Today was a lot like yesterday. I got a voicemail from Ganguly this morning, which I knew meant he had news. And he doesn't call when there's good news. But he called to catch me up on what was going on. Here's what he said - we're essentially back to where we were a week ago. Then he laid out some additional treatment options and his plan. It was refreshing to have him tell me 'I'm going to do everything I possibly can to help her get through this.' That's the kind of doctor you want steering the ship.
He's clearly very worried about her myelodysplasia and its restriction of WBC regrowth. He said this Wednesday or Thursday would be more typical of a normal person to see increased WBC counts. And more than likely we'd be looking at 1.5 weeks for hers to regrow. With the pneumonia where it is, there's really not that long to wait. So he went ahead with two things today - steroids (assist in clearing the lungs) and Neupogen (the GCSF treatment I alluded to about a week or so ago).
The Neupogen's a bit of a risk because if the chemotherapy did not kill all the leukemic cells we could be helping them regrow. While that's a risk, it's ok for a couple of reasons. One is the leukemia is not what is negative right now. Second is another round of chemotherapy is possible to kill off the leukemia again. Our current hurdle is the leukemia and she needs her WBC's to battle it.
Now the good news for today is she was able to maintain a good temperature without spiking a fever. That is definitely good b/c Ganguly has told me before the fever is indicative of pneumonia still living and battling her.
Additionally her breathing didn't worsen today. She was on the CPAP and BiPAP the majority of the day. This morning Ganguly said there's still a possibility of intubating, but he said they'd probably do it when / if they do another bronchoscopy. If she can maintain good breathing on the CPAP and BiPAP though (while clearing some more of the pneumonia), we'll avoid the intubation and ventilator. We would certainly like to avoid getting to that state.
We also got a sign up there for her that says 'Beat the Pneumonia Brothers!' Hopefully that will continue to remind her of what she should focus on as it is sometimes difficult (and she requires anxiety medication to treat it) to get deep breaths.
She watched the Cubs beat the Pirates this afternoon and some HGTV tonight. It's funny b/c she watches the Cubbies b/c it's baseball and pretty mindless to leave on for 3+ hours and tune in or out depending on how tired she is. Often times that puts her to sleep and relaxes her - definitely positive.
Keep up the kind words and prayers you're doing b/c we need all the help we can get. I would request that if you are reading this blog today and in the coming days, PLEASE POST. She loves hearing them and asks us to read them to her for a pick-me-up. Needless to say you can never have too many attitude boosters.
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22 comments:
Heard from the Philmont Crews today - they made it back to base camp. Mark said today was the worst of all the days - it was like walking 10+ miles in Death Valley. They all had a tremendous time and will catch the train back tomorrow.
The Pneumonia Brothers sounds too much like a potential SNL skit.
Ned's joke of the day:
So, a blonde, a redhead, a dog, a priest and a guy screwing in a light bulb walk into a bar.
The bartender asks "What, is this some kind of joke?"
good night. fight the fight. FIGJAM.
Cathi -
I'm a little late to this party, but since you aren't on your own email now, I had to learn how to do this!
Like so many of your fans, I have a routine to check on you. I always check before going to bed, and recheck if the update was not up yet. Most nights I catch the update within an hour or so of when it's posted. Prayers are said for you before I go down for the night.
Come morning, when I get on the computer before going to work, I always check the blog again for comments or updates.
Conor, this blog was an absolute stroke of genius. What better way to get accurate information to so many people? I'm sure everyone will agree that your efforts are greatly appreciated.
Cathi, your strength in concentrating on the task at hand is really inspiring, so keep up the good work. We all know that, as persistent and hard working as you are, the "bugs" that are bugging you don't stand a chance, although they will put up a good fight. Captain Cathi RULES!
As you continue your battle in your climate controlled zone, think of me in my office which still, after all these months, has no door and the heat/air conditioning vent that needs a booster is boosterless!
Just remember that there is a host of Scouts and Scouters out here who are with you in spirit 24/7 and you are in our hearts and prayers at all times.
Don't forget that you still owe me a lunch date and I'll even do the happy dance when that day comes!
God Bless,
Judy Yeager
Cathi my friend. Keep up the good work. We all know Captain Cathi can beat those Pneumonia Brothers. They don't have nearly as much love and sunshine coming their way. With this weather I think I'll send a nice large waiving palm leaf. Let those cool breezes bring deep refreshing breaths. Sleep peacefully. zlllvk Huggs and More Huggs. Linda
Cathi -
As you know, I'm usually not a quiet one, but I've been quietly watching this excellent blog EVERY night, along with Carol, Scott and Jimmy. I've been watching your family, friends and medical staff rally around you, and I know you are in the best of hands.
We know you will beat this, and we'll be sitting in Jose Pepper's reminiscing about it years from now. But our prayers are with you anyway!! Keep up the great work!
Bill Henderson
Good morning Cathi
I hope you're breathing a little easier this morning. I love the idea of a huge palm leaf wafting clean, refreshing air into your body and disloding those pesky Pneumonia Brothers lurking in the shadows of your lungs. Here they come, tumbling out and away from you!
You keep up the fight darling, we're all rooting for you every little step of the way.
I wore my Pikes Peak T-shirt this morning on our walk round Chailey Common. Brought back happy memories of our trip to Colorado last summer. So glad we went up that mountain on the cog railway!!
You do know Italy has mountains, don't you??!! This time next year...
love
#2 Girl on Tour
G'morning Cathi,
Looks like you're getting comments posted 24 hours a day now! Greetings from rainy cold Vermont. Just picked the first of my tomatoes so it must be August.
Meanwhile, you're doing exactly what you should be doing -- getting better, one day at a time. with help from an international team of medical, family and friends.
Warning: Bad Joke Alert:
A fellow walked into a doctor's office and the receptionist asked him what he had.
He said, "Shingles."
So she took down his name, address, medical insurance number and told him to have a seat.
A few minutes later a nurse's aid came out and asked him what he had.
He said, "Shingles."
So she took down his height, weight, a complete medical history and told him to wait in the examining room.
Ten minutes later a nurse came in and asked him what he had.
He said, "Shingles."
So she gave him a blood test, a blood pressure test, an electrocardiogram, told him to take off all his clothes and wait for the doctor.
Fifteen minutes later the doctor came in and asked him what he had.
He said, "Shingles."
The doctor said, "Where?"
He said, "Outside in the truck. Where do you want them?"
Love, Robbie
Captain Cathi, Co-pilot Connor, and the rest of your "crew", just letting you know that clear skies are ahead. Once we frighten the Pneumonia brothers off the tarmack you are cleared for a bone-marrowing experience!
Sorry, I could not resist. Cathi you can! Fight those buggers and squash them. YOU ARE winning the race! YOU ARE saving the day. YOU ARE THE AMAZING CAPTAIN CATHI!
More Toledo love!
Cheryl
Hello Cathi,
Everytime we walk past the Kansas City goose in our house we think of you and hope you're winning your battle.
Talking of birds, we visited a nearby Bird Sanctuary recently & sat in a Lapwing Hide for ages. Didn't see one lapwing but dozens of coots!
Our good wishes are "winging" their way across the miles.
"Fight the Good Fight with all Thy Might" .
Thank you Conor for your reports which we read every day.
Love from Margaret & Brian (Janet's Mum & Dad).
Hi Cathi,
Just want you to know that you are in my thoughts and prayers.
Keep up the fighT and know that there are a bunch of us Scouters who are cheering you on!
Janet Thornburg
Good Morning #1 GOT,
Working from home today so get to sit around in my bathrobe and be comfortable. John is off to the hardware store already, it is the only place he actually likes to go shopping.
John's mother was in fine shape yesterday but was upset that we didn't bring the cat with us, first thing she said to us was Where's Buddy". We usually take him with every Sunday when we go down but not yesterday. She took care of him while we were in Kansas, she is so funny about the cat she worries that he might get bored while he is with her. So she has a routine set up of times to play with him when she has him. I think she would have her own cat but worries it is too much for her to take care of full time.
I can see I have started a trend with the silly jokes, you all are getting funnier ones than mine. Guess I will have to try harder.
A WOMAN, CALLING A LOCAL HOSPITAL,
SAID, "HELLO, I'D LIKE TO TALK TO THE PERSON WHO GIVES THE INFORMATION REGARDING YOUR PATIENTS.
I'D LIKE TO FIND OUT IF THE PATIENT IS GETTING BETTER, DOING AS EXPECTED OR IS GETTING WORSE."
THE VOICE ON THE OTHER END OF THE LINE SAID,
"WHAT IS THE PATIENTS NAME AND ROOM NUMBER?"
SHE SAID, "SARA FINKLE, IN ROOM 302."
"I WILL CONNECT YOU WITH THE NURSING STATION."
"3-A NURSING STATION. HOW CAN I HELP YOU?"
"I WOULD LIKE TO KNOW THE CONDITION OF SARA FINKLE IN ROOM 302."
"JUST A MOMENT. LET ME LOOK AT HER RECORDS.
OH YES, MRS. FINKLE IS DOING VERY WELL. IN FACT SHE'S HAD TWO FULL MEALS,
HER BLOOD PRESSURE IS FINE
AND HER BLOOD WORK JUST CAME BACK AS NORMAL. SHE'S GOING TO BE TAKEN OFF THE HEART MONITOR IN A COUPLE OF HOURS AND IF SHE CONTINUES THIS IMPROVEMENT. DR. COHEN IS GOING TO SEND HER HOME TUESDAY AT TWELVE O' CLOCK."
THE WOMAN SAID," THANK GOD!
THAT'S WONDERFUL"
OH! THAT'S FANTASTIC.
THAT'S WONDERFUL NEWS! "
THE NURSE SAID," FROM YOUR ENTHUSIASM, I TAKE IT YOU MUST BE A CLOSE FAMILY MEMBER OR A VERY CLOSE FRIEND!"
"NOT EXACTLY, I AM SARAH FINKEL IN ROOM 302!
AND NOBODY HERE TELLS ME ANYTHING!"
Well I am sure you get better information than this but thought a little hospital humor might make those pnuemonia brothers groan so much that they will hit the road.
Take care and try to get some rest baseball on TV always puts me to sleep too.
Love Ya
#3 GOT
He he he, Joan. That's your best one yet!!!
Cathi - I'm sure you don't have to resort to such drastic measures to get information!
I'm going to have to ask my brother for some CLEAN jokes, he's always sending on humourous stuff but its normally visual, smutty or something to do with the Germans poking fun at the Poles!
Keep smiling, love
#2 GOT
Hey Robbie & Ned - meant to say yours was great too! Janet :)
Good!!!!! morning, Cathi. :)
I hope today is a very good day for you. We all are visualizing the knocking out of the Pneum Bros and by now, they should be feeling the punch.
When Joan shared about the cat & her mother, it made me wonder whether or not anyone has yet attempted to disguise Hayward & Daisy as therapy dogs & brought them up to the window of your room... hmmm... oh, the possibilities!! LOL.
Okay - I had to dig deep into the few brain cells I have left from Ben's childhood, but here is what I was able to remember of knock-knock jokes. Trust me, this is the best I can do.
{intro: Caps are person #1, no caps are person #2}
KNOCK-KNOCK
Who's...
MOO
KNOCK-KNOCK
Who's...
MOO
KNOCK-KNOCK
Who's...
MOO
KNOCK-KNOCK
Who's....
INTERRUPTING COW
[yep, you can groan]
I'll write more later today. And I'll ask for help with more knock knock jokes. Really I will.
Love you & miss you!!!!
-gail (& Ben from afar)
Hi Cathi,
The Layne's are back from Colo. It was sooo hot, but the "kick pneumonia's butt and grow good WBC's Cathi" mantra was chanted from the top of Pike's Peak, the Garden of the Gods and from Estes. Now I am off this week to Portland and will send all my good healing vibes from the pacific northwest. It sounds like everyone is doing a phenominal job, and you are an inspiration to everyone. The KC Snells are the best team I have ever seen. I hope you are all getting as much rest as you can and taking lots of vitamins...
And, I hope Connor is right and this is the worst. Here's to smooth sailing from here on out!! Lots of love and prayers from all the Hoheisels.
Debby
Cathi! Hope you are doing well today! Great job on doing your breathing exercises! Many prayers and hugs your way from Denver!
Andrea
Hey Captain Aunt Cathi!
We are off to the beach today. We will see the Pneumonia Brothers in every wave we crash into! We usually crash alot on our boogie boards, though we are pretty good boarders! Crashing will be more fun today seeing the Pneumonia Brothers drown in the pacific ocean. KPBB!!
We love you, Winston and David
Good morning, Cathi! Found some great socks to send along today. Mailed a bunch on Saturday so hope it trickles in soon! Found some postcards for you to get your eyeballs on...hope you enjoy. Love that Ganguly was a chocolate seeker! We will send along more soon. Good week for Cathi mail...
Anyone interested in sending a note
KUMED 3901 Rainbow Blvd, Rm 6310
Kansas City, KS 66160 AIRXO, Rhonda
Howdy Cathi,
I am settling in back in OKC. It's really good to be home and close to my Momma. She seems happy to have me home and is enjoying getting to know her new Son-Inlaw.
I told her this joke last night and she loved it:
A married lady was getting ready to go out with her girlfriends for a "girl's night out". Her husband asked her what time she would be in and she replied, "I won't be to late. No latter than mid-night, I know how you worry" He thanked her, kissed her and sent her on her way.
Needless to say, she began to have much more "fun" than she had planned. She didn't make it home until right before 2 AM.
Upon entering her home the coo-koo clock began to sound two times signaling her late arrival. Clever girl that she was she sounded off ten more coo-koos, thinking that her husband would be none the wiser if he happened to awaken, and then crept into bed.
In the morning her husband asked her how her night was and what time she had gotten home. She replied that they had a wonderful evening out and she had made it home by midnight as she had promised, and then asked him how his evening had been. He replied "It was quite, I watched ESPN for awhile and turned in early, but I think we need to take the coo-koo clock in for repairs." "Why?" she asked. He said "Because at midnight last night is sounded twice, hicupped, sounded five times more, tripped over the coffe table, sounded five more times and belched."
Fight the good fight! The Jones girls are cheering you on!
Much Love,
Nina
Hi Cathi, I just remembered one of Ben's jokes that cracked us all up at Winfield. I don't know if you heard it, it's just as bad the second or third time. Did you hear about the circus fire? It was intense (in tents). Yuck and love, Sara
Well my dear, time to get better..... lunch is not the same without my number one gal!
Have been following closely and praying a lot. Wish I could see you and give you a BIG kiss; or at least some nachos from Souh-Of-The-Border.... your choice.
So you like jokes? Knowing you are still working on the house make-over and are probably watching the HGTV for tips, I found a great drywaller for you. He is not cheep but keep him in beer and sandwiches and I can almost bet he won't run off and join the circus. Read on....
A duck walks into a pub and orders a pint of beer and a ham sandwich.
The barman looks at him and says, 'Hang on! You're a duck.'
'I see your eyes are working,' replies the duck.
'And you can talk!' exclaims the barman.
'I see your ears are working, too,' says the duck. 'Now if you don't
mind,can I have my beer and my sandwich please?'
'Certainly, sorry about that,' says the barman as he pulls the duck's pint.
'It's just we don't get many ducks in this pub. What are you doing round
this way?'
'I'm working on the building site across the road,' explains the duck. 'I'm
a dry-waller.'
The flabbergasted barman cannot believe the duck and wants to learn more,
but takes the hint when the duck pulls out a newspaper from his bag and
proceeds to read it.
So, the duck reads his paper, drinks his beer, eats his sandwich, bids the
barman good day and leaves.
The same thing happens for two weeks.
Then one day the circus comes to town.
The ringmaster comes into the pub for a pint and the barman says to him
'You're with the circus, aren't you? Well, I know this duck that could be
just brilliant in your circus. He talks, drinks beer, eats sandwiches,
reads the newspaper and everything!'
'Sounds marvellous,' says the ringmaster, handing over his business card.
'Get him to give me a call.'
So the next day when the duck comes into the pub the barman says, 'Hey
Mr. Duck, I reckon I can line you up with a top job, paying really good
money.'
'I'm always looking for the next job,' says the duck. 'Where is it?'
'At the circus,' says the barman.
'The circus?' repeats the duck.
'That's right,' replies the barman.
'The circus?' the duck asks again. 'That place with the big tent?'
'Yeah,' the barman replies.
'With all the animals who live in cages and performers who live in
caravans?' says the duck.
'Of course,' the barman replies.
'And the tent has canvas sides and a big canvas roof with a hole in the
middle?' persists the duck.
'That's right!' says the barman.
The duck shakes his head in amazement, and says ....
'What the heck would they want with a drywaller??!'
Anyway, Love and Kisses
Crazy Dave
Hello!
I hear you got to sit up today in a chair...very exciting!! The fireplace is grouted and cleaned off. Just needs to dry some more and then it's tending to the little details to clean it up. It was a lot of fun to do...Craig and I had a blast! There is still tile left to do your backsplash to match when you're feeling better :)
Will send pictures soon.
Love you-
Margaret
Cathi,
I hear how hard you are fighting and know you are beating this; the pneumonia is just a bump in the road. John, Seth and Christopher are on the train ride home from Philmont.They all survived. I have been splitting the prayers between you all. Now that they are off the mountain I can send all of them your way. Take a deep breathe and I will see you once you can have visitors. Love, Sarah Jurcyk
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