We thought this would be a "routine" hospital stay - Katie would get the antibiotics, she would get better, and then we would go home. It hasn't been that simple or easy.
Katie tested positive for a virus, but they aren't sure if something else is going on. They are running more tests. Katie's fever keeps spiking. This morning it hit 104.3, and it has gone up and down all day. Her heart rate has continued to be very high and her blood pressure dropped really low today.
It was a difficult night last night and a hard day today. Katie has gotten worse, not better. The doctors took another chest x-ray tonight - we are still waiting on the results. All of her levels have dropped. Yesterday her ANC (immune system) was at 406 (the average persons is 2,000). Today her ANC was 68! So her body has nothing to fight with. They now have her on 3 different antibiotics and continuous fluids. The doctors are talking about her needing a blood transfusion and possibly platelets.
We need prayers - Katie needs prayers. Please pray for Katie.
NEW UPDATE- Katie's latest blood work came back. Her ANC is now at 17. Her Hemoglobin is 9.7. Her white blood count is .7. Her platelets are 104. They aren't going to do any transfusions tonight, but we think she will definitely need a blood transfusion tomorrow. We have learned from experience that when Katie gets in the 9 range she needs a transfusion. Also, I forgot to say what I was glad about today. I am glad Scott was able to take some time away from work to be here with us. Things are always better when "Daddy" is here.
Saturday, December 8, 2012
Friday, December 7, 2012
Day 395
To our suprise, Katie was admitted to the hospital today. We were told she would need to be here for a minimum of 48 hours and possibly longer depending upon how things go.
Katie had a low grade fever last weekend, but then she was fine...or so we thought. Although she has has been noticeably weaker this week. She has been saying, "my legs are tired of walking." I can remember asking Scott, on Wednesday evening, if Katie seemed okay. He asked me what I meant, and I said I wasn't sure, but that she just didn't seem okay to me. That night she woke up crying a few times. She didn't have a fever, but oddly her feet were burning hot. It was the strangest thing! By morning her feet felt normal, although she said she felt nauseous. Then last night, she cried every hour during the night. Her feet felt hot again, and then as the night wore on she got a fever. Scott was working and I wasn't sure what to do. We are not allowed to give medication without calling the doctor, but we are told to call only if her fever is over 101. Her fever stayed in the 100 range during the night. It hit 101.6 by 7:30 am. Scott got home around the same time. We called the clinic when they opened at 8. We knew they would tell us to bring her in, but we figured they would just give us a prescription and send us home. However, Katie's blood work came back showing that her levels had all dropped - and dropped so low that she needed to be hospitalized. So here we are.
Katie has had a cough for a few months now, and the doctors knew that. But her cough has gotten worse in the past week. They did x-rays today and we were told there is "a thickening." Although they don't know yet if it is viral or bacterial. Phenomena?? They have stopped Katie's chemo for now, until she gets better - which is good and bad. The doctor forgot to order Tylenol for Katie and her fever got up to 103.7 this evening, before we were able to get her the Tylenol. Frustrating! Her heart rate has also been very elevated all day.
Once again today, we have been reminded by those we have seen around us, how we are blessed. There are so many children who have been sick for years. Our hearts go out to them and their parents. We are glad for all the blessings we have in our lives. We are glad for the time we have to be together as a family. On a funny note, Conner thinks the hospital is come kind of resort - free food, drinks and movies. He said, "This hospital is very cool!". Yes, well, he isn't the one getting all the pokes! Katie doesn't think it is so cool! She is ready to go home. Me too.
Katie had a low grade fever last weekend, but then she was fine...or so we thought. Although she has has been noticeably weaker this week. She has been saying, "my legs are tired of walking." I can remember asking Scott, on Wednesday evening, if Katie seemed okay. He asked me what I meant, and I said I wasn't sure, but that she just didn't seem okay to me. That night she woke up crying a few times. She didn't have a fever, but oddly her feet were burning hot. It was the strangest thing! By morning her feet felt normal, although she said she felt nauseous. Then last night, she cried every hour during the night. Her feet felt hot again, and then as the night wore on she got a fever. Scott was working and I wasn't sure what to do. We are not allowed to give medication without calling the doctor, but we are told to call only if her fever is over 101. Her fever stayed in the 100 range during the night. It hit 101.6 by 7:30 am. Scott got home around the same time. We called the clinic when they opened at 8. We knew they would tell us to bring her in, but we figured they would just give us a prescription and send us home. However, Katie's blood work came back showing that her levels had all dropped - and dropped so low that she needed to be hospitalized. So here we are.
Katie has had a cough for a few months now, and the doctors knew that. But her cough has gotten worse in the past week. They did x-rays today and we were told there is "a thickening." Although they don't know yet if it is viral or bacterial. Phenomena?? They have stopped Katie's chemo for now, until she gets better - which is good and bad. The doctor forgot to order Tylenol for Katie and her fever got up to 103.7 this evening, before we were able to get her the Tylenol. Frustrating! Her heart rate has also been very elevated all day.
Once again today, we have been reminded by those we have seen around us, how we are blessed. There are so many children who have been sick for years. Our hearts go out to them and their parents. We are glad for all the blessings we have in our lives. We are glad for the time we have to be together as a family. On a funny note, Conner thinks the hospital is come kind of resort - free food, drinks and movies. He said, "This hospital is very cool!". Yes, well, he isn't the one getting all the pokes! Katie doesn't think it is so cool! She is ready to go home. Me too.
Sunday, December 2, 2012
Day 390
Katie has been sick the past few days. She came down with a low grade fever Friday evening. Her fever broke last night, but she is still having tummy troubles, so she wasn't able to go to church today. (Which was a huge disappointment to her!)
I recently commented about Katie getting older and being able to verbalize her feelings more. This has been so evident during this past month! Katie has been very nauseous since her last round of treatments. This caught us by surprise. Katie has always gotten nauseous after treatments. However, this time was different in that she has been telling us she feels like she was going to throw-up (daily) over an extended period of time, and she has regularly requested her anti-nausea medicine. Her chemo hasn't changed, it is the same as before, so we know it isn't that. I believe she has probably always gotten this nauseous (for this long) after treatments, but now because she is older, she is better able to recognize and express how she is feeling. She is also able to tell us what medicine tastes "yucky" with different kinds of liquids. What a great blessing this is! What a relief it must be for her - to be able to tell us more clearly how she feels and what she needs. I am so glad for that! I know it is a relief for me! It was so hard when she was younger to know (guess) at what she was feeling and what she needed. When this started a year ago, she didn't even know what nauseous meant - now she does - which isn't that great - but if she is going to be nauseous - which she is - then it is great that she can tell us how she is feeling!
It is a comforting thought to know that God knows us and our needs. I know He knows what Katie needs (and needed) even if and when I don't. It is also comforting to know that He knows what I need (and needed) even if and when I don't. Elder Bednar said: “The Lord knows who we really are, what we really think, what we really do, and who we really are becoming” (“Things as They Really Are,” CES fireside for young adults, May 3, 2009).
Neal A. Maxwell said: "God has known you individually...for a long, long time (see D&C 93:23). He has loved you for a long, long time. He not only knows the names of all the stars (see Psalm 147:4; Isaiah 40:26); He knows your names and all your heartaches and your joys! ("Remember How Merciful the Lord Hath Been," Ensign, May 2004, 46).
I recently commented about Katie getting older and being able to verbalize her feelings more. This has been so evident during this past month! Katie has been very nauseous since her last round of treatments. This caught us by surprise. Katie has always gotten nauseous after treatments. However, this time was different in that she has been telling us she feels like she was going to throw-up (daily) over an extended period of time, and she has regularly requested her anti-nausea medicine. Her chemo hasn't changed, it is the same as before, so we know it isn't that. I believe she has probably always gotten this nauseous (for this long) after treatments, but now because she is older, she is better able to recognize and express how she is feeling. She is also able to tell us what medicine tastes "yucky" with different kinds of liquids. What a great blessing this is! What a relief it must be for her - to be able to tell us more clearly how she feels and what she needs. I am so glad for that! I know it is a relief for me! It was so hard when she was younger to know (guess) at what she was feeling and what she needed. When this started a year ago, she didn't even know what nauseous meant - now she does - which isn't that great - but if she is going to be nauseous - which she is - then it is great that she can tell us how she is feeling!
It is a comforting thought to know that God knows us and our needs. I know He knows what Katie needs (and needed) even if and when I don't. It is also comforting to know that He knows what I need (and needed) even if and when I don't. Elder Bednar said: “The Lord knows who we really are, what we really think, what we really do, and who we really are becoming” (“Things as They Really Are,” CES fireside for young adults, May 3, 2009).
Neal A. Maxwell said: "God has known you individually...for a long, long time (see D&C 93:23). He has loved you for a long, long time. He not only knows the names of all the stars (see Psalm 147:4; Isaiah 40:26); He knows your names and all your heartaches and your joys! ("Remember How Merciful the Lord Hath Been," Ensign, May 2004, 46).
Saturday, November 24, 2012
Day 381
We have so much to celebrate and be thankful for this year. Scott was working on Thanksgiving day, so we had our Thanksgiving dinner at the fire station with the other fire fighters and their families. We have done this before and it is always a nice day. We then spent all day Friday at an Epps' family reunion. Which was also a very nice day. Katie and Conner had a lot of fun riding ponies, going on a hay ride, and catching baby chicks.
The hard part of this week was that Katie was just coming off of her steroids, and she was now getting hit by the chemo she had gotten the previous week. The chemo takes about 7 - 10 days before the effects really kick in. The past 3 mornings Katie has woken up crying and saying she felt like she was going to throw up. She asked for her anti-nausea medication (that was a first!) and she has been pale and very very shaky. Her blood sugar seems to drop really low during the night and when she wakes up in the morning she breaks out into a cold sweat, gets sick to her stomach and shakes. It is always very disconcerting. It always gets me...scared, agitated, upset...when it happens. It is hard to see her wake up this way. We give her juice, the anti-nausea medicine and a banana. That has seemed to help her (this week). She was shaking so bad yesterday morning that for a few seconds I thought maybe she was having a seizure or going into convulsions. It is hard way to start the day. However, she seems to recover well, and for the most part - at least to others - she seems fine the rest of the day.
This past week I realized how much Katie has changed, as she is growing up, through the process of all of this. When this started, Katie was only 2 years old and she could not verbalize how she was feeling, or what was going on with her. I am glad and grateful that she is now able to tell us when she is nauseous or doesn't feel well. Katie is now able to tell me if things are too hard, or she is too tired. Last week Katie told me, "Mommy, my body hurts." I was so glad she was able to communicate that with me! That was the day I realized how far she has come during this process, and I realized how very grateful I am that she can now voice her feelings to me more clearly.
I also realized there is one thing that hasn't changed during this past year. Katie still has never said a word to her doctors or nurses. She just smiles and/or cries and shakes her head, but she has never spoken to them. -- Katie tells me she is "shy." And she is shy (around others she doesn't know well), but she is also the sweetest girl I know! - And I am not just saying that as her mother - Katie is the sweetest little thing. Scott and I often comment to each other about her sweetness. Even the sound of her voice is sweet - and her laughter too. Just thinking about her makes me smile. What a joy she is to be around!
"Wherefore, be of good cheer, and do not fear, for I the Lord am with you, and will stand by you" (D & C 68:6).
The hard part of this week was that Katie was just coming off of her steroids, and she was now getting hit by the chemo she had gotten the previous week. The chemo takes about 7 - 10 days before the effects really kick in. The past 3 mornings Katie has woken up crying and saying she felt like she was going to throw up. She asked for her anti-nausea medication (that was a first!) and she has been pale and very very shaky. Her blood sugar seems to drop really low during the night and when she wakes up in the morning she breaks out into a cold sweat, gets sick to her stomach and shakes. It is always very disconcerting. It always gets me...scared, agitated, upset...when it happens. It is hard to see her wake up this way. We give her juice, the anti-nausea medicine and a banana. That has seemed to help her (this week). She was shaking so bad yesterday morning that for a few seconds I thought maybe she was having a seizure or going into convulsions. It is hard way to start the day. However, she seems to recover well, and for the most part - at least to others - she seems fine the rest of the day.
This past week I realized how much Katie has changed, as she is growing up, through the process of all of this. When this started, Katie was only 2 years old and she could not verbalize how she was feeling, or what was going on with her. I am glad and grateful that she is now able to tell us when she is nauseous or doesn't feel well. Katie is now able to tell me if things are too hard, or she is too tired. Last week Katie told me, "Mommy, my body hurts." I was so glad she was able to communicate that with me! That was the day I realized how far she has come during this process, and I realized how very grateful I am that she can now voice her feelings to me more clearly.
I also realized there is one thing that hasn't changed during this past year. Katie still has never said a word to her doctors or nurses. She just smiles and/or cries and shakes her head, but she has never spoken to them. -- Katie tells me she is "shy." And she is shy (around others she doesn't know well), but she is also the sweetest girl I know! - And I am not just saying that as her mother - Katie is the sweetest little thing. Scott and I often comment to each other about her sweetness. Even the sound of her voice is sweet - and her laughter too. Just thinking about her makes me smile. What a joy she is to be around!
"Wherefore, be of good cheer, and do not fear, for I the Lord am with you, and will stand by you" (D & C 68:6).
Thursday, November 15, 2012
Day 372
Katie went to the clinic/hospital yesterday for another spinal tap and IV chemo. We have been doing this regularly for a year now, and it hasn't gotten any easier.
Katie sobbed when she found out where we were going. And then she cried even more when it was time to get her "poke." I teared up when they were wheeling Katie & I down the hall just prior putting her asleep for her procedure. I sit on a bed and hold Katie while they put her to sleep. Once she is under, I quickly slide out of the bed and the nurse ushers us out. It is hard. It doesn't seem to get easier. (Scott says he thinks it has gotten easier, he says Katie and I don't get as upset as we used too - I don't know about that...it doesn't feel easier! - I am always glad to have Scott there with us, that does make it "easier").
As usual, I was holding Katie in my arms as she was waking up from the anesthesia. Once again she was looking past me when she awoke. I asked her if there were angels with her and she confirmed there were. I asked her if she wanted a drink and she declined. She said she was hungry. I told her she needed to drink first, and I again offered her a drink, to which she again declined. She looked past me again. I asked her if the angles were still there and she shook her head "yes." I asked her if Papa was there (my dad) and she again shook her head "yes." (Prior to the procedure, I prayed she would have angels attending her, and asked that my dad be there, if it was possible). Later, when she was fully awake, she still said there had been angels there, but she couldn't remember details. I don't know the details, but I do believe she had angels ministering to her. I am always glad for ministering angels!
If there was such a thing as cheerleaders for a family, our family has several of them. Today, I had 3 of those "cheerleaders" cheer us on as we move on into this "next year" of Katie's treatments. My mom called me tonight to see how we were all doing - she has been a constant support for us and I am so grateful to her. I also got two cards in the mail today for my nieces, Tebbanie & Natasha. They have been constant source of support, love and encouragement. I am deeply grateful to them. I am going to quote the quotes they sent me today.
"When we can no longer change a situation, we are challenged to change ourselves" (Viktor Frankl - and Tebbanie).
Natasha's quote came from General Conference 2011. "I know that your quest...may seem overwhelming at times. Please do not become discouraged with your progress. I think back on my experience hiking with my children. We agreed that every time we stopped to catch our breath, rather than focusing exclusively on how much farther we needed to go, we would immediately turn around and look down the mountain. We would take in the scenery and say to each other, "Look how far we've come." Then we would take a deep breath, quickly turn, face uphill, and start climbing again one step at a time" (Matthew O. Richardson, Oct. 2011). I am grateful for those perspectives, as we look back on this past year, and see how far we have come! --Thank you!
Katie sobbed when she found out where we were going. And then she cried even more when it was time to get her "poke." I teared up when they were wheeling Katie & I down the hall just prior putting her asleep for her procedure. I sit on a bed and hold Katie while they put her to sleep. Once she is under, I quickly slide out of the bed and the nurse ushers us out. It is hard. It doesn't seem to get easier. (Scott says he thinks it has gotten easier, he says Katie and I don't get as upset as we used too - I don't know about that...it doesn't feel easier! - I am always glad to have Scott there with us, that does make it "easier").
As usual, I was holding Katie in my arms as she was waking up from the anesthesia. Once again she was looking past me when she awoke. I asked her if there were angels with her and she confirmed there were. I asked her if she wanted a drink and she declined. She said she was hungry. I told her she needed to drink first, and I again offered her a drink, to which she again declined. She looked past me again. I asked her if the angles were still there and she shook her head "yes." I asked her if Papa was there (my dad) and she again shook her head "yes." (Prior to the procedure, I prayed she would have angels attending her, and asked that my dad be there, if it was possible). Later, when she was fully awake, she still said there had been angels there, but she couldn't remember details. I don't know the details, but I do believe she had angels ministering to her. I am always glad for ministering angels!
If there was such a thing as cheerleaders for a family, our family has several of them. Today, I had 3 of those "cheerleaders" cheer us on as we move on into this "next year" of Katie's treatments. My mom called me tonight to see how we were all doing - she has been a constant support for us and I am so grateful to her. I also got two cards in the mail today for my nieces, Tebbanie & Natasha. They have been constant source of support, love and encouragement. I am deeply grateful to them. I am going to quote the quotes they sent me today.
"When we can no longer change a situation, we are challenged to change ourselves" (Viktor Frankl - and Tebbanie).
Natasha's quote came from General Conference 2011. "I know that your quest...may seem overwhelming at times. Please do not become discouraged with your progress. I think back on my experience hiking with my children. We agreed that every time we stopped to catch our breath, rather than focusing exclusively on how much farther we needed to go, we would immediately turn around and look down the mountain. We would take in the scenery and say to each other, "Look how far we've come." Then we would take a deep breath, quickly turn, face uphill, and start climbing again one step at a time" (Matthew O. Richardson, Oct. 2011). I am grateful for those perspectives, as we look back on this past year, and see how far we have come! --Thank you!
Thursday, November 8, 2012
Day 365 - One Year!
One year ago today, we were in the hospital and the doctors confirmed our fears about our sweet baby girl, Katie. We were told Katie had Leukemia. We were told her bones were 95% filled with cancer blasts. We were told she would have to undergo chemo treatments for 2 & 1/2 years - beginning immediately.
It has been a very long journey for such a little girl. It wasn't a coincidence she was Supergirl for Halloween. I chose that costume for her, because I felt it was appropriate for what she has gone through, and (in a way) represents who and what she is. Katie has been strong and courageous! She has had to face demons that most other children her age don't ever have to think about - don't even know about. She has had to endure many fears and go through a lot of pain. There have been many sleepless and restless nights. There have been many tears she has shed. And a lot of "I don't wants" (I don't want a poke, I don't want to take medicine, I don't want to go to the hospital, I don't want to die...) However, through it all Katie has come shinning through with humor, big smiles, and a positive attitude. She has had to endure so much at such a tender age, but she has done so with wisdom, love, and sweetness. She is an amazing girl, who continues to inspire us!
There are so many people to thank... So many people who have helped get us through this year. I am extremely grateful to my sweet husband for his constant strength, love, and support! I am grateful to Scott's mom for helping us (daily) to get through the most difficult first 9 months. I am grateful for my mom and the many ways she gave her support (in the ways she is able). I am grateful for our extended families support (especially Scott's aunts and uncles and cousins). I am very grateful for those in our family who gave gifts and other support - especially thanks to Craig and Nannette for the clothes for Katie, and Scott & Janna for all they have done. I am grateful to my siblings for their love and support. I need to especially thank Brent & Krista, Scott & Janna, and Nannette, who came to Arizona to help us when we were in desperate need of help! I would like to particularly thank 3 of my nieces, Kirsten, Tebbanie, and Natasha, for there regular and ongoing support (also Jeff & Britney) - it has meant a lot and it has helped a lot! We are grateful to the members of our ward who have served us. We are grateful for the anonymous donors last Christmas. We are thankful to those who contributed to the ipad for Katie - what a blessing that has been this past year!! We are extremely grateful to everyone who has prayed for us - and continues to pray for us. I am grateful for friends who have called and supported us. I am grateful to everyone who has had compassion and concern enough to continue reading Katie's blog! I am grateful for your comments. I don't have words enough to express our gratitude to everyone for all that has been done - but we are grateful to all those who have helped us in any way! We thank you! We are also grateful for Katie's doctors and the help they have been.
Katie has undergone many transformations this year... She went from being a vibrant, happy, playful child, to being a child who could no longer walk, talk, or laugh - all she could do was lay in my arms and moan, and now she is back to running, laughing and playing. She has gone from long hair to no hair, to some hair, to no hair again, to now having hair just a little longer than her brother's! She had a birthday, turning from 2 to 3. She has had LOTS of ups and downs physically and emotionally. She has gone from refusing medicine, to now giving the medicine to herself. She has gone from having to stay home all the time, to now being able to go to church and Joy School. A year ago Katie got her own bedroom - only to end up sleeping back in her brother's room, because she "missed him" too much (Thank you to my husband and my brother Brent for indulging my ridiculous request to paint Katie's room, at the worst possible time). Also, in this past year, our 16 year old dog, Cozy, passed away and we now have our new puppy, Peaches. So, there have been a lot of transformations and transitions! Presently, Katie is getting new fingernails...Because whatever it was she just went through with the rashes/sores/peeling feet and hands, has now also made her fingernails start to come off and she is having new growth. Katie has had a lot of strange and frightening things happen to her, but she has faced it all with amazing strength and courage! It also needs mentioning, that Conner and Nathan have also been through a lot this year, as a result of all this. They too, have faced this past year with strength and courage!
On a personal note, I have learned many things this year... For Katie's future benefit, I would like to mention what I feel I have learned (at least the things I can think of at this time). I will list them in the order they came to me, as I pondered on this... I have learned the need to advocate for my children - and I have learned to be assertive enough to advocate for them. I have learned a lot about rashes and chicken pox! I have learned how fragile the human body is - and what a miracle our bodies truly are. I have learned things can always get worse - but I have also learned that things can always get better. I have learned it is hard to forgive - but I have also learned it is hard not to forgive. I have learned how damaging anger can be. I have learned (again) the importance of controling my thinking. I have learned patience, long suffering, enduring, faith, hope, and charity. I have learned to allow others to serve me. And I have learned to better serve others - and the need to serve. I have a greater understanding about the need for visiting teachers. I have learned to appreciate family more. I have learned some people just don't "get it," - they don't understand - because they can't understand. I have also learned that although some people may not understand, they want to understand, and do their best to understand, and they serve as they can. I have learned about the "goodness" of so many people. I have also learned to accept some people and things as they are. I have learned the need to look for the good and the positive - and to not focus on the lack or the negative. I have learned about the tender mercys of the Lord. I have learned that miracles are real and can happen for me. I have learned a lot about different types of medications. I have learned (a little late, but I am learning) the need to take time for myself. I have learned to take things one day at a time (thanks to my husband). I have learned what matters and what doesn't matter. I have learned to eat healthier - and to be healthier. I have learned (from Katie) to "choose" happiness. I have learned to focus on the positive. I have learned hair doesn't matter. I have learned that beauty truly comes from within. I have learned to rely on the Lord. I have learned to plan ahead. I have learned that I can't plan (or control) everything - or even anything. I have learned to let it go and to move on. I have learned to live in fear and live with fear. I have learned to put hope and faith in front of the fear. I have learned I can survive hard things. I have learned to be strong. I have learned compassion. I have learned the importance of "lightening up" (even though I have not mastered that yet). I have learned about (and have felt the power) of ministering angels. I have learned to cherish the simple things in life. I have also learned to relish the small moments of joy, that can come in seemingly ordinary ways. I have learned more about not judging (people, their situations, their behaviors, or their reactions). I have learned the power of prayer. I have learned the power of group prayer. I have learned that comfort and peace are found in the temple. I have learned (from Scott & my mom) to count my blessings even on the hard days. I have learned to have a greater love and appreciation for my husband, children, and extended family. My heart has grown very tender. I have learned there are so many people who are suffering and in pain. I have learned we are not alone. I have learned anew that Heavenly Father loves me/us and is aware of our needs.
These were lessons hard learned, and I am sad I had to learn them at the expense of Katie. However, because she did get cancer and had to go through all of this, I did not want her pain to be wasted and be for nothing. I am learning and growing - we all are! I feel weak, but yet I feel strong. I hope and pray we will never have to repeat anything like what we have gone through this year. Katie still has one year and two months of treatments she still needs to go through. So this is not over!... But today was a milestone. We made it through our first year and we are GLAD!
Thomas S. Monson in talking about peace has said: "Life is a school of experience, a time of probation. We learn as we bear our afflictions and live through our heartaches.
It has been a very long journey for such a little girl. It wasn't a coincidence she was Supergirl for Halloween. I chose that costume for her, because I felt it was appropriate for what she has gone through, and (in a way) represents who and what she is. Katie has been strong and courageous! She has had to face demons that most other children her age don't ever have to think about - don't even know about. She has had to endure many fears and go through a lot of pain. There have been many sleepless and restless nights. There have been many tears she has shed. And a lot of "I don't wants" (I don't want a poke, I don't want to take medicine, I don't want to go to the hospital, I don't want to die...) However, through it all Katie has come shinning through with humor, big smiles, and a positive attitude. She has had to endure so much at such a tender age, but she has done so with wisdom, love, and sweetness. She is an amazing girl, who continues to inspire us!
There are so many people to thank... So many people who have helped get us through this year. I am extremely grateful to my sweet husband for his constant strength, love, and support! I am grateful to Scott's mom for helping us (daily) to get through the most difficult first 9 months. I am grateful for my mom and the many ways she gave her support (in the ways she is able). I am grateful for our extended families support (especially Scott's aunts and uncles and cousins). I am very grateful for those in our family who gave gifts and other support - especially thanks to Craig and Nannette for the clothes for Katie, and Scott & Janna for all they have done. I am grateful to my siblings for their love and support. I need to especially thank Brent & Krista, Scott & Janna, and Nannette, who came to Arizona to help us when we were in desperate need of help! I would like to particularly thank 3 of my nieces, Kirsten, Tebbanie, and Natasha, for there regular and ongoing support (also Jeff & Britney) - it has meant a lot and it has helped a lot! We are grateful to the members of our ward who have served us. We are grateful for the anonymous donors last Christmas. We are thankful to those who contributed to the ipad for Katie - what a blessing that has been this past year!! We are extremely grateful to everyone who has prayed for us - and continues to pray for us. I am grateful for friends who have called and supported us. I am grateful to everyone who has had compassion and concern enough to continue reading Katie's blog! I am grateful for your comments. I don't have words enough to express our gratitude to everyone for all that has been done - but we are grateful to all those who have helped us in any way! We thank you! We are also grateful for Katie's doctors and the help they have been.
Katie has undergone many transformations this year... She went from being a vibrant, happy, playful child, to being a child who could no longer walk, talk, or laugh - all she could do was lay in my arms and moan, and now she is back to running, laughing and playing. She has gone from long hair to no hair, to some hair, to no hair again, to now having hair just a little longer than her brother's! She had a birthday, turning from 2 to 3. She has had LOTS of ups and downs physically and emotionally. She has gone from refusing medicine, to now giving the medicine to herself. She has gone from having to stay home all the time, to now being able to go to church and Joy School. A year ago Katie got her own bedroom - only to end up sleeping back in her brother's room, because she "missed him" too much (Thank you to my husband and my brother Brent for indulging my ridiculous request to paint Katie's room, at the worst possible time). Also, in this past year, our 16 year old dog, Cozy, passed away and we now have our new puppy, Peaches. So, there have been a lot of transformations and transitions! Presently, Katie is getting new fingernails...Because whatever it was she just went through with the rashes/sores/peeling feet and hands, has now also made her fingernails start to come off and she is having new growth. Katie has had a lot of strange and frightening things happen to her, but she has faced it all with amazing strength and courage! It also needs mentioning, that Conner and Nathan have also been through a lot this year, as a result of all this. They too, have faced this past year with strength and courage!
On a personal note, I have learned many things this year... For Katie's future benefit, I would like to mention what I feel I have learned (at least the things I can think of at this time). I will list them in the order they came to me, as I pondered on this... I have learned the need to advocate for my children - and I have learned to be assertive enough to advocate for them. I have learned a lot about rashes and chicken pox! I have learned how fragile the human body is - and what a miracle our bodies truly are. I have learned things can always get worse - but I have also learned that things can always get better. I have learned it is hard to forgive - but I have also learned it is hard not to forgive. I have learned how damaging anger can be. I have learned (again) the importance of controling my thinking. I have learned patience, long suffering, enduring, faith, hope, and charity. I have learned to allow others to serve me. And I have learned to better serve others - and the need to serve. I have a greater understanding about the need for visiting teachers. I have learned to appreciate family more. I have learned some people just don't "get it," - they don't understand - because they can't understand. I have also learned that although some people may not understand, they want to understand, and do their best to understand, and they serve as they can. I have learned about the "goodness" of so many people. I have also learned to accept some people and things as they are. I have learned the need to look for the good and the positive - and to not focus on the lack or the negative. I have learned about the tender mercys of the Lord. I have learned that miracles are real and can happen for me. I have learned a lot about different types of medications. I have learned (a little late, but I am learning) the need to take time for myself. I have learned to take things one day at a time (thanks to my husband). I have learned what matters and what doesn't matter. I have learned to eat healthier - and to be healthier. I have learned (from Katie) to "choose" happiness. I have learned to focus on the positive. I have learned hair doesn't matter. I have learned that beauty truly comes from within. I have learned to rely on the Lord. I have learned to plan ahead. I have learned that I can't plan (or control) everything - or even anything. I have learned to let it go and to move on. I have learned to live in fear and live with fear. I have learned to put hope and faith in front of the fear. I have learned I can survive hard things. I have learned to be strong. I have learned compassion. I have learned the importance of "lightening up" (even though I have not mastered that yet). I have learned about (and have felt the power) of ministering angels. I have learned to cherish the simple things in life. I have also learned to relish the small moments of joy, that can come in seemingly ordinary ways. I have learned more about not judging (people, their situations, their behaviors, or their reactions). I have learned the power of prayer. I have learned the power of group prayer. I have learned that comfort and peace are found in the temple. I have learned (from Scott & my mom) to count my blessings even on the hard days. I have learned to have a greater love and appreciation for my husband, children, and extended family. My heart has grown very tender. I have learned there are so many people who are suffering and in pain. I have learned we are not alone. I have learned anew that Heavenly Father loves me/us and is aware of our needs.
These were lessons hard learned, and I am sad I had to learn them at the expense of Katie. However, because she did get cancer and had to go through all of this, I did not want her pain to be wasted and be for nothing. I am learning and growing - we all are! I feel weak, but yet I feel strong. I hope and pray we will never have to repeat anything like what we have gone through this year. Katie still has one year and two months of treatments she still needs to go through. So this is not over!... But today was a milestone. We made it through our first year and we are GLAD!
Thomas S. Monson in talking about peace has said: "Life is a school of experience, a time of probation. We learn as we bear our afflictions and live through our heartaches.
"It may safely be assumed that no person has ever lived entirely free of suffering and tribulation, nor has there ever been a period in human history that did not have its full share of turmoil, ruin, and misery.
"At times there appears to be no light at the tunnel’s end, no dawn to break the night’s darkness. We feel surrounded by the pain of broken hearts, the disappointment of shattered dreams, and the despair of vanished hopes. We join in uttering the biblical plea: “Is there no balm in Gilead?” We feel abandoned, heartbroken, alone.
"To all who so despair, may I offer the assurance found in the psalm: 'Weeping may endure for a night, but joy cometh in the morning.'
"Whenever we are inclined to feel burdened down with the blows of life, let us remember that others have passed the same way, have endured, and then have overcome.
"From the bed of pain, from the pillow wet with tears, we are lifted heavenward by that divine assurance and precious promise: “I will not fail thee, nor forsake thee.”
"Such comfort is priceless as we journey along the pathway of mortality, with its many forks and turnings. Rarely is the assurance communicated by a flashing sign or a loud voice. Rather, the language of the Spirit is gentle, quiet, uplifting to the heart, and soothing to the soul.
"Lest we question the Lord concerning our troubles, let us remember that the wisdom of God may not be easily understandable by mortals, but the greatest single lesson we can learn is that when God speaks and a man obeys, that man will always be right" ("Peace in Our Savior," Ensign, June 2005, pp.2-7).
A recent article in the Church News stated: "While times are good, we may feel confident in the Lord's light, favor and blessings. But what happens when the lights go out and the blessings seem taken away? Even with a solid testimony, activity in the Church and obedience to commandments, we may feel baffled when it seems the Lord has withdrawn His blessings.
"Even though we don't know what God ultimately has in store for us in our lives, we do know some things for certain. We know He loves us. We know He has our best interests in mind. We know He is merciful. We know He wants us to return to live with Him. Perhaps the steep hill upon which we have been asked to travel is necessary for our growth or even our salvation.
"To endure the climb, we trust in the unseen guide that knows us better than we know ourselves. 'Trust in the Lord with all thine heart; and lean not unto thine own understanding' (Proverbs 3:5).
"Understanding God's will for us has everything to do with our submission to His will. The ultimate submission to God's will of any being to walk the earth was shown by Jesus Christ. He lived His life in total compliance to the commandments. He served others, sacrificed His time and blessed the lives of all He came in contact with. He touched no unclean thing and showed no interest in the world's enticements. Of all people, He should have been excused from any pain or torment because of His perfect life. But when approaching the appointed time of His suffering in the garden, the Savior said, "Father, if thou be willing, remove this cup from me: nevertheless not my will, but thine, be done" (Luke 22:42)." (Church News, Week of November 4, 2012).
For our benefit, a poet once wrote:
"In golden youth when seems the earth
A summer-land of singing mirth,
When souls are glad and hearts are light,
And not a shadow lurks in sight,
We do not know it, but there lies
Somewhere veiled ’neath evening skies
A garden which we all must see—
The garden of Gethsemane. …
Down shadowy lanes, across strange streams
Bridged over by our broken dreams;
Behind the misty caps of years,
Beyond the great salt fount of tears,
The garden lies. Strive, as you may,
You cannot miss it in your way;
All paths that have been, or shall be
Pass somewhere through Gethsemane" ("Peace in Our Savior," Thomas S. Monson, Ensign, June 2005, pp. 2-7).
"We must be humble and trust God. At times we might feel we have no control over our challenges and trials, but what we can control is our obedience to the Lord. All the answers might not come in this life, but they will come. President Henry B. Eyring said, "Although His time is not always our time, we can be sure that the Lord keeps His promises. For any of you who now feel that He is hard to reach, I testify that the day will come that we all will see Him face to face" (October 2012 general conference, "Where is the pavilion?"). (Church News, Week of November 4, 2012).
Saturday, November 3, 2012
Day 360 - Halloween Pictures
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| Superboy & Supergirl! |
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| Katie's hair is now a little bit longer than Conner's! |
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| Super Cute! |
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| Super Sweet! |
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| Super Strong! |
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| Super Happy! |
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| Ward Party |
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| Katie's pretty curls! |
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| Visiting Daddy at work |
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| Getting through it together - Katie truly is a supergirl! |
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