Christmas ect...

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...

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

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

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 we were visiting G-ma and G-pa Perry after Thanksgiving, she spiked a fever. The next morning I took her to the Urgent Care Clinic in Logan. They said, it's just a virus...I could not convince them otherwise. But she was doing better that day, so I went along with it. Mommy-senses told me otherwise. That night, she once again spiked a fever. But not as high, so I though she was getting better and she did well the rest of the day. Sunday night we went and got labs drawn, normal every two week labs. That night, once again - fevers. So I called the Liver doc and told them what was going on. They called me back after reviewing her labs and said that her liver numbers were up again and she was pretty dehydrated so they thought it best to admit her. I packed a bag and off we went. This was Monday afternoon. Monday evening and all through the night she fevered almost constantly. Her high was 105.3. She has not had a fever that high since she went into septic shock in Seattle. I was never so happy to be in the hospital. Today the docs are trying to figure out what is going on. Virus, liver, bacteria in the blood, appendicitis? The consensus for now is a possible abscess in her liver where a bile duct may not be draining properly or a bad virus. I hope it is the latter. We are going to do a CT Scan either today or tomorrow to check her liver.

Right now, she is sleeping and not fevering. They have started her on IV antibiotics and that seems to be helping. I will update when I find out more info.

As a side note...our Thanksgiving was great. We were able to spend it with my parents at their home. I have not been able to do that in many years! It was fun reminiscing with my mom and sister about how our favorite job on Thanksgiving as kids was to put the Cheese Whiz on the Celery. Isn't funny what you remember! I hope I can help my kids make those kind of fun, silly memories to think back on. Then we went up to Logan to spend time with Wade's parents. We helped them pick out a Christmas tree and decorate it. The kids really had a blast. Then when we got home we decorated our tree. Kaelyn was so proud that she was the one the spent the most time decorating. Jacob got a little tired (bored) and let her do most of it.

Time is precious and fleeting. Enjoy what you have, you may not have it tomorrow. If I have learned anything from life as Kaelyn's mom, it is to enjoy your time, love your family, don't worry about the little things. Take each moment, a moment at a time. As Elder Wirthlin said, in his last General Conference talk, before he passed away, "Come what may, and love it."

love,
Angie

Day to day

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 happy all at once and it gets confusing. Poor thing! She has also been sick this week. Since we had to triple her immunosuppression she has been catching everything that goes around. Hopefully we will be able to taper that back a little too.

The kids are so excited for Halloween. Kaelyn is going to be a black cat and Jacob is going to be a vampire. Should be a blast! As soon as I find my camera (ugg...can't find it since I cleaned last....)I will post some more pics!

Love,

Angie

A little rejection anyone?

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 her "surgery". Kaelyn told me that she doesn't remember having surgeries in the past and she was really scared. She said that she didn't want to have a surgery for 1000 years. It was really heart saddening. When she came out of the biopsy she asked me if she had her surgery yet, so I guess it all went well. The results are, that she is in mild rejection. We think that this all came about from her many colds in the past month. Her immune system bump-stared and started to go after her liver. She is on Prednisone (Steroids) and we upped her immunosuppression meds. Kaelyn on Steroids is not a pretty picture. She has many, many mood swings and is impossible to get to bed at night. Luckily today was her last high dose and she goes to a maintenance dose tomorrow. If her labs look better tomorrow than we will start to wean her off. We caught this quick, so I don't think that there will be any lasting effects. She will be fine and soon, steroid free (yeah for all of us!).

It's always a roller coaster, isn't it....

Love ya,

Angie

Kindergarten and 3rd grade

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 home early as her birthday present. I don't think it turned out to be too bad of a day. He really likes his teacher and has a few friends from last year in his class. Everyday he comes home and tells me that he learned a new letter in cursive today and that he is learning multiplication. He loves school (boy, am I glad!) Another big milestone for Jacob was his baptism into the Church of Jesus Christ of Latterday Saints last saturday. It was quite a special day. He was so excited. I was pretty darn proud of him for making that decision. I think I cried a lot that day! Happy tears though. I am still in shock that I have an eight year old. He should be a toddler!

Kaelyn started Kindergarten this year. She really loves it. It's fun to see her in her way-too-big for her backpack walking to class. She is learning sight words, the prospect of reading is really exciting to her, and having a blast meeting new friends. She,unfortunately, has already missed a few days of school due to illnesses. Her immunosuppression is getting her down while her body gets used to all those new germs. I think things will be better as the year goes by. She is still liver healthy and cancer-free. What a joy!

I have started up school too. I am going to the Utah State University Extension pre-Nursing program here in Tooele. Right now I am taking generals and pre-req's for the course online. I am really enjoying it. I get most of my school work done while the kids are in school. It took me a few days to blow the cobwebs out of my brain and get into the swing of things. I have always loved school, and it feels really good to get out there and work toward my goals.

Wade is working really hard to support me in this and has taken a second job. He has always wanted me to go back to school, but circumstances prevented it until now. What a wonderful husband I have. He is doing all he can to help me succeed. I am so thankful for that. I am also so thankful that we are blessed with health and time to be able to do these things.

A joyful life....

Love,

Angie

Happy ER visit?

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 was using a prop, a wooden dowel (oops on mom's part). Maybe you can see where I'm going with this. She dived with dowel in hand and the dowel ended up poking her in her eye.....it was not fun. She was bleeding from her eye and she said she couldn't see. So, we rushed her into the ER here in Tooele. The doc looked at her eye through the fancy eye microscope and then dyed her eye yellow and looked at it with a black light. Happily, no cornea damage or scratches. Just a big bruise and some burst blood vessels. Jacob thought all of the scientific stuff was way cool and had Kaelyn interested by the end too. Happily ever after.....

A normal kid ER visit! Wow, we really are progressing into 'normalcy'.

In other news...school starts this week. Jacob will be in third grade and Kaelyn starts Kindergarten next week. I can't believe my eyes when I look at these two. They just grow so fast.

Jacob also has his 8th birthday on thursday, consequently the same day school starts. What a present, the first day of school!

I also added some more pics to the flickr account. It has some from Jacob's birthday party and a few extras.

love,

Angie

Kaelyn Repeat CT

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 times before they could get the IV in, and she didn't even cry. She just told them that she doesn't like it when she has to get poked. And then went on to talk about how she gets to start kindergarten this year (while they are poking her!). Brave little girlie.

We just got back a few days ago from a Perry family reunion. We all had such a great time. The kids had so much fun playing with all of their cousins! I really miss that WA clan. All of the kids got to ride Wade, Jacob, and Uncle Jim's dirt bikes and I think they all had a blast. Wade did a head dive over the handle bars and got bruised up pretty good, but overall they all had fun (he's fine, honestly). Lots of good times.

Kaelyn and Jacob start school in three weeks (the first day of school just happens to land on Jacob's 8th birthday - he's a little bummed about that). Kaelyn is so excited, she keeps asking me when she can go to kindergarten. I am just amazed and so thankful that she is making it to this milestone, healthy and well. What a humongous blessing. And Jacob starts 3rd grade! I remember 3rd grade...he also is going to be baptized soon after his birthday. I am so proud of him. He is growing up faster that I can stop him!

Well, I will update more as I hear about the scans.

Love,
Angie

Kaelyn and Jacob

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

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. But over all, we are ecstatic with the results!

Love,
Angie

AFP

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

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 think my little girl is really Ariel the Little Mermaid in disguise! She loves to swim! She really hasn't had much of a chance to be able to swim in her almost 5 years. So it is so fun to watch her in the water!

She also is very excited,Sunday is her 5th birthday. She keeps asking me if she will be as tall as a grown-up when she is five! Seeing how that is in less than a week, and she is only 3 foot 1, I am guessing it's not going to happen! Oh, and this is a funny one, what she really wants for her birthday is a little sister....that one too, is not going to happen in less than a week! Kaelyn is growing up so fast...though she can't see it in the mirror, I can see it in her. What a blessing, our little girl, who was said was not going to make it past 2 is going to be 5 years old. What more can I ask for.

Love,

Angie

Doing great

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 a few months.

Her immunosuppression level is still a little high, so we will keep ratcheting her meds down until we get it at the right level. But we can handle this! Med dosing is easy breezy compared to cancer...

Wade and I just recently celebrated our 11th anniversary (a little early). We actually left the kids for the night with G-ma Young. This is the first time in almost 8 years that we have had an overnight stay with no kids. It was amazing! We went out to Wendover, NV. I know that doesn't sound amazing, but we had a lot of fun. We went on an ATV tour through the mountains there and that was a blast! We got to overlook the Salt Flats where the "Worlds Fastest Indian" was filmed. And where they hold speed week in the summer. We also saw big horned sheep. It was so much fun! We also got to just ride as fast as we could on a huge flat area....I never knew I was a speed demon! So fun.

We also just purchased a little dirt bike for Jacob. He is loving it. Still learning, but really enjoying it. Wade also is getting a dirt bike and they are going to go trail riding in the summer. Our long term plan is to eventually get a four wheeler for Kaelyn and I so we can come a long and be the "pack horse". It should be great fun!

Jacob had a fall the first time he road and split his lip. Yes, he did have a helmet on, but it wasn't fitted properly. We fixed that. I admit I was a little wary of him riding after I saw him come home with a lip the size of a golf ball! But he wanted to jump right back on, which it good...mama worries though!

Love ya all!

Angie

Tonsils

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 is going to be a kindergartener!!! It is very surreal. If you asked me four years ago when she was diagnosed if I thought she would be able to go to kindergarten, I don't know if I could have answered. She has been blessed in so many ways. She wanted to go to class right away. It's hard to explain that she has to wait until August to go to kindergarten!

love,

Angie

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

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 white
Milk
Peanuts
Walnuts
Soy
Corn
Wheat

Any suggestions on what to feed this child? I am pretty overwhelmed. But a wonderful woman in our ward at church has just stopped by and left a huge box full of supplies and cookbooks for me to look over. Her son has many of these same food allergies. She mentioned how when her child was tested for these allergies she had no one to turn to for advice. So when she heard about Kaelyn's allergies she came right over and wanted to lend her knowledge and support. I haven't slept for a week worrying about what to feed my daughter who is allergic to all the good things under the sun, but now I have a resource and a new friend to help me through. She was definitely inspired to come today. I think I will actually be able to sleep tonight.

Now, to get to what I have been wanting to write about since Kaelyn's journey started but haven't had the words to explain.

A friend of mine, whose son, Boo also was diagnosed with Hepatoblastoma, posted this analogy written by a friend of hers whose daughter, Lindsey has hepatoblastoma (are you feeling a little dizzie with that explanation?). It struck home in mine and Wade's heart. We have been searching for a way to explain why we are not the same people anymore after this on going battle. I know that those of you who have not had cancer directly in your lives strive to understand, but it is not the same as living with it. This kindof explains why:

"Having childhood cancer invite itself into our home, our lives, and our precious little [Kaelyn] has been the best and the worst event of our lives. The childhood cancer experience can be best surmised by relating it to a tornado. It was the single most terrifying experience that our family has ever experienced.

Our personal tornado hit us without warning. No sirens announcing its coming and absolutely no chance to prepare. It was upon us in an instant and we were all being tossed about on the raging winds of uncertainty. We were all scared and quite literally face to face with the very real presence of death.

In an effort to comfort those that are currently being tossed about in those same winds of uncertainty at this very moment I could lie... I could tell you that my family survived unscathed. I could say that once the storm passed we embraced the sunny skies and that we've been living happily ever after. The problem is that anyone that has ever been swept up in this tumultuous tempest would most likely take offense to that and rightfully so. They would take offense because deep down they know the
truth...

When the tornado called childhood cancer hits your home and your family it quite literally destroys it. It rips off the roof, shatters the windows, and tears the entire structure from its foundation. It will leave in it's wake a bittersweet longing for the way things used to be, a euphoric sense of victory through faith for having survived, and a heartfelt desire to build anew on that old foundation of family and home with newfound insight into what is truly important. "
~Lindsey's papa, Jeff
http://www.lindseyann.net

I am not the same Angie that I was just four short years ago. I am changed, sometimes I think for the better, but sometimes I feel I have lost some innocent past that I long for. I know that I am more compassionate and have a more complete understanding of why our lives are so precious. I love my family unconditionally and I can say this truthfully with no hindrance. They are what matters. I know my faith is real. It has pulled me through the tornado and brought me and my family out the other side.

I want to quote Boo's mom, Trudi - "The most compelling part of it all is that those things that used to be important simply are NOT!!! I speak for myself, not Owen [Owen is her husband], when I tell you that I sit in a room with people ALL THE TIME listening to conversations about things that they believe to be great or things that they believe to be terrible and I spend the majority of the time saying to myself “I don’t care about that crap anymore.” I have bigger and better things to worry about and it is in that moment that I realize I’ll NEVER be the same."

Perfectly said Trudi. I feel the same way....

I know this is kindof a raw, emotional post, but this explains our life for the last four years and why we are not that same, and will never be the same.



~Angie

It's been a while!

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 tummy pain for quite some time, which happens to be other symptoms of PTLD. So we had her labs checked for EBV (Epstein Barr Virus) which is the main cause of PTLD in transplant kids. 95% of PTLD cases are caused by EBV, which in a healthy no transplant person can cause Mononucleosis. Also most people have the dormant EBV in there body already. Anyway, her test was negetive for EBV, thank goodness. We are considering have her tonsils removed. Tonsils are just a factory and storage facility for bacteria. They are so huge that she snores at night and does complain that it is hard to swallow. One more surgery to add to the pile. But I will take tonsilitits to cancer any day!!!

Besides all of this craziness... we really had a wonderful Christmas. The kids had so much fun! I think it is more fun for me to watch them now that they are older! They are so excited! We also drove to WA on Christmas day to be with family there for about a week. That was great to go back to visit with all of the cousins and family. I also go to visit some really wonderful friends that I miss dearly. That was good for my heart.

Kaelyn and Jacob got to go iceskating and swimming while we were there. That was really a hoot! Jacob loved iceskating, or ice falling in his experience! He would look like he was trying to run on the ice! Run, run, run, fall....slide.....laugh and back up again! Kaelyn only went around the rink a few times, but she really had a blast with her cousins. She more enjoyed the swimming. It was her first time in a pool post tube removal! She was our Little Mermaid, it was wonderful!

The only downer to the whole trip was when we lost our luggage on the freeway! Boy was that exciting. We had a luggage rack thing on the top of Wade's parents car. It was really windy in Snoqualmie pass and the next thing we knew our luggage had freed itself and went rolling on the freeway, run over a couple of times and exploded. Wade's parents clothes were pretty much destroyed. Luckily mine and Wades were in a heavy duty suitcase and were okay. We lost a few things, including Jacobs precious collection of WII games. I think that was the biggest fatality. He just about cried when we told him, and honestly so did I (that's a lot of $$ spread out on I-90) But Nintendo has a really good replacement deal. If you send them the broken disks they will sell you a new one for half price. So we were able to get atleast a few back for him. One of the games was what he had just gotten for Christmas...but we should be getting the replacement soon. Luckily the WII console and all of the kids clothes and toys were in the cab of the car with us instead of the lugguge rack. Anyway...life goes on, and WII will be fine! ;)

I must write some of the thankfulness I have in my heart for the many blessings that we have received. I think I would be have broken down with out my faith in our Savior and in a loving Heavenly Father. I know they have carried me through the most difficult moments of this journey. Kaelyn has been carried in the arms of our Savior through most of her little life. This I am most greatful for.

I know that He lives and loves us individually.

Love to you all...

Angie