sores and other maladies in the GI tract. Fortunately she did not notice any side effects so far apart from her interrupted sleep. Three more doses of the methotrexate will be administered within the next nine days. Meanwhile, her blood counts are expected to decline. So far, however, no transfusions have been needed. (Blood counts as of 5am this morning were White: 2.39, Hemoglobin 8.9, Platelets: 37)

The other anti-rejection medication that is being administered (tacrolimus, delivered by a personal pump that is attached 24/7 as long as my mom is staying at the hospital) causes magnesium levels in the body to be depleted. They are being replaced by IV 2 to 3 times a day, as needed.

Although chemotherapy should have wiped out my mom's counts, her donor's cells most likely brought some healthy blood which is keeping these counts higher.

After breakfast today, we started a game of Upwords. Part way through that, we were visited by the physical therapist (she comes for about an hour every day) so I had a break. Afterward, we were about to go for a walk around the wing when the Arts in Medicine artist-in-residence, also named Carol, stopped by to see if my mom wanted to do some artwork. We decided to let her teach us how to make Origami healing cranes. We made 2 pairs so we could each keep one with us :) They are supposed to produce relaxation and healing. We actually made one pair with Carol and then went for a half hour walk. We had lunch after that, then finished Upwords and then made the second pair of cranes on our own =] (well... we did have some instructions that Carol left for us). Next we finished our walk. We got back just in time for dinner.My dad should be back soon to stay until my aunt Sherry arrives on Monday the 12th, to visit for 4 days which I know will be a lot of fun for Sherry and my mom! =]

See you next time!
-Daniel

P.S. New toy for Mom! Thanks Dad!

July 7th. Transplant Done!!!!

It’s a new beginning. Today Carol received the much awaited Stem Cell Transplant.
Originally it was planned for yesterday, but the donor had to be harvested twice to get sufficient Stem Cells for the transplant.
The preparation started mid morning with the actual transplant starting at 12:35 PM.
A specialized nurse was in charge of the preparation and transplant and stayed in the room for the approximately 4.5 hours it took to be completed. The actual transplant took a little over two hours.
During the transplant they hooked Carol up to all kind of monitoring devices (heart, blood pressure, oxygen) to make sure no adverse reaction went undetected.
It’s too early to tell, but the nurse mentioned that in most of these transplants some patients experience some kind of adverse reaction immediately, which requires additional meds to be given.
Fortunately Carol did not have any immediate adverse reactions. She remained calm and alert all the time, and even had the lunch I prepared for her. Hopefully her new Stem Cells will feel right at home in Carol’s body.
All the monitoring equipment is still connected for an additional 4 hours and she is also hooked up via IV receiving only saline solution.
For the next 10 to 15 days she will be closely monitored and if needed, be given additional meds to prevent GVHD.
I will keep you posted.
Thank you.
Jaime

July 4th. Brief Update

Carol already received the 4 doses of the 2 chemotherapy drugs prescribed for this protocol. The 4 days went by without major side effects to speak of. Other non chemo drugs were added yesterday to help prepare her body to fight GVHD (Graft Versus Host Decease). One of these drugs is administered by a small portable pump that will have to be worn 24/7 for a period of time. Others are in the form of pills.
Doctors told us to expect some kind of a reaction to the chemo a few days into the treatment and they were right. Last night Carol started feeling the effects of the combination of the drugs. (Discomfort all around, lack of hunger, nausea +)
The next few days are going to be a bit difficult because the chemo is supposed to reduce her blood counts in preparation for and after the transplant, which is schedule for Tuesday July 6^th.
Today Carol asked to postpone a visit from her father and stepmother Joe and Joyce, for another time when she hopefully feels better.
The days feel much longer when she feels pretty tired and hopeless so we hope to get through this stage soon.
Thank you.
Jaime

July 1st. update

Sorry for just a brief update this time.
Carol started her chemotherapy treatment last night.
With the medications given prior to the chemo, her night was very uneventful.
She fell asleep so fast that her chemo was given while sleeping.
All through the night nurses came into the room every hour or two and checked her vitals or drew blood to monitor in case of a reaction. No reaction the first night.

Today she was visited by numerous doctors, physical therapist. pharmacist, etc.
As expected, after breakfast and with her sneakers on, she went for a 45 minute walk around the hallways of this floor, which is the only place she is allowed to go and she could have kept going but doctors wanted to see her.

Our son Daniel visited us today. Brought us some things we had forgotten to pack and some special frozen cantaloupe granita with mint that our friend Cathy sent to help Carol in the event of mouth sores.
While here Daniel also took a 15 minute walk with Carol. She needed to make up the time earlier interrupted.
We also celebrated Daniel's birthday early because we will not be with him this Sunday.
We told him to stay in Sarasota and have some fun with his friends.

In about one hour Carol will be infused with the second dose of chemo.
I hope it goes as smooth as last night.
I will keep you posted.
Thank you.
Jaime