CT Scans and AFP

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 Thursday and they saw no evidence of cancer. YIPPEEEE!!! This means that Kaelyn has been cancer free for two whole years!! That is just amazing. What a wonderful Christmas gift, I don't need anything else....

She has been battling yet another cold this past week, and contracted pink eye in both eyes. Her eyes are looking much better after a few days of treatment, but she still cannot shake the cold. Each day she gets a little better though. I think she will be healthy and well next week for Christmas (she asks me every night if tomorrow is Christmas - I think she is just a little excited!).

The words of the hymn Count Your Many Blessings has been repeating in my head for about a week now, "Count your many blessings, name them one by one - and it will surprise you what the Lord has done...." I am truly surprised and eternally greatful for the many blessings the the Lord has seen to grant me and my little family. I love the Savior...He has been my Light and Strength for the past four years. I know that whatever the future holds for Kaelyn, that He will be there to share in the joy, burden and sorrow of what may come. My Kaelyn is a miracle...and I am forever thankful for the time we have shared through the Grace of our Father. I pray that we will continue to be able to share good news on this blog. It has been so wonderful to write of all the good, happy times.

I wish you all a wonderful Christmas, count your many blessings...

love,
Angie

Doing great!

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 Halloween, putting up our Christmas tree and our first Utah snow storm.

Kaelyn is due for a CT scan and her 6 month oncology visit this month, which as always, makes me a little nervous. But hopefully this will all be well and we can keep counting the no cancer months!

Love to you all,

Angie

Kaelyn is home...

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 complains. I didn't even know he was sick. He was stuffy, but he has bad allergies so I just chalked it up to that. On Friday, while I was in the hospital with Kaelyn, the school called my dad to have him pick up Jacob because he said his ear hurt. My mom made him a doc appointment and they said that he had the worst ear infection that she had seen so far. I couldn't believe it! He is just the sweetest kid. I don't know if he just has a high tolerance for pain or if he thought he had to be brave and strong since Kaelyn was in the hospital. I sure love that boy...I only hope that he knows he is just as important to me as Kaelyn.

Well...the sick Perry household is all on antibiotics, except Wade. I, too, have a sinus infection. Luckily we are on the down side of the slope now.

Love to everyone!

Angie

Positive blood cultures

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 can...

Angie

not feeling good...

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 colon was very impacted. And her fever started to peak even on tylonal. So into the ER we went. It was not fun. They gave her an IV (which Kaelyn hates), drew blood for liver functions and cultures, X-rayed her chest, gave her an enema (I have never seen one before and hope that Kaelyn never has to have one again....) and sucked the mucus out of her nose to test for common viral infections. Needless to say, Kaelyn was not a happy camper. Her labs came back a little elevated, but not anything to drastic. Which is good news. She did not have a bowel obstruction more good news. The consensus - common cold. So I was relieved and a little reluctant to believe the diagnosis because of past experience. So I made them keep her until her fever went down. They wanted to send us home while her temp was at it's highest! I couldn't get the images of her going into septic shock if we went home out of my mind - so we waited. After about another hour, her temp went down and we went home. She is still miserable and fevering, but I believe that she really does just have a bad virus. You just have to be so careful with fevers...it could mean so many things in our Kaelyn...rejection, colangitis, bacteremia, not just cold.

I think I just rambled that in a very jumbled post...hopefully you can make sense of it. Kaelyn is okay, just commonly sick.

To switch subjects, I have some friends here in Utah that have been through very similar experiences with their son - Stage IV Hepatoblastoma and liver transplantation. Someone took advantage of their story and tried to pass it off as her own and got caught (thank goodness). It just infuriates me! One of he local news channels here in Utah is airing their story tonight. If you would like to watch I posted the link at the bottom of this post.

If you can not get to it via the link, go to www.kutv.com. For those of you out of state, you will be able to see the story in its entirety beginning Friday morning.

The story is called "From Healing to Heartbreak". I hope it opens peoples eyes and hearts....love to you Megan, Jason, Tanner and Family...

Love,

Angie


ctrperry@comcast.net would like you to see this video:

http://www.kutv.com/content/news/specialreport/story.aspx?content_id=89b1ba3c-08db-4a91-b289-4fec730515c7&articleID=30172&articleID=30172

Personal Message:
This is the link to Healing to Heartbreak

SenderEmail: ctrperry@comcast.net

Good news...

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 fairly surprised. She stated that she really expected to have seen us in sooner with problems, and I admitted that I did too. Kaelyn has had one month free of any tube like medical stuff extending from her body and is doing amazingly well. It has been a wonderfully good month.

Love to all of you,

Angie

AFP results

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...

Angie

Candlelighters' Quest to Cure Childhood Cancer

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!

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!

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 and Kaelyn can have a tube free weekend!!!!! She hasn't been without some sort tube sticking out of her body since this all began in May of 2004. I am really nervous and excited. Our ward here in Tooele is going to have a special fast for Kaelyn on Friday and will be attending the 7 pm session at the Salt Lake Temple for her. If anyone would like to join in with the fast or attend the Temple in your area please do. She needs prayers and angels. I will update as I can on friday to let you know how it goes...the tube removal should be uneventful, it will just be the watching for infection part that I am a little unsettle with.

Love to all,

Angie

PS - I just put a few new photos on the flickr account - they include Jacob's birthday and both of the kids first days of school. Kaelyn also has been putting herself to sleep all by herself (First time ever!!!) so we rewarded her with a Dora bed - one of the pictures has her in this bed just loving it!

Tube news....

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 transplant clinic appointment, so I am going to bring all this up with her docs here. I know that they would much rather do the surgery and I want to find out why.

So, I will try and post tomorrow with more info and what the final decision is. I am hoping and praying that Kaelyn will be tubeless sometime soon and with a healthy liver to boot!

Love you all!

Angie

Stay one more night

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

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 met a few very nice docs). But the doc we see most is very hard to work with and she always seems to be out of town. We have been waiting for two months to hear what the long term plan is for Kaelyn and her biliary drain. And this doctor just, in our opinion, doesn't seem to see any urgency in figuring out a plan. Grrr!!! Of course, she is out of town this week, so no answers.

I'll stop complaining, now for the good news....after Kaelyn's tube change we get to go home! Yeah!

Angie

Bye, bye purple line....

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 fortunately (I can't decide which one it is yet) we had to have it surgically removed today. The surgery went well, and pretty purple line is gone. What does this mean for Kaelyn? Well, she will have to get "poked" for all of her lab draws now and she will have to have an IV placed whenever she needs fluids or IV antibiotics. Ouch! But, it is one less conduit for bacteria to enter her body, which is a good thing. And one less foreign thing in her body to create infection. So, bittersweet. She will probably be inpatient for a few more days. She will probably have a cholangiogram and tube exchange while we are here. Her biliary drainage is smelly - usually a sign of infection.

But, regardless, she is doing very well. Playing with her horsies and watching Dora. Two of her most favorite activities...

Love all,

Angie

Clinic

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 it is not rejection. So we will see on Monday how is goes.


She is doing better as of today with her cold so hopefully things will be fine on Monday.

Jacob started school this week - 2nd grade. He says that he loves it and his teacher is really nice. Whew!


Angie

New addition to blog

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 one. I really like the slide show format. I have put a lot of pictures I took while we were at Yellowstone that are really fun. So Enjoy!

Other news...Kaelyn's WBC (white blood cell count) and ANC (absolute nutrophil count) is really low and we are not sure why. The docs have taken her off of her ciprofloxacin (antibiotic) to see if that will help her WBC's recover. I guess that is one of the side effects, though I thought antibiotics were supposed to boost your immune system, go figure. I am a little nervous taking her off of her cipro, I think that is why she has not had to be inpatient for over two months. But I also don't want her having a low WBC and catching every little bug that goes around, especially since school starts next week.

I have also started a little part time job. I clean a local resteraunt every morning for two hours before Wade goes to work. I really think that this will help bring down our debt to income ratio. Since our move, finances have been...well let's just say tight. This will bring a little extra to help out and actually, though it sounds tedious, it has been kindof fun! I am a little strange though! I feel like I am getting paid to listen to music and get exercise (that I desperately need). So, we go on!

Jacob is officially registered as a second grader as of today. He had to get an additional immunization that WA state didn't require. He was very brave though...such a good kid. He also becoming a fish as a result of his swimming lessons. He has two more of those and then school starts next week. Crazy!

Please keep in touch, send us a comment or an email.

Love you!

Angie

Yeah Yellowstone!

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 get together for a funeral, sad huh! But thanks to my moms planning we really had an amazing trip. The only thing that would have made it better was if Wade could have come too. He, unfortunately, could not get the time off of work. Kaelyn is still talking about the geysers and mudpots! She was pretending last night that our basement was where Old Faithful was. It was really funny! I really want to post some pictures, but I cannot find my cable to connect my camera to the computer...so, I will have to figure out another way to get the photos onto the laptop...

Well, Jacob is going to start swimming lessons this week. He is really excited. And then his birthday is on the 21st (I can't believe he turning 7!). He starts the second grade on the 22nd. Crazy! This summer has gone so fast!

I am working on getting Kaelyn into a preschool that offers speech therapy in their curriculum. Hopefully she will qualify. I think she will with her hearing loss. I think she will start the beginning of September. She is really excited. She loved preschool last year.

Here is one last amazing fact. Kaelyn has gone two whole months without an inpatient stay at the hospital! I can't believe it! It really has been a good summer...

Love to all,

Angie

No real news...

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 today for a family reunion. But I had a bad feeling about taking her today, so we sent Jacob with his Grandma so he could enjoy some vacation and I took Kaelyn into Primary Children's for lab work. I have not heard the results yet, so probably in the morning. I am just afraid that we will get up to Yellowstone and Kaelyn will get a fever, what do we do then? Well....she is feeling better tonight than she did this morning, so we will see. Maybe tomorrow or the next day we will go up and join Jacob. I hope so. It really is hard to miss those family memories...

No real answers...

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 the catheter that is in place. So no pulling the tube anytime soon. Dr. Book said that she was going to send the Seattle docs (Horslen and Healey) the last cholangiogram and speak with them over the phone for some suggestions on what to do, since they know her system really well. Dr. Book said that most likely it will involve a biliary reconstruction surgery to open up the biliary system into one instead of two separate systems only connected by those little ducts. It's moments like these that I feel like second guessing our decision to move....but, I still feel that we need to be in Utah, so I guess we will just trudge on. I just really miss all of the familiar faces. And the trust that we had built up with all of the docs on Seattle. I want to trust the docs here, but I am so glad that they are willing to run by what they think and get the opinions of the Seattle team. I am just a little shocked, since when we left Seattle we were under the opinion that Kaelyn's biliary system looked great, and now one month later we are facing a surgery. I am looking forward to hearing what Docs Horslen and Healey have to say....

Well, I will write again when I have more info...

Love,
Angie

Tube change...

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. I don't like to hear that a doctor is confused when he is taking care of my little angel. He said he was going to re-look at her previous scans sent from Seattle Children's and talk with a myriad of folks, including the liver surgeon and liver specialist here and also with the IR folks at Seattle Children's, not to mention his colleagues and anyone else he could think of. What does that mean as far as Kaelyn's future liver health, I don't know. She has a transplant clinic appointment on Monday, so I am writing a list of questions and concerns to bring up then. I am praying that this IR doc just hasn't seen a case like Kaelyn's. Hopefully after all of the discussing and studying of past scans will clarify that the liver is fine, like we have been told all along.

Well, we will see....

Home Sweet Home....

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...

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 just fine through it. She also had her 6 month routine CT scans done, again without sedation! I think all of the techs and radiologists think she is amazing (and she is, of course). She was so still, it went very well. I have not heard results from that. On Monday we have her official transplant clinic appointment. I think we are going to discuss her ct's then.

Well, all is going great so far. We are going to move into our new home on Monday. I finally got to see it for myself last night, Wade did good. It is so cute! I really love it!

Love,

Angie

AFP Results...

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 taken care of here.

Love,

Angie

Primary Children's Hospital

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 dislodged something. I called the liver folks here and tried to get a cholangiogram scheduled. But no more than an hour later Kaelyn started chilling and then spiked a fever. So off we went into Primary's. I am fairly certain she will have positive blood cultures. We changed her dressing on both her drain and her central line. Both of them looked a little red and the drain actually smells a little funny. So, more antibiotics here we come! The crazy thing is that she just finished her last two week course of antibiotics on Wednesday. Something is going on. We just have to figure out what that something is. They did an ultrasound today and it looked good. Probably tomorrow they will do a cholangiogram to see if there are any strictures in her biliary system.

All of this after an 18 1/2 hour drive with two kids and a cat. I think I am a little tired.

Love,

Ang

Birthday pictures

We are home.

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 let them go home. I was so excited and happy! And, Kaelyn has been doing just fine at home on antibiotics. So hurray! I hope I can get his kind of trust from our new docs in Utah.

We are packing and packing and packing....I can't wait to be settled in our new house in Utah. 17 more days....

Love to all,

Angie

ER visit...but good news...

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 if we were not moving out of state they would have considered pulling the tube to see what would happen. But because of our move they wanted to be cautious and leave it in until after we are settle. I was actually very grateful they decided that, because the last thing we need during our move is a major liver event and have no access to see what is going on. Dr. Shaw, our IR doc that does most of her tube changes, mentioned that he called the IR doc in Utah and is very confident in her ability to care for Kaelyn. He filled her in on all of Kaelyn's info and they think that within a month after we are there that they may be able to get rid of the drain! I am very excited! Kaelyn has told me that the first thing she wants to do when she is tubeless and healed is go swimming. She will be a very cute little mermaid! So keep those prayers coming (it would hurt to cross your fingers too!). I think this will be a wonderful summer!

Angie

This is really happening...

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 trying to figure out a new job all in four days. The kids and I miss him so much, but I am so glad that he is preparing the way for us to have a smooth transition. Moving is so hard! But I think it will be well worth the month of separation and work. The kids and I will be moving down on June 16th. I can't wait! We can move into our new home on June 18th. Very exciting. This is technically the first real house that Wade and I have ever bought. And I love it! It really is darling.

Kaelyn gets her hearing aids on Monday. We will see how that goes...She had to have her tube fixed, again, this week. It started leaking, yuk. I think we will make sure she has one more tube change before we go. She also will have CT scans and an AFP drawn on June 6th. That always makes me nervous.

Anyway, this is going to be a very busy 30 days. Love to you all!

Angie

PS - If you would like to see a video of our new house in Tooele click on this link.

Tooele house

Surprises around the corner...

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 wrap things up here with Kaelyn's hearing aids and Jacob can finish school. The kids and I should be there the end of June. I can't believe this is finally happening! Wade and I have been in washington for 10 years - longer than we expected when we first moved here. I get so excited, but also so nervous. I am very scared to leave all of Kaelyn's doctors and nurses. They have been so important in our lives for the past three years it is really hard to say goodbye and trust in new people. I know that once we meet the docs and nurses we will make good relationships too. It is just a very hard thing to do. I will miss them all very much. I also have made some very good friends here that have been an integral part of my sanity. But friends are friends no matter have far apart you are. I am also excited to finally be able to to a part of peoples lives in Utah that we have been missing for the past 10 years. Moms, dads, grandparents, cousins, aunts, uncles, friends......that will be a good thing.

It has been a crazy week. We put our house up on the market on Tuesday. I don't think I have ever been this good of a house keeper....maybe I can carry on some of that to the next house (maybe;) Kaelyn had her biliary drain snap in half this week. She was climbing up some stairs and it got caught under her knee and snap. Luckily all of the internal parts stayed put. So the next day we went into the hospital and had a cholangiogram and tube change. It went well. Then right after that we had her molds made for her hearing aids. She chose some really cute ones. Her molds will be clear with pink sparklies and the behind the ear part is a very cute pink. I hope that she will transition easily into them. I guess we will see. On top of it all, Kaelyn has had a nasty cold and is still on IV antibiotics from her last biliary infection.

We are going to have Kaelyn's birthday part this sunday since grandma and grandpa Perry and Aunt Amanda and Uncle Mike are both moving to Utah next week. It should be fun. She wants Dora everything.


Love to everyone,

Angie

Home

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...

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 and will be able to go home today. Fingers crossed.

Kaelyn was really funny yesterday. Her preschool teacher, Marilyn, came by for a visit and brought her a tiger mask from the zoo. Kaelyn loved it! I have never seen her so aggressive as when she put on the mask! She ran around the whole unit "scaring" all of the nurses, even other parents when they would come out of the rooms she would go right up to them and growl! It was so funny! She wore it for a very long time, even down to the cafeteria and play room. What a hoot!

Anyway, I guess that just shows you how good she is feeling, I think she needs to wear the mask when the docs come by and scare them into letting us go home today! Roar!

Love to all!

Angie

Back in...

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 be inpatient for atleast a couple of days.

Angie

In and out, in and out....

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 very well and acting very cranky. This is all usually a sign that things are heading for a fever. So far so good though...no fever through the night. But I am still leery. I guess we just wait it out. But we are heading for another weekend...that usually means time in the ER and two days spent without any action done....blah. Oh well...

On a different note, we are painting the trim of our house today...fun stuff! It really needs it. We scraped paint and taped the trim yesterday...not so fun stuff. But now it is already to look beautiful! So hopefully we can stay out of the hospital long enough to get this done.

Last wednesday we took Kaelyn in for her ENT appointment. He looked in her ears and of course couldn't see anything because of all of the wax. So he cleaned her ears, which was very tramatic, and everything looks good. She is cleared to get her molds done for her hearing aids. That appointment is scheduled for May 2nd. Then she will be fitted for the hearing aids the end of May. That will be very interesting. She hates things in her ears!

Right now everything is calm in the Perry house...whew...

Love,

Angie

Sludge Ball gone!!

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 ball in to two pieces and they got two pieces out, but Kaelyn is having white stools again with some burning bowel movements. That usually means that her tube is plugged. So I am wondering if maybe some debris was left over and has plugged up the tube. Bahhhh....oh well, at least the major obstacle is out. If we have to do a few more frequent tube changes so be it. I am just thankful and hoping that this will mean fewer infections for the sweety.

Well, the kids are on spring break this week, so we should have some fun. We might go to the zoo sometime as long as we can keep Kaelyn out of the hospital (knock on wood!).

Love you all!

Angie

Hearing Aids

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 severe high frequency hearing loss. So, she gets to have hearing aids. We started to go down this path after her first transplant, but then she had the recurrence in her lungs so we decided to wait on the hearing aids. Now that she is doing so well I think it is time to introduce them to her. With high frequency loss you cannot hear the softer consonants like sh, h, th, s, f sounds. After her hearing test I started to really listen to the way that she talks and pronounces her words. And she does not say these sounds, she substitutes t and d sounds for the soft consonants. So I think in the long run she will benefit from the hearing aids greatly. It is going to be a battle, I think, though at first to have her keep them in. Luckily we have a friend who wears hearing aids and she has been willing to show Kaelyn how they work and help me understand what life is like with hearing loss. Kaelyn also adores her, so that helps a lot! (Thanks Naiah!) One fun thing is that the ear molds come in lots of different colors and Kaelyn wants pink swirly ones with sparkles...of course!

So add one more change to our ever changing life.

Love,

Angie

AFP

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 months, cancer free!

She is still inpatient, hoping to go home tomorrow. I got to spend the night at home last night with Jacob. It was very refreshing. Jacob is doing well...I just love that boy! He is such a sweetheart.

Angie

Positive blood cultures (again...)

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 bile ducts look great and the narrowing is getting better, it's more elastic than solid, which is good. One thing that they noticed that may be causing all of these infections is a sludge ball in one of the bile ducts. It looks almost like a gall stone. The IR Doc tried to suction it out, but it didn't budge. So, the next tube change they are going to try and dissolve it a little with some special bile thinner stuff. Hopefully that will loosen it enough to were it can be suctioned out.

We are still inpatient and will probably remain such until Monday. Her cultures have come back positive two days in a row. Hopefully todays will stay negative. The docs need to have two consecutive negative cultures in order to send us home.

Love,

Angie

Donation button and badge...

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 feel obligated to donate. A lot of people ask me what they can do for us and I don't know what to say, so I decided to place this donation section on the website for the people who want to help but do not know how. We have incurred debt with Kaelyn's treatment and care and would greatly appreciate anything you wish to donate. Everything donated will go towards Kaelyn's medical care. But, once again, please don't feel obligated. Thank you for all that you have done for our special girl and our family.

The second new thing I have placed on the right side bar is a donation badge for cancer research, organ donation and Seattle Children's Hospital. I feel like I needed to be a part of this some how and felt that placing this option on our website would help us all feel like we are doing something to further these wonderful life saving causes. Especially after reading about the federal budget cuts for cancer research. Once again, do not feel obligated, just know that if you feel like donating to a worthy cause the ones I have placed here are a great option. Options that have saved Kaelyn's life more than once.

Well, I will try and update tomorrow after Kaelyn's clinic appointment. Hopefully all is well. Thanks again for keeping up with our family and support.

Love to all,

Angie

Kaelyn sick...

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...

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 letter to your representatives and the president. You can do it right from that website.

After you do that, tell everyone you know to do the same.

Another link that might be interesting to view is this story from ABC. It blatantly states that rare childhood tumors is one of the programs that will have to make cuts. It just made me want to cry and yell at the Bush administration and tell them Kaelyn's story. Just copy and paste this in your browser to watch: http://abcnews.go.com/Video/playerIndex?id=2879611

This is vitally important to so many children and adults who are facing cancer. It is not right that people will die just because of budget cuts.

Thank you so much for taking the time to help save lives. Kaelyn's life is a direct result of what can come about from research and clinical trials. Life is too precious to disregard.

Love you all,

Angie

Thanksgiving photo...

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..

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...

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 and set her in her carseat. I turned around to put the stroller away and on the seat was her biliary drain! I quickley turned back to Kaelyn and asked her frantically if she was alright, she said yeah mommy, it didn't hurt. It didn't hurt! I had accidentally pulled out an 18 inch long drain from her intestines and liver and she said it didn't hurt. I was relieved, but knew that back into the hospital we had to go. I called her transplant coordinator and she came and took a look at it and dressed it becuase if was a little leaky. She also called Dr. Horslen and he thought that it could wait until he looked at it in clinic in a couple of hours. So off we went to meet Wade, again, for lunch. During lunch Kaelyn started getting the chills and so we drove back into the hospital a little early. She got into clinic and was starting to fever. So we took blook cultures and she was admitted. The rest of the day was pretty frightening. Her blood pressure was low and her heart rate and temperature were high. She was given tylonal and a couple of boluses of fluids plus antibiotics. The nurses took her blood pressure every hour through the night and finally she started to stabilize. This morning she had an ultrasound to see how the bile ducts looked and to make sure there was not fluid collections anywhere. No fluid, but her ducts looked dialated. So back into IR to get a new drain placed. Luckily they old tract was still open so they were able to slip the new drain in fairly easily. And the end of the drama is, Kaelyn is doing much better sitting in her bed painting her fingers and hands with finger paints with a new drain in place. I felt really bad about the whole thing, but am really relieved that she is better now. Her cultures did come back positive this morning, so we will be in the hospital for a few more days. I am hoping that by Sunday we will be able to go home, but we will see.

Love to all!

Angie

Happy Girl...

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 better than inpatient! I would rather lose a little sleep at home with my family than be in the hospital (and so would Kaelyn, she always says she is so excited to be together as a family!).

Love to all!

Angie

Not home...

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 "nothing is going to happen to this liver". He said that we just need to fix this narrowing and things should be fine...she may have to have a second drain placed just because of the positioning of this area, but there is no evidence of damage in any other part of the liver. That was the best news! He thinks that this is just a temporary thing and once we get it cleared her liver should be fine! I was so happy when he said this. "Nothing is going to happen to this liver"...music to my heart.

Unfortunately this tube placement was not so easy on Kaelyn. We are still in the hospital two days later. She got a blood infection from the placment of the drain and started to get fevers and chills. Luckily we were here and they started antibiotics right away, so no sepsis....thank heavens. But because of the postitive blood cultures we are still here. Hopefully tomorrow all of the lab results will be back on what antibiotics are best for this bug and we will be able to go home with IV meds. Atleast she is feeling much better.

Love to all!

Angie

In Cholangiogram

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 display in San Francisco at the NACHRI (National Association of Children's Hospitals and Related Institutions - now that's a mouth full!)spring conference from March 14-17th. The exhibit will then go to Washington DC and be on display on Capitol Hill sometime in June. Pretty cool, huh! She sure has changed.

Well, we should be home tonight as long as all goes well. Love to you all!

Angie

Kaelyn home

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 over party this weekend. He had a great time, he said he never went to sleep (though the mom of the friend said that everyone was asleep by about 10:30 pm). He was pretty tired the next day though, but not too grumpy. I can't believe how much he has grown! He has his first loose tooth too! What a big kid!

I love my kids...they are such a joy to me and bring so much light to my life. What a miracle they both are.

Love,

Angie

jinxed

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!

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 preschool and all of the snow we have had lately! It has been a very cold and unusually snowy winter here in washington. But the kids (and me!) love it!

Love to all of you!
Angie

"Bob" is gone!

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 wonderful Christmas. It was hospital free, my christmas wish. The presents were so much fun to watch the kids open! They had a blast (and so did Wade and I). What a joyous, happy day. I am so thankful for all of the many wonderful blessings, friendships and family that we have enjoyed during the past year. Thank you all for your support and love, it means everything to me.

I have to share a fun experience that we had last night. We took the kids to McDonalds for a end of the winter break dinner. Afterwards Jacob started playing inthe play place. Now, this play place involves a lot of climbing up plastic tubs and sliding down large slides. Jacob, of course, was all over it. Kaelyn really wanted to play too. The first time she climbed up the first two steps and just started bawling. So I went and got her and she said that she didn't want to play. But she kept looking at the other kids having fun. Both Wade and I were feeling really bad that she was not able to do what other three years were doing. But, without any encouragement from us she tried again...she made it to the inside of the first tube and came out saying she didn't want to do it. So Wade said that he would follow her up and catch her if she slipped. She said okay and went up with little help and came down the slide just giggling and grinning! She did that a couple of more times with Wade behind her (yes we broke the rules, he is over 12). Jacob was being so helpful too, he followed her up a couple of times - what a good big brother. Finally she said she wanted to do it all by herself! And she did! It was the best moment seeing her realize that she can do it. It built her confidence so much! It just makes me want to cry with joy! This morning she woke up and said, "Mom - I'm proud of myself for climbing in McDonald's". Such a sweet moment.

Love to all!

Ang