Having a Break at Home

On Friday afternoon, we suddenly got the news that it was time for Gloria to leave the James Cancer Center. Karen and Rebecca hurriedly packed the room while Gloria prepared to get discharged. This meant getting a new, ahem, less-than-fashionable fanny pack to house her 24-hour infusion penicillin that she has to tote around. Good times. Leaving the hospital was rather surreal for Mom and she even mentioned having a bit of Stockholm Syndrome when she woke up at home on Saturday morning. However, she seems to be getting more used to it, enjoying the daily care and coddling from Team Gloria. She's already showing signs of an improved appetite and seems to be getting stronger by the minute. Having said that, there are still concerns that her white count is fairly low, making her at risk to infection. This means that we are still asking that people don't come over for the time being. We go back to the outpatient clinic on Wednesday for a bone marrow biopsy and will find out when Mom will be re-admitted to the James for consolidation therapy. We will let people know when Mom is ready for visitors.

In the meantime, we are enjoying our time together at home. We've been cooking (Karen made a fantastic pot of chicken soup), relaxing, meditating, watching some television and walking on the treadmill. Karen and Rebecca are taking over from Theresa, who has been taking care of the indoor plants, and Mom's neighbor Tina, who has been taking great care of the outside plants. It has been such a blessing to have their help, and we have been enjoying the fruits of their labor, including this wonderful visitor to the butterfly bush in the backyard.

Much love to all,

Rebecca, Karen and Sidney

Onward and Upward

The last few days have been relatively peaceful, despite the diagnosis of vancomycin-resistant enteroccocus (VRE), which has put Mom into isolation. Sounds scary but it just means we have to wear gowns and gloves when in the room, so that we don't take any bacteria to immuno-compromised patients on the floor. In reality, most nurses probably have this bug, so it probably isn't a big deal, and as long as it stays put in her gut we should be good to go. Plus, the best news is that Mom's white blood cell count is slowly creeping up and is now over 500 and her platelets are above normal! As long as there are no more fevers, this means that in a few days we can go home for a few days to allow Mom's bone marrow to recover to the point where she is ready for round two of chemotherapy. Mom is looking forward to being home for a little while.  She is starting to look better and feel better, even though she swears she looks like yoda without her hair. She also mentioned something about goblins and elves. Make up your mind Glo!

Thanks again for the continued love and support. Team Gloria is looking forward to a little Dayton time as well, especially the comfort of a real bed!

Much love,

Rebecca, Karen and Sid

Stupid Fever!

It's a peaceful Sunday here at The James. Sidney's brother and sister in-law, Nathan and Linda, just left after a very quick visit to their old stomping ground. Both are allergists in California who went to OSU medical school. Gloria enjoyed seeing them very much.

She's keeping her doctors guessing of late, with a low-grade fever that just won't go away. There is a virtual smorgasbord of antibiotics and anti fungal medicines hanging from her IV pole. Karen says it looks like a tree in New Orleans on Ash Wednesday.

Spirits are holding steady most of the time. We are keeping the faith that today's round of tests will bring us the answers we seek. Hope everyone reading is enjoying their day. Thank you for the continual good thoughts, wishes, and prayers. They help immensely.

Much love,
Karen, Rebecca, and Sidney

Good News, At Last!

Not too long after our not so good day Gloria got the results from her bone marrow biopsy and it turned out to be good news. The biopsy showed that Mom's bone marrow is free of leukemia cells.  So Gloria is officially in remission! The trick now is to keep her there and, of course, to get her white blood cell count up to where she can fight off infection on her own. This means that we will be in the hospital for a few more weeks while she builds up the cells in her bone marrow and has high enough white blood cell, hemoglobin and platelet counts to go home for a week or so. After that, Gloria will have to return to the James in order to get consolidation therapy, which is a 5-day chemotherapy treatment. Cautious optimism is the mood of the Team. Now more than ever do we remain vigilant, keeping Mom free of infection and dealing with the difficult side-effects.  Thanks again to everyone for your healing thoughts and prayers! Mom remains determined and though tired, maintains her sense of humor. One example: everytime she has to show the nurses and doctors her rash, she has been telling them that she feels like she is in New Orleans at Mardi Gras and is "showing her tits". Yesterday the alternative therapies nurse, Marjorie, brought some well-deserved Mardi-Gras beads. We are still smiling.

Lots of love and ever optimistic,

Team Gloria

When You Are Going Through Hell, Keep Going

Yesterday was the day from hell. Morning started off on the wrong foot, with a fever and hair falling out. Karen said Mom looked like a lady with 17 cats - hair all over her robe. So, she gave Mom a buzz cut. Turns out Gloria looks adorable with a shaved head! Not a big surprise. After her "hair appointment" she had a run in with her TV (bumped her head), which caused her some discomfort. Due to the fever and the rash and some colon issues, lots and lots and lots of things had to be done in order to figure out what's causing all of these symptoms. Karen and Gloria were visited by no fewer than 25 people in one day! She had a chest x-ray, a CT scan of her chest and abdomen, blood draws, a skin biopsy, and a bone-marrow biopsy. Needless to say, she was exhausted. Fortunately, today has been a much calmer day. We've exercised, listened to a meditative chanting cd (thanks Jane!) and had a visit from the alternative therapies/mental health nurse.  Let's hope the days to come are more like today and less like the hell from yesterday.  Regardless, we'll take Winston Churchill's advice and just keep going.

Oren Kelsey turns 96 today!

Friday the 13th and the birthday of Gloria's father, Oren Kelsey. Happy Birthday Grandpa! Day 10 of our journey and we are still getting along here, although things are starting to get a bit more arduous. Mom is tired and has more symptoms of side-effects from the chemo. There is much sleeping, some reading/listening, and lots of nursing staff visitations. Yesterday Mom got her first blood transfusion, which gave her enough energy to manage two walks around the halls. Dr. Stanford (her IV stand) is still accompanying us, so Gloria is still tethered, which can cause frustration.

Today Robin Miller arrived from Chicago to keep Team Gloria company. It is so nice to see her face and have her entertain us with fun stories of Emma the Dog and Tippy the Turtle.  In return, we hope to show Robin the sites of Columbus, including the Olentangy River and German Village.  Mom is so thankful for all of the support that she has received from family and friends in the form of comments on the blog, personal emails, jokes, cards, and gifts. Thank you to everyone who has sent their love and support! It hasn't gone unnoticed. Gloria is so exhausted that it is hard for her to respond and send her love. Please know that she is so appreciative and don't be offended if you don't hear back! Your thoughts are so important to her and are helping to buoy her spirits. The rest of Team Gloria also send our love and thanks to all of you for your support! The hazelnuts from Oregon were particularly delicious (So Eat Already!).

Love to all,

Rebecca, Karen, and Sidney

Last Day of Induction Therapy

Today is the last day of chemo during this first phase of induction therapy! The bag is almost empty! Yay! Mom is looking forward to being unhooked from her IV stand (for those of you who don't know, we named her Dr. Stanford; she has a personality all of her own, including a PhD in art history - yes, if you must know, it gets boring around here and we come up with various ways to keep ourselves entertained!).  Hopefully Gloria will only need to be hooked up on occasion and can be relatively more free to move about. So far, we have enjoyed our wanderings about the hallways in the hospital, but we think it will be even better once Gloria is unencumbered.

Gloria had a wonderful visit from the alternative therapies nurse, Marjorie, who discussed traditional chinese medicine practices and other alternative therapies with us. She performed reflexology and therapeutic touch with Mom. Last night, Mom fell asleep during her guided imagery with Aunt Rebecca, and it seems to help her relax. We are glad to have more tools in the toolbox we can use to help her in the healing process. 

Today was a good day although she is starting to feel a little sicker. We are keeping our fingers crossed that it won't get too bad. Fortunately, the staff here is wonderful and will help to keep her from feeling too gross. We did have one surprise which wasn't so fantastic - the shower in her room is leaking into the room below,  so we had to change rooms. Not so bad but we are definitely a little more cramped! At least they are keeping us on our toes!

Having Aunt Rebecca here was a gift, both to Gloria and to us. She left today and we miss her already. Here is a cute picture of the sisters.

You can see how much they like to be together.  Thanks Auntie! We love you!

Thanks to everyone for your thoughts and prayers, cards and gifts. Mom is overwhelmed by all of the love and is so thankful.

Much love,

Rebecca, Karen, and Sidney

Lazy Sunday

Greetings,

It's a rather lazy Sunday here at The James. Gloria has been enjoying her interactions with her nurses and PCA's (Patient Care Assistants), especially those who are recent nursing grads waiting to take the licensing exam. Funny story: one PCA, who grew up in Dayton, was taking her blood pressure, talking about his plans to enter the nursing program at Columbus State. He told her that his mom and two sisters were RNs, and that one had become a dentist...to which Gloria replied, "Betsy?". Yes, she had taught his sister in the early 1990s.

She has also met a couple of nurses from Louisiana, which has made her happy and a little homesick. Karen has remarked that she feels like she's an extra in an episode of "Grey's Anatomy," as one of the requirements for working at The James seems to be that you must not just be lovely on the inside, but good looking as well.

Gloria's doctors seem pleased with how things are going. Things are exactly where they're supposed to be on day six of chemo.

There is a very interesting article on the front page of The New York Times today about gene sequencing treatment for leukemia. While the leukemia mentioned is somewhat different, the gene mutation mentioned is the same. You can read it here:
http://www.nytimes.com/2012/07/08/health/in-gene-sequencing-treatment-for-leukemia-glimpses-of-the-future.html?_r=1&ref=global-home

Love,
Karen, Rebecca, and Sidney

Hump-Day

Greetings everyone! It is day 4 - halfway through the first round of chemotherapy.  So far Gloria is doing very well with the treatment. She is up and about, cute as ever (yes, her outfit is matching), and her sense of humor is intact. Of course, Karen is keeping us all in stitches! Aunt Rebecca, Gloria's little sister, arrived yesterday and is staying for a few days. It has been good for them to be together - meditating and doing guided imagery. Mom decided that the battle metaphor is not for her. Instead, she has chosen to tell her blastocysts that they are no longer needed on the team, and that, while they may have been trying hard to do a good job, they will have to be let go and replaced by healthier cells. A calmer and quieter metaphor to help her with her healing process.

Niece Erin also arrived from Chicago for a visit to help Team Goldman. Sidney is enjoying all of the female company. Thanks to everyone for the positive vibes! Mom is really enjoying reading the posts, so keep 'em coming!

Love,

Rebecca, Karen, and Sidney

Opening Ceremony

Updates from the battleground....

On Monday, Gloria and Sidney checked into the James Cancer Center http://cancer.osu.edu/Pages/index.aspx in Columbus. Day one was relatively straightforward...meeting the Blue Team, answering a plethora of questions and getting settled into her private room (she started out in a double but it didn't take long to help the staff realize their mistake). Monday afternoon Mom met with the doctors to talk about her treatment and found out that she is eligible for a clinical trial. The clinical trial is for leukemia that shows an FLT-3 mutation on the chromosome. The treatment is a drug called Sorafenib, which is given in addition to the routine induction chemotherapy. Gloria has decided to take part in the trial. Sorafenib is a drug that has been proven effective in the fight against other cancers, and has shown promise in helping leukemia patients get into remission. It goes without saying, we are all routing for this to happen!

On Tuesday morning Gloria and Sid woke to more activity. Morning consisted of getting her prepped for her day, and in the early afternoon she was whisked away for the team to put in her central line and do an echocardiogram. Everyone here is so very impressed with Gloria's good health and spirits! By late evening, the team started Mom on her chemotherapy treatments. She will be given this treatment for the next 7 days, and then will be allowed to recover as we monitor her progress with remission. Given the holiday (Happy 4th of July everyone!), Downtown Columbus was ablaze with the red, white and boom fireworks, and Gloria's room had a terrific view.  We decided that this was the opening ceremony for the battle, cheering the chemo on to victory against the blastocytes! Go Go Go!!! (Thanks Alison, we are adopting your cheer!)

We are all encouraged by the team of doctors and nurses. Everyone is so nice and compassionate, as well as competent and reliable. We'll keep you posted as things progress. Thanks to everyone for your wonderful comments and support! If you are having trouble posting comments to the blog, feel free to just send an email to effleukemia@gmail.com. Also, several people have asked where they can send cards. Please send them to Mom's home address. One of us will deliver them to her directly.

Love,

Rebecca, Karen and Sidney