Monday, February 22, 2010

Google Shout Out

Can I just say how much I love the search function on Gmail? It has saved my rear many a time, today finding a login password that I couldn't for the life of me remember! Well played Google.

Saturday, February 20, 2010

The Count Rollercoaster

Numbers are not really my thing. I don't remember them easily and so I find them difficult to look at by themselves. Thus, when we started getting counts every day for mom I decided to take it upon myself to make graphs. Personally, I just find graphs easier to look at than a list of numbers. It seems as though the doctors pay attention to thresholds much more than they do trends, but to me trends are easier to watch. So, each day we would add the new numbers into the little spreadsheet we made and see the graph change. I know, I'm a dork - whatever, it's interesting to me :) So, we have graphs of white blood cells, packed cells (i.e. red blood cells), platelets, neutrophils (i.e. baby whites), creatanine and Urea/Nitrogen (both a test for kidney health). The packed cells and platelets go up and down as mom gets blood, and now that they are giving her fluids every day the kidney tests are not looking as high. The whites and neutrophils are the ones we've been watching to see if Brandy's stem cells are grafting into mom's b. So here is what it looks like from the day prior to the transplant until today:

A few things to note -
1) normal whites are at 4500 - 11,000, so even the high points on this graph are pretty low
2) you see why we have to be crazy about her not coming in contact with anything that could give her an infection!? check out those days 9-13...it was so low the tests just came back as <50.
3) those peaks as it was going down I find interesting, don't know what it means, just interesting
4) the whites are supposed to start increasing between day 14 and 21...which it did
5) the white are NOT supposed to come back down...which it did

Her counts not making huge jumps after it started increasing, and then coming back down means that Brandy's stem cells have definitely not grafted...yet. It doesn't mean they won't, we just know they haven't yet. So, that's where we are. I could be concerned, and I was for a bit. Until I realized that my hope is not resting in medicine. I'm not expecting the bone marrow transplant to heal my mom. God may USE the transplant, but my hope is in him, not what he uses to do it. And then this morning I read: Now, this hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us. (Romans 5:5) If I put my hope in the outcome of the transplant I could be disappointed, but if I put my hope in God I will not be. And so we continue to ride the rollercoaster of blood counts...we shall see if we go back up or keep going down. I will try to keep my emotions from going up and down with them.

Wednesday, February 17, 2010

Note to NBC

Dear NBC,
If you are not going to show all the Olympic sports during the hours we poor suckers without cable can watch, then please provide them on the internet for viewing. And if you are going to provide them on the internet for viewing, then actually provide them, don't make someone search through all their past bills to find their account number, then when the can't find one because they are trying to cut down on paper and get e-bills, make them sit on hold for 20 minutes trying to get the account number from a person, then when they finally get to the person find out the account is in their husband's name and need his SSN, then when they get the SSN try to log in and your site isn't letting her log in, so while she waits to log into the live streaming she tries your old videos and the site's viewer isn't working making a generally well adjusted, computer proficient adult get to the point wanting to throw her computer across the room because every time she works out one problem, there is a new one. The Winter Olympics happen once every 4 years, so please get it right during those 2 weeks.
Thanks,
me

Saturday, February 13, 2010

One Last Hurrah

Well, as one last hurrah with the loads of snow before I climb in the car I tried out my dad's snowshoes. Pretty sweet! I HIGHLY recommend it!

My dad has Kaylinn out for a final ball playing and then back to Charleston I go...somehow I think you don't need snowshoes to walk around in the snow that did fall down there :)

Friday, February 12, 2010

Back to the Business at Hand

The daily commute started up again today. Shot has been given and blood results are actually already done, but we are waiting on blood chemistry and a visit from the nurse practitioner. The one thing that is different is it's my last day doing this - I head home tomorrow. For some reason after I dropped my mom off and parked the car I started crying. I can't figure out exactly why. It could be my brain giving up even the vestiges of being in control since I won't be able to help with anything from this point on. Or it could be having not been down here for two days and my emotions getting back into the groove of suppressing the seriousness of it all (somehow it's different at the hospital than at home). Or it could be that I'm leaving tomorrow and I get a little over-emotional when I leave home, or leave my parents, or leave my sister, or leave a crazy situation, or leave what has become normal life for what is actually normal life that doesn't feel normal anymore - and I'm leaving all of those, so that might add up. Or it could just be that I'm tired - taking care of my mom, the house, Nicole, my dad, attempting to keep track of work, and home and church, and getting ready to go back to it all, is starting to wear on me. And there is a lot more shoveling involved in care-taking post bone marrow transplant than one might initially imaging :) I don't feel like it's any one of those, but who knows these days, perhaps it's all of them.

My mom's hair started falling out last night. For some reason she is not just cutting it all off. I, personally, would hate having handfuls of hair everytime I rubbed my hand over my head. But, it's not my hair, so I've got no say in the matter. Some of my emotion may be wrapped up in that getting to her (you can tell when things get to my mom, she tends to get quiet). And the fact that not much has gotten to her makes something getting to her all the worse. Other than a few days when she felt sick she has been pretty normal. In fact last week after the first major snowstorm when she and my dad stayed in Baltimore, she walked to the hospital. Yes, walked. It was just over a mile, but still she had absurdly low counts and just put on some boots and headed out. The next day when she was giving a run down of how she felt to the nurse, she said 'well you know I had to walk the other day', and the nurse said (and I quote) 'yes, I know, everyone was talking about you'. Apparently, when some of the nurses said they couldn't get to work, they were told a patient had walked in, so they could certainly get there. :)

Considering she is barely following any of our rules anymore, it's not that surprising. Here is what the 'isolation room' looked like the other night during the snow...

Not so isolated, eh? She has followed the no public areas rule, and hasn't tried to talk us into going out to eat. And she's followed the food rules, although we have to keep reminding her of a few of them. She has started forcing us to let her help us cook. However, seeing as how her platelets are pathetically low she is not allowed to do anything involving a sharp object (which she does listen to). But, that's my mom, I didn't expect too much different.

So, right now she is listening to my iPod trying to drown out the overly sweet nurse next to us who is being very nice in talking to this boy while he is waiting on an IV drip, but she hasn't stopped talking in a good 20 minutes, which is getting a bit annoying. And I am about to run down to the cafeteria to get some chocolate - when all else fails, chocolate does fix minor emotional issues :) My poor arms are so sore from shoveling yesterday that typing is even getting tiring. We went up to my grandparents house and shoveled off their driveway and roof. Here is my dad with his newest contraption made in our basement...

It worked quite well, and while one worked on the roof the other worked on the driveway, then we switched. I had some issues standing on a ladder with boots that were too big for me (I had to wear an old pair of my dad's because I don't have any), pulling a huge shovel contraption. The good thing was if I fell it would have just been on snow, so that worked out well. In the end the driveway was clear, the roof wasn't overloaded with snow, and we headed home for some dinner.While we were gone Brandy and my mom started the newest scrapbook project which will be baby and kid pictures of me, Brandy, Matt and Nicole for my parents. The pics were hysterical, and looking through them is always entertaining. We finished up this morning, and this evening while we watch the Opening Ceremonies we may start looking at page layouts. In two weeks Brandy and I will be spending a whole weekend cropping, so we will not DEFINITELY not be lacking in pictures!



Well, I'll see you on the flip side - after another 10 hour drive back home...where supposedly it's calling for snow tonight! Yes, in Charleston. It's insane. What is with me a snow wherever I go? God was NOT joking about answering my wishes for snow :)

Thursday, February 11, 2010

Snowed In

utterli-image
this is what happens when the snow blowers don't assist my dad in the dig out process. Looking like while we can sit in our cars now we can't actually go anywhere.

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Wednesday, February 10, 2010

A Dog's Snowy Wonderland

It's snowing again! A lot. I figured I would share some pictures for all of those who can't look out the window and see it.


The dogs are hysterical. They split their time between making trails, and running in the trails they made.

They also spend a lot of time trying to scare off the birds. The birds have figured out they can't get to them, but I will say the longer it snow the closer they get to being able to jump over the fence.

My dad took them outside the gate and helped them blaze a trail to the bird feeders. They felt much better being able to chase them away.

Here is Kaylinn's trail to the top of the picnic table.

They also like to stand on the porch and contemplate jumping down. At this point the snow is right below the porch, so they could, but they would sink down a good 6 feet after the fact...somehow they sense this.
Of course, not all the dogs feel the snow is that exciting. Tootsie and Belle are sitting on the bed with mom (notice we lost the isolation battle with mom)

Kaylinn is not one of those dogs, she is LOVING the snow!

Problem is the aftermath...I mean, honestly, look at this! She is a walking ball of snow.

Still snowing...

Tuesday, February 9, 2010

Snow Thoughts

Well the snow is falling...again. They are calling for another 10-20 inches - I know insanity! The great thing is the doctors let us take home the shots my mom needs everyday so we don't need to attempt the drive to Baltimore tomorrow. And so tomorrow will be the first day in over 3 weeks that my mom will not have to be driven to Hopkins!

Not much else happened today. Brandy took the driving duty and I took the house duty. The biggest excitement was tromping through the snow to the bird feeders - actually kinda fun. During devotions this morning these verses especially struck me, so I figured I'd share them. The interesting thing is part of the verses are the same ones that spoke to me when I was writing the 'Warning: Real Life Ahead' post. Today they meant something totally different to me. Living word in action, people!

If God is for us who can be against us? He who did not spare His own Son, but delivered Him up for us all, how shall He not with Him also freely give us all things? Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? No, in all things we are more than conquerors through Him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation will be able to separate us from the love of God that is in Christ Jesus our Lord. - Romans 8: 31-32, 35, 37-39

How can't you feel invincible after that?! Nothing can separate me from the love of God, my family is happy and healthy (relatively speaking :) ), Sandor's birthday surprise was a success, beautiful snow is falling, LOST is less than an hour away, and I'm about to make chocolate banana milkshakes all around. Happy snow day Mid-Atlantic!

Monday, February 8, 2010

Sunday, February 7, 2010

The Big Snow

So...I got my snow...and then some! Around Christmas time I was feeling very left out with being the only person in my family not seeing a snow storm. When I headed home I figured I may be able to get some snow, but, I never figured I would see quite this much.


Yes, that is a trampoline frame. And it was still snowing at this point! The news called for 20-30 inches and it did not disappoint. You see that band of really dark blue...that is where I am.

Needless to say the dogs were not quite as tall as was necessary to comfortably deal with the snow. Instead they did this hilarious dolphin-like action leaping through the mounds of snow. It was hysterical to watch.

Check out what Kaylinn looked like every time she came in - her long furry hair and the snow were a disastrous combination. We tried rubbing (it just made bigger ice balls) and even a hair dryer, to no avail. Eventually the poor thing just had to sit there and lick them off.

Beyond flat out entertainment factor, it led to very sleepy pups, who spent their time split between napping and barking at the birds on and below the bird feeders. Apparently they were very offended that the birds could stand on top of the snow. Personally I think the birds should have been offended that the dogs were barking at them after sitting by a warm fire.


Unfortunately there was a part that I had forgotten about snow...or perhaps blocked from memory. Shoveling out AFTER a ginormous snow storm. My mom and dad had stayed in Baltimore since my mom has to get to the hospital every day (the ended up walking to the hospital on Saturday). Without my dad around for shoveling support we were on our own. We followed directions and shovelled off the porch often. Here is me shoveling at partial snow point (we did this about 5 or 6 times so I don't know when in the snow fall it was).


The real problem came in when we had to tackle the front of the house. If it was us to us I would have been fine to stay snowed in, but alas, you must get back to life. This was the view out the front door near the end of the snow...

And this is what it looked like around 1:00 today. Now granted we had nothing to do with the roads, purely the cars, but that is a LOT of snow movement!

Brandy headed out to start the project while I finished up cleaning the kitchen.

She eventually figured out it made you feel like you had accomplished a lot more if you could get to the point where you could actually pull one of the cars out. You then had to shovel to the other car, then pull that out, then pull the first in, shovel the rest of the area, then pull the second one in. After getting those two done we were toast and ended up leaving my parents other car as was...yes, I know we are horrible children. Might I add that when my dad got home he didn't seem to have nearly the issues with the shoveling that we did. Apparently practice does make perfect. His shovelling was far superior to our initial attempts.

So now that we are technically able to reach the outside world I probably have to stop watching TLC and the Food Network for 18 of the 24 hours in a day :)

Thursday, February 4, 2010

The Marines


After Brandy's 16 hour experience, and then my mom's two 12 hour chemo days, we started joking that we were the Marines - first ones in, last ones out. Today we were not the first to arrive as we have been many other days, but we are shaping up to possibly be the last to leave. Today we've been here for the daily bloodwork, plus anti-rejection IV drip, plus a shot of growth stimulating hormones to help the Brandy's stem cells do their thing. That all is about a 5-6 hour process...and we get to do this every day...yeah. Welcome to my mom's life for the next 30 days minimum....possibly more. The good thing is the further along we go the less time you have to spend at the hospital each day, so we can officially hand off our Marine's status :)

Monday, February 1, 2010

A Trip to the ER

Well, tonight has not been so great. We are presently sitting in the ER waiting for my mom to get an IV drip of antibiotics. This happens to be my first trip to an ER (well the first trip I can remember - apparently I was in an ER when I was in 2 - my mom just informed me of this on the way here). So, a run-down of what is happening...

Post transplant my mom gets two days of hard chemo to kill off some of Brandy's cells that could attack Brandy's bone marrow and in essence make it commit suicide. Problem being it's not just any chemo - it's 12 hours of chemo...not fun. And it's coming after a pretty rough week to begin with. Up to this point my mom has every once and a while been sick in her stomach, but nothing major, until tonight. Around lunch today she started feeling sick, by 4:00 she was feeling a bit better and kept some stuff down, but when we tried to get her to eat something at dinner she was having none of it...and my mom can get a little feisty when you are telling her to do something she doesn't want to do. She finally agreed to try to eat something, so that she could take the pills she needed to take before bed, and then we were going to head to bed for the night. No sooner were we ready to walk her into bed then back up all the food and pills came.

Which then meant a call to my Aunt, which then resulted in a call to the on-call IPOP doctor, which then resulted in a trip to the ER. And thus, here we are. All the chemo she's been going through has been in an attempt to kick out her immune system. Problem being, you can't so much as pick up a stapler on someone's desk without an immune system. It's actually been quite amazing to realize just how many germs our body deals with on a normal basis - let me give you an idea...we need to wash our hands before touching ANYTHING she touches, use paper towels for drying, not regular towels, replace sponges weekly, throw out all foods 72 hours after it's been opened, used or leftover, refrigerate anything within 2 hours, no salad bars, delis, buffets, self-serve, or bulk containers, no raw or undercooked eggs, no unpasteurized dairy products, no fresh fruit or vegetable juices, no vegetable sprouts, no raw berries, no smooth unwashed or unpeeled fruits or vegetables, no unpasteurized honey, no uncooked grain products, no raw yeast, no unroasted nuts, no unpasteurized soft or blue cheeses, no well, spring or city water, no shaving, no washing dishes...the list goes on and on. In essence everything we touch has bacteria on it and she can't fight it off if she gets it on herself, so she can't get it. SO...needless to say she is on anti-bacterial pills, anti-viral pills, anti-fungal pills - if it's anti, she's on it. And so when she can't keep them down, she in essence can't keep from getting stuff, and if she gets stuff she has no way to fight it.

And thus, our trip to the ER. She was just taken back, so hopefully being a patient in the hospital will get a little speed in moving her through, plus we have a doctor telling them what to do, they don't need to figure out the problem or how to fix it. Then, once we leave here we'll climb in bed and get back up for another 12 hour chemo day...not likely to be a smooth one either. My mom's friend Patty should be taking over for us tomorrow night, so we can go home and do a major cleaning of the house before she comes home Wednesday. According to my Aunt the major concern these first 3-4 weeks is going to be infection. At that point Brandy's bone marrow should be starting up and the major concern is rejection. Mom will start getting anti-rejection meds starting Wednesday to hopefully make that less of a concern, but we shall see...

As for now, I'm going to read Psalm 103 and wait out the IV drip.