Scott, Conner, Katie, and I were out of town last week. We were in Southern Utah - we had planned on going later in the summer, but we knew if we didn't go now, we would not be able to go. Scott's mom is still waiting to have her surgery, and Scott's dad has been diagnosed with cancer. We do not know how bad his cancer is yet - he will get surgery in the next few weeks, and then we will know more. We wanted to be here to help Scott's parents through all of this, so we left for Utah just two days after I got back from New Mexico. Nathan also came back from Montana early. We are taking things as they come and adjusting as we need to. Although, the news about Scott's dad has been a pretty big blow....
I have spent this week trying to get caught up, after having been gone most of the month. (Plus, I fell and broke my tailbone just before we left for Utah - and that has been painful and it makes every task more difficult). Scott said maybe I had a little bit of an idea of what his mom has been going through - and I told him, "No way! Strap me to a bed for a three months and don't let me eat for two months, and then I might have an idea of what your mom has been going through!"
Katie went in for her treatment yesterday. This was the big one - the IV chemo, plus the spinal tap. A different doctor does the procedure every time. This time Katie got a big bruise on her back around the puncture - she has not had that happen before. Katie has complained of her back hurting. Katie has 2 more spinal taps to go through before we are done. This was the first time Conner has gone with us for this procedure. I think it is good for him to see what Katie has to go through (although we only took him because we couldn't find anyone to watch him - but we do think it is good for him to go with us occasionally, so he can know what Katie is going through).
The doctors have increased Katie's medications a couple of times in the past few months. We knew they might need to increase it again - and they did - but what we weren't expecting was to have ALL of her medications increased. Usually, they just increase one at a time, but this time the doctor increased all of her medications - significantly - even her steroids (not the daily one for her low blood sugar, but her monthly high dose steroid for the chemo). We we told her numbers were down - so they didn't need to increase her medications because of that, but they increased it because she has grown.
I can't even begin to explain how difficult and painful it is to increase her medications. Each day when I give her her medication, I know it is for her good, but I also know it is hurting her as well - short term and long term. And now we are giving her more...and more...and more. I was feeling very upset about it last night, and then during family prayer, Scott said how "grateful we are that Katie is able to receive the treatments she needs." Instantly, my heart was softened, as I was reminded how blessed we are that we have the treatments and medications we need for her. I don't know what the long term effects of these treatments will be for her, but I know we are doing what we need to do now to save her life - and if that means more chemo and steroids, then so be it. I am glad that Katie has a cancer that is treatable.
Being at the hospital/clinic is always a hard day. There are sick children everywhere you look. Yesterday was especially difficult for me. I saw too many sick children - so many that looked so very very ill. The images of these children linger in my mind. There was one boy in particular yesterday who caught my eye. Our eyes locked upon each other, and we held each others gaze for a few moments...he looked so sick...and my heart broke for him. I was filled with compassion for him and I felt a love for him. I wanted to help him, and yet there was nothing I could do, but offer him a feeble smile. It is almost overwhelming at times. There are so many children who are sick and suffering, and so many parents who are struggling and suffering. So many!...
I don't mean to be negative, but sometimes it is so hard to make sense of it all. There is so much suffering. Two days ago Scott went on a call for a 2 vehicle car crash - 3 fatalities, 1 injury - Scott had to extract their bodies out of the cars. A drunk driver was killed in one car, and a husband and a wife were killed in the other, and their son who was in the back seat was badly injured. One man, with 2 previous DUI's, made a choice that destroyed not only his life, but also an entire family. It is just hard to make sense of things like that (and all the suffering little children). However, I also know, that is when we have to turn to the Lord, and trust in His will and His timing.
I like this quote I read today by Chicko N. Okazaki. "The first person we need to be honest with is the Lord. The Lord doesn't just want pretty prayers. He wants real prayers. Sometimes we think of those eloquent, gracious prayers in sacrament meeting and general conference as the models for our personal prayers. We try to our rough thoughts into smooth sentences and it seems hard. We know how to say, "I am so grateful for our son who is on a mission," but we might not know how to say, "I am so scared and so mad about our son who is on drugs." Heavenly Father wants to hear the scared and the mad prayers just as much as he wants to hear the grateful prayers.
"Sometimes it's very hard for us to be honest, especially with negative feelings and ideas. Elder Neal A. maxwell asked a soul-searching question: "Can we partake of tiny, bitter cups without becoming bitter?" I think we can, with God's help, but not if we deny that the cup is bitter in the first place.
"When Jesus was praying in the Garden of Gethsemane, he was honest about how hard the Atonement was going to be for him when he prayed that the cup might pass from him. He struggled with a "very heavy" burden of feelings, saying, "My soul is exceeding sorrowful unto death," and he prayed, "Father, all things are possible unto thee; take away this cup from me" (Mark 14:33-34,36). He was honest about how much de didn't like what was happening; and I think it's because of his honesty that we so revere the love and humility revealed by the rest of the prayer: "Nevertheless not what I will, but what thou wilt" (Mark 14:36).
"Can we be equally honest in our prayers? Remember, we're not going to shock our Father in Heaven. There isn't anything we can say that he hasn't already heard, nothing we can show him that he hasn't already seen. We may shock ourselves a little when we start being honest, but I think some very profound revelations come to us in those moments." ("A Year of Powerful Prayer " 132).
Saturday, June 29, 2013
Tuesday, June 18, 2013
Day 629
We had a nice two weeks in New Mexico with my family. Katie turned 4 while we were there, and we had a fun family party for her (BBQ dinner at the church park). Katie and Conner had a blast playing with all of their cousins during our two week stay! It was nice to go "home." But we are glad to be back again - we all missed Scott!
Katie had a rough first week ... more so than usual ... maybe she had a virus?.... maybe that's why so many other extended family members started throwing-up?... maybe... maybe not... all we know for sure, is that Katie seemed sicker than usual, and it lasted longer than usual. Katie also had multiple low blood sugar episodes - 5 or 6 days in a row. Too many! Her glucose levels were in the low to mid 40's. Katie even threw-up one morning (we are fairly certain this was due to the low blood sugar level and not the stomach flu everyone else was suffering from, because she quickly recovered and had no further problems - until the next morning that is! Katie woke up the next morning with a level of 41. She would barely drink and I couldn't get her to eat anything - and that was not the norm! Katie was awake, but she was very lethargic and she was not acting appropriately. It was scary. I put in calls to our PCH Oncologist and Endocronologist. Katie slowly came around and everything turned out fine... But Scott and I do not want this to happen any more. It is too dangerous to just let it keep happening. Obviously, the bedtime snack and nightly dose of corn starch were not working.
I will spare you all the details and my frustrations (in part because I am on the IPad again), but after speaking with the Endocronoligist and our Oncologist nurse, two or three times, we decided to start Katie on a daily steroid. This was a hard decision for Scott and I to make - we didn't want to do it - Katie is on so many medications already. I even tried waking her up during the middle of the night to give her the corn starch - but that didn't work out very well - for Katie or me - and it certainly wasn't going to be a good long term solution - we still have 7 months of treatments left. So, anyway, Katie is now on a daily low dose steroid... I was told it will not interfere with her treatment and that the long term side effects will be no different that what they already will be due to her prolonged use of a high dose of steroids. - We know there will be long term side effects to all of her treatments.
People often comment on how great it is that this is "almost over - only 7 more months - and then it will all be done." AND it is great that Katie's treatments will be done in 7 months, BUT that will not be the end. In 5 years from now, Katie will need a test to see what type of damage the chemo has done to her heart and other organs. It will take that long before they can run the tests to know. We know there will be long term side effects from the steroids. There are a multitude of issues and long term effects that we will be facing, once Katie's treatments are complete. So yes, we will be very happy and excited when Katie's treatments end, but that is not the end of it, we just enter into the next phase of it. Although we are very hopeful and prayerful that January will be an end to the worst of it. We cling to that hope.
It is strange sometimes in life, when themes continue to reoccur. When that happens, I do not think it is a coincidence, but rather a message or a lesson we need to hear. The "theme" lately that keeps reoccurring is faith - the faith to be healed, but also the faith to not be healed. A few weeks ago I posted a thought on this topic, by Elder Bednar from a recent CES Devotional, which was quoted in a talk by a sister in my ward who was leaving on her mission. A couple of weeks ago, a friend (Lori Allen) printed out a copy of this devotional for me. Today was my first chance to read it through (and oddly enough, because of some extenuating circumstances, this article means more to me now that it would have even just 2 weeks ago). The title is "That We Might Not... Shrink" from a CES devotional given March 3, 2013. However, before I quote from that, I wanted to tell about a Mormon video I recently watched. As I said this theme of faith and healing keeps reoccurring recently, and I came across this video randomly and quite by chance. The video tells about the Toone family, who live in Layton Utah. Three years ago a pesticide company put a dangerous pesticide too close to their family home. Their entire family became ill - they originally thought it was from food poisoning. However, as their 4 year old daughter became more ill, they took her to the hospital where she soon died. The father says he was confident that everyone else would be okay, because he said there was no way he would be able to withstand loosing another child. However, just 3 days later, their 15 month old daughter passed away also.
In the video, the father says, "It takes a lot of faith to have your prayers answered. It takes a different kind of faith when your prayers aren't.". The mother then says, "Having faith and asking for a miracle, and not getting the miracle you ask for, and then still being able to Marshall that faith to show up the next Sunday - that is an extra commitment to the Lord...You can have faith even when your prayers aren't answered."
Now back to the CES devotional, which by the way, a man speaking in church yesterday (I now know) also quoted from this devotional by Elder Bednar. I can not do this article justice (especially not while trying to use an IPad) so for anyone interested, I suggest looking up the entire talk. However, here are some highlights... The talk begins by describing the 46 days and nights of debilitating chemotherapy treatments Elder Neal A. Maxwell underwent for Leukemia.in the latter part of his life. Elder Bednar asked Elder Maxwell what he had learned through his illness. Elder Maxwell replied, "I have learned that not shrinking is more important than surviving.".
Elder Bednar goes on to quote Elder Maxwell's 1997, October's general conference message, entitled "Applying the Atoning Blood of Christ." Quote: " as we confront our own ... Trials and tribulations, we too can plead with the Father, just as Jesus did, that we 'might ... Not shrink'- meaning to retreat or to recoil (D&C 19:18). Not shrinking is much more important than surviving! Moreover, partaking of a bitter cup without becoming bitter is likewise part of the emulation of Jesus" (ensign, Nov. 1997, 22).
Elder Bednar then quotes Elder Orson F. Whitney: "No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith,fortitude, and humility. All that we suffer and all that we endur, especially when we endur it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God ... And it is through sorrow and suffering, toil and tribulation, that we gain the education that we have come here to acquire (quoted in Spencer W. Kimball, Faith Precedes the Miracle1972, 98).
Elder Bednar then goes on to tell the story (I mentioned a few weeks ago) about the newly wed couple named Heather and John. Three weeks after they were married, John was diagnosed with bone cancer. John asked Elder Bednar for a blessing. Elder Bednar then posed a question to them that he says he had never previously considered. John said Elder Benar told him, "I know you have the faith to be healed, but do you have the faith to not be healed?" John said, "Having the fith to not be healed seemed counterintuitive; but that perspective changed the way my wife and I thought and allowed us to put our trust fully in the Father's plan for us. We learned we needed to gain the faith that the Lrd is in charge whatever the outcome may be, an He will guide us from where we are to where we need to be. As we prayed, our petitions changed from 'Please make me whole' to 'Please give me the faith to accept whatever outcome Thou hast planned for me.'
Elder Bednar tell that John's wife, Heather said, "I knew the power of the priesthood he could be healed, and I wanted so bad for that to happen. After he (Elder Bednar) taught us about the faith to not be healed, I was terrified. Up to that point, I had never had to come to grips with the fact that the Lord's plan might include losing my new husband. My faith was dependent upon the outcomes I wanted. In a manner of speaking, it was one-dimensional. Though terrifying at first, the thought of having the faith not to be healed ultimately freed me from worry. It allowed me to have complete trust that my Heavenly Father knew me better than I knew myself, and he would do what was best for me and John."
Of this experience, Elder Bednar states: "As John Heather and I counseled together...we increasingly understood that if God's will we're for this good young man to be healed, then that blessing could only be received if this valiant couple first had the faith not to be healed. In other words, John and Heather needed to overcome , through the atonement of the Lord Jesus Christ, the "natural man" (Mosiah 3:19) tendency in all of us to demand impatiently and insist incessantly on the blessings we want and believe we deserve.
"We recognized a principle that applies to ever devotedd disciple: strong faith in the Savior is submissively accepting of His will and timing in our lives - even if the outcome is not what we hoped for or wanted. Certainly, John and Heather would desire, year, and plead for healing with all of their might, mind, and strength. Byt more importantly, they would be "willing to submit to all things the Lord seeth fit to inflict upon [them], even as a child doth submit to his father" (Mosiah3:19).
I will conclude with this quote (also by elder Bednar): "Righteousness and faith certainly are instrumental in moving mountains - if moving mountains accomplishes God's purposes and is in accordance with His will. Righteousness and faith certainly are instrumental in healing the sick, deaf, lame - if such healing accomplishes God's purposes and is in accordance with His will. Thus, even with strong faith, many mountains will not be moved. And not all of the sick and informed will be healed. If all opposition were curtailed, if all maladies were removed, them the primary purposes of the Father's plan would be frustrated."
Katie had a rough first week ... more so than usual ... maybe she had a virus?.... maybe that's why so many other extended family members started throwing-up?... maybe... maybe not... all we know for sure, is that Katie seemed sicker than usual, and it lasted longer than usual. Katie also had multiple low blood sugar episodes - 5 or 6 days in a row. Too many! Her glucose levels were in the low to mid 40's. Katie even threw-up one morning (we are fairly certain this was due to the low blood sugar level and not the stomach flu everyone else was suffering from, because she quickly recovered and had no further problems - until the next morning that is! Katie woke up the next morning with a level of 41. She would barely drink and I couldn't get her to eat anything - and that was not the norm! Katie was awake, but she was very lethargic and she was not acting appropriately. It was scary. I put in calls to our PCH Oncologist and Endocronologist. Katie slowly came around and everything turned out fine... But Scott and I do not want this to happen any more. It is too dangerous to just let it keep happening. Obviously, the bedtime snack and nightly dose of corn starch were not working.
I will spare you all the details and my frustrations (in part because I am on the IPad again), but after speaking with the Endocronoligist and our Oncologist nurse, two or three times, we decided to start Katie on a daily steroid. This was a hard decision for Scott and I to make - we didn't want to do it - Katie is on so many medications already. I even tried waking her up during the middle of the night to give her the corn starch - but that didn't work out very well - for Katie or me - and it certainly wasn't going to be a good long term solution - we still have 7 months of treatments left. So, anyway, Katie is now on a daily low dose steroid... I was told it will not interfere with her treatment and that the long term side effects will be no different that what they already will be due to her prolonged use of a high dose of steroids. - We know there will be long term side effects to all of her treatments.
People often comment on how great it is that this is "almost over - only 7 more months - and then it will all be done." AND it is great that Katie's treatments will be done in 7 months, BUT that will not be the end. In 5 years from now, Katie will need a test to see what type of damage the chemo has done to her heart and other organs. It will take that long before they can run the tests to know. We know there will be long term side effects from the steroids. There are a multitude of issues and long term effects that we will be facing, once Katie's treatments are complete. So yes, we will be very happy and excited when Katie's treatments end, but that is not the end of it, we just enter into the next phase of it. Although we are very hopeful and prayerful that January will be an end to the worst of it. We cling to that hope.
It is strange sometimes in life, when themes continue to reoccur. When that happens, I do not think it is a coincidence, but rather a message or a lesson we need to hear. The "theme" lately that keeps reoccurring is faith - the faith to be healed, but also the faith to not be healed. A few weeks ago I posted a thought on this topic, by Elder Bednar from a recent CES Devotional, which was quoted in a talk by a sister in my ward who was leaving on her mission. A couple of weeks ago, a friend (Lori Allen) printed out a copy of this devotional for me. Today was my first chance to read it through (and oddly enough, because of some extenuating circumstances, this article means more to me now that it would have even just 2 weeks ago). The title is "That We Might Not... Shrink" from a CES devotional given March 3, 2013. However, before I quote from that, I wanted to tell about a Mormon video I recently watched. As I said this theme of faith and healing keeps reoccurring recently, and I came across this video randomly and quite by chance. The video tells about the Toone family, who live in Layton Utah. Three years ago a pesticide company put a dangerous pesticide too close to their family home. Their entire family became ill - they originally thought it was from food poisoning. However, as their 4 year old daughter became more ill, they took her to the hospital where she soon died. The father says he was confident that everyone else would be okay, because he said there was no way he would be able to withstand loosing another child. However, just 3 days later, their 15 month old daughter passed away also.
In the video, the father says, "It takes a lot of faith to have your prayers answered. It takes a different kind of faith when your prayers aren't.". The mother then says, "Having faith and asking for a miracle, and not getting the miracle you ask for, and then still being able to Marshall that faith to show up the next Sunday - that is an extra commitment to the Lord...You can have faith even when your prayers aren't answered."
Now back to the CES devotional, which by the way, a man speaking in church yesterday (I now know) also quoted from this devotional by Elder Bednar. I can not do this article justice (especially not while trying to use an IPad) so for anyone interested, I suggest looking up the entire talk. However, here are some highlights... The talk begins by describing the 46 days and nights of debilitating chemotherapy treatments Elder Neal A. Maxwell underwent for Leukemia.in the latter part of his life. Elder Bednar asked Elder Maxwell what he had learned through his illness. Elder Maxwell replied, "I have learned that not shrinking is more important than surviving.".
Elder Bednar goes on to quote Elder Maxwell's 1997, October's general conference message, entitled "Applying the Atoning Blood of Christ." Quote: " as we confront our own ... Trials and tribulations, we too can plead with the Father, just as Jesus did, that we 'might ... Not shrink'- meaning to retreat or to recoil (D&C 19:18). Not shrinking is much more important than surviving! Moreover, partaking of a bitter cup without becoming bitter is likewise part of the emulation of Jesus" (ensign, Nov. 1997, 22).
Elder Bednar then quotes Elder Orson F. Whitney: "No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith,fortitude, and humility. All that we suffer and all that we endur, especially when we endur it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God ... And it is through sorrow and suffering, toil and tribulation, that we gain the education that we have come here to acquire (quoted in Spencer W. Kimball, Faith Precedes the Miracle1972, 98).
Elder Bednar then goes on to tell the story (I mentioned a few weeks ago) about the newly wed couple named Heather and John. Three weeks after they were married, John was diagnosed with bone cancer. John asked Elder Bednar for a blessing. Elder Bednar then posed a question to them that he says he had never previously considered. John said Elder Benar told him, "I know you have the faith to be healed, but do you have the faith to not be healed?" John said, "Having the fith to not be healed seemed counterintuitive; but that perspective changed the way my wife and I thought and allowed us to put our trust fully in the Father's plan for us. We learned we needed to gain the faith that the Lrd is in charge whatever the outcome may be, an He will guide us from where we are to where we need to be. As we prayed, our petitions changed from 'Please make me whole' to 'Please give me the faith to accept whatever outcome Thou hast planned for me.'
Elder Bednar tell that John's wife, Heather said, "I knew the power of the priesthood he could be healed, and I wanted so bad for that to happen. After he (Elder Bednar) taught us about the faith to not be healed, I was terrified. Up to that point, I had never had to come to grips with the fact that the Lord's plan might include losing my new husband. My faith was dependent upon the outcomes I wanted. In a manner of speaking, it was one-dimensional. Though terrifying at first, the thought of having the faith not to be healed ultimately freed me from worry. It allowed me to have complete trust that my Heavenly Father knew me better than I knew myself, and he would do what was best for me and John."
Of this experience, Elder Bednar states: "As John Heather and I counseled together...we increasingly understood that if God's will we're for this good young man to be healed, then that blessing could only be received if this valiant couple first had the faith not to be healed. In other words, John and Heather needed to overcome , through the atonement of the Lord Jesus Christ, the "natural man" (Mosiah 3:19) tendency in all of us to demand impatiently and insist incessantly on the blessings we want and believe we deserve.
"We recognized a principle that applies to ever devotedd disciple: strong faith in the Savior is submissively accepting of His will and timing in our lives - even if the outcome is not what we hoped for or wanted. Certainly, John and Heather would desire, year, and plead for healing with all of their might, mind, and strength. Byt more importantly, they would be "willing to submit to all things the Lord seeth fit to inflict upon [them], even as a child doth submit to his father" (Mosiah3:19).
I will conclude with this quote (also by elder Bednar): "Righteousness and faith certainly are instrumental in moving mountains - if moving mountains accomplishes God's purposes and is in accordance with His will. Righteousness and faith certainly are instrumental in healing the sick, deaf, lame - if such healing accomplishes God's purposes and is in accordance with His will. Thus, even with strong faith, many mountains will not be moved. And not all of the sick and informed will be healed. If all opposition were curtailed, if all maladies were removed, them the primary purposes of the Father's plan would be frustrated."
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