Rose Released

Rose has been released and is home.  Blog goes back into suspense mode.  You can reach her at 561.310.6309 or roseclements50@gmail.com.

Thanks to you all for your love and support!

Monday evening

Rose is out of surgery and doing fine.  I spoke with the doctor for several minutes when he was finished.  He took a couple of biopsies and removed some packing and other "stuff", but said that sinuses look healthy and     infection-free.  The docs will be meeting tomorrow morning early and she may be able to come home in the afternoon if everything works out.

Monday morning

Rose scheduled for a 4:30 surgery - probably pretty short, it's basically exploratory in nature, they want to make sure that all signs of the infection are gone and that she is healing properly.  Still no definitive word on when she'll get out.  There are 4 doctors and this procedure standing in the way of further info.  My vote is that two and a half weeks in the hospital is enough.  Did I mention I don't get a vote?  I'll update everyone this evening when more info is available.

Saturday Evening

Rose is still undergoing IV treatments and her sinuses are getting all the attention normally given to a moon landing.  She is having another surgery Monday, at which point we'll know more about when she'll be getting out of the hospital. I can assure you, she's telling anyone who will listen that she is ready.  Best to all and thanks!

Update

Sorry for the delay in posting - very long week.  Rose is still in hospital.  The infection seems to be coming under control, but they want to run a full course of IV treatment through the weekend, then reassess.  She may have a third procedure on her sinuses tomorrow, depending on how things look when she is scoped again, probably later today.  Really thankful my sister flew into to town to help out - had some serious burn out setting in.  Hopefully, we'll get back on the right path next week.  Summing up: she's out of immediate trouble, still being treated but I think we are making progress.

Sunday Evening

Just back from the hospital...Rose is doing fine in general.  Mornings and late evenings are a little rough, but she's fine during the day, continuing to be treated and making steady progress. Hospital frustration is beginning to set in.  Time to be out.

Friday Morning

Rose got "scoped" today and biopsies all looked good.  She's feeling much better, her sinuses are clearing of the infection she had.  Looks like she may not need the full 2 weeks in hospital, but she's definitely in for several more days as they continue IV treatment....Thanks for all the kind words of support - much appreciated!

A word about Rose's doctors

Rose is absolutely blessed to be surrounded by tremendous physicians, both here and at MD Anderson in Houston.  Our family doc, Gabriella Goldstein, has been sensational, hanging with us in pre-op before her procedures, seeing to Rose's comfort and deconstructing all the craziness around us.  Her oncologist in West Palm, Neal Rothschild, is superb...The ENT who operated on her twice this week, Dr Lehman, also diagnosed her leukemia 4 years ago in a routine blood test.  Last week, he quickly diagnosed her current issue and was operating within six hours of finding the problem.  All of these doctors know one another well, and work tremendously together.  My sense is they each genuinely care about Rose and have a great relationship with her.  She's in very good hands.

Thursday morning

I like to title the post based on the day.  Otherwise, I'd have no idea what day it is.  It's hospital time.  The other day, Rose was eating a meal and she thought it was her dinner.  It was 1pm, hospital time. It's like being in the lingering 11pm sunlight in the Nordic country summers. Weird.

Anyway, Rose is hanging in there. The magic of percocet, industrial strength anti-fungal meds and lots of good doctoring.  They keep saying they are keeping her another two weeks, but it's hard to imagine they will.  But my hunches have proven spectacularly wrong throughout this whole adventure.

She seems to be feeling pretty good, her sister Gini has come for a couple of days, my sister Lou Ann is on the way to spell me next week, so we are making some progress.

So the deal is that Rose contracted a big sinus infection from the spores of a common mold to all of us otherwise  healthy folks are expose to everyday.  It overwhelmed her immune system and could very well have put her in very serious shape had it not be caught as soon as it was.  She has had two procedures to basically clear her sinuses of infection.  The decision was made today to keep her two additional weeks to treat her with IV drugs to clear the infection...it's dangerous to be too casual about this stuff, and keeping in hospital provides the focus and attention she needs to move through this. She's in good spirits and in good hands.

Wednesday morning

Just found out Rose is in for two more weeks. She's out of immediate danger and doing well this morning, but they need to treat her with heavy duty IV drugs. In with her doctor now

Rose had a second surgical procedure on her sinuses today to look for more signs of infection, to take additional specimens for pathology and to apply some meds.  She has been infected by a disease absolutely common which is completely handled by a normal, healthy immune system.  For folks with no real immune system, it is potentially deadly, hence the sense of urgency with which her doctors have gone after it.

The surgeon was pleased with what he found - he believes they got most if not all the obvious infection in 4 sinus cavities and they hope to mop up the rest with meds.  She's relatively comfortable and resting this evening  - and her appetite has returned.  Beverly: thanks for dropping by - she was sorry she missed you.

charlie

Monday

Much better day for Rose as she got some sleep and had a little appetite.  They have changed the anti-fungal meds she's been taking to an IV med targeted at the particular infection she is fighting.  She got up for a couple of walks today and was generally in better shape.  She will have another procedure tomorrow in the OR to scope her sinuses, address any issues and take some more specimens from the effected areas.

Ironically, she finally got the flow cytometry report from MD Anderson after almost 3 weeks.  She is disease free.  I know I should be be really happy about that, but I'm not sure I trust any to this stuff anymore.

charlie

Rose at Good Samaritan

Rough day Sunday.  She had difficulty sleeping, they removed the packing in her sinuses and that didn't go particularly well - had to repack her....just a tough, tough day.  She was better by the evening - she had a little appetite and was in a little less pain.  Hoping for a better day today.

Just back from the hospital.  Rose looks really good considering - I was happily surprised to see she was alert, not terribly bruised or swollen and in pretty good spirits.  First reports are that the surgery went well, some really vulnerable sinus areas were not infected and she has begun intensive IV meds to fight the infection. Ah, the life of a person with no immune system.  Thanks for the calls - she's doing pretty well.

Rose has surgery

I was hoping to never have to restart this blog, but here we go.  Today is Saturday.  On Tuesday, Rose began complaining of a sinus problem.  The pressure and pain continued to get worse and we got her an appointment with her ENT doc.  He examined her, took a specimen for pathology and said "I'm giving you this specimen to take with you when you check in to the hospital.  We'll be doing surgery this evening."  He went on to describe the very dangerous nature of her infection.

And with that, off we went, packed a few things, checked into the hospital and in to surgery - all in the space of six hours.  Turns out that she was badly infected with a fungus that you or I experience everyday, but our immune systems routinely handle.  Rose has no immune system - so of course, it rampages through her sinuses wasting healthy tissue as it goes.  The surgery attempts to remove the damage and root out the disease.  Her doctor believes they caught it early, but she made need follow on surgery and, of course, a heavy course of anti-fungal IV drugs.

It is early Saturday - I've just gotten in from the hospital, after a brief coffee refuel with my sister and Doug.  I'll be returning to the hospital after a little sleep.  She is at Good Samaritan Hospital in West Palm Beach  Room 493 and she'll be there at least a week.  I will maintain the blog to keep everyone in the loop.  It is her great blessing to have so many friends and who love her - this gives me the opportunity to thank you all and once and keep you informed.  Many thanks for all the calls, notes and emails.  I will post as appropriate. 

Charlie

Many thanks to you all...a note from Rose

There is something about standing on the shore watching the waves roll in and out, rising and falling with the  tide, each wave leaving behind a clean washed sandy pallet.  Build a sandcastle, leave your footprints, follow the tracks of the sandpipers in the sand; all to be washed away with the next wave on the beach.

For me, this past year has been similar to the waves washing over the beach and the daily change of tides.  Each day swept away something of the past, and each day held promise of something new or different in my life. 

My friends and family have provided me the support and prayers to let go of the past and look forward to the new and different that lay ahead.  My love and deepest gratitude go out to you all.  Best wishes for a happy, healthy 2012.

Love to you all,

Rose

After a week at home

...Rose is doing great.  Feeling good, looking good, reconnected with all her doctors here in West Palm.

Figured I'd share a beautiful photo of her taken yesterday at City Place in West Palm.  Where else are you going to take an immuno-compromised person on Christmas Eve - the mall!

Rose will be closing out the blog today with a message to everyone who has been so generous with their time, their words of healing and encouragement and their prayers.  We can't thank you enough.  Watch for her post later today...

Charlie

Christmas Post

Rose is working on a Christmas Day post, at which point we will wrap up the blog.

Over 3 and a half months, 130 posts - many written during dark very times, hundreds of comments from all of you, this vehicle has served as a way to communicate one-to-many.  But more importantly, it's been a sanity balm for me and a wonderful tool for maintaining community around healing Rose.

I've said it a thousand times, but the greatest lesson of all of this for me is the critical need for community, support and love for those faced with these "life challenges".  There are no words to thank you all enough.  You are all in our hearts now, and for the rest of our lives.  Thank you all so much. 

We'll wrap up on Christmas Day but we will never forget your support.

Rose is Home

What a long, strange trip it's been...