Round II

Kathie starts Monday with her new chemo, FOLFOX. She had an appointment this last Monday with Gil (one of the docs at DiMartino's office) and they decided they couldn't start this past week as she was not releasing solids yet.

Bob and Kathie decided to do Mondays instead of Tuesday (like the last round) because they're expecting her to follow the same trend of pooping out 4 days later, so this way she'll still be able to enjoy or do something with people on the weekend.

I'm off to NY for the week, so it may be awhile until there's an update, unless I miraculously have internet and time (or if someone convinces Eddie;) )

Posted by Lauren

Back to the real world

Well, we all went back to our separate corners on Tuesday - well kind of. Monday was Magical Kingdom fun, all the way to the park closing. Lauren realized that the rides change a bit in 11 years (they aren't quite so adventurous;) ) Eddie, Melissa and their kids hit just about every ride I think, while Lynette and her girls hit the tamer ones (including the torturous "It's a Small World"), a splash area, and the most important thing they did was twirl with Cinderella! Bob rode a few rides with the girls, and Kathie went on Dumbo, It's a Small World, and Splash Mountain (she ducked and somehow missed the majority of the water that soaked Bob, Christen and Lauren for the rest of the day). Kathie was doing great!

Tuesday was breakfast with the characters (Mickey, Minnie, Pluto, Goofy and Donald Duck). The kids had a ball, and Lynette, Chris and Lauren got their picture with Pluto (or maybe it was Goofy?) and the whole famiy had a photo op with Mickey. After breakfast: Eddie and Melissa took Lauren to the airport and then their family continued the drive back to NC. Christen went to the airport with Bob and Kathie and they also had Sophie and Kaitlyn as Lynette hops from one coast to the next (she has a wedding to attend) and Lynette returned to KC with just herself. We loved getting the question "Where are you folks from?" - they weren't prepared for our range:)

All in all it was a great family trip and everyone is back safe and sound. Christen and Kathie have already gotten to work preparing a garage sale they are putting on Friday and Saturday. Aunt Christen is in for a good time in a few days, as she'll fly back to KC with the twins by herself!

DuCharmes, We run for fun

Disney. Phew, who knew having fun was this much work? :) We all (Bob, Kathie, Eddie, Melissa, Alec, Emily, Lynette, Kaitlyn, Sophie, Christen, and Lauren) arrived safely in Orlando. Kathie is doing much better (less bathroom trips!) but we've been wheeling her around to stay on the safe side and keep up her energy. Lauren was the first to arrive, but followed shortly by Christen, Bob and Kathie who flew in from Houston. They all checked in - Christen's room (which she is sharing with Lynette and the girls) was fine, but Kathie, Bob and Lauren's had a little smell to it - which there was no way Kathie was going to be able to deal with, so they had to swap rooms - meaning they were no longer so close to Christen's room. It has all worked out though. The rooms aren't too spread out.

(Tired family - taking a break, Eddie's family is in line to get a picture with Stitch, I believe)

The first evening was relaxed - we all ate dinner together, but it was pretty low key after that. Day two, however... well, look at the title. We were move, move, move on Saturday. We certainly got to see a lot though, and the kids seemed to enjoy themselves - but it was ridiculously humid and hot. Lauren was even in what of the mini-performances - she was the screaming like a lunatic character;)

Day three was a break day. We all went to Downtown Disney, though we weren't all together for too long - it's tough when there's a princess shop and a legos store. The adults all enjoyed the first non-pizza meal we'd had in awhile and then there was a parting of the sea. Those that got out of dodge right after lunch were wise - it broke out into quite a storm. Lynette had headed back with the girls and Bob and Kathie while everyone else had stayed at DD. Eddie and Melissa and their kids left shortly after, managed to take the ferry part of the way back, but when the storm broke loose, had to walk back from the neighboring hotel. Lauren and Christen got a pretty nice brunt of it, because they were stuck trying to get out of DD during the downpour, ended up on a bus which was unfortunately making the rounds to one of the water parks before going to the hotel. A 16 minute ride to DD from the hotel via ferry was a 30 minute bus ride back. Those who had made it back to the hotel enjoyed a little bit of pool time.

Tomorrow is another day of running for fun (aka - we're in a hurry to do everything;) ) at Magic Kingdom. Thank goodness for Melissa - she's figured out almost everything for this trip! But the whole family has to keep thanking The Bank of Bob:) ... We call him Dad.

Kathie has been doing a good job of just enjoying herself and she really is doing much better this week. She doesn't need the wheelchair except to keep longer lasting energy. It also hasn't hurt in getting great seats for some of the events;) But the worst at others - so it evens out.

Posted by Lauren

CEA is like the CIA - sneaky

Well, the exciting news we were going to share with everyone is that Kathie's CEA level went from 250 to 25 - we thought, "ooh, miracle - the liver is going to be free and clear," but we were mistaken....

Apparently, the CEA can be a flaky indicator of how things are going. Sometimes it's awesome, other times it's a double agent, getting your hopes up.

So here's the real news, and I couldn't think of any ways to make this funny:

The chemo has done nothing. The larger tumors have simply gotten larger and some new small ones have appeared. To top it off, as my friend Kristen said, our whole family has to be unique - the doctors believe Kathie falls into a group of only 10% that doesn't metabolize camposar - an ingredient in the FOLFIRI cocktail, which would explain her severe diarrhea. Kathie has to be off chemo for at least 2 weeks (or until the FOLFIRI is pretty much out of her system) before they will begin FOLFOX (we will be continuing with the Avastin alongside of that). It will be around January if we know if that one is working.

God of course gave a silver lining - and that is that somehow and for some reason they had this appointment at MD Anderson. As you may all recall, she's only been getting chemo for about a month, so they typically wouldn't have seen her yet - thank God they did, we have lost very little ground in the scheme of things.

Everyone flys into Orlando tomorrow. Lauren told Kathie that if she isn't feeling well, they can lay beach towels out on the hotel beds and have pretend fun:) Either way, it will be wonderful to have the whole family together.

Posted by Lauren

Looking good!

Yesterday was low-key, as it was a day off from doctors. Kathie is still a little liquidy, but was informed that she would have to go to the emergency room to get liquids if it got bad again - call me crazy, but if you are in a hospital to have a bunch of tests run, it seems they would be able to attach you with a bag of liquids if need be? For right now, she's okay, but if she starts to run a fever, it's back to the long waiting room of the ER. The genius who created that system should probably retire and admit that they are dumb.

Anyway, as mentioned, she's still trudging forward right now. The break from doctor visits yesterday allowed Christen and Kathie to enjoy a little make-over in lobby of the hotel. The Rotary House has lots of events for the patients and their families - but we usually don't have time to attend any of them, so it was neat that Christen and Kathie were able to yesterday. Men don't understand, but a good coat of make-up can make a woman feel like a new person - and I think it definitely perked Kathie up for a bit since she's been feeling a little sickly for over a week.

Today it is back with doctors. They will go over the blood tests and the CT scan from Monday.

Posted by Lauren

Back to MD Anderson

Kathie and Bob flew to Houston on Monday. Kathie was feeling a bit better on the flight but got sick shortly after landing. Christen also arrived from Hawaii safely.

Today was a day of tests. Kathie started with a blood test and we are waiting to confirm some results, but they may be amazing - but until it gets confirmed, that's all you get. Kathie was also thrilled to get an endoscope done today - all clear. She took a little nap (as did Christen) before returning this evening for her CT scan. She's still not eating much, but Irene's carrot cake convinced her to try;) Lauren chastised her jokingly for about two seconds for eating so heathily - but Kathie really needs the calories, so whatever works at this point.

Kathie proclaimed victory as she only had to drink one cup of stuff for her scan (as opposed to the three she choked down... and later threw up... last time). She also had them push the iodine through a needle put in earlier that day (her veins are not exactly amazing right now - so they figured it would be good to leave one in just in case) - not only is it unusual for them to do that, but it was also a much smaller needle than they usually use. Being sassy, as she is, she will now protest any treatment contrary to what they let her get away in her sick state today - boy will they regret bending the standards;)

Bob and Kathie did a happy poop dance today when she had a nice firm bowel movement - yep, that's how our family rolls these days. Unfortunately, it was a fluke and she's still not 100% solid yet. Sorry, I'm running out of creative ways to talk about all of this shit... (oh, I'm cracking myself up!) Either way, hopefully she's feeling better soon.

Kathie's spirits were dampened a bit when she heard some not so great news about one of her fellow chemo warriors - her family is in our prayers and we are praying that the next attempt works better for them.

It turns out that when the going gets tough, the tough go to Disney... "I'm going to Disney World!" is not just for olympic champions and lottery winners anymore. The cancer patients are taking it over! Why do already happy people need to go the happiest place on earth? - that's just greedy;)

Posted by Lauren

Jail Break 2

Kathie was released from the hospital today. All of her counts are going up in the right direction, and her neutrophil count is sky high. She is still a little gassy - have to keep the romance alive somehow, you know? She's less weak today and looks like in general approving. Bob and her are just going to veg at Eddie and Melissa's today and then they are off to Houston tomorrow. Christen is meeting them there.

Kathie did leave with a little warning from the oncologist that diarrhea can be more than a good song lyric... it can be dangerous for cancer patients if it gets too bad. On that note, she's going to have to pay serious attention to the length of time it goes on, as the dehydration risk and nutrient loss is very real.

Posted by Lauren

Slow and steady

Sorry everyone has been left hanging. As you may have expected, we've all had our hands a little full with this situation. Kathie is slowly but surely starting to feel better. Her hemoglobin count improved after a transfusion and her white blood cell count is also steadily increasing with help from a lovely drug called neupogen- it's not quite as rockin' as last time she was in the hospital for low count, but she's reaching normal human averages around 4,000. Her fever is also reaching normal levels (probably not quite Kathie's normal level as she is cold like Lauren with a 97.6 rather than 98.6 average). All of her tests came back negative, so the antibiotics were stopped yesterday. Her appetite is still not up to par, but Bob is boiling it down to the crappy food at the hospital - we now remember why there are jokes about bad hospital food... Kathie had been relatively lucky in Lafayette and at MD Anderson with food - but NC is not impressing us quite yet in the way of food.

Hmmm... you are now wondering, "How does Bob know about the food?" Well, seeing as Kathie is supposed to be flying to Houston on Monday and the fact that she still feels like poo (oh, the puns will never cease to be amusing), everyone decided that it would be better if someone flew to Houston with her. For a little while, this looked as though Eddie might get the gig, but he had a family vacation already scheduled with some of their friends and no one thought it was fair to push him out of that. With a little help from MD Anderson's travel service (have we mentioned lately how good they are to us overall?) Bob got Kathie and his Indy to Houston Hobby tickets exchanged for Raleigh to Houston Hobby ones for no fee:) Lauren drove home on Saturday to protect Kathie from Bob's sense of style and packed a bag for her extended trip. She dropped Bob off at the airport on the way back to BSU. The poor guy did not look too excited about the two rolling suitcases and his briefcase and backpack - we're talking about a man who takes only the bare essentials typically;) Kathie is going to have about a season's worth of clothing to choose from, as with a little investigation by Melissa into what she had brought to NC for her [originally] 3 day trip could last a normal person a good week.

Things we have learned from this experience:
1. Kathie is stubborn (oh wait, we already knew that)
2. Everyone who is housing Kathie needs to have a list of her meds, chemo info, and port info (we are now sending her around with a travel sheet of said info)
3. There are good doctors all around the country - Kathie is thoroughly enjoying the oncologist who has been checking up on her there
4. Hospital food is still bad in many places
5. 3 trips in a month with chemo in-between, not such a hot idea.
6. No matter how busy your life is, time seems to appear when it needs to (Bob's change of plans for the weekend, Eddie and Melissa's time while trying to get to Florida, Lauren's trip to Lafayette for 4 hours (plus 4 hours round-trip) )
7. Eddie and Melissa could have their own emergency response team - they handled the situation like rock stars (well, that's probably not a good comparisons as rock stars would probably need to be the ones in the hospital?) ... um, like an awesome EMS team!
8. Those little safety bars in showers? GOOD IDEA!

We still need prayers for Kathie, as the diarrhea is still an issue and she still feels a little weak. Hopefully we will get good news from MD Anderson this week - though it is early in the game as far as her treatment goes. We all want Kathie to feel better for her family dream trip to Disney, as it is by her request that we're all going (not that anyone is complaining too loudly;) ) Prayers for the rest of us would be greatly appreciated too...

Posted by Lauren

No flight home yet

Well, the flight home last night was definitely canceled. When Kathie woke up (from getting in at 3 AM from the ER the night before), it was already 1:00 in the afternoon. The diarrhea had not stopped and she now had a fever. So, we decided to head back to the ER. But, Kathie decided to make it a little more exciting than that. She hopped in the shower for a quick soaping, and instead, ended up getting dizzy and falling in the tub. No injuries were sustained in the fall, thank goodness. But, because of the fact that she had obviously gotten worse rather quickly, we decided to call the ambulance to take her in.
After a few hours in the ER (blood tests, EKG, urine sample, etc), they decided to admit her in to the hospital. They started some general antiobiotics at that point as the fever was not going down, and the white count had dropped even further (1.3). The red count appeared to be "OK" as it had not moved from the night before really. After finally getting to a private room a few hours later, we started trying to get her on the mend. Kathie spent the night in the hospital trying to recover from neutropenia (low white count). She had a pretty high fever for much of the evening (up to 103 at times). Tylenol did not seem to knock it down too far. And, each BM was still only water, but they were much less frequent after finding a drug called Lomotil.
We also begged the local oncologist for a neupogen shot (tries to kick start the bone marrow in to making more white cells). The antibiotics continued and was alternated with general fluids.

The next morning (Friday), Eddie arrived bright and early, ready to talk to the doctors to see how things were going. Unfortunately, not much happened until 11:30. Our internist came in to tell us that the white counts were getting slightly better, but that the red count had dropped to 8. (Below 8 is the point that requires a transfusion). We asked for a red cell booster shot, but we were told that the oncologist would make that decision. Finally, at 4:15, the oncologist came in. He actually recommended a transfusion over the shot for the red cells. So, we will soon have a blood transfusion done (one bag tonight and one tomorrow). In theory, this should kick start the hemoglobin counts, and should give Kathie a lot more energy. The oncologist also agreed to another neupogen shot as well, which was our hope. He is also starting something called Sandostatin and Questran to try to "firm up" Kathie's trip to bathroom. (OK, not as funny as Lauren, but thought I would give it a try anyway). So, those things should all happen soon/tonight.

Kathie is still quite weak. Her fever is down to about 100, which is good, but still not home free. She is definitely getting up to go to the bathroom easier than before with no dizziness, too - another good sign. But, her abdomen has some soreness to it - especially when she stands. The doctors say it is just b/c it is irritated so much after so much diarrhea. She is trying to choke down some canned pears - another good sign as she really has not eaten anything except 2 cubes of jello since 6 pm on Wed...

I asked her if there was anything "juicy" to tell you, but she just smirked... she loves having her personal habits posted on the internet...

If you have a moment, some prayers wouldn't hurt. She needs to get better soon or things get a bit interesting. She is supposed to be back to Lafayette to pack for a trip to MD Anderson on Monday. We are hoping to get some good news that the chemo is working during that visit. Directly from there, she goes to Disney World with the whole family for a few days. We are hoping she can get well enough to make the trips - soon.

Posted by Ed

The shower scene

Kathie found a way to make the shower scene not so sexy today. Eddie will fill in the holes after he's had some sleep since he's the first hand knowledge... but the short version just so you have some info:

Kathie woke up with a fever, got dizzy and fell in the shower (did not go unconscious).... went to hospital in ambulance.... lots more tests, lower white blood cell count, but slightly higher red blood cell count... admitted to the hospital, staying overnight, getting a white blood cell booster - Eddie is staying with her. Fever was around 103 last time I talked to Eddie... and Kathie was receiving antibiotics (just in case - they still aren't sure if it's just low white blood cells causing fever, or if she has an infection of some kind).


Posted by Lauren

All is "well"

Kathie and Melissa did not leave the hospital until after 2 AM yesterday. Nothing too serious, but definitely some dropped numbers for Kathie. First off, the x-ray just showed irritation - just as you'd expect from someone suffering from diarrhea most of the evening. There was no obstruction shown. Her white blood cell count has dropped, which was unexpected as she received a Neulasta shot last week to boost it. Her red blood cell count dropped as well - only .3 from having to get a transfusion. Unfortunately, she could not get new boost shots for either of these issues without being admitted which was not on the top of anyone's priority list at 1 AM, so they put a call into the on-call doctor at Dr. DiMartino's office. They said to come in on Friday (Kathie is flying home today) and to go back to the hospital if she had a fever or more pain. Neither the ER doctor, or the doctor at DiMartino's office felt the boosts were necessary immediately. Kathie and Melissa will probably call Dr. D's office themselves today to double check that response.

The best part of the story from yesterday: Kathie wasn't exactly having anyone rush to attend to her at the ER, so she took off her wig figuring if she looked a little more sickly that would help. A+ for tact mom:) Unfortunately, Melissa and Kathie still enjoyed an 8 hour adventure yesterday.

Kathie did leave the hospital having received fluids. She will fly home today with her mask on (and she wore it around the hospital yesterday - where better to pick up something nasty than in an ER?) and we'll all hope that she isn't stuck next to the kid blowing snot into his hand or the adult that never learned to cover his mouth when coughing. The stool sample results will not come in for 2-3 days, so Dr. DiMartino can request the results from there. The will indicated whether or not there is bacteria present.

Thanks for the thoughts and prayers - just another day in the ups and downs of reactions to chemo and cancer!

Posted by Lauren

Exploring NC doctors

Unfortunately, it has not been a slow week. Kathie was feeling tired to some extent most of the week following chemo. Wednesday, Saturday,Sunday and Monday were particularly tiring (though it probably did not help that she was helping Bob, Lauren and Ben pack up and move some of the things out of the lake house in Indiana over the weekend). Tuesday, Kathie went out to NC by herself to go check on the house's progress and to visit Eddie, Melissa and the kids.

Today was doom day. *WARNING - bathroom talk coming up... get into mature adult mode before continuing* Though Kathie's bowels have been pretty normal for having a huge chunk of her intestines taken out and then stapled back together, today was a little loose (nice euphamism if I do say so myself). This in itself would not be an issue if it wasn't the whole day and with great frequency. According to my sources, about a half hour after Kathie had something to drink her stomach would start to gurgle. She had approximately 9 Ammodiums with no end in sight and everyone started to get a little concerned about the hydration issue - so into urgent care she went with Melissa. They decided that blood needed to be drawn, and so she got bumped to the hospital instead, so that blood could be drawn from her port (it has not been confirmed whether this was Kathie's request, or their suggestion). Many theories have been thrown into the air as to what is causing her issues, but until the blood tests, x-ray, stool sample tests and possibly (but hopefully not) CT scan come through. I believe liquids are being pumped, but they want to know what is going on, as it could be something serious, or could be as "small" as a reaction to her red blood cell shot last week.

As it stands now, that's pretty much all the info (2nd hand), and Melissa and Kathie are still at the hospital. Hopefully news will come through soon, in the mean time, prayers that it isn't something serious like a perforation wouldn't hurt.

Posted by Lauren