Thurs, 7.31 - Little by Little

Today's entry was almost titled 'Live and Learn' as that's how today started. I'll share more about that later, but I knew the title was right when Mom said those words to me describing her current status! I started smiling and pointed at my laptop (these are often written over multiple sittings - get up to hold the tray to spit, adjust pillows, get Kleenex, or the frequent nurse and doctor visits).

So the reason for Little by Little is there was progress today, but not as quantifiable as the past couple of days. It's one of those days that remind you it's a marathon and not a sprint. Ganguly said the lungs were clearer. They're just not an additional 10% and when pressed the best estimate I could get was 2 - 5% better. He said they're definitely a lot better than Tuesday when you reference that X-Ray.

Additionally the WBCs were at 0.2 today. We continued to reiterate to Mom that the other aspects are getting better, and that's all we can hope for. Now the good thing is about her hitting 0.1 a few days ago then still maintaining a low level is it should help out with the next piece.

Ganguly almost and I mean ALMOST called for the bone marrow biopsy today. He tentatively scheduled a time even. But by the time he left this morning he was pretty convinced he wouldn't. The reason is we're in a very in-between state. Chemo took her WBCs all the way down and they wanted the biopsy last Saturday or so in order to confirm everything was dead (it likely was considering we went all the way to 0.1). But now we're in a state of regrowth - just not full maturity. He said that should come sometime in the next 5 - 7 days. The risk is he could misinterpret cells today as non-leukemic due to their immaturity. And knowing that we will probably use some GCSF treatments based on this biopsy, it's good to be conservative.

Now additional good news came in the form of some clarity regarding relocation back to 41 (Room # TBD but it won't be 02 and I'll update her 'address' when I have it). Ganguly said Monday b/c he'd prefer a full staff versus the weekend shift on transition. But I did overhear the ICU docs talking to him and he said he's leaving it up to them. Then this evening her nurse from last night told me she thinks she heard tomorrow. Either way, we're all happy and proud that it looks like she'll get to trade-in her penthouse for the middle class digs on 41. It'll be back to biking and exercising there!

The reason for 'Live and Learn' is she tried to push herself as hard as she did yesterday right out of the shoot today. It started when I was exiled during the morning shift change, and she asked for her laptop. Well she realized that once she starts reading emails she churns on them in her head long after she reads them. And that lead to some anxious breathing. So she requested I let everyone know emails are great to receive and are getting read (some much later than they were sent) but don't expect answers. The blog is the easiest place to get in touch with her as she asks us daily to read the posts to her. Even then, there is some paraphrasing. :)

Additionally, there are no outside guests for the time being. We appreciate all the support, but just cannot risk it for her right now. The health is one thing. But she really does love people, and she tries so hard to be 'on' when people are here. It really drains her so we'll let everyone know when it's good to come by again.

Once she settle down for a nap (more on this later), she had her first physical therapist visit. He said she shouldn't have any issues transitioning back out of here as he was pretty happy with her leg strength and overall range of motion already. That was good to hear. He commented several times that she's way ahead of a lot of the people he works with. It was interesting for Mark and I to watch though. He left her bed in a form that required her to pretty much sit as though she were on a dinner or office chair - the range of motion for these hospital beds is crazy for those that haven't watched closely enough!

Well she started to fall asleep. And knowing how uncomfortable it can be on your neck when you wake up from a nap in that position, we asked the nurse to come in and adjust her bed back. That started off a string of about 3 straight doctors and nurses back-to-back-to-back. Mom looks at me afterwards and says, 'See, never fails. If you want someone to come in, lie down and take a nap.' Luckily we did have them queue up like that though b/c she took a good 2-hour nap after that. She actually requested the same (where the nurse adjusted her back to - not the upright and locked) position tonight!

They've also kept the lowest oxygen mask on her at 50% overnight. When she pulls this off, that will be a great turnaround from a few days ago. She's nervous about it, but I told her it's like training wheels. She's gotta ween off it so no better way to do it then go overnight.

I think the best highlight today is other than the motivational signs, cards, blog chants, and emails - she's got a visual she's utilizing. I guess several years ago there was a skit at Bartle (the scout camp she frequents often) where the 'Pneumonia Brothers' came in. She literally laughs every time she tells the story. Imagine Mom with a glass of wine in one hand, holding her other hand out to excitedly tell the story, and that laugh she has (cracking herself up a bit) when telling the story. Those of you who have been around long enough know what I'm talking about. Couple that with a little bit of the funk she's got in her lungs and a slightly weakened laugh / animation then you've got a pretty damn good visual of how she says 'Pnuemonia Brothers' - deep, raspy, with a laugh.

So anyway, her visual is the 'Pneumonia Brothers' in her backyard and they're surrounded by all the good fireflies she's caught. She's running around catching only the good ones and throwing the Pneumonia Brothers into the area to get eaten by them. I have to say - I Love It and she does too.

That's it for now, folks. Be good!

Wed, 7.30 - 10% More...

It's a good problem to have, but a unique one when Ganguly walks in and says the lungs are '10% better' and Mom's disappointed. The morning X-Rays showed some additional clearing of the lungs after a good night's rest (7 hours total across 3 and 4-hour blocks) that included a relatively stable temperature...no ice packs required. She also wanted her WBCs to be a little above the 0.3 mark they were at this morning. It's safe to say that even though they have not trended up like we want, to clear the lungs in general is good news.

The real reason she was disappointed is she'd hoped to have some physical therapy today including actually putting her feet on the ground and maybe even walking around a bit. So it was disappointing to learn that. I assured her that good news is not bad, and that's what's important (I mean seriously - beggars can't be choosers!). Luckily she agreed and really 'attacked' the day.

So today she played gin rummy with Janice, watched some HGTV, emailed on her laptop, and texted on her new Blackberry. This was all done while wearing the CPap - the lesser mask set at a lower oxygen setting of 50%. We're hoping that is the beginning of the weening off oxygen although she does wear the BiPap at night and sometimes during naps.

Most people have been reading the blog long enough to remember we gave some treats to the nurses down in the BMT ward right after we got here. Well Rhonda brought in some See's candies today, and it created a pretty funny moment. Ganguly came in this afternoon and we had our usual visit about status, etc. (where he confirmed we will have physical therapy tomorrow!). Mom told him to make sure he stopped at the nurse's station to get some See's candies. I have to say that I did not expect what was next. He's on his way out, giving orders, and stops to ask where the candy is! Seriously! We didn't laugh too loud seeing as how he's the guy driving this ship.

They did finally get her feeding tube fully operational today after a few issues. But she's receiving dairy-free food and the nutrients will be great strength-builders. It didn't happen until shortly before I was kicked out (7 - 8:30 AM and PM are visitor-free) this evening so I asked her if it was ok. Mom had her funny comment, 'hmmm...tasty.' Definitely made me laugh considering she's not tasting a thing.

There's not a lot else to report today other than her temperature stayed pretty damn stable all day. That was a welcomed event we're hoping continues this evening. She did say her personal goal today was to wear herself out...mission accomplished. Let's hope the morning X-Rays and WBC counts show additional improvement!

Good night everyone.

Tues, 7.29 - Progress

There was progress today - for mom but not my blogging. I had this whole thing written out then somehow deleted it. So here goes round 2. Hopefully it's as good as the first.

It seems like the good days are generally preceded by good sleep at night. So for those of you saying you don't need more sleep, think again! ;) The fever seems to peak at night (and is a little elevated tonight as I type this), but they put ice packs underneath her arms to enable her to get some rest between all the usual activity.

Ganguly came in early this morning and was pleased with the progress she's made then repeated those sentiments this afternoon. The main progress is clearing of the lungs. I want to be careful to say that it's not necessarily the pneumonia as much as additional clearing. That's still great b/c if we can clear the lungs it will improve the blood oxygen level some more. And that will get to the follow-up bone marrow biopsy we want to have.

If we can get that done and the confirm the Leukemia's gone, it will give us additional treatment options such as GCSF. GCSF promotes the production of WBCs. That's why the Leukemia needs to be eliminated - no reason to speculate that it's gone and regrow some bad guys. The WBCs were at 0.4 today. Let's get these guys growing again! I told her we need them to go forth and multiply. She loved some of the cheers today on the blog I read to her.

She has improved to the point where they are looking to bring in physical therapists to start stretching and exercising her legs in bed, and potentially even standing the bed up and working on getting her out of bed soon. She is very excited about the prospects of that, and I assured her that the Cathi Armstrong bike work she did previously has most definitely better prepared her for these lung issues.

The improvement was enough that she asked for her laptop a couple of times today, and some of you may have even gotten emails from that time. But I snapped a couple of pictures that also show her newest hat - a tie-dyed one! She's got quite the hat selection already, and loves the different ones.

She wore the CPap mask the majority of the day, which is big because it is a lower 'horsepower' machine that her night nurse the past four nights (Kristi - we like her a lot) calls it a 'blower.' It was on for probably about 7 or 8 hours today at 60%. That's also positive since she needed 80% at one point yesterday with the higher-powered BiPap machine.

We also bought a whiteboard today for her to communicate with people who are not healthy enough to enter the room. They can now stand outside the glass door to write messages back and forth. Until it's in use though, I wrote 'Grow WBCs' in green on top and 'Beat Pneumonia' in black below it with a big red 'X' through it...Ghostbusters style. She pointed at it and said, 'that's the deal'.

Walt came in this afternoon when she had the CPap on and said, 'I thought you liked the BiPap better.' She joked she 'still had choices.' So while the BiPap may do a lot for her and ease her work a bit, she can talk better through the CPap and it does show stronger lungs. I had to laugh though when I told her if we can get the blood oxygen levels up then we'll get the biopsy, she was trying to have some ice. But Mom connected what I was saying and said, 'well let's putt the CPap back on and get going!' Definitely in control and clearly motivated to beat this.

The last story I wanted to tell today happened when Janice came in this afternoon. She was helping Mom and made a comment about when it's her turn to go through this (she also has myelodysplasia). Mom responded, 'We're going to get you a cure for this and change the way they treat this shit.' I had a huge smile, and it occurred to me just how powerful a messenger someone like Cathi Maynard will be for Leukemia treatment!

Mon, 7.28 - Pneumonia and WBCs

Today was nothing short of eventful. I'm back in KC after one night in Chicago. Initially I thought I'd let those of you reading regularly down by not understanding and posting things correctly, but really we just got more clarity from Ganguly this morning. The lung issue is basically pneumonia.

It has not gotten worse than it was. However it hasn't gotten better either. And that's what we need to have happen. We need to see some improvement over the next few days to set us on the road to positive health and a bone marrow transplant. She needs to be 100% healthy before they can do it. Thus Mark and I are rallying around her as are all of her siblings and parents to help in the fight.

The challenge is people with myelodysplasia (Mom's pre-existing anemic condition) take longer to regrow their white blood cells during this part of the treatment. Doctors are pretty dang sure the leukemeia's 'licked' as Mom says. But we need the bone marrow to regrow and produce some WBCs to kick pneumonia's butt. So she and I are doing a lot of visualizing and praying for new white blood cells tonight. Can I get a W-B-C?! And we're doing the same for elimination of the pneumonia...every breathe more leaves.

As I was typing this, I did get confirmation that her WBCs were up to 0.4 today. That's a good sign. We just need it to trend up and not dip back down as it possibly could. The funny thing I just realized is it's ironic that the Cubs wave a white flag with a blue 'W' on it for a win. It sounds like just the decoration for her room.

Back to Mom. She did show signs of improvement this afternoon by requiring less oxygen (60%) than she had earlier in the day. And while she upgraded machines from a CPap to a BiPap, she went back to the CPap for a bit. Now she's resting comfortably with the BiPap on. The difference between the two is how tightly the mask is held onto her face. The BiPap has straps across the top and both sides that are of a cloth material. It's also pressurized to her face, forcing the lungs to open up a bit more than she might get them to open. And the CPap basically has a plastic strap that goes around your head similar to a construction mask you'd buy at the hardware store. The nurse refers to it as more of a 'blower'.

In closing, I want to ask everyone to keep upbeat as we hope for an improvement in the near future. We need the prayers and positive vibes more than ever!

Sun, 7.27 - Day 2 in ICU

Day 2 in the ICU was much better than the past few days. First, a WBC and Leukemia update. We hit a WBC level of 0.1 today - which was the initial target. That's great news. The doctors believe we were successful against the Leukemia. They went ahead and sent some blood samples off to see if they can confirm the Leukemia cells are gone. She's due another bone marrow biopsy to really confirm and analyze, but that will not happen until she improves a little more. It originally was scheduled for yesterday then due to doctor availability and her move to the ICU, they said possibly Monday. I would surprised if tomorrow's the day. But again - there is no rush on this as they think the Leukemia is gone. The biopsy will verify all leukemia cancers in her marrow are gone. Then another will be done in the future to evaluate good marrow is growing back

Now back to the challenge at hand.

- Mental: Good
- Physical: Tough
- Medical: Better

Today was better from the get-go as Mom slept much better through the night last night on the elevated Oxygen and ICU care. She did have some feverish issues, but nothing like the previous two nights where it was a constant roller coaster of hot - cold - repeat cycle. You could tell when Annie and I got there early this morning on our way out of town.

The rest of the day was rather uneventful from a Medical perspective. Abyankar came in and thought there was a possibility of getting her out, but concluded by the time the day was over that another day or two in there would do her good. Ultimately it's a conservative approach ensuring that her fever and oxygen levels continue to progress. They do think that a couple of the times she was given platelets that it caused her fever to elevate. And really she's just not there physically.

I continue to wish there was an update on the lung issues, but there's not a real clear one. The chest X-Ray showed additional fluid in her lungs this morning. But through a stethoscope she sounded improved in the morning. And when she felt short on air this afternoon, they said she sounded better than she did earlier today. So we continue to wonder what the damn thing is.

One issue we learned today is all the drugs she's getting are interfering with a good speutum culture. Hopefully we'll get some more clarity tomorrow, but don't hold your breath. For now be grateful the doctors aren't alarmed. Additionally as her white blood cells rebound and begin to rebuild she'll be able to fight the infection herself. Now wouldn't that be something - Mom's body could help beat something medicine hasn't fully yet...anybody surprised by that???

Physically she's not able to do much so there's still progress to be made. When she attempted to negotiate her way out of there, and the Nurse Practitioner asked if she could walk around her bed. She realized she would need to do more on her own outside of ICU so she agreed.

However she did keep some food down today (1/2 an orange and some iced OJ). They're looking at different nausea drugs that will help with food consumption and don't induce drowsiness.

Mentally she's doing pretty well. She doesn't want to be alone so there's a rotation of close family (Mom, Sisters, Walt, Me / Annie, and on Wednesday Mark). Janice especially has been a trooper staying the last 2 nights with her and will tonight as well. We honestly don't talk much though. It's just listening and ensuring she does not try to talk too much and lets herself sleep when it beckons.

I should point out that she's made such an impression on the nurses down in Unit 41 that they keep hoping for her back, and several have talked about and / or attempted to stop up and say hello. That's Mom - still making connections and leaving a lasting impression on everyone she comes into contact with!

That's it for now. Hopefully everyone has a great week!

Sat, 7.26 - ICU and a Haircut...not quite Hot Dog and a Shake

Sorry for the very poor '80s Dave Lee Roth reference, but ICU and a Haircut had a certain ring to it that reminded me of that song from 20 years ago. You're probably wondering how I could exactly say it like that. Well I guess a great way to describe today is that it's a day we all knew was coming (and not in a negative way at all). Some still handle those days better than others though.

About 4:30 AM this morning the decision was made to take Mom to ICU. She just wasn't getting her blood oxygen levels up high enough to keep her in her normal room. So they opted to take her there and hook her up to a C-PAP (I'm sure I've misspelled and / or butchered the machine name's acronym but so be it). The mask she's wearing is just the same as what she had in the previous room. But the machine ensures she's getting more oxygen than she was, and that's had some great results already.

The room itself is 2 floors higher and she's got a corner 'suite'. She called it the 'Emperor's Taj Mahal.' We did have a laugh about her bed facing away from those windows. I just assured her that's to ensure she's focused on tasks ahead. Overall, readings were pretty decent today:

- Medical: Tough

- Phsyical: Tough

- Mental: Good

Medically her blood counts were acceptable, and Abyankar (returning for the first time since Day 1 but just there today) was satisfied with where she is. She had a fever in the morning then curtailed it in the afternoon / early evening before having ice packs again around 8:30 - 9 this evening. Stuff she eats continues to come up in addition to the lung infiltrates coming up. We're still hopeful the infectious disease doctors walk in with some kind of legitimate answer here shortly so we can move past the current battle.

From a physical perspective they are not having her get out of bed. So she's hooked up to all the appropriate equipment to enable that. It's great to know she truly can focus on her health instead of trying to mosey to the bathroom, etc. That being said, it was a bit funny when I was with her tonight and she looked down at her legs. I could tell she was thinking something so I asked. Her response, 'well they've put these leggings on me and they're doing something...but I don't know what.' I bit my lip and explained those were likely electromagnetic pulses initiating responses from her legs to simulat use / movement. I'm not a doctor, but I couldn't have been too far off and she nodded in agreement at my answer.

Mentally she was in a good place today. Annie commented that she seemed to have more color and overall awareness today than yesterday - likely due to the increased blood oxygen levels. That was definitely true as she told Jered (the day / afternoon nurse) she would like a gin and tonic when he asked if she wanted anything. It got a good chuckle out of him, and he said he was off at 7:30 so they could do it then. She genuinely seemed in good spirits even if you have to continuously remind her to relax.

Haircut

The biggest news of the day is she got a haircut. She told me when I went up to tell her good night, 'Thanks for buzzing my hair. It was the highlight of my day.' I only wish I could take credit for it. It was primarily a Jered and Annie production. After trying to just buzz the hair with some clippers Mark had brought up, we went back to the drawing board. Jered got scissors to trim it up a bit then the two of them went to town shaving. I've got several pictures attached:

Jered and Annie shaving after the trim.

We left the mohawk in for a new Mic-O-Say look.

All gone!

She does have a white cloth cap on now with a gold butterfly on it meant for accomplishing amazing feats. There are a lot of other doo rags and hats coming (including one customized from a Crate and Barrel fabric) so there'll be plenty of options going forward. We also kept a lock of hair so she can compare it to what grows back.

Alright, that's it for tonight. I'll be leaving tomorrow but continue with the updates.

Fri, 7.25 - 2 Weeks. Tough Times

Expect a tough 10 - 12 days as Mom continues to battle these infections and some marrow regrows. Ganguly says over 12 years of treating leukemia patient, he's only had one perfect one. So this is not unexpected. That being said, we got the stiff doctor with the high starch shirt to make actual contact with her (mind you it was minimal but that's a lot for 2 weeks)! It's clear to me from watching the staff interact that they value her as a patient, especially her constant 'thank yous' and remembering their names.

- Mental: Tough
- Physical: Tough
- Medical: Tough

Mentally it's tough for her as her brain's a bit scrambled. It's become a matter of carrying her and keeping her strong. She often drifts into different stories and has trouble connecting the exact dates of when things happened since arriving. Or she talks and chuckles in her sleep. We did update her wall calendar and began adding some different milestones on there to help remember.

Her sense of humor's still there though. When the respiratory therapist came in this afternoon and said she looked better than lunch time, Mom responded (an ESPN highlight of a Chiefs / Bengals game was on the TV) that 'yes she did. But that's about like the two jerseys on television being two different shades of orange.' Always keeping us laughing. Then she drifts off to sleep. I have no doubt when she's back on her toes we'll get a good laugh on these stories. She also said the Packers are stuck between a rock and Brett Favre's ego shortly after asking if the Favre situation would impact Green Bay's salary cap. It's moments like those that remind you how diverse her interests are!

Physically she's a trooper. She needs assistance going to the bathroom and it takes a lot out of her. Yet she really powers through it. There haven't been bike updates yet although we're hoping soon. I am planning to get her a t-shirt regarding Olympic swimming as well. There are mutliple iterations on the lung issues remaining. Which leads me to Medical.

Medically they're still dealing with rising and falling fevers and lung issues. They were able to rule out 2 big lung infections, which is good. But they're still looking at them to confirm what they are. There's a chance it's blood in there. You can't determine that without another bronchoscopy though, and there are no plans to do one immediately.

One of the nausea drugs they were giving her was dangerous for the kidneys so they changed it up. And the kidneys responded positively.

I do have another set of blood counts to help understand additional progression:

- WBC: 0.2
- Hemoglobin: 7.6

We're bringing up clippers tomorrow to buzz her hair per her request. She's pretty sure the hair's about to fall out anyway so this will make it more manageable. Then again last Sunday she thought it would be gone by Tuesday. I go back to the original post though, and we're actually right on target with the 3rd week...one of the few predictable occurances so far.

Last but not least I wanted to update on last night's 'panic attack'. Mom did not have a panic attack. She was just alarmed by the 'men in white coats.' The comment she made to me was she thinks there's a minimum height requirement of 6'4" to work here (sounds more like a basketball team)! I can assure everyone that's not the case as Ganguly definitely is not pushing 6'4". He may be even shorter than me. Anyway it was just overwhelming to have them all in here when she was dead asleep. There will be someone staying with her every night until they're more comfortable with what's in there though. We didn't have someone here originally (Mari came up right after that happened) last night, and just like the transportation issues we'll overcome it.

Thurs, 7.24 - Almost Two Weeks

Today was not nearly as eventful as yesterday.

- Medical: Good
- Physical: Tough
- Mental: Good

Mom continues to struggle to stay awake and her overall physical feelings. We spoke earlier today and she did repeat that she's got the lungs of a competitive swimmer, which of course made me laugh and smile. I did get a picture of her breakfast today - an orange popsicle.

The doctors said she was doing pretty decent this morning after continued up and down fevers that make it tough to sleep. We've all woken up with the sweaty shirt and it's just brutal to get back to sleep. I can only imagine the volume of clothes she's gone through this week as the fever was just beginning last weekend while I was there.

There was a bit of a scare this evening as she had some short, rapid breathing the doctors termed a 'panic attack.' Apparently the oxygen mask Mom is wearing interferes with her hearing aids and makes a hissing noise that combined with being asleep really rattled her. She was disoriented when a team of personnel came into the room. And having seen her wake up many times through my life in a somewhat dazed state, I can only imagine how dazed she was to see that. It was more worry than it was, and I've been assured she's sleeping peacefully as I type this.

I'll be back onsite tomorrow by early afternoon and will post more then. Pictures would be good, but I'll make a judgement call as I fully expect to see someone that looks pretty sick. And we all know she doesn't want too many people to get any hint of her being down!

7.23 - Competitive Swimming

Curious name? It has meaning, believe me.

- Medical: Tough. It was probably the toughest day medically since we've been in this battle.
- Mental: Strong...as always!
- Physical: Tough. She said she's 'all used up' this evening, which you'll see why as you read further.

Obviously these 3 criteria equal a less positive day than yesterday, but I would say it ended up pretty damn well all things considered.

I got a call this morning from Mom to tell me they'd confirmed a bronchoscopy appointment for her (for those curious, here's the Wikipedia link: http://en.wikipedia.org/wiki/Bronchoscopy - looks like 'fun', doesn't it?) That had been an option for a while now with the continued lung / infection issues. Well there was more to it than just the bronchoscopy.

During the night, Mom's blood oxygen sunk so they had to give her a mask. The nurses remarked that she was doing amazingly well to just now need oxygen so we had that going for us. However the complexity is doing a bronchoscopy while a patient has low blood oxygen requires ICU and usually a ventilator post-surgery during recovery. Obviously anytime you introduce those two terms it's another level of risk. And they wouldn't know for sure if it would be done standard or in ICU until just before the scope.

She had communion and recited the 'Our Father' with the hospital priest prior to going down to the operating room too. That was an extremely emotional experience.

I'm extremely relieved to report that she was able to have a standard procedure and avoid ICU + ventilator altogether. We're all very relieved and you may have seen Walt and Rhonda's comments on yesterday's entry stating that. It just goes to show you how everything can quickly change in either direction and it's a matter of focusing on the task immediately in front.

I'm also happy to report that Mom's mental strength during this process was (as usual) amazing. She told several people today that her mantra through the process was / is 'I have the lungs of a competitive swimmer.' Pretty impressive and I'm hoping that she can spare that for my next triathlon. And when she came out, she asked Margaret in her typical tone, 'are you impressed?' Talk about the understatement thus far! We're all amazed, Mom.

Mari says she's physically exhausted, but is still sharp enough (although she doesn't feel like she's as sharp as she is) that she's still correcting the nurses and helping keep them on the same page...still in charge, Captain Cathi.

She's not out of the woods on all of the lung issues, but we're hoping this was the valley. The fever's still around so that can make it difficult to rest. They're still trying to confirm they know everything about where she's been, what the infections could be, etc. They did speculate today that the lung infiltration could be leukemia cells. We'll keep everyone posted.

On days like today, it's great to know everyone's praying and visualizing great things for Mom. We know there are days like this in front of us, but it's good to have one behind us where she got up one more time than she was knocked down.

Thanks everyone.

Big Day, Part I (7.22)

Per the last post, today was obviously a huge day. I wasn't even sure if I wanted to post this evening as I almost wanted to just let the last post stand alone (not to mention telling everyone I know about the news). While this news does not guarantee anything, you take percentages in these situations and this greatly helps those.

Mom and I spoke early this morning, and I can assure you the nature of that conversation was quite different from this afternoon's. Similarily the text message that read 'Call me ASAP' had a different tone from the one @ 10 AM on 7.11. She's very excited to know this information. We do need to confirm through further evaluation that Walt's equipped to donate so we'll continue looking at others before saying, 'ok, Walt's the donor.'

While I don't have the overall ratings for the 3 categories I've outlined the past couple of nights, Grandma's post is one thing Mom mentioned to me on the phone too. She said sometimes it feels like she's swimming in sewage, comes up to an upper-tier of sewage, realizes that it's even worse, and goes back down. Needless to say that paints a darker picture of the overall 'blah' that Mom feels. Mentally I felt like she was in a good place today though. And Mari seconded that tonight. She said that Mom has been just a pleasure to be around this week as she battles this, and is so admirably strong. I think the chemo just has her feeling down physically more than anything. Here's a picture of her doing her breathing treament in a nice tie dye!

Not a lot else to report tonight other than Robin's (nurse) back, and we love that. She's so great. Mom's still fighting off the lung infections, and Ganguly feels good about where she is. We characterized it as 'cautious optimism'. You'll take that considering doctors are pretty conservative in their analysis anyway.

We're also starting to spin the wheels of how / when this transplant will take place. We still need to see the exact results of Round 1 of chemo then go from there. Clearly Mom needs to be in good enough physical shape to have the bone marrow along with continuing this current stretch of the post-induction process.

WBC: who cares! ;) I'll get details later
Hemoglobin: same!

MATCH!

From Walt...

Walt here again. I am a match! Wahoo! Do a little dance. Make a little love. Get down tonight!

Now we'll see if her hair regrows red or the same as it is.

Mon, 7.21 - Fever and 'Stranded' Day

Status

Per yesterday's post, here's a rating on today:

- Emotional: Good. Not overly positive, but that's not a bad thing. It was a very mentally strong day that we love about Mom.
- Physical: Average. Primarily due to carrying a fever the majority of the day and other things tied to the emotional rating.
- Medical: Good. Ganguly gave nothing to indicate negativity, but Mom mentioned he sounded distracted.

WBC: 0.5
Hemoglobin: 6.9

Commentary

It looks like some additional people were able to post to the blog, which is great. If other people are having problems then please let me know. I want as many people to be enabled for posting as possible.

Not a lot of food was kept down today. First it was Kodee (nurse the past couple of days) who would not give Mom her heartburn medication. For some reason, her file noted she had it already. Instead Kodee gave her Maalox. That didn't help keep the breakfast down, and instead helped her get rid of it. Then later on in the day she got sick again trying to keep a meal.

Ganguly came in today w/ his crew as Mom calls them, and one of them picked up her sinus irrigation bottle. He asked Mom what it was. She told him what it was before he told her she was only to use things they gave her. She reluctantly agreed. One thing she's been is a model patient that always listens to what they say and will keep anyone in line that strays.

Shortly thereafter she was taken down for a chest X-ray. She commented the folks that took her down were not slim, and they did decided not to put a mask on her. Then they wheeled her down and left her outside of the X-ray room (mind you with multiple people walking around that I'm sure were less clean than those of us just visiting her) for about 10 minutes prior to the technician coming out to get her. Needless to say she was a little frustrated. Eventually she got done and asked for a glass of water. Well one thing I don't think I've mentioned is they measure everything in and out. So the technician of course made a production out of needing to check if she could have water, etc. Without going into great detail about how she offered to help the technician in this conundrum, Mom ended up without the water and went back to her room.

After being left in the hallway, she asked Kodee what the best plan was to avoid that. Kodee said she should have someone go with her. We will definitely be accompanying her to all X-rays and scans as Mari went to the CT scan later in the day, and everything went much smoother.

The afternoon also brought a visit by a sinus technician after Ganguly mentioned her sinuses looked irritated. She asked mom if she ever irrigated her sinuses. Well that conversation led to of course the recap of what Dr. Ganguly had said earlier (regarding the sinus irrigation and subsequent disposal of it). The technician promised to set him straight and return the irrigation so looks like Captain Cathi may soon become Dr. Cathi.

Hopefully the recap gives everyone a clearer picture of what I meant by her emotional state not necessarily being positive, but definitely good. She really does a great job of focusing on what they say to her, give her for medication, etc, and it helps her feel more in control - not to meniton (in my own opinion) keeping her sharp mentally. I'm a firm believer that sick or not, if you do not require your brain to work then it will become lazy. So I'm very proud of her utilizing that noodle for managing her medical care!

I will try to get more pictures on here in the coming days. I know you all could use them.

Sun, 7.20 - Lung Issues and Modified Rating System

Today got me to thinking. I've been posting it was a 'good', 'decent', or other adjective day. Well on my flight I realized that there are really 3 key measurements of the day. They are emotional / spirits, physical, and Doctor / Medical. Often times the doctor will say she's doing great, but believe me - she doesn't feel great. So that's how I'm going to try and characterize each day going forward.

- Emotional: Good. Little weepiness and being upset / needing carrying from others. We didn't have a cry until I was leaving today.

- Physical: Below Average. Today was the first day where she really didn't feel like she had a lot of energy....more on that later in true Mom / Cathi form.

- Medical: Good. See the next section.

WBC: 0.9 As noted below, we expect that to trend up a bit.

Hemoglobin: 7.4. The blood graph can be seen here from 7.8 through 8.10 (random date I put out there as we're unsure how long they'll be measuring it daily).

Dr Ganguly noted that the Leukemia had likely been with Mom for 2-3 weeks before she was admitted. Because the Leukemia increased the production of white blood cells as result of the cancer, the cells did not work as normally should. That's how she brought the lung infections in with her. Her immune system was just depleted.

From culture tests on the speutum, two lung infections have been identified. They are adjusting the antibiotics for the two infections. They are also concerned about mold and are giving medications to prevent any reactions or infections from mold. Her lung infections are critical and can create complications that can be life threatening. Mom did ask him if he'd cured it to which responded, 'THOUSANDS of times.' They will likely do a chest cat scan next week in order to get a better look at the infections in her lungs. In addition they may put a camera into her lungs to look around, suck out some infections, and look for more.

He is requesting extra caution. No Guests are to enter the room before checking at the Nurses' station. No sniffly noses in the room even for allergies. No one is to visit Mom who has been in close quarters with anyone who is sick or the potential of having been in a high germ environment. The mold is a concern and paper garments and masks may be required by the nurses for visitors. She is now required to wear a mask any time she is out of the room (which really began on Friday). Mom will work with the nurses station to make sure guests are informed of proper precautions. The contact with family and Peggy before visiting has been very much appreciated and needs to continue.

For those that do see her, I've instituted 'air hugs' and 'blowing and receiving kisses.' It's great to blow her a kiss and have her catch it, apply it to her lips, then blow on in return for you to catch and apply. The air hug is also an affectionate move that we all know Mom loves. She's quite a hugger!

Her recovery is very much supported by cheerful visits from those boding bad British jokes (sorry Janet!) and words of encouragement. She often times saves the letters and the blog for times when she needs that 'pick me up.' While the well wishers are many, concern of importing infections requires the guest list to be managed.

A follow-up bone marrow biopsy is scheduled at day 14. Based on these findings more chemo may be required. Now that the chemo is complete, bone marrow growth could be occurring - giving marrow to replenish white blood cells and aide in fighting off infections. A normal person would recover in roughly three weeks. With her Q5 Minus, it will take 3-5 weeks before recovering from the cells killed by the chemo. The good news is that she could go home after chemo recovery. Then the wait for 1-3 months before going back for a marrow transplant. And then back to her normal life, hopefully better than before. We can rebuild her...Better than before, better, stronger, faster than ever before. Is the world prepared for a faster Mom / Captain Cathi?!

She also rode the bike today for 2 miles. That's what I meant earlier when I said 'stay tuned below' when the Physical rating was down. It spoke to her dilligence in this that she did the longest bike ride of the 3 days I was there on her worst day. She didn't quite get the 5 times on her breathing toy, but she got it twice and was extremely close a third time. It wasn't without effort though. She probably did it 10 times in the effort.

Sat, 7.19 - Chemo's Done!

We had an 'ok' day today. Cell counts were as follows:

- WBC: 0.6
- Hemoglobin: 7

Dr. Ganguly visited a little later than normal today, but still had positive things to say. He's pretty happy with things Mom's hacking up. He thinks that we're making progress in getting things out. However he does think Mom may have contracted something during the Colorado zip line trip, which is what we're really working on. Knowing doesn't make it any easier, but it's very likely the case given that her immune system could keep it down prior to her white cells being so low.

While the chemo is done, he wants to see it trend down to 0.1 in the coming days. That's a great segue for the rest of the day.

It was a bit of an emotional roller coaster that ended on a high note by the time I left the hospital this evening. She's really frustrated with her ever-changing temperature, the continual hacking, potential arrival of chemo side effects, and general weakness. We all keep telling her to keep her chin up in spite of these things. I made the comment that 'it's not always going to be seashells and ballonos, espeically this week.' Mom's attitude of attacking one task at a time is pretty infectious and helps keep us grounded.

She rode the bike for 1.5 miles this afternoon. That was good. But when she went to do the sinus irrigation followed by her breathing toy, it got her sick. This was very frustrating. However shortly after the respiratory nurse came in and listened via stethoscope then reported positive results and engaged in dialogue that had Mom smiling. That reminds me. She used the term 'happy dance' multiple times today, which was very cute. She also alluded to the happy dance celebrating the conclusion of the chemo (hopefully for good although there's a chance she'll need it again).

Honestly what it comes down to is she really needs people to carry her during this time. Let's keep up the great work. With a posting from Africa yesterday, she now has almost all the continents represented. Anyone know someone in Antarctica or Asia?

How do I post? Get your answer here!

Some people have asked about posting to the blog. I realized there was a setting that was wrong so hopefully this will resolve those issues.

- Go to the blog entry you'd like to comment on. Hint: Mom and most of us read the most recent entries first.
- Click 'Post Your Comment' or the hyperlink that has the # of comments linked.
- Enter your comment in the 'Leave your comment' field.
- If it shows up, enter the word verification in the box just below the scrambled word.
- Click the radio button next to 'Name / URL.'
- Enter your name and you can enter your own URL if you'd like.
- Click 'Publish Your Comment'.

Your comment should show as saved.

If you have additional problems, please contact me at conorm@slalom.com and I'll see what I can do to ensure you are able to join in the fun. Mom needs as many people as possible to help motivate her!

Friday, 7.18...back in KC

Today is classified as another good day. It wasn't a GREAT day, but definitely not one that will go down as remotely bad. Ganguly remarked this morning that she's doing very good, but they're not sending her home. That got a laugh out of him and her. The only real medical thing is a hit or miss fever that seems to fluctuate between being too warm or too cold.

WBC: 0.8
Hemoglobin: 6.7

The techie consultant in me is going to graph this data so we have visual evidence of how she's doing. Hopefully I'll get that done this weekend!

One thing a return to the hospital did was remind me again just how strong a woman my Mom is (not that I needed a 'reminder' per se). I don't know what I expected when I got here tonight as I'm trying to really manage those expectations. But man, she looks pretty damn good! She did say her hair doesn't really feel like hair so it's on the way out. Here are two specific examples that reminded me though:

1. I'm sitting here and in a very cheerful voice says, 'do you want to go with me to ride the bike?' Maybe some of the Tour de France talk has gotten to her b/c after 1.8 miles (you read that right - 1.8 after doing 1.0 just several days ago) she said, 'it ain't Lance, but it ain't bad.' Literally had the nurses in stitches and one said they were going to have to post that on the bike as an inspirational quote.

2. She was getting ready for bed and I look up from my laptop to see her playing with the breathing toy. Then I hear a little bit of a giggle coming from her so I look up. She noticed I was looking at her so she said, 'well I try to get it to the yellow line 5 times before I stop.' Hmmm...good goal I thought. But I asked her if she'd been able to do it the whole time or if that's what they asked her to do. Basically just trying to get a sense of what she was working towards and how she's been doing. Her response was priceless. 'They want me to breathe into it 5 times and stop.' I busted out a huge grin b/c I know she'd done it at least twice that many times! You go Mom!

Lastly, I'll post on a separate post sometime tomorrow some instructions for adding a comment to the blog. She's received several emails from people having difficulties with it. Clearly something we need to clear up so everyone can post! Btw, has anyone looked at the # of times this blog's been viewed? Needless to say she's popular. ;)

Mom / Cathi Request

Captain Cathi strikes again. She does not want anyone 'crossing that threshold' (of the door) who remotely thinks she's going to die. One of the challenges of having a lot of friends and family is one pessismistic thought turns into perceived reality. Well for Mom, it's already tough being in this room and not always feeling like you know everything. It often times feels to her like maybe the doctors / nurses have said something to family and not to her. Then when something gets to her, a lot of other thoughts start spinning - anger, deceit, and general inquisition.

These are very normal thoughts for someone in Mom's position to have. You want to have someone or something to blame. You're paranoid people are hiding information from you. Yada yada. I told her we do not need her honing in on those things and it truly is a case where you get knocked down a few times emotionally, but you get back up one more time than you got down. That's how we'll beat this emotionally. It's ok to have emotional challenges so long as the mental aspects are sharp and optimistic. Her insistence proves to me she's there.

So we're laying down the gauntlet so to speak. The power of the mind is very powerful, and doubting will get us nowhere. Reality is the medical professionals are happy, which is what matters. They're the ones with the project plan and we're working on one task at a time, one day at a time.

That's it for now. Hopefully everyone understands and no one is offended by my comments. But I needed to put it out there for her sake as our role in this is to be strong for her and help pick her up when times do get tough. God knows they're going to be a lot tougher as we progress.

A Word from Mom and Standard Updates

Mom / Cathi

a comment from Cathi. I just want everyone to know how much I look forward to the posts out here. and how good it feels to have a large cheerleading section.Yesterday they called in a pulmonology team. Today the team came in to say good bye "we probably won't see you again." Damn I'm good. That was about the most fun conversation I've had. I miss guests but I am busy with things like walking, breathing exercises, bicycling and preventive measures for chemo side effects. I appreciate every single card, email and chocolate bar.

Cathi

Update

Well the WBC was up slightly today by about 0.2 - 0.3. I'm not posting the actual number as I do not have it, but speculation is that the 'infiltrates' (as Mom calls them - I LOVE that term) are still trying to fight. It shows her dedication to the visualiztion aspect of things, which I know can be a huge upside. I reminded her several days back of what she told me when my leg was infected and almost amputated below the knee. She told me back then (shocking that it'd be a sports reference) to envision batters hitting healthy cells to the knee from below resulting in the right health ingredients preserving my knee to this day.

Her WBC increase is not unexpected. These infiltrates are basically insinctive and looking at the low WBC to say, 'we should help.' It's Mom's duty to help them understand it's not their place to fight and they should and will go away. We'll have another update on WBC tomorrow.

I have not talked to Mom since mid-morning today, but I can tell you this. She's got the right attitude (not shocking at all!) She occasionally will ask what else she could have done differently, and I think this brings up a great topic.

First, as I look back at emails I got from her over the past 6 months I don't know that I've heard more times where she was 'kicking back on the sofa and resting up.' She even delayed and declinedd various trips. Perhaps this was listening to her body and instincts or just plain common sense. Second and more importantly, when people ask me, 'did they catch it in time?' I tell them 'ABSOLUTELY'. There's really nothing different Mom could have done along the way and I honestly admire her approach of ignoring what ails her in order to enjoy her life. It's what guides all of us to follow her as one of the strongest women we've ever met. Moreso and especially scientifically - if you catch AML, you've caught it in time. AML is often times deadly within weeks or months. The fact we're blogging today tells me we did catch it in time.

Another update I wanted to post was regarding one of my best friends whom I chatted with tonight. While I do not put pressure directly or exorcise anyone for their choices, it meant a lot to me that he said he was going tomorrow to give blood for the first time. This tells me we as a family are having a great impact on the world and ensuring that the battle is not just won this time but EVERY time. It's encouraging to me to think that what we're experiencing as a family can and will be a minor deal eventually.

Wednesday on my morning radio show (Mike and Mike in the Morning) they were raising money for the Jimmy V foundation. And while I think this is a different form of cancer, I was nodding my head when Greenberg said he sees a time where cancer is something you go to the doctor for, get an IV / pill, and you're good to go. I smiled out loud at that comment b/c I'm rallied more than ever around what I can do to help.

Walt called today to ask me for Mom's home computer login. I had one hell of a smile when Walt said that Mom wanted pictures of her doing outdoorsy-type activities printed and posted on her wall so she could 'remember when she was invincible.' That spoke to her attitude peaks and we're focusing on those as a family and ensuring those far outnumber any downs. I'll never forget her comment when I brought 'That Woman is a Success' to her room. Her response was, 'I'm glad you brouught that. It reminds me of WHO I AM.' Amazing.

I'll be in KC tomorrow after wearing my mask upon the plane and showering / sanitizing before I head to the hospital so I'll have more updates then. But key takeaways today are that blood results were not ideal. However they weren't completely out of whack. I keep thinking 'Momma said there'd be days like this.' All days aren't going to be 'seashells and balloons' as I like to say. We're going to have bad days and today was a slight step back while we look forward to the ongoing battle ahead.

One last note is tonight (7.17) is the 2nd night in a row she's slept alone, and it's gone well.

Updated Peggy Morgan Contact Information

All -

Here's additional contact information for Peggy as she wants to be sure anyone that wants to can get in touch with her!

Mobile: 913-634-6284
Work: 816-783-8609

Conor

Wed, 7.16 - We have Pictures! And Donation Requests

As promised in the title, we now have some pictures. Here's a shot of the whiteboard I alluded to at one point. You can see the Elvis clock, some cards, and pictures.

First things first, the medical stuff.

WBC: 0.8. This means her suceptibility to illness / infection is HUGE. More details on that later.

Hemoglobin: 7.0. The target is 7.5 so we're getting there.

A question was asked about what's normal. Well the 'normal' WBC for a female according to some quick research is 12 - 16 for a female. I did see something that said 14, but I think that gives everyone a magnitude of how high the 77 was. It should also make it clear just how suceptible she will be at 0.

Other Updates

Mom slept better than she has since she got in as you can tell in this picture - definitely a good thing b/c she needs her rest. They did a CT on her chest as she's been weezing a little more. But there's no more coughing up of blood. They gave her some more red blood yesterday and this morning so I would expect the Hemoglobin to go up tomorrow.

She's doing very well, but is not happy about the visitor restrictions. Yesterday there were too many visitors. She now has her guest agenda and Walt is trying to finish the family agenda and manage it. This does unfortunately include visitors flying in. We'll figure out the time to get those coming into KC into see Mom. Of course Mom still wants control of it, but the nurses insisted on 3 close friends and family only. No sniffling noses allowed - not even allergies. They haven't said anything about 'Haz Mat' suits, but seems to be only a matter of time. The good news is Walt's setting up a web cam! Now we'll need a social coordinator for that.

Today brought more gifts and cards. They all make her smile even after they're sanitized with wipes. One particular item of note were the 'Captain Cathi' glasses from Sarah Reichling (Reinkemeyer)! See them being modeled below.

There was also a visit from the transplant coordinator with tons of information. Mom's still processing. Grandma and Walt were there, and received donor information to share (see below for a tidbit) along with a checkout sheet for going home. We'll be sanitizing the house in great detail to ensure it's as close to the hospital ward she's currently in.

Bone Marrow Transplant Advocacy

Mom needs a bone marrow transplant. This promises to not be the only communication advocating the system (did you really think in a family of approximately 50 this is the only time you'd hear it!), but it is the first promotion.

The process to become a donor is a very simple test kit that is four swabs to the mouth to collect. There is a cost of $80 to do this. If there is a positive match then actual blood work needs to be done. Being a donor is typically an outpatient, non-invasive procedure. No you do not even get to have breakfast in bed! What we really advocate is...

If a person wants to become a donor in the national registry then they can contact Marrow.org to find more information. For us as a family, we are not interested in those who only want to be tested to see if they match for Mom. As a family we are going through a little too much emotional excitement and can't imagine anyone being a donor and not offering it to those who are having the same stress we are. We are not alone in this and want to help others as well as our beloved Mom / Daughter / Sister / Friend. And if you are a minority, the testing is all free as they really need Minority bone marrow.

Regular Blood Donations

She's using lots of blood and blood platelets. So you can help by donating blood and blood platelets. Again, be sure the blood and platelets go into the public bank and not just for Mom. I know these are not major things that are guaranteed to have a direct impact on Cathi, but they are little things that can be done to help and you can know that someone out there is using it. Cathi is taking her fair share of blood and platelets, we can help replenish it.

Tues, 7.15

From what I understand today started a little low and trended up. We like trending up! Last night was a tough one with lots of hacking. Fortunately it's had great results.

WBC: 1600...yes - that's 75,400 down from just 4+ days ago. That's what we want while we also know that 0 will be a low point physically and mentally for Mom (not to mention making her even more suceptible to any kind of infection, illness).
RBC: 6800

So once Mom awoke for good today, they took her down to X-Ray to finally get this damn pick line resolved. They did have positive results so the day was already getting better.

Ganguly was extremely excited about the white blood cell count going down and the way Mom's lungs sounded through the stethoscope. What didn't make him happy were the purple K-State powercat knickers Mom had on. He put his hand on her leg and said, 'hmmm - these are not good to wear here.' That got almost as big of a laugh as when they went to weigh her. Her bed is set-up to weigh her, and it read 93 pounds... While we don't know what her weight will be as she goes though all this, I can assure you she's not 93 pounds! All in all, a short visit from Ganguly equals a positive one. We like those.

A scout friend, Brant Tidwell, came in today and remarked that he wasn't sure if there'd be room in 4102 for him. Apparently the entire book was filled with 4102 entries in the room column! Such a great problem to have. However the nurses did raise a flag on us. I guess that was bound to happen at some point. So the plan is this:

Contact Peggy Morgan via her home #: (913) 383-2335 before visiting. Peggy has graciously offered to help schedule the flow of visitors. I think we all recognize the need for her to rest up and conserve energy for the internal fight.

She received another phone call from a scout friend and Bone Marrow Transplant survivor who had one several years ago and has remianed very active. That was a great lift for her as we often joked that even with the anemia Mom at less than 100% was better than most of us at 100%. So to see someone who's survived the transplant and remained active was awesome.

Something I've been asked to communicate more of is how she looks and feels. Overall she looks pretty darn good and Robin (thus far she's been the weekday nurse and we REALLY like her - although all of them are great) has commented on her tremendous attitude. She looks just like the Mom / Cathi you'd see with a t-shirt and knickers around the house. Carla will be at the hospital soon to cut her hair shorter before shaving it later, making it more manageable when it begins to fall out. We're all very proud of her for the attitude she's maintained. Make no mistake, there are tough times. But that's what this blog and your comments are for!

One particular highlight today was Mom exercised on the stationary bike for a full mile. She told me about this, and I have to say it made me think of the Tour de France or something where she was the lead rider for her team and had coaching all around. Mom initially was going to ride for 5 minutes. Then Robin stopped by and said, 'why don't you just do 10 minutes.' Well once then 10 minutes was nearing, Peggy said, 'just finish the mile.' SHE DID. How great is that??? It reminded me of the following story that to me epitomizes Mom and I think you'll all get a kick out of it.

So a few weeks ago Mom went to scout camp and realized she was getting out of breathe walking from the car to the tent. In hindsight, that was likely a hint of the leukemia. However, what did Mom do??? She decided she was out of shape and needed to walk it more. That's the Mom / Cathi we all know and love!

There are also some pictures online for those interested of her trip to Colorado in early June. She did a zip line across the Arkansas River among other outdoor activities. Pictures can be viewed via the following link and data entry information:

http://whitewaterphotography.com/photos,listeventphotos.html&p=7
Date: 6/21/08, Time: 10 AM, Photos: 202854, 202857, 202933, 20310

Monday, 7.14 Wrap-up

To summarize today, it was 'pick day'. We continued to get the pick aligned properly, X-Ray to confirm, then Mom started getting platelets early this evening. Mom tried to walk down the hall with Sally before the pick line came out a bit. Every time that happens we have to get the dressing cleaned up (often times changing clothes too).

The highlight of the day may have come this morning from Dr. Ganguly. Walt got into a funny conversation in which the doctor talked about having a hike on a saddleback mountain in Washington (to be fair - we're assuming it wasn't a huge hike) with some colleagues. He said when he got to the top he realized he was the only one with a tie on. That pretty much summarizes Ganguly!

We also started bringing in some food from the outside today. We got the idea as there's a gentleman tending to a loved one down the hall who we have affectionately dubbed 'Mr. Food'. You literally never see the guy without McDonald's, Starbucks, or some other local eatery in toe. Apparently it's ok if we go get it from area restaurants and home. She got a Mr. Goodcents sub from Walt for lunch, and homemade beef soup from Grandma for dinner. The homemade soup was a real hit and I'm sure tasted even better coming from Grandma. That made the breakfast error of her omelette coming loaded with cheese a distant memory. Her neighbor to the south, Dayla, brought a basket of goodies for visitors. Unfortunately Mom's temporary crown came off while munching on some Tropical Mike and Ike's. So we're going to get in touch with the dentist to see about gluing this back down and ensuring we're safe from potential infection there.

She also talked to an AML survivor who had a donor network marrow transplant, which did a lot for her. It's one of those things where none of us have a 'roadmap' (thankfully the staff @ KU Med has seen all of this before and has been amazing). So when you hear there are people that have successfully gone through it, it's an amazing reminder of what we're working towards.

Afternoon visitors included: Terry Hudson, Sally Beal, Peggy Morgan, and Kurt Parrett. I also omitted earlier that Trish (sister), Walt, Grandma and Grandpa were all here. Kurt's going to be helping out with the business including some of the billing. Walt's staying tonight with her as the comfort Mark provided during the middle of the night pick line incident was very comforting.

One thing Mari started here at the house that everyone will appreciate as 'Mom' is a dog log. That's right. We now have a calendar to log when Hayward and Daisy get fed and walked. It's good stuff to ensure they're in good hands.

Tomorrow Annie and I will be heading back to Chicago, and I'll be back Friday while Mark will be back early next week. He left today. So I'm going to do my best to ensure this blog continues being updated b/c Mom sees comments like Janet and Robbie having a 'virtual cocktail' and loves to see it. You all know how much she values your relationship with her, and now more than ever it keeps her spirits high. They mean a ton.

Before I go, a brief note to Mom. Mom, we are all here for you to take care of things so you can focus. Continue as you have to take things not just one day at a time but one task at a time. By looking at the task immediately in front of you and knowing that the staff has the overall plan in-place, you will be giving your best every single day. That's all you can do.

WE ALL LOVE YOU.

Monday - Day 4

This is a midday update versus the later evening ones we've been posting. Figure this will help out with not having extraordinarily long ones.

The evening was an interesting one - not bad, but there was action. Mom's pick line came out in the night. While that's not completely unexpected (it was in her left arm), it's something you'd rather not have occur. It resulted in some blood on Mom and the bed a bit. Then they went to put it in the other arm and are having some difficulties with it - still trying to confirm it's 100% in correctly. Now we haven't asked yet, but there are plenty of possibilities (including a line into her chest) and nothing to be truly alarmed at yet.

On a more positive note, we now have more explanations for some of the hacking, sinus-like symptoms, and slight fever yesterday. As the white blood cells are killed, they float throughout the body. In many cases this results in the lungs acting as a filter which of course results in them churning through / landing in the lungs. So that's good. We'd much rather have explanations for all this versus the great unknown.

WBC update: 6K this morning
RBC update: 8K this morning

We also learned that there's a possibility for a combination of 4 siblings to form the matching marrow for her. That was good since we are unsure of a 100% match. It essentially means we're looking at a requirement of 25% per sib, and given that Ganguly thought there were only 3 sibs - good to know. We want more options! More to come as the transplant coordinator will be in touch shortly.

Last night Mark (son) stayed with her. Walt brought her some Starbucks and a paper this morning, and is off to buy some real lunch for her in the form of Mr. Goodcents. Sharlyne Narr was here this morning to visit as well. Annie and I are hanging out now, and brought some additional nickers up.

sunday - Starbucks & the Star

Hello,


This is Cathi reporting in. Conor spent the night with me and sister Mari showed up early with starbucks and the kc star. I enjoyed the starbucks, but haven't read a single word of the star. Too many more interesting things going on.

I'm beginning the feel the effects of the chemo, nausea. They gave me something for anti-nausea and that resulted in sleeping in the wheelchair down to x-ray. I'm sure I slobbered too. However I still have my hair so hopefully nobody will send me to the geriatric unit yet.

I feel better today. I've been pumped full of red blood cells and platelets. I got a little help sleeping last night which was much appreciated. and the white cell count is down to 21,000.

I have 2 doctors, Abhyankar. and Ganguly. Scouters, think about that name! I haven't sung it for him yet, but it could happen any minute.


Keep the messages coming, they remind me what's waiting for me when I get out.

Cathi

Conor Update

Day 3 is now complete. Well they are calling it Day +2 since it's technically 11 PM that we complete the 2nd day. It's just the 3rd day in the hospital. There's a dry erase board in the room with all the status-related information. Here's the update...

There was lab work twice today. The first time was during the night last night as that appears to be a regular measure. Dr. Ganguly came in to briefly examine (all was good) and give us the readout, which was also positive. For those interested, the white blood cell count was at 77 when she was admitted (extremely high). It was down to 21 this morning and 11 midday. This is good. The goal is to kill them all before the rest of the stay and then transplant.

Ganguly and company said this is the 'boring' time. Or that's what they want. I told Mom when they left it may have been the first time anything she's associated with was 'boring'. LOL. It was the first time I'd met either of the doctors, and she's in great hands. I will say this about Ganguly. The guy is wound tight. Definitely business. I went to shake his hand and he said, 'we don't shake hands here.' Annie saw him later in passing and said that looked to be his style - very regimented. We're talking high starch shirt to say the least. :)

We did ask questions regarding the bone marrow transplant this morning while he was there. As most know, Annie and I are expecting a boy in November. So we're especially cognizant of the topic of cord blood. Apparently this is not an option to use his (baby's) cord blood as they estimate it would be a 25% match. The priority for the transplant is: 100% sibling, 100% open network, then potentially cord blood / other. We'll know more when the hospital's transplant coordinator visits.

They're encouraging her to exercise / walk around as much as possible, and she did get out to walk the halls today with Carly. This was good as she attempted yoga but the pick line got slightly ajar as she was starting. That's always going to be something we have to watch.

The reason we had lab work the 2nd time today is Mom developed a very slight fever in the early afternoon. There was also some slight nausea, which got them to install a Benadryl drip with a clicker that only mom can initiate...and she's quick to remind us of that fact! It has helped her with keeping food down though.

Additionally, she had a CT scan and chest X-Ray as there was some fluid / slight build-up in her chest. There was a little fluid in her lungs from the X-Ray, but nothing they seem to be alarmed about at this writing.

Overall it's a patient process taking things one day at a time and understanding that every slight thing they notice will be treated as big. The night nurse last night, Lauren, said if she even had a slight cut they would be all over it. It's good to have that level of attention as anyone can understand.

I did save the best for last on the day though. The family was very positively recognized among the nurses today for many things (including just pure niceness and caring), but Annie put together a gift basket for them with lots of sweets and Life Savers. I told her we had to include plenty of those! But we wanted to let them know how much we appreciate them taking care of our Mom / Daughter / Sister / Friend. It's the least we could do, and great to see their reactions. I'm pretty sure we heard about 10 - 20 'Thank Yous' today. Now the one potential gap is we're going to have to restock for the night crew since most all of it was consumed by the day staff. :)

Alright, off to email the link to this blog as Mom got the initial distribution together. Please forward the link to anyone else that would like to see updates or know what's going on. And as Mom said - keep the comments coming!

And so it begins...Days 1 and 2

Background

Well what turned out as a relatively normal Friday for the Maynard (and Snell) families turned into something quite abnormal. July 11th, 2008 was the day that at 8 AM Mom (Cathi) was eating IHOP with Grandma and Grandpa Snell (Jane and Virgil), Walt Snell (brother), and Stan White. Stan just happened to be at the restaurant when everyone got there, but joined them for breakfast. By 10 AM, the call had come and the day would forever be changed.

Then Dr. Davidner called with the news. 'Cathi it's leukemia...I'm referring you to a colleague of mine at KU...he'll be calling you.' Mom actually had a bone marrow biopsy the day before after some random bruises began to appear and her feet were swelling a bit when she sat down. Now on this call there was no mention of the type or next steps...

First it was calling the family quickly before getting in touch with Peggy Morgan, who was the designated 'babysitter' for Mom that day. Peggy actually did her best hithchiking and got a ride home from a long run to be with Mom. Some of you got emails in this timeframe as she began digesting the news. Then the other shoe dropped...

The colleague (whom Mom thought she would be making an appointment to see the following day, week, etc) called. Dr. Abhyankar said, 'come to the hospital right now, to room 4102. Don't stop and register...come straight up to the room.' Needless to say at this point things were moving quickly.

Purpose

So I think that's enough background on the chaos of the last 36+ hours as I start this blog. It's been quite a ride - one that none of us will ever forget. The reason we wanted to start this blog though was for mom and / or other caretakers to write how she was doing, post pictures, etc. for all the wonderful family and friends who have been emailing kind (and funny - she really digs funny) notes and anyone else that may wonder about her status.

She LOVES getting the notes so please post your comments on here as often as possible. She'll need them for the continued encouragement as we move forward. It's simply become too overwhelming to reply to them all as much as she wants to. I honestly know it's because she has THAT MANY people who truly care about her. We all owe her something I suppose, and it seems so easy to give thoughts, prayers, encouragement, and funny notes as she really begins this battle with the biggest, baddest blood disorder of them all. Oh she's trained with some of the other things like anemia, etc. But Acute Myeloid Leukemia (AML) is the big leagues.

So onto the updates:

Day 1

I hit on most of it, but she got to the hospital, learned it was AML, got a review of current status, an overview on the treatment approach, and started chemotherapy about 11 PM - chemotherapy that's to extend for 28 days. For those wondering, we're expecting bandanas to arrive in the 3rd week. Then it's onto 'house arrest' as Mom calls it where she'll need a daily babysitter again while awaiting a bone marrow transplant.

They allowed a virtual 'party' as Mom said in her room until the chemo started. Now it's 2 @ a time. The room's in a section of KU Med that houses sanitary rooms. For those that do not know nor have seen one firsthand, there are vapor lock doors to enter with a sanitizing station in between. One set does not open until the other's closed. And it requires a phone call to get the 2nd set open. My only gripe with it is there are zero bathrooms for visitors on this side of the doors!

Oh - this is probably the best time to let everyone know she CANNOT HAVE FLOWERS. Thanks for those that have already sent them...they're decorating the lobby very nicely right now. We did capture pictures of them to show her and brought the cards inside. Balloons are most common gift people receive in this unit although things that are pre-packaged are acceptable too. Or feel free to send a simple card to:

The University of Kansas Medical Center
3901 Rainbow Blvd
Room 4102 c/o Cathi Maynard
Kansas City, KS 66160

She was awake until about 1 AM...quite a day that flew by much faster than anyone could imagine. Janice Schlicting (sister) stayed with her that night, but almost all of her siblings, several close friends, and Mark, Annie, and me all were in at some point. The challenge with sleeping on Day 1 was they needed to check vital signs every 30 minutes b/c she was receiving red blood cells due to an extremely low count.

Day 2 (today)

The other doctor, Dr. Ganguly, started on Day 2 and will be with us through the balance of the first to weeks. We found out today that there's a chance she'll be here for 35 days now instead of 28. This adding 7 days at a time thing feels very similar to a Chiefs game!

Chemo continues, and Mom's definitely tired. She saw a lot of additional family and friends today before really tuckering out. She requested an ambien tonight to ensure she sleeps through as there will be no 30-minute check routine again.

Today we also dressed up the room a bit. The Elvis clock is on the wall, there's an Elvis 'bobble body' doll that moves at the waist, digital picture frame, yoga mat, and a motivational poem she has entitled 'That Woman is a Success'. Mark also brought her a mini, stuffed Hayward. These have all really gone a long way to making her comfortable. Grandma and Mari (sister) also went to purchase some additional 'knickers' (pajama pants to most of us )

And with that...I'm going to bed. More later!