Our Journey

Kaelyn's First Tooth

2010-08-07T21:29:00.001-06:00

Kaelyn lost her first tooth tonight. It was a bit traumatic, but we got it out. Jacob was so funny. He was trying so hard to be a good big brother and help out. He told Kaelyn that losing teeth is like throwing up. Once you get it all out, then you feel all better. We all broke out laughing. It really helped Kaelyn feel better. Not long after that we got the tooth out. She cried a little

Crazy!

2009-11-16T08:18:00.003-07:00

I can't believe my last post was in August and here we are in the middle of November! With going back to work and school and the kids going back to school, I don't know where that time went. We are all doing great. Kaelyn is healthy besides normal colds and ear infections. Her liver is still doing amazing and her AFP is still in the normal range. She is loving first grade. Jacob has been

Busy summer

2009-08-09T15:54:00.003-06:00

I can't believe that it is already August! The kids start school in two weeks (and so do I :P). We have had quite a fun, active summer. We have been camping, gone to Lagoon (the local Amusement park), been swimming a few times and so much more! Jacob went to Robotics camp a few weeks ago and loved it. He is my little engineer that is for sure. He really loves building and programming things

Uggg...

2009-06-18T09:02:00.003-06:00

I know it has been over a month since my last entry. Uggg...There is a lot to catch up on. I am going to start from after Kaelyn's birthday, since that was my last post.The kids are both out of school! Summer break, yeah! Kaelyn made it back to school in time for the last two weeks. She was able to do the chicken dance at the dance festival. That is the one thing she kept saying while in the

Kaelyn is 6!

2009-05-11T13:49:00.002-06:00

Today is Kaelyn's 6th birthday! She is so excited. She came into my room this morning at 6:30 am and asked if it was her "real" birthday. When I said yes, she jumped for joy saying now I am really 6 years old! I can't believe that my little baby girl is really 6. It is miraculously amazing! 5 years ago on this date we were told she only had a 30% chance of surviving to her second birthday.

Home Sweet Home

2009-04-29T14:49:00.003-06:00

Kaelyn was able to come home last night. She is on IV Antibiotics with a PICC line in her arm. Home is as good of a medicine as anything, I think. She has been walking around playing her Age of Empires and dressing up our cat, Mickey-Belle. I think she is very happy to be home. She also slept very well. Nothing like home. She continues to get better and better. She should be able to go

Much Better

2009-04-26T13:14:00.003-06:00

We figured out a good regimen of pain meds for Kaelyn and she is doing much better today. She is up and walking a little bit and also playing and smiling some. Right now she is playing Candy Land with Jacob. He is such a good big brother. I am amazed by him. Kaelyn is finally starting to look like herself again. We are getting some of the excess fluid off of her and she is back to her rosy

Hunger partially satiated

2009-04-25T08:42:00.002-06:00

They did let Kaelyn start on clear liquids yesterday. I had the surgeons paged twice in order to get them to make their decision and put the orders in the computer. They said at 7:15 am that they would make the decision, but it didn't actually happen until around 11. A 5 year old does not understand that the doctors said yes you can eat, but you have to wait until they put "orders" in the

Hungry

2009-04-23T17:26:00.002-06:00

Kaelyn is hungry. And the docs do not want her to eat yet. She tells me everytime she opens her eyes that she is starving and that the mean doctors haven't let her eat for four days. She is breaking my heart. The docs have good reasons for what they do, but I don't think they have spent any amount of time with a 5 year old that hasn't eaten in four days. It is stressful and extremely hard.

Feeling yucky...

2009-04-22T21:00:00.003-06:00

We were transferred yesterday from the ICU to our room in the ICS (Immunocompromised Services), that is a good thing. It is so much better here. Quieter, less hustle, and a bed for a parent. Kaelyn is doing okay. She is still in a bit of pain. She had a really rough night last night. With blood and albumin transfusions, fevers, blood draws, pain and all around discomfort. The surgeon said

In ICU

2009-04-21T09:29:00.002-06:00

Kaelyn was in surgery for about 5 hours yesterday. The surgeon explained that she has a whole lot of scar tissue and it took longer to get to where he needed to be. He actually had to extract the whole liver out of her body to get do what was needed. I was not aware that it was going to be that extensive of a surgery. He was able to go in and excavate the liver to the bile duct and put in a

Rollercoaster

2009-04-20T12:38:00.001-06:00

Okay - so we are back on for surgery today. I guess the surgeons previous cases all went really well and fast. So Kaelyn will go into the OR around 3:00 pm this afternoon. Too bad they couldn't have done her this morning...this means that she has to fast until then. No food all day makes for a grumpy girl. I will update later...

No Surgery Today

2009-04-20T08:24:00.002-06:00

The surgeon just came in this morning and told me that they want to postpone the surgery. So no surgery today. He said that there is a recent liver transplant patient that is not doing well, like Kaelyn did after both transplants, and needs his attention. I totally understand that. He also said that he wants to be able to dedicate plenty of time to Kaelyn's surgery and not feel rushed or get

Surgery Details

2009-04-19T07:53:00.002-06:00

Okay, so I talked with the surgeon yesterday and he explained the procedure to me and why we need to do it so quickly. The bile duct that we had the drains in a few years ago are not draining. The past few years they were draining only a trickle at a time into the common bile duct, but it was enough. Now the place that it was draining from is totally closed off. He said that they will have to

Jaundice

2009-04-17T08:05:00.002-06:00

So, Kaelyn had labs drawn on Monday of this week. We got a call on Tuesday saying that her liver numbers were significantly elevated. Dr. Book scheduled her for a liver biopsy on Wednesday. She had not been feeling the greatest the previous few days, fever and nausea. She also had been really itchy. Her kindergarten teacher even commented on it when i picked her up on Monday from school. We

Sorry Everyone!

2009-04-08T13:47:00.002-06:00

You know, no news is good news right? I apologize for not updating, well, almost 3 months. Kaelyn is doing spectacular! So far her liver numbers look great. The ultrasound we had done in January showed inflammation in her bile ducts, but not really any worse then previously. She is feeling good and being an almost 6 year old! Her birthday is next month and she asks me about it almost

Labs and Ultrasound

2009-01-24T08:33:00.002-07:00

Kaelyn's Liver functions are actually doing better, except for her GGT. The GGT is the number that shows how the bile ducts are doing. It is higher than last week, but not as high as it has been. On top of that, she had a couple of white stools. So, I called the docs and told them this and they scheduled her for an ultrasound. We went in yesterday to have this done. I haven't heard anything

Liver numbers

2009-01-16T08:56:00.002-07:00

Kaelyn's liver enzymes are up once again... Her docs lowered her immunosuppression last week, in hopes to not over medicate. But, labs show this week that her liver doesn't like it. Her enzymes are all up in the 300's again, they were rocking steady in the 50's for a while which was amazing. So, if the increase in immunosuppression meds doesn't do the trick, she will probably have to get

Food Storage Made Easy

2009-01-06T12:50:00.002-07:00

A friend of mine sent me this link to a new website starting up this year all about how to get your food storage in order. I thought it was worth mentioning and passing it along. Check it out if you would like. Looks like they have some good info on starting your food storage and using what you have. Click on this icon and it will take you there...have fun!

Christmas ect...

2008-12-28T13:14:00.002-07:00

I have just updated by flickr account with pictures from the last 4 months. Sorry it has been a while. I do take pictures I just forget to upload them! There are photos there from Jacob's birthday and baptism, halloween and Christmas. Enjoy! We had a simply wonderful Christmas. The kids thought it was magical, and I had so much fun just watching! Love to you all,Angie

Home sweet home...

2008-12-06T14:36:00.000-07:00

Kaelyn was released from the hospital on Thursday night. Still no answers as to why she had such a high fever, so I guess it is being explained by a virus. Hopefully that is all it is and we've seen the last of it. Time to get ready for Christmas!Love to all,Angie

CT Scans good

2008-12-03T14:32:00.000-07:00

Kaelyn had her CT's last night and they didn't show any bile duct issues. Yeah for that. Since she started antibiotics, she has been feeling much better. So far, no growth on her blood cultures. So, who knows what brought all this on. I am just happy she is doing well. Love,Angie

Inpatient after almost a year and a half

2008-12-02T15:20:00.001-07:00

So, I find myself in Primary Children's hospital ICS (Immunocompromised) Unit with sweet Kaelyn as an inpatient. It is a little surreal. We have gone almost a year and a half without having to "live" in the hospital. Normal is just a word...but I almost felt like we had once again attained it. Kaelyn has been generally ill the past 10 days. Cold symptoms and such, but on Friday night, while

Day to day

2008-10-27T11:54:00.000-06:00

We have been getting Kaelyn's labs done once a week lately. Last week her liver numbers looked a lot better. We will see what this weeks look like either today or tomorrow. I am hoping that if they are back to normal that we can take her off of her prednisone. She even hates what she feels like on steroids. She came up to me the other day and told me that they make her feel mad and sad and

A little rejection anyone?

2008-10-12T17:37:00.001-06:00

So, this past week has been a little crazy. We went in on Monday for Kaelyn's routine tri-monthly transplant clinic. Everything was going really well, until labs. Her liver functions were up, way up. So we scheduled her for a liver biopsy the next day. Our 1 hour clinic visit ended up a 5 hour clinic visit with us coming back first thing (6 am) the next morning. She was really nervous for

Kindergarten and 3rd grade

2008-09-10T12:57:00.000-06:00

I kept meaning to post about Jacob and Kaelyn's first day of school, but then get distracted. So here is my attempt at finishing that goal!Jacob started third, yup that's what I said, third grade this year! Argh! I can't believe that I have a 3rd grader. The first day of school was on his 8th birthday this year. Poor kid...but I brought doughnuts to class that day and his teacher let him go

Happy ER visit?

2008-08-18T10:51:00.001-06:00

Kaelyn, the Olympic Diver, landed in the ER last night. She has loved watching the Olympics, especially the divers. She gets up on her little Dora stool and dives her fancy dive into a pool of blankets with little to no splash. She's been getting tremendous scores from the panel of judges (who may be a little biased, seeings how it is comprised of Mom, Dad and brother...) But last night she

Kaelyn Repeat CT

2008-07-30T13:52:00.002-06:00

Kaelyn had a repeat CT scan done on Monday to check the inflammation that they saw in the intestines during the last scan done in June. I haven't heard back from them yet, but wanted to post an update anyway! She, of course, amazed all of the CT techs at Primary Children's. They told her that she is their best patient and that she does better than the teenagers! They had to poke her three

Kaelyn and Jacob

2008-06-11T12:48:00.002-06:00

Kaelyn and Jacob, originally uploaded by perryupdate.I had to put this picture up on the blog. Too cute! I love these kids....I also added a whole bunch of pictures, including Kaelyn's birthday, onto flickr. Just click on the link to the right. Enjoy!

CT Scan Results

2008-06-09T15:17:00.000-06:00

Kaelyn's CT Scans went very well last week. There is no evidence of disease! Hip Hip Hurray! The only thing that was a little concerning was that there is some inflammation in her intestines. We are not sure what is causing this. So, at the end of the month we will talk with her liver docs about that. She may have to have another CT scan in 3 months to see if the inflammation as gone down.

AFP

2008-06-03T11:05:00.000-06:00

So, Kaelyn had labs last week and her AFP is 2.1. Still in the normal range! Yeah! Her liver labs look okay, they are up a little since last month, but really nothing to worry about. Kaelyn has her 6 month CT scan and Oncology visit on Thursday this week. I will update later on that.I promise I will get birthday pictures up soon!love,Angie

Tubes in Ears and birthday number 5

2008-05-06T09:56:00.000-06:00

So, Kaelyn has had multiple ear infections ever since we removed her tonsils in February. So, I took her into the ENT yesterday and they want to place tubes in her ears tomorrow. It is affecting her hearing, which already isn't the best. I guess it is not too involved of a surgery. She should even still be able to continue her swimming lessons that she just started yesterday. Speaking of....I

Doing great

2008-03-24T10:17:00.000-06:00

So, Kaelyn is doing great. We had an AFP drawn on Monday of last week and it is at 2.9. Still wonderfully normal. It's great to know that we have three more months ahead of us with no cancer. Every three months she has an AFP drawn. The days of waiting after it is drawn to find out the results are usually very stressful. As long as it is in the normal range, below 10 or so I can breath for

Tonsils

2008-02-24T16:31:00.000-07:00

Kaelyn had her tonsils out on Wednesday this week. She is doing fairly well. Her throat still hurts and needs her pain medicine pretty regularly. The doctor said that the surgery went really well. Hopefully this will help her be a little bit healthier.As a mom, I hate seeing her in pain. It is no fun for any of us. I did get to register Kaelyn for kindergarten this week. I can't believe she

A little insight into the life of childhood cancer...

2008-02-10T13:23:00.000-07:00

Before I get to the meat of this post, here's a little update on Kaelyn. She is going to have her tonsils removed on Feb 20. Not a fun procedure, but hopefully it will help her feel better and sleep better in the long run. She also recently had an allergy panel done. Are you ready for the list?Kaelyn is allergic to:Egg whiteMilkPeanutsWalnutsSoyCornWheatAny suggestions on what to feed this

It's been a while!

2008-01-14T09:19:00.000-07:00

Sorry it has been so long between posts! It has been a crazy month. We rode another "rollercoaster" in the past few weeks. Kaelyn's tonsils have been huge and this is the first sign of PTLD (Post-Transplant Lymphoproliferative Disorder) AKA - cancer in the lymph system that people can get after transplants due to lowered immune systems. She also has been catching so many colds, and has had

CT Scans and AFP

2007-12-17T09:44:00.000-07:00

Kaelyn had her three month AFP drawn last week. It was at 3, which is still in the normal range of 0 - 15. It has been always 1 or below since her last chemo treatments two years ago, so the little bump does flag my worry. But I have to remember that it is still in the normal range, so I am going to try and not worry about it. Another good thing is that she had her 6 month CT scans done on

Doing great!

2007-12-03T12:08:00.000-07:00

Kaelyn is doing really well. I am so glad that, so far, she is healthy for Christmas. I was thinking this morning that this December marks her two year no cancer anniversary!!!! Celebration!! I can't believe how amazing that feels. She is healthy, happy and cancer free. What more could I ask for. I did post a few more pictures up on our photo gallery. There are some on there from

Kaelyn is home...

2007-11-12T14:49:00.000-07:00

Kaelyn was discharged on Saturday. Her second set of blood cultures done before antibiotics was negative...so they are very confused on whether she actually had a blood infection or if the first culture was just contaminated somehow. She does have an ear infection and a bladder infection...thus the fevers. So, she is fine.Jacob has a double ear infection and a sinus infection. That boy never

Positive blood cultures

2007-11-08T20:35:00.000-07:00

I knew something more was going on than just a cold...mommy-sense...this afternoon Primary Children's called and said that her blood cultures grew out some bacteria. So back in to the hospital we went, this time to stay for a while. She is definitely not feeling well. She fevered all day, so hopefully after starting the IV antibiotics she will feel a little better tomorrow.I will update when I

not feeling good...

2007-11-08T09:15:00.001-07:00

Kaelyn and I spent most of the night at Primary's ER last night. She had a pretty high fever, 103. I had taken her to her pediatrician during day. She (and I) have been pretty sick with a cold. I thought maybe hers had turned into a sinus infection. Her belly was more firm than normal, so we took an X-ray - they were afraid that maybe she had a bowel obstruction, but couldn't tell because her

Good news...

2007-10-24T11:58:00.000-06:00

I apologize for not updating in a while...no news is good news, right?! Well, I do have really good news. Kaelyn had her first labs and clinic appointment since removing her drain last month and (drum roll in the background) her liver numbers are excellent!!! Probably the best they have ever been! I can't tell you how relieved I was when Dr. Book reported the numbers to me, even she was

AFP results

2007-09-27T10:56:00.000-06:00

Kaelyn's latest AFP was drawn last friday. I am happy to say that she is still kicking cancer's booty! It was 1.8, amazing, considering when she was first diagnosed three years ago it was almost 500,000. She is really enjoying being tubeless. It has been so fun to see her go to school and play and be just Kaelyn...no obvious signs of illness to be seen anywhere! Love it!Love to everyone...

Candlelighters' Quest to Cure Childhood Cancer

2007-09-24T15:38:00.001-06:00

This is a video that Candlelighter's is promoting to raise money for Targeted Therapy research. It was interesting and a very exciting possibility for future treatments.

Kaelyn is Tubeless!

2007-09-21T18:39:00.000-06:00

So, the removal of the tube was very simple and quick. She did not even need anesthesia. I though that the docs would want to watch her for a few hours but they just sent us home after we were all done. I didn't feel comfortable leaving Salt Lake so we stayed in the city for a few hours after. She did just fine. No fevers and feeling well. So far so good!Now we just wait and watch.Angie

Tube is coming out!

2007-09-19T14:08:00.000-06:00

Kaelyn will be going in on Friday, yes this friday, at 9 am to get her biliary drain taken out. I am in a little bit of shock that it is so soon (as if a year wasn't enough time to get used to the idea!!). But this is what we have been waiting for right. We are going to do it as an outpatient surgery and just watch her for any signs of infection at home. Hopefully nothing will present itself

Tube news....

2007-09-12T09:55:00.000-06:00

We finally heard back from the docs in Seattle regarding their opinion on what to do with the biliary drain. Their recommendation is to pull it out and see what happens. Wade and I both feel that trying this before doing a major surgery is a good idea. If all is well in her biliary system after pulling out the tube we will have spared Kaelyn yet another surgery. Tomorrow Kaelyn has a

Stay one more night

2007-09-05T15:42:00.000-06:00

So we did end up staying one more night after the tube replacement for a few more doses of IV antibiotic. But we are home now! Hurray! Kaelyn is doing great.Angie

Tube change today

2007-09-04T10:24:00.000-06:00

Kaelyn will be going in for a tube change and cholangiogram today. I am very happy that the docs actually listened to me and scheduled her. For some reason they are hesitant to change the drains unless she is in distress...I don't think that makes any sense. I want to avoid that, not wait for it. Needless to say, Wade and I are very frustrated with some of the doctors here (not all, we have

Bye, bye purple line....

2007-09-02T13:17:00.000-06:00

Bittersweet as it is, Kaelyn's purple Power PIC is out. She had a fever on Friday night, late (of course) and so we headed into Primary around 2 am on Saturday morning. When we were in the ER trying to get labs, her central line (ie, purple line as Kaelyn called it) was leaking. Since she got this line in Seattle, 16 months ago, Primary does not have a repair kit for it. So, unfortunately or

Clinic

2007-08-23T18:26:00.000-06:00

On Monday Kaelyn had labs drawn and a transplant clinic appointment. Her liver labs are all elevated, hopefully it is just because she has a cold. We will go back in next monday for follow up labs. If they are better than all is well, if not - well- we will schedule a cholangiogram and possible liver biopsy to rule out rejection. My opinion is that the labs are elevated because of the cold and

New addition to blog

2007-08-14T15:23:00.000-06:00

Okay - I finally got the photo gallery going. A friend of mine has this on her blog and I just love it, so I figured out how to put it on perryupdate. I hope you all enjoy the photos...I am going to be adding to it as I take pictures (cross my fingers!). You click on the actual photos and it takes you to Flickr's website. From there you can choose to view the photos in a slide show or one by

Yeah Yellowstone!

2007-08-06T08:22:00.000-06:00

So, I went and had Kaelyn's labs drawn last Sunday and we heard results on Monday. Things looked pretty good. I think maybe she just had a virus, somethings been going around. So, Monday morning we drove up to Yellowstone for the Young family reunion! It was so much fun. We really had an amazing time. It was so good to see my family together for something happy and fun, usually we only all

No real news...

2007-07-29T20:53:00.000-06:00

I just wanted to post just so everyone knows that we are still around! Sorry it has been so long. Kaelyn did have a tube change last week. It had gotten pulled a little bit out of place. The IR doc did not stitch it in the last time! I was a little perturbed to say the least. This time he did stitch it. She has not been feeling the greatest since then. We were supposed to go to Yellowstone

No real answers...

2007-07-09T15:48:00.000-06:00

So we had transplant clinic today. Dr. Book, her liver specialist, tried to explain to Wade and I what the IR doc saw in her last cholangiogram. It looks like the drain is not connecting to the rest of the biliary system, except for a couple of small ducts. She did say that the biliary tree looked good, but these small little links would not handle draining the entire biliary system without

Tube change...

2007-07-05T19:38:00.000-06:00

Kaelyn went in today for her first tube change here in Utah. They were two hours late getting her in, but that really isn't anything astonishing. It just means more hungry Kaelyn time to fill. The IR Doc here was a little baffled though, which in turn kindof baffled me. He said he was amazed that Kaelyn's liver was draining as well as it is. He said he was confused on how it all was working

Home Sweet Home....

2007-06-22T10:43:00.000-06:00

We are finally in a home of our own and I love it! The kids have made friends already and things are starting to get unpacked. The neighborhood is amazing. Everyone is so friendly. Kaelyn has been well for almost two weeks. It has been such a blessing to have this time to try and settle in. I hope it continues! Love,Angie

Discharged...

2007-06-12T15:45:00.000-06:00

Yeah! Kaelyn was discharged yesterday. She had no growth on her cultures and her cholangiogram went very well. They did it without sedation to see if the tube was blocked or if there were any new strictures or pooling of bile. Kaelyn is such a super girl! She did just great. The IR Docs did not see anything new. There was a slight stricture in the same spot as usual, but bile was flowing

AFP Results...

2007-06-09T16:02:00.000-06:00

Kaelyn had an AFP drawn this morning. It came back as 1.1, normal! Yeah! There is always such anticipation when we draw this, so I am so relieved. She will have her cholangiogram and tube change on monday. So far, no growth on her cultures. Everyone here at Primary Children's have been so great. It is an adjustment, we do miss our nurses and docs in Seattle, but I think Kaelyn will be well

Primary Children's Hospital

2007-06-08T21:34:00.000-06:00

Well, long story short - we are already in Utah. We had to move a few weeks early for insurance reasons. Crazy - I am glad that the packing part is done. But, not even 12 hours after pulling into my parents house yesterday, we areexploring Primary Children's in Salt Lake as an inpatient. I flushed Kaelyn's drain this morning and there was some resistance and than whoosh, so I think I

Birthday pictures

2007-05-30T12:53:00.000-06:00

We are home.

2007-05-30T12:40:00.000-06:00

We got to go home Friday afternoon! I was very surprised and happy. I love Dr. Horslen...the docs came around for rounds and were all set to have us stay until we had two more days of negative cultures and Dr. Horslen pipes in with something like this, This mom knows what to watch for and how to administer antibiotics. If there is a change in her cultures we will just give her a call. Let's

ER visit...but good news...

2007-05-25T09:45:00.000-06:00

Back in the hospital once again. Kaelyn presented a fever late Wednesday night, so off the the ER we went. She does have positive blood cultures so we will be here until atleast Sunday. She went in for a cholangiogram and tube change yesterday. The docs came back with wonderful news. Her biliary system looks amazing! They could find no evidence of sludge or narrowing. They mentioned that

This is really happening...

2007-05-18T10:12:00.000-06:00

I can't believe that this is really happening! We just accepted an offer on our house in Snohomish, WA and have had our offer accepted on a house in Tooele, UT. We are really moving...wow...Wade is already in Utah. He started his new job on Monday. He has been a busy man. He found us a house that is just "darling" (in my moms words and I agree!), put an offer on it, arranged financing and

Surprises around the corner...

2007-05-04T17:40:00.000-06:00

I can finally post this since Wade has let his co-workers know. We are moving to Utah!! Wade has been looking for a job there for the past two months flying/driving to and from several times. He finally got an offer from the Salt Lake County Clerks Office to maintain and set-up all of their elections equipment. It should be a great job. He starts May 14th. He is going down first so we can

Home

2007-04-30T08:46:00.000-06:00

We did get to come home on Friday, yeah! But, she has a cold now. No fun. As long as she doesn't get a fever we will be able to stay out of the hospital, cross your fingers. On Wednesday Kaelyn get her ear molds made for her hearing aids. Hopefully that will go well. They just squirt some pick goo into her ears. It's soft and cold, so I think she will be all right. Angie

Still inpatient...

2007-04-26T08:25:00.000-06:00

Okay, so on Monday Kaelyn had her drain changed and cholangiogram done. The IR Docs were able to get out a bunch more of the sludge ball and dilated the two strictures (areas of narrowing) in her bile ducts. Things look pretty good in there. She is feeling much better. We are just waiting for two days of negative cultures. We have had one day, so hopefully yesterdays will come back negative

Back in...

2007-04-23T18:41:00.000-06:00

On Saturday night Kaelyn spiked a fever, so back in we went. She topped out at 104 degrees. It was no fun. She is feeling much better now after starting IV antibiotics. Right now she is having her drained changed and a cholangiogram. It was a very long day with a grumpy, hungry girl - but she should feel much better with a new, clean drain. She does have positive blood cultures so we will

In and out, in and out....

2007-04-20T08:47:00.000-06:00

Last Friday around 11:30 pm Kaelyn spiked another fever. So into the hospital we went. Of course not much gets done over the weekend at the hospital so we waited until monday. All of her cultures were negative so they let us go home after two days of antibiotics with a cholangiogram and tube change scheduled for April 26th. Well, last night (Thursday) Kaelyn started to not look like she felt

Sludge Ball gone!!

2007-04-03T14:10:00.000-06:00

Kaelyn had a cholangiogram and tube change last thursday and they removed the sludge ball! It was so exciting to hear that! The IR Doc came in after surgery and told me they took it out and he was ecstatic! I love it when the docs come in excited, that means something good has happened! He also said that her bile ducts look great. I am really excited about that. They broke up the sludge

Hearing Aids

2007-03-17T11:05:00.000-06:00

Kaelyn had her 3 month oncology visit last week. Everything looks great. Her oncologist actually used the word remission in our conversation! Isn't that great! Kaelyn is in remission! She said the longer we go without any recurrence or elevation in her AFP the better chance she has. It was a very positive visit. She also had an audiology exam to test her hearing. She still has moderate to

AFP

2007-03-11T11:33:00.000-06:00

Kaelyn had an AFP drawn on Thursday, <.08!!! Hurray! I was so happy. It has been 3 months since her last level was drawn and, needless to say, I was a little nervous. This was the first time we've waited so long to check up on her AFP. I am so happy that it is still so low! What a relief. I think no matter when we draw that level I will be nervous, but atleast we can breath for another 3

Positive blood cultures (again...)

2007-03-10T19:04:00.000-07:00

Well, on Wednesday night (night before schedule tube change) Kaelyn came down with chills and fevers...off to the hospital ER we go. Once again she has positive blood cultures! It just comes on so fast. She was playing and dancing one minute and chilling and fevering the next. She did have her cholangiogram and tube change on Thursday as planed and everything went well. The docs say that her

Donation button and badge...

2007-03-05T17:47:00.000-07:00

So, Kaelyn is doing much better. But unfortunately Jacob caught the bug. He is doing better today, but the weekend was pretty much miserable. Oh well....can't be healthy all of the time! Luckily I think we are over it, (crossing my fingers!).I wanted to explain the new sections on the right hand side of our blog. First I have placed a donation button for Kaelyn's medical fund. Please do not

Kaelyn sick...

2007-03-01T13:17:00.000-07:00

Little Kaelyn has a flu bug I think. She is not feeling well. Hopefully she will feel better soon. She has a clinic appointment next tuesday and a cholangiogram and tube change next thursday. So, next week will be busy. I will try and update after those two appointments to fill you all in. Love to all,Angie

Childhood Cancer Research budget cuts...

2007-02-22T09:54:00.000-07:00

I need your help.... There have been recent federal budget cutbacks for childhood cancer research. "Rare tumors" is among those to get their budget cut. Hepatoblastoma fits into that category. Without funding and research kids will continue to die. Please take 10 minutes to visit http://www.curesearch.org/news_and_media/news_article.aspx?id=4470 Read about the cuts, and the impact, and send a

Thanksgiving photo...

2007-02-15T15:56:00.000-07:00

So, this is a pic of Kaelyn at preschool on Thanksgiving....I though it was pretty cute!We are all doing well right now! Hooray! Angie

Home..

2007-02-12T14:51:00.000-07:00

Kaelyn was discharged yesterday, yippee! We are home on two different antibiotics. I was going to keep her home from school today, but she was just so perky! So off to preschool we went. She had a great time. I can't believe how fast she recovers from these major incidents! Kids are amazing...Love to all!Angie

Biliary drain out...

2007-02-09T14:16:00.000-07:00

Oh man, what a past 48 hours. Yesterday I came to Children's for Kaelyn's labs and clinic appointment. We dropped off her labs and were heading to the car to meet Wade for lunch to pass the few hours we had until her clinic appointment. I was taking her out of her stroller and noticed her tube was stuck on one of the clips in the stroller, so I unhooked it. I pulled her out of the stroller

Happy Girl...

2007-02-02T14:14:00.000-07:00

So we were able to go home over the weekend and Kaelyn is doing really well. She is doing her 'homework' right now, coloring in her strawberry shortcake coloring book with a pink marker. Jacob has been bringing home a little more homework lately and Kaelyn has loved pretending to be a big 1st grader just like her brother! It has been so fun! She is home on IV antibiotics, but it is much

Not home...

2007-01-25T20:44:00.000-07:00

Well, the tube change did not go as planned. She needed a new drain placed in the opposite side of the liver. They were able to take out the first one completely though. It looks like that area is healed and open. But the other spot is new and needs to be drained and dilated for a while. I bumped into Dr. Reyes in the hall yesterday and he told me that this liver is good. He said that "

In Cholangiogram

2007-01-23T10:27:00.000-07:00

Kaelyn is currently in surgery to have her cholangiogram and tube exchange. It should be fairly uncomplicated since we have done this a million times. So far so good. I wanted to share a photo of Kaelyn that the hospital is going to use for a national campaign. This was selected to be on display along with 49 others from several Children’s hospitals around the country. This exhibit will be on

Kaelyn home

2007-01-22T14:10:00.000-07:00

We got to go home on Saturday. There was no growth in her blood cultures, so we only have to do oral antibiotics at home, yippee! She is doing really good. She is going into the hospital tomorrow to have a cholangiogram and drain change. Hopefully that will take care of any stray bugs that may be in her system. We should be able to go home after the procedure. Jacob went to his first sleep

jinxed

2007-01-18T11:05:00.000-07:00

so i think i jinxed us. kaelyn came down with a fever last night, so here we are in the hospital. i am writing this on my phone, so it's going to be short. she is doing ok right now. sounds like she has another infection. i wll update later.angie

Kaelyn doing great!

2007-01-16T10:58:00.000-07:00

I thought better post something, though there is nothing much "medical" going on! Yippee!Kaelyn has been doing so good. She eats like I have never seen her eat before! And she just looks good. No more sunken eyes and yellow skin. It is so wonderful! I just love it. Sometimes I look at her and want to cry happily and jump up and down with joy. It has been so wonderful!She has been enjoying

"Bob" is gone!

2007-01-02T17:15:00.000-07:00

Today Kaelyn's JP drain, known as Bob, was taken out (finally!). She has had this drain for four months. So it is really quite a relief to get rid of Bob, as friendly as we tried to make him, he was still a pain! She had an ultrasound this morning to check if there was any fluid around the liver to give reason to keep Bob around. Thank Heaven there was none! Yippee!!! Bye, bye Bob!We had a

Kaelyn home...

2006-12-14T19:48:00.000-07:00

So Kaelyn was able to come home on Sunday only from mine and Wade's constant assurance to the doctors that we could do the exact care at home as they were doing at the hospital. They wanted us to stay until the susceptibilities on the bacteria came back. They already had three back and were waiting on one. She was on two antibiotics that cover just about anything. So we saw no reason to make

Scans went well...

2006-12-09T23:28:00.000-07:00

So Kaelyn's cholangiogram went well. It did show that the drainage tube was partially blocked internally and externally was completely scarred around the tube. So nut much bile was being placed into the intestinal area and more pressure was building within the liver. This is probably why the old leak broke open again to releive the pressure. That is why we had drainage coming into Bob like a

Kaelyn doing much better

2006-12-06T15:18:00.000-07:00

So Kaelyn was transferred out of the ICU last night around 10 pm to the surgical unit. I was so glad that we didn't have to spend the night in the noisey bright ICU. She is doing really well today. We have been running around, playing and just having as much fun as you can in the hospital. She is going to have an ultrasound today and her biliary drain changed tomorrow. Her blood cultures did

Kaelyn in ICU

2006-12-05T18:51:00.000-07:00

Last night Kaelyn spiked a fever around 11 pm accompanied with horrible tummy pain. So we brought her into the ER. As always, by the time we got to the hospital her fever had gone down and she was feeling a little bit better. So we waited for labs to come back and decide what to do. Her liver numbers are all okay still, but her white cell count was fairly elevated and she had a band (immature

CT scan results

2006-11-28T08:16:00.000-07:00

Hip Hip Hurray!!! Kaelyn is still cancer free! We braved the snow storm that we had here and went into to Children's for her scan (I still have that Utah blood flowing through me - bring on the snow!). It went wonderfully well. She did not need anestesia which makes it so much easier on her. She is such a big girl. Her oncologist, Dr. Thomson was very pleased with the results. There are

Good news...

2006-11-17T14:37:00.000-07:00

Kaelyn is doing so good! Her docs have given her the okay to start preschool! I think I will start her on Monday. She is so excited. It will be so good for her to do some normal three year old things and play with different kids. They also tapered down her prednisone (steroid) to every other day. Which is wonderful! The only issue that we have is with Bob, her JP drain. Dr. Healey thinks

No news is good news!

2006-11-12T09:35:00.000-07:00

I just wanted to post and let you all know that Kaelyn has been doing really well. It has been so fun watching her play while she feels good. We have had a really good two weeks. She does still have the JP drain, and it is still outputting some, but she sure doesn't let that slow her down! She calls it "Bob". I kept saying that we needed to go empty the bulb (the JP drain has a little bulb

Surgery went well...

2006-11-02T15:09:00.000-07:00

Kaelyn came out of surgery yesterday around 12:30 pm. The IR Docs were able to get the stent through the stenosis and into her intestines. They did the angio (balloon) dilitation and opened up the blockage. The rest of her bile ducts still look great. That is music to my ears! They say that this tube should not clog up as easily as with her last liver because of the way the bile ducts look.

Cholangiogram and tube placement

2006-11-01T12:27:00.000-07:00

So, Kaelyn is currently in IR for her cholangiogram and tube placement. They are planning on doing the balloon thing through the blockage today. So hopefully that goes well. She has been in surgery for about an hour and a half right now. Usually it only takes an hour. It always makes me a little nervous when things start going longer than normal. Halloween was so much fun last night! Jacob

Jacob's turn...

2006-10-25T21:19:00.000-06:00

This week has been all about Jacob. On Sunday morning around 3 am he spiked a really high fever of 104. So, I called our doc on call and he wanted us to bring him into the ER. I retook his temp while I had the doc on the line and it was down so the doc said that I could wait and bring him into a walk-in clinic on Sunday. We did that and it was not a good experience. Needless to say, I will

Cholangiogram and tube placement

2006-10-22T14:42:00.000-06:00

Kaelyn went in for her cholangiogram and tube placement on Friday. She did very well. The bile ducts look great! Isn't that good news! She does have a blockage or stricture in the anastamosis (place where the common bile duct is sewed onto the intestines), but this is the scenario that we hoped for. A drain was placed, but was not able to go through the stricture just yet. Her liver had too

Upliftment

2006-10-16T20:24:00.000-06:00

Once again my friend whose son, Tanner, had a liver transplant has supplied me with the upliftment that my heart and soul needed. This was on her sons webpage:"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face… You must do the thing you think you cannot do.” --Eleanor RooseveltThis is all for some purpose, we just cannot see the

Kaelyn in the hospital...

2006-10-16T20:06:00.000-06:00

Kaelyn woke up at midnight on Saturday with really bad tummy pain. I tried to get her through the night with tylonal, benadryl and zofran (anti-naseau) meds. It sort of worked, she maybe slept three hours. So in the morning I called the hospital and brought her into the er. She had an ultrasound, and it looks unchanged from the last one she had before we left the hospital after transplant.

Clinic appointment

2006-10-10T20:02:00.000-06:00

So today Kaelyn had her first outpatient clinic appointment post transplant. All of her numbers look really good. They are lower than they have ever been. This is good. Dr. Healey said that if her numbers keep looking this good for the next month that she is probably out of the woods for bile duct damage. Hopefully they will look good from here on out. There is a chance that the leak in her