July 31, 2008

Day 10 - My tastebuds are back again!!!

Things are starting to look up! Last night Tammy made a blueberry parfait and I could taste it and it was wonderful. Today at the Clinic Dr. McSweeny said that I don't have to have one of the iv drugs that was every 8 hours. And he said that the kids can come back down! So tomorrow they will be here. I also found out that my white blood count was up to 1.3 which means that I am no longer at the worst stage and my stem cells are engrafting! It will probably be around August 11th that I will be able to go back home. I was able to get my discharge papers; and I will probably have a discharge meeting late next week. McSweeny said that they just want to monitor me for the next week.

July 30, 2008

Day 9 - Cells grafting would be a good sign

We just got the CBC results; my white blood count went up to 0.3 from it being 0.1 since Sunday. My red blood count went up to 29.5, so I don't have to have another blood transfusion; and my platelets went up to a 10 so I will have to get platelets but that's it. So only an hour or so. Since all of my numbers are going up a little I might be grafting soon!! Very exciting!

We also finally got the Oakwood people to get housekeeping to the apartment, but we couldn't really tell once we got home that they actually came. I do have some bad news; at first Kelly (our coordinator) said that we would probably be here for a total of 22 days; chemo and all. Today Dr. McSweeny said I will have to stay here for 20-25 days post transplant. So it will probably be a whole week that I have to stay more than I expected. Hopefully, Derek and the kids can come down soon.

July 29, 2008

Day 8 - Life is sure great

So, today Tammy and I went into the clinic at 9:30 a.m. and didn't get back to the apartment until close to 7 p.m. My platelet went down to 3 even after the platelets I got yesterday. My red blood count was down to 25.8, so I had to get another blood transfusion too. I also found out that one of the culture bottles that they took yesterday came back positive for some kind of infection. Now, I have to do another iv drip every 12 hours. I might have to do this for the next 7 days. This one has a side effect that makes your head turn red. When I got it today instead of turning red my head turned purple. The nurse found it hillarious. Hopefully tomorrow my counts will be higher so that I don't have to spend the whole day in the hospital.

Tonight many of my friends from church cleaned my house. If any of you are reading this, I just want you to know how grateful I am; and I hope the house wasn't too horrible. My mantra today is not all sarcasm; life might not be so great right now; but living is sure wonderful.

July 28, 2008

Day 7 - my hopes rising like leaven

Deliese Kubie came up with today's mantra!
We had a very exciting night last night; We found that the diarrhea that I've been experiencing is because of a bacteria called C-Diff, a very nasty bacteria that is in almost every human but the good bacteria usually fights against it. So I am on another antibiotic to get rid of that. I also experienced a slight fever last night so we had to call the after hours nurse. She came and found that the fever kit that was sent to us didn't have all of the supplies she needed. The good news is that my temperature went down and so I didn't need to go to the ER. My temperature is back to normal again today.
Part 2 - My platelets were down to 7; so I went to the hospital again and got some more. I also had to meet a nurse at the apartment to show me how to hook up an iv at home every 8 hours. Because I had a slight fever yesterday I have to have this antibiotic iv to make sure nothing happened or will.
Tammy came down today to be my caregiver; while Derek went back up to Johnstown for a few days until I get my white blood cell count up. He can bring the kids down with him when that happens; so please, please pray right now that my white blood cells will come up and that the stem cells will graph soon.

July 27, 2008

Day 6, Marrow as new as these baby chicks

No fevers yet. The few white blood cells that Katie has left haven't quit yet! And yesterday, Katie got her first Neupagen shot. Neupagen promotes white blood cell growth. She'll be getting one each day until those counts go back up.
And today, her red blood cell count dropped below the magic number... 25% (it's been hovering between 25 and 30 for the past 5 days). So, we'll be off to the hospital for a transfusion of red blood cells. That'll take several hours and then we'll head back to the apartment. Just fyi... the normal range for red blood cells is 38-48%. All this is normal. Most patients have 2-4 transfusions. We'll be happy to get away with just this one. Also, her platelet level is getting close to that magic number of 10 (K/uL). Her current platelet level is 14. Normal is 150-400. If she drops below 10, we'll be back to the hospital for another transfusion (of platelets this time).
So, it'll be a fun day of sitting in the hospital while hooked up to a machine.

July 26, 2008

Day 5, Doing the Jive to "Stayin' Alive"

That song is now in my head. "ah, ah, ah, ah Stayin' Aliiiiiiive".
So I had a bit of fun before leaving the apartment this morning for the clinic. I thought I was doing quite well, in fact, when after I ate a bowl of cheerios, I all of a sudden got sick and threw it up. Then we were in the lobby on our way out the door and the other end started rumbling. So I had to go back upstairs and rush to the bathroom again. Even though I hate throwing up, the worse thing so far is the constant horrible taste that is in my mouth. It makes foods that I love, like the brownies that Derek made last night, taste horrible. The doctor says it is because of the GI tract scuffing cells, since they are very fast growing cells the chemo wiped them out and is continuing too.
My CBC came back and my white cell count is at 0.1; so that is as low as it can go and they expect it to stay that low for a few more days before coming back up. But I managed once again not to go to the hospital for more blood.

Day 4, Hear me Roar

Roaaaaaar!!! I didn't have the computer as much yesterday so I didn't think to blog, sorry. I dodged the blood transfusion again. But my white blood count was 0.2. Which means we have more downhill traveling to go. Now on to day 5.

July 24, 2008

Day 3, Lovin' my family

My 3rd day! Not that bad yet. And not that bad is great. I miss my kids but everyone knew that I would. I am just so glad that I have Derek. He is so amazing! The doctor did say that this week until day 12 or so will be the worse, so as long as today isn't so bad we are doing good. That means that the kids won't be able to come down until late next week.

July 23, 2008

Day 2, Skies are blue

Skies are blue today! Katie continues to do great. Just a bit of acid reflux. And the smell seems to have gone away. Penny, the nurse, continues to talk about how Katie is a great example of how they want bone marrow transplant patients to feel/act/etc.

So, with this rhyme/mantra thing... we're looking for some help coming up with good ones. Send us emails with your suggestions and everyday we'll post them in the blog. We're looking for some fun creativity from everyone. Make us (and everyone who reads them) smile! This will be your chance to become a famous (or infamous) poet!

July 22, 2008

Day 1 is so much fun

So Penny said I needed to start a mantra for my days after the transplant, and they had to be happy; so day 1 is so much fun. I've had some acid reflux which is not so much fun but not horrible on the spectrum of what could be happening. My blood counts are pretty low today so I will most likely have to get a transfusion tomorrow or Thursday.

The exterminator came today and couldn't find any bed bugs but he set up sticky tape around the walls to get them if they come out at night. The crib is gone so hopefully there will be no more worries. I just hope Lizzie is still okay and it didn't go back to Johnstown with her, my poor sweetie. It is so hard right now to be away from my kids. I think I called home at least 5 times.

July 21, 2008

Day 0 - T-Day

Happy Birthday to me! My nurse, Penny started singing to me when we got in the clinic today. My white blood cells are still there so I am still hanging on. It was a pretty long process because there was one more person getting his cells back today too, so I had to wait for him to get his first. They gave me a lot of premeds and that are making me sleepy. We watched the rest of the 24 season while waiting. The inserting of the cells was very painless, just cold. I might be starting to get mouth sores but that is low on my problem list right now.

The kids went back up to Johnstown today; it was so very hard to see them leave. Hopefully they will be able to come back next week. We have had one problem with this apartment since we got here and hopefully it will be remedied soon. Lizzie had a rash on her head and back, she itch the whole time she was here. When they got home Carla, Derek's mom took her to the pediatrician he said it looks like bed bugs, yeah. So the crib that they put in our room for Lizzie had bugs in it, and it might be in our clothes and the rest of the sheets. This apartment wasn't really cleaned when we got here, there is a pee stain in the corner, the bathroom that I have to use alone is really dirty on the grout and they don't have any housekeeping unless you speed $100/week. We have to either go to another hotel for the night and wait for an exterminator tomorrow to see how bad the bug problem is; or stay in it until we get more information. I'm just glad she didn't have chicken pox or something else.

July 20, 2008

Day -1

Tomorrow is T-day. My new birthday. So far I am not feeling too bad. A little achy, tired and my mouth tastes funny most of the time but that is it right now. I think I might take a nap soon. The kids are still here until tomorrow and it makes me so happy to have them here. They are probably going to leave tomorrow morning when my mom comes up to watch them. My cousin Nina came to visit yesterday and today my friends Steff Wright and Erin Chorak are planning on visiting.

Tomorrow the plan is to go in at 9:30 and get IV fluids for an hour the stem cells through an IV and then another hour of fluids. The nurse today said that the preservatives that they put in the stem cells smell so for the next 24 hours I will smell pretty much like rotten garlic everyone around me will smell it. Today I got a CBC and 2 hours of fluids, patassium and magnisium. They told me after I start the antibiotics, antifungal and antiviral pills I will have a fever and have a blood transfusion. After 5-10 days they will give me shots to boost my white blood cells so my immune system will go up after that. I think within the next few days I will have the no white blood cells at all.

July 17, 2008

Day -4

Still not too bad of a day. I have had to go to the bathroom at least 4 times in the last 2 hours. I guess that just means that my kidneys are healthy. They tell me that tomorrow will be the same as today and Saturday I will come in at 8 and have 1 hour of Chemo and then wait for the doctor to see me. There are a lot of outpatient transplants right now so they are very full and crazy. Monday it looks like I will go into the hospital for the stem cells to flow back into my body.
The boys and Lizzie got to go with Grandma and Grandpa and two of their cousins to the zoo today so they had a very, very fun day already. They even came back with new snake toys. Right when they came back to the apartment they feel asleep.
Oh, well here is trip #5 to the bathroom!

July 16, 2008

Day -5

The kids came down last night and immediately wanted to go to the swimming pool. We went to Applebee's for dinner (don't tell the nutritionist, but the doctor said it was okay this week) and then the boys and Derek went down to the pool for a swim. This morning I came in for Chemo and went back to the apartment and the boys went for another dip in the pool; they love it. I do have to say I am getting very sleepy today and I also had insomnia last night for a little while. My nurse, Penny is telling me to make sure I take every day one day at a time. She is hallarious, I think we will be working with her for the most part through the whole treatment. So far when I come in here they keep me in a little room with my drip. I haven't really seen that many other patients; but Penny tells me there are a few that are around my age with kids, so she would like to act as a cruise director and get us all together. I have had to go the bathroom almost none stop all day. They pump a continual bag of saline the whole time so I am really getting full of fluids.

July 15, 2008

Day -6

So yesterday was my day -7 from transplant. Transplant day is 0 and everyday after that day counts up. They have already told me that the day of transplant is my new birthday. The Chemo drug that they gave me yesterday is alcohol based so they told me that I was going to feel like I had a bad hangover. So at least know I can tell my kids how bad a hangover is! I've experienced it. I have a horrible headache in the center of my head for most of the day and night, I felt a little nauseaus but not too bad because of all of the majorly expensive nausea drugs they give you. It was a full 6 hours yesterday and I was only planning on two. The coordinator told me to come in at 12 to get started and then at 9 yesterday so called and said I needed to be in early because it was a long day. So I had to scramble around and get everything packed faster; because of course I waited until the last possible moment to do that. At least I was able to enjoy my family on Saturday instead of worrying about what to bring for this or clean the house.

Today I feel much better. We even found the pool for the kids and the laundry room in the apartment. The kids are on there way down to Denver now. They didn't join us yesterday because the apartment company didn't have the 2nd bedroom furnished. They will actually get the bed in there tomorrow so tonight they will sleep on the floor or on the couch in the living room. They already have a crib in the master bedroom. So last night we talked to the boys through the web cam. It was pretty hard because they were moving a lot and the sound kept going out. They kept asking if I was okay and it was really hard not to cry. Isaac almost cried when he was asking to come to Denver last night but he did a good job of being a big boy. I can't wait to get my hugs and snuggles tonight.

July 11, 2008

Our apartment

The out patient transplant lets us stay at the Seasons apartment/hotel. It is downtown one block from Cherry Creek shopping center. Our apartment has 2 bedrooms and 2 baths a living room and a kitchen. Lizzie is a little sick right now so hopefully she will get better before Monday.

July 7, 2008

week of fun

I am sorry that you have been waiting on me to write as to what has happened with the harvesting. They called me Wednesday night and said that I had 5.6 million cells and I needed 5 million so I didn't have to go in again the next day. I was so excited when I got the call that I actually shouted into the phone.
So now I just wait and try to have as much fun with my family as possible before next Monday. We are planning on going to the Drive-in and Red Robin for sure the other things are up in the air. We also had a great 4th. We had a breakfast at our church in the morning where a boy that I have never seen before came up to me and asked me why I had a scarf on; I told him because right now I am bald. He immediately asked"do you have cancer? and then he said "oh, I feel sorry for you." And then he started talking about Lizzie as if she were a boy. I kept thinking, somebody had to pay him to say this.

July 2, 2008

Hooked up

I am sitting in the infusion center at St. Luke's Hospital getting my stem cells collected right now. Yesterday I came in at 7 am and had to go home because I didn't have a high enough platelet count. I had a platelet count of 5 yesterday and I needed a 10 or more to collect. The only problem with this process is that you have to wait 2 hours to know if you can get hooked up for another 4 or 5 hours. Yesterday I went to the apartment that we will be staying at in two weeks. It is 1 block next to the Cherry Creek shopping center.
Today I went to Walmart and got my oil changed. They called me on my cell phone to let me know that I had a platelet count of 19; so hopefully that means I can collect all today. The machine is very interesting that I am hooked up to. It looks like a giant old tape/computer from the 80's. It even has little black spinning wheels. They connect four tubes to my catheter and hook it through the machine and the blood comes out of my body and goes through the tubes into a container that scoops out the top of the blood where the stem cells are collecting; and then it rotates through to a heater and goes back into my body. So far I am a little cold and light headed but for the most part I am not that bad. At Walmart I got to movies to watch; Mr. Deeds and Runaway Bride, and I got pencils and a sketch book so I am all set.