no news yet...

I just wanted to update and let you know that I called clinic and they said the results were not back yet and they will call me as soon as they are back. They said to call back tomorrow afternoon if I hadn't heard from them yet. So, I just wanted to let everyone know not to worry if I don't update again until tomorrow. Also, when I have more time, I will update more about our clinic appointment yesterday. Kaidan hasn't been feeling well, and neither have I, so I haven't felt much like writing a lot. Sorry...

I'll update again as soon as I know anything.

clinic day...

Today went well. Kaidan had a bone marrow aspirate done and they also did her spinal with chemo so that she won't have to be sedated next month. I'm not exactly sure how that works, but I'm glad that she won't need to be sedated next month. It always makes for a long, long day when we have to do sedation.

Her counts were good today. White blood cells were 3.0, ANC 1100, hematocrit 36.1, and platelets 270.

We will get the bone marrow results tomorrow, so I'll update again after that. Her blood counts look good, so that is a good sign. We just need to figure out why her counts won't stabilize. I'm not sure when the metabolizing test will be back, it may still take until next week. I'll update when we get that back as well.

Overall, today went well. Kaidan is really tired, but that is just from being sedated. She isn't in any pain from the bone marrow, so that is good.

I'll update again tomorrow. Thanks for all the support.

Monday's blood counts...

Kaidan's counts were good this morning. Her hematocrit and platelets have gone up a bit, which is a big relief. Her white count and her ANC have dropped again, however, so we will still be doing the bone marrow biopsy on Wednesday. The biopsy will look for leukemia cells as well as just look to see if her marrow is working properly in making new blood cells.

Kaidan says she is feeling okay, although she didn't want to go to school, so I don't think she is feeling great. We'll see how tomorrow goes.

I'll update again on Wednesday after we are done up at the hospital.

home sweet home...

We are home tonight, together at last. It's nice. Kaidan's counts went up again. Her white blood cells are 3.0, her ANC is 700. Her hematocrit went down to 31.9 and her platelets went down to 155.

We are scheduled for a blood draw on Monday and chemo on Wednesday. We will also be doing a bone marrow biopsy on Wednesday, so Kaidan will have sedation that day. The other test they are running will take a couple of weeks because they can't just check the level of the chemo in her blood because she hasn't been taking the chemo regularly for so long, due to her constant fevers and low ANC. So they are looking at Kaidan's genetics and certain enzymes in her body, etc. I still want to do the bone marrow though, if only for our own reassurance. Also, Kaidan will not be taking anymore oral chemo until we get the results of all these tests.

Thank you to everyone who came to visit Kaidan at the hospital...she loved it. Also to everyone who kept us in their thoughts and prayers. We are truly grateful. I'll update again on Monday after I get labs back.

one more day...at least...

Kaidan had a fever last night, so we are not going home today. Her blood counts did go up a little. Her ANC is 400 today. Her white count almost tripled from 0.8 to 2.2, so we'll see what happens with that tomorrow. The test for checking how the chemo metabolizes takes awhile to get back, so it might be next week before we know about that. We also have a bone marrow biopsy scheduled for next Wednesday to check for....I won't even say the word....again, the weird, queasy feeling in my chest.

I think we will go home tomorrow, depending on fevers. Right now she is at 99.9, so we'll see...

Thank you all so much for the messages of support, phone calls and visits to Kaidan, and the thoughts and prayers. We are always humbled by the support we receive. Thank you.

long post...sorry...

This is a REALLY LONG post...I'm sorry.

Okay, I have seen the doctor and we have a plan...

If Kaidan doesn't get any more fevers we will be going home tomorrow morning. Right now she is back in the 99.3-99.5 range, so we'll see what happens.

I voiced my concerns about her counts having a hard time recovering and so they are going to run a test to see how her body breaks down the oral chemo that she gets. I had never heard of this test before, and I'm a little frustrated that it hasn't been done sooner. She is going to check with Kaidan's primary doctor to make sure he hasn't run the test in the past, but since I've never heard of it I'm assuming he hasn't. (I know, I know...to ASSUME is to make an ASS out of U and ME :)) I told her I doubted he had, but she said he could have done it and just not told me...unlikely, but maybe I'm too critical...we'll see. She will let me know tomorrow if he has done it or not and we will go from there. She said only about 1 in 200 kids have a problem breaking down the chemo. They break it down much slower than normal, so the dose for their weight is actually way too much for their system. At least if Kaidan has this, we could adjust accordingly.

The other concern I have had is the rapid decline of Kaidan's platelets since Friday. She suggested that maybe we should do a bone marrow biopsy to rule out relapse. She does NOT think that is what it is, but we will see what Kaidan's platelet count is tomorrow and decide from there. Just typing that makes me have a feeling in my chest that I can't even describe. It just makes me sick, even though I know it is VERY unlikely. I would rather be safe.

So, that is the plan from a medical stand point. I have been pleased with our stay up here because we have the same resident we had last week (the only resident I have ever really liked) and the doctor on the floor is one of my favorites.

As I was typing this, the nurse came in to do the test to see how Kaidan metabolizes the chemo...interesting...I knew it had never been done before. It is things like this that are so frustrating. How can we feel like she is getting the BEST care possible when things are overlooked for so long. I have been questioning the doctors as to why her counts have such a hard time stabilizing for several months. There is just no reason why this test shouldn't have been done a long time ago. I hope that it shows something so that we can get her dosage right and figure things out.

Okay...enough of the medical stuff. I have a couple of stories that I want to tell you about. First of all, yesterday was a hard day for me (as if you couldn't tell). For the first time ever, Cash was really upset about us being at the hospital. He was BEGGING me to come home with him and then he asked Nate the whole way home why Kaidan and Mom couldn't come home. That was really hard for me. No one should have to go through this...not the child with the illness, and not their siblings! It was tough, I just felt so bad that we couldn't all be together. Having the boys up here today has actually been okay. Everyone is behaving and we are together (Nate is at work and Pres is at school). It's almost like being at home...not really :) Anyway, it is going better than I thought it would. In fact, my sister was going to come get the boys, but Porter was sleeping and Cash was watching a movie, so I told her they were fine. They are still being really good and they have been here for 4 hours!

Many of you know that Kaidan was always our "wild child". Well, that hasn't changed at all. She is still as fiesty and spunky as ever. I often have a really hard time with her because she can be so sassy. We butt heads a lot, but when we are at the hospital or when Kaid is really sick, it's a totally different story...usually. We do have our little arguments sometimes, but she becomes the biggest sweetheart ever. Kaidan has always been a tease, but she also has the BIGGEST heart and when she hurts someones feelings or sees someone sad, it breaks her heart. She is really an AMAZING little girl. But on to the story...about 4:00 this morning she needed to use the bathroom so she woke me up. The whole time we were in there she was telling me how sorry she was for waking me up, I felt so bad that she was so worried about it. I kept telling her that it was not a big deal at all, but she felt bad anyway. I just thought it was so nice that she had such worry for me when she's the one in the hospital. Then, when we climbed back into bed she told me she loves me. She tells me that all the time, but this time was different. It had such meaning behind it. A lot of times we say those words without much feeling behind them, it is more of a habit, but I could just tell how genuine she was being. It felt great to have that small moment with her. Then, to my surprise, this morning she asked me if I was hungry and wanted to go downstairs to get some breakfast. This was unusual because she does not like to be left alone in her room. It just shows me how brave she is trying to be. I'm very proud of her.

The last thing I wanted to write about is from another carepage that I read. This mom had been told that her child had only a 25% chance that he wouldn't relapse, 75% that he would. She used the weather as a metaphor. How would you prepare for a day outside if the weatherman said there was a 75% chance of a huge storm? What would you wear knowing that there is a 25% chance it will be completely sunny and the most beautiful day ever? It's just something to think about. It's hard to understand what we worry about on a daily basis unless you are going through the same thing. Of course, we are blessed that our odds are much better than that. We were given 60-70% success rates. Based on Kaidan's high white count at diagnosis and the fact that it was T-cell leukemia, she was put into the high-risk category. So, when you think about that, it makes you look at things a little differently. Right now, it's a beautiful, sunny day. I'm wondering how to dress because the weather man says there is 30-40% chance that the biggest storm we've ever seen is going to come through. But, like I said, right now is beautiful and there is 60-70% chance it will stay that way. What would you do...I think I'll at least take a jacket and an umbrella.

quick update for wednesday

I'm going to do a longer update later, but I wanted to give a quick status on Kaidan. She is doing well, no fevers since around 6:00 last night, but we will be here at least until tomorrow.

Her counts have all dropped. I said her hematocrit was 32 yesterday, but it was actually 34.5, today it is 31.3. Her platelets have dropped again to 161, white blood cells have dropped to 0.8, and ANC has dropped to 100.

I have the boys up here with me this morning and so far it is working out well. I have a lot of offers for help today, so I will be good as far as that goes. Thanks to everyone!
I'll update again later this afternoon after I see the doctor.

I should've known better...

I should've known better than to think I wouldn't be updating again until next Wednesday. We are at the hospital again...INPATIENT. Kaidan's temp was hanging out around 100 all day, never going over "the mark" of 100.3, but none the less, a temp for Kaidan. Around 3:00 it started to rise, and by 5:00 it was 101.7, so here we are!

I called the clinic and they tried to send us to the E.R., but I told them NO! I knew we would be admitted, because Kaidan's ANC was below 500 yesterday, so I didn't see any reason we needed to sit in the E.R. for 6 hours just to be moved up to the 4th floor. So, after a little persuasion they got us a room and just direct admitted us. Sure enough, Kaidan's counts have dropped even lower than yesterday. White blood count down from 1.8 to 1.0, hematocrit down from 38.5 to 32, platelets down from 299 to 204, ANC down from 300 to 200. Keep in mind that this is without any chemo for over a week. We need to find out what is causing these fevers and why her counts are having such a hard time recovering.

I'm feeling a little picked on and a lot stressed out! Nate's work isn't being as kind as they have been in the past. I feel like people sometimes forget that Kaidan still has cancer! Just because we started down this road almost 2 years ago, she still has cancer. Things aren't as rough as they were in the beginning, but she still has cancer. We are still doing treatment, and we are still walking on pins and needles every time we wait for test results. It will be that way for the rest of our lives. I feel blessed that we have a wonderful family and a huge support group, but it is so hard to not have one of us with the kids. We have worked really hard to keep me home as much as possible, and the boys are always with Nate or me. It's hard for others to understand how tough it is for the other kids when we are up at the hospital. For us to send them from place to place and leave them with people they aren't with that often only makes it more difficult. They feel left out and neglected. There is no way I could ever say that this experience hasn't had as big of an impact on all of them as it has on Kaidan. It is SO, SO hard for everyone.

Anyway, enough of my belly aching. I'm just feeling some uncomfortable feelings lately. You know, the camels back can only hold so much straw...

Until tomorrow...

Monday blood counts...

Kaidan had labs again today...not really any change. Hematocrit is 38.5, platelets 299, white blood count 1.8, and ANC 300. I had a big scare this morning because when Kaidan brushed her teeth her gums started bleeding like crazy. I know this isn't a big deal to anyone, but for a cancer patient it's HUGE. Bleeding gums is a sign of low platelets and I knew if Kaidan's platelets were 399 Friday they should not be low today. That would be a bad sign. So, it was nerve racking waiting for labs to come back, but I was very, VERY relieved to see that her platelets are still in the normal range, even though they have dropped. She must have something irritating her gums, so I have had her using an antiseptic mouthwash to see if it helps. Her gums have never bled before, so it scared her...she's okay now though.

I had the nurse leave her port accessed because her temperature has been between 99.2 and 99.6 all day, Kaidan's baseline temp is 96.9-97.5. I figured if we took it out she'd get a fever, but if we leave it in she won't. :) Isn't that the way it always goes?

She's doing okay, I don't think she feels fabulous, but she'd never say otherwise. She stayed home from school, so that says a lot. Anyway, they are keeping her off chemo until her clinic appointment next Wednesday, so we'll see what her blood is doing then.

I'll update next Wednesday unless something changes before then. Thanks for all the love and support. It means everything to us.

Friday labs

Kaidan had labs done today and they look good. Her hematocrit is38.4, platelets are 399, white blood count is 1.8 and her ANC isonly 300. So...she is still at HIGH risk for infection and illness,until that ANC goes up at least above 500, it would be even betterif we could get it back above 1,500. They won't start her chemosback up until it is higher than 750.

I'll update again Monday afterher next labs.

going home...

We are headed home! We are waiting to see the "real" doctor, instead of the resident for final permission, and then we'll haveto wait for discharge papers, so we will go home today, but it could be awhile still. Probably this afternoon sometime. Kaidan's blood counts are going up, her ANC is 100. So, she is still neutropenic and if she gets another fever we'll be right back up here, but hopefully that won't happen.

We have stopped Kaidan's oral chemos and she will have blood draws every Monday until next clinic on the 29th.

I'm going to keep a log of her stomach pain and we'll decide what to do about it based on what those logs look like. I had a long talk with the resident today (the first resident I think I've ever actually enjoyed talking to) and I feel much, much better about holding off on any further testing. If all doctors would just spend a little extra time explaining and LISTENING the world would be a better place! The resident this morning did that, and I feel a lot better about things.

I'll update if anything changes or on Monday after her blood draw...whichever comes first!

update 2 for 4/14...

We aren't going home today. I'm glad, only because with her counts at 0 and our "GREAT" luck, she'd end up with a fever at midnight and we'd be right back up here. So we'll be here at least until tomorrow.

As far as the abdominal stuff, they said they wanted to try a stool softener for a few weeks to see if that helps. I guess the x-rays didn't show anything. I won't do the stool softener though, because the problem we are having is that Kaidan has diarrea on average 3-4 days a week already. DON'T THEY LISTEN?? That is 1/2 the problem. So, I think the next step should be ultrasound or a scope. I don't know...maybe i'm worried for nothing. I think I'm just going to start keeping a log to show the doctors and then we'll go from there.

In other news, Porter still has an infection in his right ear...this has been going on since January...so we have him on one more antibiotic and then we'll deal with the tubes in a few weeks if necessary.

I'll update again tomorrow.

the waiting game....(update 1 from 4/14)...

We're just waiting for the doctor. I don't know if they will send us home or not. Kaidan is doing well, she hasn't had a fever since we got here, but her counts have all dropped today.

YESTERDAY, TODAY, NORMAL
white blood 1.5, 1.3, 5.0-14.5
hematocrit 36.2, 32.3, 35.0-45.0
platelets 365, 305, 150-400
ANC 0.2, 0.0, 1.5-8.0

The blood cultures haven't grown any bacteria. Rounds started at 9:00, so they should be coming around soon.

They did several x-rays yesterday on Kaidan's abdomen yesterday to see if they could find out anything with her stomach aches. I haven't talked to the doctor about them yet either, so we'll see if they show anything. Of course, since we've been here, she hasn't had any problems and she's eating great. Isn't that the way it goes?

I know Kaidan looks good and she feels pretty good too, but we do have to remember that her little body has taken a beating these past 21 months and she is very fragile. I would always rather be extra cautious and safe. Sometimes I feel the doctors look at her and because she looks so good they discount the symptoms I am telling them she has. It's very frustrating. I just have something in the back of my mind that tells me we really need to watch her close and this stuff going on with her stomach isn't normal, even though it comes and goes. We'll see...

Yesterday, Nate and his mom and the kids came up and hid the goodies from the Easter hunt around Kaidan's room. She was really excited to get her own little Easter hunt here. I'll try to post some pictures today.

I will update as soon as I know more.

INPATIENT...ANC 200...

First of all, please vote daily for our Utah Make a Wish
Foundation:
http://www.bettycrocker.com/StirringUpWishes/Default.aspx

And...on to today. Kaidan woke up with a headache and a low fever. I called clinic and, of course, they needed me to bring her in. We came up and her ANC is 200, so here we are, INPATIENT!! Kaidan is not happy about this because we had an Easter party at Nate's mom's house tonight and she is very sad that she's missing it. We will be here for at least a day or two. I'll update tomorrow morning after I talk to the doctors because I don't really know what the criteria will be for her to go home (you know, consistency has never been their strong suit). Since we've been here she hasn't had a fever, but that's how it goes. I also told the doctors that I want them to look into her constant stomach problems. We're here anyway, so now is as good a time as any to do further testing. I just want to make sure it's nothing, on and off stomach pain and diarrea is what got us into this whole cancer mess in the first place. The doctors don't like to listen to me (things are always better if it was their idea), but I'd rather run the tests and be safe. So, we have started with X-rays and we'll go from there.

I'll update again tomorrow morning. I hope everyone had a wonderful Easter.

Happy Easter...

First of all, please vote daily for our Utah Make a Wish Foundation:
http://www.bettycrocker.com/StirringUpWishes/Default.aspx

Secondly, I have posted new pictures of Porter’s 1st birthday at our family picture site:
http://www.thesudburyfamily.shutterfly.com

Last, but not least, an update on how we are doing:
I’ll start with Kaidan. She’s doing well other than a constant stomach ache. I’m not sure what the cause is, but I’m hoping it will get better soon.

Preslee is doing great. Porter is doing well, he still has a runny nose, but he’s good.

Cash is doing well, so I thought. He complains of a stomach ache almost daily (usually several times a day). I have just chalked it up to him feeling like he needs to use the potty (which, by the way, he is doing AWESOME!). Anyway, this morning was no different. Cash told me several times that his tummy hurt and I responded by asking him if he needed to poop? Nope. So I told him to go lay down on the couch and it would feel better. Apparently, go lay on the couch sounds a lot like go throw up all over the kitchen floor! Yep, that’s what he did. He puked EVERYWHERE! Granted, this is part of life with kids, right? I understand that, but can someone please cut me some slack??!!?? Today was not the day for this! Nate is gone turkey hunting with my dad, my sisters are in Moab, my mom was at work, and I was supposed to be to work in 20 minutes (the kids were going with me). We were just getting ready to walk out the door and now Cash is covered in puke, so is my kitchen, and of course, so were my pants (he continued throwing up all the way to the bathroom). He’s doing much better now, but I have no idea what is wrong with him. He keeps getting these strange fevers every few days and the constant stomach pains. AAAAAAHHHHH!!

So, that’s a day in my life! I haven’t worked for almost a month because of everyone being sick. I’m hoping after Easter life can get back to normal…yeah right!

I want to wish everyone a wonderful Easter from the Sudbury’s!

Please support the Make a Wish Foundation of Utah...

Everyone is okay around here. Not great, but okay. Kaidan is at school, but she's struggling with some stomach issues the past day or two. Porter and Preslee are well, and Cash has been running a fever with a cough and runny nose for the past two days.

Please vote daily for our Utah chapter of Make a Wish. They need your support!! Thanks!!

http://www.bettycrocker.com/StirringUpWishes/Default.aspx

doing better!

We are all doing OK. Kaidan hasn't had a fever since Friday, so I have de-accessed her port. Preslee is doing much better, her cough is even almost non-existent. Cash is good. Porter is coughing, has a runny nose, and a low fever. He had a rough night last night, and now with the fever, I'm thinking it's probably his ears. I'll probably call the doctor and get him started on an antibiotic. I'm still coughing like crazy, but I feel better during the daytime, so I'm OK with that. I'll update again soon.

Remember to vote online at Stirring Up Wishes with Betty Crocker for the Utah chapter of The Make a Wish Foundation. Thanks!

Another day...

Today is going good. Kaidan isn't feeling well. She's fevering still and we'll be giving her the IV antibiotic at home around 3:00. I called and got her lab results and she has metapneumovirus. I've googled it, and it's basically a respiratory infection, similar to RSV. It's nothing to worry about as long as it doesn't settle in her lungs, so hopefully it will run it's course and she'll feel better in a couple of days.
Other than that, things are good. Preslee is doing much better, Cash is coughing, and Porter is coughing and has a runny nose, but they are OK. Nate has somehow avoided all of this...I wasn't so lucky. I think maybe, just maybe, I'm starting to feel a little better today.
I'll update again in a few days unless anything changes.
The Make a Wish Foundation of Utah needs your help!! If they get the most votes, Betty Crocker will sponsor a wish this year for them. Please go to the link below and vote for the Utah chapter of Make a Wish.
http://links.emails.generalmills.com/ctt?kn=3&m=3993252&r=NDIyMjA1NTcwMgS2&b=0&j=MTE1MDM1ODA2S0&mt=2&rj=MTE1MDExMTcyS0&rt=0

April 2, 2009

Well, Kaidan's ANC went from 1400 yesterday to 600 today, but she hasn't had any fevers since this morning. The doctors gave her another dose of antibiotic and sent her on her way. They are sending out another dose for tomorrow that we will give her at home, so she should be good through the weekend, unless we notice any changes in her. They also decreased her chemos back to 50%. (She was already at 50% on one, but the other one was up to 100%)
This definitely isn't "smooth sailing" like we were told it would be!
Porter had his doctor appointment today. His lungs were clear, so he doesn't have pneumonia...that's GREAT! But...his ears are looking pink, not infected yet...but possibly on their way. The doctor (can I just say, I LOVE HER) gave me her cell phone number so I can call her over the weekend if he seems to be bothered by his ears. She said she'll just call in the antibiotic instead of me calling the office and having to make an after hours appointment! If they do get worse, we will be putting tubes in his ears in the near future to stop this endless cycle of infections.
Next chemo is April 29th...7 more to go!!

April 1, 2009

Sorry I didn't update yesterday.
Kaidan did have chemo and she also received the IV antibiotic because she had a fever.
Today...
I am taking Porter to the doctor for his 1 year check-up. He is sick also, so I'm glad I had this appointment.
Kaidan has a fever of 104, so she will be going back to the hospital also.
I'll update again later with all the details.