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
Tuesday, May 06, 2008
Monday, March 24, 2008
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
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
Sunday, February 24, 2008
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
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
Sunday, February 10, 2008
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
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
Monday, January 14, 2008
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
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
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