Katie finished her heavy dose of steroids on Monday. I never thought I would be glad for the 5 days of heavy dose steroids, because they take such a toll on Katie, but now in some ways I am glad. During that 5 day period, I don't have to wake Katie up in the middle of the night to feed her, and she doesn't have to take the corn starch before bed - which she says tastes disgusting (and it makes her gag). Plus, Katie's rash clears up during those 5 days - for some reason. - And sleeping through the night is a beautiful thing for both of us!
However as the heavy steroid wears off, we always have to worry about the hyperglycemia. We thought we had it managed with the low dose daily steroid, Proglycem medication, bedtime snack, 3 am snack, and corn starch - but Katie had another low blood sugar this week. Scott said he thought it was because she got such a heavy dose of chemo this time... But nobody really knows when it is going to happen, or why it happens. So it is always a worry. Plus, her rash is coming back.
Katie has her strength back and she is feeling much better. This heavy dose of chemo was hard on her - especially her tummy. We are glad we only have one more spinal tap left (in December). The doctor said maybe we should think about not doing the last one, because of what happened this time with the hyperglycemia. The doctor said, "I don't think that in the big scheme of things one spinal tap would make a difference one way or the other." I don't know (for sure) what we will decide come December - but when a doctor tells you they don't "think" it will make a difference either way - then that really isn't good enough assurance for us not to do it. We don't want to guess wrong! The "crisis" of Katie's hair falling out again, seems to have passed. Her hair has stopped falling out - and I am very happy about that - and so is Katie! Her hair is finally long enough for two ponytails on the side of her head, and she is super excited about that, she has had me put ponytails in her hair every day this week! =)
Scott's parents are recovering well from their surgeries. It is a long process, but they are getting through it. Scott is almost done with his biology class - one more week - we will be super glad when that is done and Scott can have a break (for awhile).
"Wherever you are, whatever your circumstances may be, you are not forgotten. No matter how dark your days may seem, no matter how insignificant you may feel, no matter how overshadowed you think you may be, your Heavenly Father has not forgotten you. In fact, He loves you with an infinite love.
"Just think of it: You are known and remembered by the most majestic, powerful, and glorious Being in the universe! You are loved by the King of infinite space and everlasting time! He who created and knows the stars knows you and your name... God loves you because you are His child.... If you will only allow His divine love into your life, it can dress any wound, heal any hurt, and soften any sorrow" ("Forget Me Not," Dieter F. Uchtdorf).
Sunday, September 29, 2013
Sunday, September 22, 2013
Day 727
Things didn't exactly go smoothly on Wednesday. I fed Katie at 3:30 in the morning, and then we gave her some apple juice at 6:30 - Katie had to fast for her procedure (spinal tap and chemo) so she couldn't have anything else to eat or drink. Katie is always scheduled first thing in the morning, because of her hyperglycemia. We have never had a problem at the clinic - until Wednesday. We got to the clinic around 8:10 a.m. We were called back around 8:20-8:30. When the tech finished taking Katie's vitals, all the sudden I realized Katie wasn't acting like herself - and then I realized what was happening. I turned to Scott and I said, "I think Katie's blood sugar is low." Scott picked Katie up in his arms - as we walked back to our room we passed one of the nurses and she asked if Katie was okay - we told her we didn't think so, and asked if we could have her blood sugar checked. Before we knew it, we had 4 nurses and a doctor in our room. One nurse checked Katie's blood sugar and said it was 64 - not too bad - but on it's way down, is what they thought. They wanted to put in an IV to give Katie sugar. The nurse didn't get the needle in on the first try... By then Katie was in a heavy full body sweat and very clammy and lethargic. I told Scott, "There is no way her blood sugar is 64." I told the nurse, the number couldn't have been right - I was sure Katie was lower than that. Scott told me the nurse hadn't let the alcohol dry before she took Katie's blood - and he thought she had gotten a false reading. When a second nurse finally got the IV in, I told her again that Katie's sugar had to be lower than 64. Scott asked her to test Katie's blood from the vial. She tested the blood - and Katie's blood sugar was 36 not 64! That is very low...and it was very evident by Katie's symptoms. She was very bad off. And then top it off with the stress of putting in an IV, not being able to find a good vein, etc... It was stressful! Katie's procedure got pushed back an hour so her blood sugar could level off. They kept her on the IV at the hospital during her procedure. Everything went smoothly after that. Thankfully Katie didn't need an IGG infusion (which would have kept us there for several more hours).
Katie is now on her heavy dose of steroids (and experiencing the effects of that and the chemo). She keeps saying she is "having a hard time." - And she is having a hard time. It is so hard for us to see her this way. We love her so much!
Today is my 46th birthday...I thought for sure I was 45, but Scott assures me I am 46! (I lost a year somewhere). Scott is working today, so we celebrated last night. After I blew out my candle, Katie asked me what I wished for. I told her it was a secret. She asked a few more times and then she said, "Did you wish that my cancer would go away, because you love me so much?" Yes Katie...that IS what I wished for, because I do love you so much! (She asked us the same thing on Scott's birthday). We are glad for the treatments she has been able to receive, and we are glad there is only 4 months left! Last night when Katie took her medication she said, "I only have to take 3 medicines tonight?...That is so great!" Only 3. Soon it will be none - every night - THAT will be great!
"For all of us this life is a time of sifting and refining. We all face trials. Individual members in the early days of the Church were tested and refined when they had to decide if they had the faith . . . to put their belongings in a wagon or a pioneer handcart and travel across the American plains. Some did not have the faith. Those who did traveled 'with faith in every footstep.' In our time we are going through an increasingly difficult time of refining and testing. The tests are more subtle because the lines between good and evil are being eroded. Very little seems to be sacred in any of our public communication. In this environment we will need to make sure where we stand all of the time in our commitment to eternal truths and covenants." (President James E. Faust, "Where Do I Make My Stand?" Ensign, Nov. 2004, 21)
My ancestors are among those who faithfully put their belongings in a handcart and traveled the long and difficult journey to Utah "with faith in every footstep." My great, great, great grandfather is one of the men who carried women and children across the freezing river. He had guard duty that night and he had no dry clothes to change into. As a result, his legs and feet froze, and he was no longer able to walk. He refused to have his wife pull him in the handcart, so he crawled on his hands and knees behind the handcart for 3 days before he died. He had faith, his wife and his daughters had faith. His wife also died on the journey - she didn't make it all the way to Utah valley - but their daughters did. This is my legacy and heritage. They gave up all they had, to live according to their beliefs and follow their faith. They did not shrink when the journey got hard, and neither must I. My ancestors did not give up all they had - including their lives - for me to falter now. I must carry on this legacy and teach my children to "walk with faith in every footstep."
Katie is now on her heavy dose of steroids (and experiencing the effects of that and the chemo). She keeps saying she is "having a hard time." - And she is having a hard time. It is so hard for us to see her this way. We love her so much!
Today is my 46th birthday...I thought for sure I was 45, but Scott assures me I am 46! (I lost a year somewhere). Scott is working today, so we celebrated last night. After I blew out my candle, Katie asked me what I wished for. I told her it was a secret. She asked a few more times and then she said, "Did you wish that my cancer would go away, because you love me so much?" Yes Katie...that IS what I wished for, because I do love you so much! (She asked us the same thing on Scott's birthday). We are glad for the treatments she has been able to receive, and we are glad there is only 4 months left! Last night when Katie took her medication she said, "I only have to take 3 medicines tonight?...That is so great!" Only 3. Soon it will be none - every night - THAT will be great!
"For all of us this life is a time of sifting and refining. We all face trials. Individual members in the early days of the Church were tested and refined when they had to decide if they had the faith . . . to put their belongings in a wagon or a pioneer handcart and travel across the American plains. Some did not have the faith. Those who did traveled 'with faith in every footstep.' In our time we are going through an increasingly difficult time of refining and testing. The tests are more subtle because the lines between good and evil are being eroded. Very little seems to be sacred in any of our public communication. In this environment we will need to make sure where we stand all of the time in our commitment to eternal truths and covenants." (President James E. Faust, "Where Do I Make My Stand?" Ensign, Nov. 2004, 21)
My ancestors are among those who faithfully put their belongings in a handcart and traveled the long and difficult journey to Utah "with faith in every footstep." My great, great, great grandfather is one of the men who carried women and children across the freezing river. He had guard duty that night and he had no dry clothes to change into. As a result, his legs and feet froze, and he was no longer able to walk. He refused to have his wife pull him in the handcart, so he crawled on his hands and knees behind the handcart for 3 days before he died. He had faith, his wife and his daughters had faith. His wife also died on the journey - she didn't make it all the way to Utah valley - but their daughters did. This is my legacy and heritage. They gave up all they had, to live according to their beliefs and follow their faith. They did not shrink when the journey got hard, and neither must I. My ancestors did not give up all they had - including their lives - for me to falter now. I must carry on this legacy and teach my children to "walk with faith in every footstep."
Sunday, September 15, 2013
Day 720
I am not an Endocrinologist, so I shouldn't even try to think like one! Last night we ate dinner later than usual...We went to Olive Garden. I figured that since Katie had pasta (later) that she wouldn't need a bedtime snack - so when she asked for one - I had Scott give her fruit, instead of a carb/protein snack. We did give her the 2 tsps. of cornstarch before bed as usual, however I opted not to feed her at 3 a.m... It is hard to explain my rationale... But I had started thinking that maybe she only needing the new Proglycem medication, and I thought that maybe all these other things we had been doing (daily steroids, bedtime snack, cornstarch, 3 am feeding) weren't necessary. But I was wrong! We checked on Katie a couple of times this morning and she was fine - but then she wasn't. She had a low blood sugar. She was miserable, and I felt so bad!! So...no more trying to out guess things, I will be sticking to the protocol.
Katie has been doing well (with the exception of this morning). She still has a pesky rash, that we wish would go away, but we are glad she has been feeling and doing so well. Unfortunately that isn't going to last... Katie goes to the hospital/clinic on Wednesday for her chemo - and this is the extra hard one - chemo through an IV at the clinic, and then we go over to the hospital and they put Katie to sleep so that they can take spinal fluid out and put chemo in. It will be a hard day...with many to follow.
January... We are looking forward to January. That is not really the end, but it is a huge milestone, and it is the end of the chemo! We are looking forward to better days ahead. Hopefully with the end of chemo, that will also be the end of our troubles with her blood sugars as well. And then Katie's life can stop being such an up and down roller coaster. That will be so great!
This week I have been reminded that life is a series of choices. Choices made daily or even hourly. I recently read an article in the Deseret News about a young woman, named Al Fox who has tattoos and has gotten baptized. She talks about the judgments people make and the offensive things people say. She talked about the choices she makes - and the choice we all make daily. A choice to get mad, or be offended - or not. We each decide how we respond. We can decide to be happy and follow the Spirit and the counsel given, regardless of what others may say or do. We can choose to have faith and trust in the Lord, no matter what happens in our lives.
Al said, "What it comes down to, and what it always will come down to, is to choose God - or not... To always keep in mind that everyone is in different spots in their lives. Everyone needs to learn different things, different ways."
We are all sinners, we just sin differently than each other. We should not stand in judgment of each other. We are all equally dependent upon the Saviors atonement. When people are rude, mean, or offensive we should think, "Is this worth giving up the blessings Heavenly Father has promised me? Is it worth my exaltation?"
Regardless of what others say or do, we still have choices. We can choose to simply react to others, or we can choose to respond as a disciple of Christ - and I will be the first one to say that the latter can be a hard thing to do - sometimes being "the bigger person" (all the time/every time) can be very difficult! But I know that what I do and how I do it makes a difference - maybe not for anyone else - but it does make a difference for me in my life. I took on a covenant at baptism - to always remember Him and to be like Him. I have chosen to be a disciple of Christ (and this week I have found myself wondering, "how am I doing at this?") I know the Lords ways and promises are worth it. And I know if I follow Him I will find more peace and happiness. Each day, we need to decide to keep going... decide to trust... decide to have faith... decide to forgive... and decide to truly be a disciple of Christ rather than to choose bitterness and anger, or to revile for reviling. We need to choose God - and we need to choose Him daily.
"Now the spirit, as well as the body, is in need of constant nourishment. Yesterday's meal is not enough to sustain today's needs." (President Ezra Taft Benson).
Katie has been doing well (with the exception of this morning). She still has a pesky rash, that we wish would go away, but we are glad she has been feeling and doing so well. Unfortunately that isn't going to last... Katie goes to the hospital/clinic on Wednesday for her chemo - and this is the extra hard one - chemo through an IV at the clinic, and then we go over to the hospital and they put Katie to sleep so that they can take spinal fluid out and put chemo in. It will be a hard day...with many to follow.
January... We are looking forward to January. That is not really the end, but it is a huge milestone, and it is the end of the chemo! We are looking forward to better days ahead. Hopefully with the end of chemo, that will also be the end of our troubles with her blood sugars as well. And then Katie's life can stop being such an up and down roller coaster. That will be so great!
This week I have been reminded that life is a series of choices. Choices made daily or even hourly. I recently read an article in the Deseret News about a young woman, named Al Fox who has tattoos and has gotten baptized. She talks about the judgments people make and the offensive things people say. She talked about the choices she makes - and the choice we all make daily. A choice to get mad, or be offended - or not. We each decide how we respond. We can decide to be happy and follow the Spirit and the counsel given, regardless of what others may say or do. We can choose to have faith and trust in the Lord, no matter what happens in our lives.
Al said, "What it comes down to, and what it always will come down to, is to choose God - or not... To always keep in mind that everyone is in different spots in their lives. Everyone needs to learn different things, different ways."
We are all sinners, we just sin differently than each other. We should not stand in judgment of each other. We are all equally dependent upon the Saviors atonement. When people are rude, mean, or offensive we should think, "Is this worth giving up the blessings Heavenly Father has promised me? Is it worth my exaltation?"
Regardless of what others say or do, we still have choices. We can choose to simply react to others, or we can choose to respond as a disciple of Christ - and I will be the first one to say that the latter can be a hard thing to do - sometimes being "the bigger person" (all the time/every time) can be very difficult! But I know that what I do and how I do it makes a difference - maybe not for anyone else - but it does make a difference for me in my life. I took on a covenant at baptism - to always remember Him and to be like Him. I have chosen to be a disciple of Christ (and this week I have found myself wondering, "how am I doing at this?") I know the Lords ways and promises are worth it. And I know if I follow Him I will find more peace and happiness. Each day, we need to decide to keep going... decide to trust... decide to have faith... decide to forgive... and decide to truly be a disciple of Christ rather than to choose bitterness and anger, or to revile for reviling. We need to choose God - and we need to choose Him daily.
"Now the spirit, as well as the body, is in need of constant nourishment. Yesterday's meal is not enough to sustain today's needs." (President Ezra Taft Benson).
Tuesday, September 10, 2013
Day 715
Katie had another good week and we are glad. Katie does have a rash all over her again, but other than that, she is doing well. There has not been any problems with her blood sugars and we are so happy about that. The Endocrinologist even agreed to let her stop the evening dose of the daily steroid, and we are grateful for the reduction! (She is still taking a morning dose).
Scott's mom went to the hospital this morning to get her hip replacement. I am still waiting to hear how it went. Scott is there at the hospital. Scott's dad is recovering well from his surgery.
Scott has been busy with work and school (biology class). It is Scott's birthday tomorrow - and as luck would have it - he is working (a 24 hour shift) - so we are finding it difficult to squeeze in a celebration with everything else that is going on.
Conner has been diagnosed with ADHD (by a psychologist), and we started him on medication this week. People seem to have strong opinions about ADHD medication - either people are for it or totally against it. As a parent, it is not an easy decision to make. We have been through this before with another of Scott's children - we tried diet, natural meds, etc... and nothing seemed to work, but the medication did work. However, even in saying that and knowing that, it is hard (it was a hard decision then with the other son, and it is hard now with Conner - he is only 5 years old). The side effects are always a worry. But things can not continue (at school) the way they are. Conner has had major difficulties since the first day of school. He goes to time out repeatedly throughout the day. And the PE coach is beside himself, he doesn't even know what to do with Conner... My instinct is just to bring Conner home and keep him home - lock the door and never let anyone in and never let Conner out. I want to protect him. Conner frequently cries about school. He says it is "hard" because he gets into trouble so much. He doesn't like going to "time-out all the time." He wants to "be good," but it is "hard." Conner has difficulty focusing and he has poor impulse control. So we will try the medication and see how that goes. Obviously locking him up with me for the rest of his life is not an option. I love him and I want to give him the best possible life I can. We are also doing behavior modification intervention with him, to help him gain the skills he needs. Scott and I are doing everything we can as parents to give him the structure and support and love he needs to be successful. But this has been "hard" on us too....
On Friday I ate an 8 x 8 pan of brownies - practically by myself - and like I told Scott later, I didn't even skip any meals - I ate my meals and the brownies too. So...that is how I am coping (or not)... I am just glad I didn't make a 9 x 13 pan of brownies! You would think I would be satiated on brownies - but I woke up Sunday morning thinking of brownies again.... So far I have been able to resist... although tomorrow is Scott's birthday and some sort of tasty treat will need to be made - I just hope I don't eat the whole thing myself!
This month's First Presidency Message is entitled "Saints For All Seasons," in the message President Uchtdorf says:
"We have seasons in our lives... Some are warm and pleasant. Others are not. Some of the days in our lives are as beautiful as pictures in a calendar. And yet there are days and circumstances that cause heartache and may bring into our lives deep feelings of despair, resentment, and bitterness.
"I am sure at one time or another we have all thought it would be nice to take up residence in a land filled only with days of picture-perfect seasons and avoid the unpleasant times in between.
"But this is not possible. Nor is it desirable.
"As I look over my own life, it is apparent that many of the times of greatest growth have come to me while passing through stormy seasons.
Scott's mom went to the hospital this morning to get her hip replacement. I am still waiting to hear how it went. Scott is there at the hospital. Scott's dad is recovering well from his surgery.
Scott has been busy with work and school (biology class). It is Scott's birthday tomorrow - and as luck would have it - he is working (a 24 hour shift) - so we are finding it difficult to squeeze in a celebration with everything else that is going on.
Conner has been diagnosed with ADHD (by a psychologist), and we started him on medication this week. People seem to have strong opinions about ADHD medication - either people are for it or totally against it. As a parent, it is not an easy decision to make. We have been through this before with another of Scott's children - we tried diet, natural meds, etc... and nothing seemed to work, but the medication did work. However, even in saying that and knowing that, it is hard (it was a hard decision then with the other son, and it is hard now with Conner - he is only 5 years old). The side effects are always a worry. But things can not continue (at school) the way they are. Conner has had major difficulties since the first day of school. He goes to time out repeatedly throughout the day. And the PE coach is beside himself, he doesn't even know what to do with Conner... My instinct is just to bring Conner home and keep him home - lock the door and never let anyone in and never let Conner out. I want to protect him. Conner frequently cries about school. He says it is "hard" because he gets into trouble so much. He doesn't like going to "time-out all the time." He wants to "be good," but it is "hard." Conner has difficulty focusing and he has poor impulse control. So we will try the medication and see how that goes. Obviously locking him up with me for the rest of his life is not an option. I love him and I want to give him the best possible life I can. We are also doing behavior modification intervention with him, to help him gain the skills he needs. Scott and I are doing everything we can as parents to give him the structure and support and love he needs to be successful. But this has been "hard" on us too....
On Friday I ate an 8 x 8 pan of brownies - practically by myself - and like I told Scott later, I didn't even skip any meals - I ate my meals and the brownies too. So...that is how I am coping (or not)... I am just glad I didn't make a 9 x 13 pan of brownies! You would think I would be satiated on brownies - but I woke up Sunday morning thinking of brownies again.... So far I have been able to resist... although tomorrow is Scott's birthday and some sort of tasty treat will need to be made - I just hope I don't eat the whole thing myself!
This month's First Presidency Message is entitled "Saints For All Seasons," in the message President Uchtdorf says:
"We have seasons in our lives... Some are warm and pleasant. Others are not. Some of the days in our lives are as beautiful as pictures in a calendar. And yet there are days and circumstances that cause heartache and may bring into our lives deep feelings of despair, resentment, and bitterness.
"I am sure at one time or another we have all thought it would be nice to take up residence in a land filled only with days of picture-perfect seasons and avoid the unpleasant times in between.
"But this is not possible. Nor is it desirable.
"As I look over my own life, it is apparent that many of the times of greatest growth have come to me while passing through stormy seasons.
"Our all-wise Heavenly Father knew that for His children to grow into the beings they were designed to become, they would need to experience seasons of adversity during their sojourn in mortality. The Book of Mormon prophet Lehi said that without opposition, “righteousness could not be brought to pass” (2 Nephi 2:11). Indeed, it is life’s bitterness that allows us to recognize, contrast, and appreciate its sweetness (see D&C 29:39; Moses 6:55).
"President Brigham Young put it this way: “All intelligent beings who are crowned with crowns of glory, immortality, and eternal lives must pass through every ordeal appointed for intelligent beings to pass through, to gain their glory and exaltation. Every calamity that can come upon mortal beings will be suffered … to prepare them to enjoy the presence of the Lord. … Every trial and experience you have passed through is necessary for your salvation.”
"The question is not whether we will experience seasons of adversity but how we will weather the storms. Our great opportunity during the ever-changing seasons of life is to hold fast to the faithful word of God, for His counsel is designed not only to help us weather the storms of life but also to guide us past them. Our Heavenly Father has given His word through His prophets—precious knowledge designed to lead us through the challenges of difficult seasons toward the unspeakable joy and brilliant light of eternal life. It is an important part of our life’s experience to develop the strength, courage, and integrity to hold fast to truth and righteousness despite the buffeting we may experience.
"Those who have entered the waters of baptism and received the gift of the Holy Ghost have set their feet on the path of discipleship and are charged to follow steadily and faithfully in the footsteps of our Savior.
"The Savior taught that the sun rises “on the evil and on the good, and … rain [falls] on the just and on the unjust” (Matthew 5:45). Sometimes we cannot understand why difficult, even unfair, things happen in life. But as followers of Christ, we trust that if we “search diligently, pray always, and be believing, … all things shall work together for [our] good, if [we] walk uprightly” (D&C 90:24).
Monday, September 2, 2013
Day 707
I have good news this week! Katie finished taking her high dose steroids earlier in the week, which usually means hyperglycemia episodes in the days that follow, but not this time! Yeah! It took 6 months of trial and error, and 2 Endocrinologists, but I think we finally have it under control. This last medication we added (Proglycem) seems to have made the difference (along with the daily steroids, bedtime snack, 2 tsps. of corn starch, and a 3 am snack). We are glad!
Katie has been having some troubles with her bladder bothering her, for the last 4 weeks, and the doctors can't quite figure out what that is (I have taken her in once a week for 4 weeks). But other than that, things are going good for Katie.
I am going to keep this short, because there is no school today, and so we are going to make the most of our day. Unfortunately Scott has to work, but Katie, Conner, and I have big plans for the day (swimming and going to Peter Piper Pizza for lunch and games). Scott's dad is doing well, the pathology report came back and there is no need for any further treatment. What a blessing! Scott's mom goes in to get her hip replaced on the 10th.
This week I have been reminded in several ways of the following quote. I don't know who said it, or where it came from, but I find it to be very true.... "You don't have to look very far to find someone who has suffered, or is suffering, much more than you." I have been feeling very overwhelmed, until I stopped "looking down," and started looking around... Actually, I still feel overwhelmed, but I recognize that there are other people who have suffered, or are suffering, much more than me... So, time to pick myself up off the ground, count my blessings, and move on.
Katie has been having some troubles with her bladder bothering her, for the last 4 weeks, and the doctors can't quite figure out what that is (I have taken her in once a week for 4 weeks). But other than that, things are going good for Katie.
I am going to keep this short, because there is no school today, and so we are going to make the most of our day. Unfortunately Scott has to work, but Katie, Conner, and I have big plans for the day (swimming and going to Peter Piper Pizza for lunch and games). Scott's dad is doing well, the pathology report came back and there is no need for any further treatment. What a blessing! Scott's mom goes in to get her hip replaced on the 10th.
This week I have been reminded in several ways of the following quote. I don't know who said it, or where it came from, but I find it to be very true.... "You don't have to look very far to find someone who has suffered, or is suffering, much more than you." I have been feeling very overwhelmed, until I stopped "looking down," and started looking around... Actually, I still feel overwhelmed, but I recognize that there are other people who have suffered, or are suffering, much more than me... So, time to pick myself up off the ground, count my blessings, and move on.
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