It is hard sometimes to know what to do... Katie woke up during her nap yesterday, several times, moaning and crying. She did the same thing all during the night last night. We worry that her blood level has gone down and she needs a transfusion, but in order to check that, we would have to access her port (which we want to do as little as possible - for several reasons). However, we decided in the middle of the night that we would take her in today to get checked, but when she woke up this morning, she looked and acted fine... So, I am not sure what to do. I guess we will give it another day and see how she does.
Yesterday was just a yucky day. My poor husband spent a good part of his day, putting out fires (figuratively, not literally) trying to make everything better for everyone. What I posted yesterday about patience and endurance, is what I am learning about, but certainly not what I have mastered! Scott is far more advanced in this area than me - he is a great example.
Yesterday some emotions were stirred up for me. Our family has been through some very hard things, especially in this past year. We continue to be faced with the challenge of forgiving others - people who used their free agency in such a way that it harshly and directly impacted our lives. I am finding that forgiveness is a long and difficult process. Because of all the hurt brought on by others, our family also has a lot of healing we need to go through, individually and collectively. We are a work in progress.
There is an article in the June 2012 Ensign that I wanted to make note of called, "Finding Peace Through Forgiveness" (page 64).
The following quotes by President Faust were mentioned in the article:
* "Forgiveness is not always instantaneous."
* "Most of us need time to work through pain and loss."
* "Forgiveness comes more readily when...we have faith in God and trust in
His word."
* "If we will get on our knees and ask Heavenly Father for a feeling of
forgiveness, He will help us."
"The Savior has offered to all of us a precious peace through His Atonement, but this can come only as we are willing to cast out negative feelings of anger, spite, or revenge."
"With all my heart and soul, I believe in the healing power that can come to us as we follow the counsel of the Savior 'to forgive all men' (D&C 64:10). (James E. Faust, "The Healing Power of Forgiveness," Ensign, May 2007, 67-69).
The following quotes from Elder Richard G. Scott, are in addition to the article (page 66): "You cannot erase what has been done, but you can forgive. Forgiveness heals terrible, tragic wounds, for it allows the love of God to purge your heart and mind of the poison of hate. It cleanses your consciousness of the desire for revenge. It makes place for the purifying, healing, restoring love of the Lord.
"The Master counseled, 'Love your enemies, bless them that curse you, do good to them that hate you, and pray for them who despitefully use you and persecute you' (3 Nephi 12:44).
"Bitterness and hatred are harmful. They produce much that is destructive. They postpone the relief and healing you yearn for... Let God be the judge - you cannot do it as well as he can." ("Healing the Tragic Scars of Abuse," Ensign, May 1992, 32-33).
True, but hard. I feel justified in my anger against those who wronged us, but holding on to that anger will only cause further pain to my family. I won't allow that to happen - I did not have had any control over what they chose to do to us, but I do have control over how I chose to respond to it - I will not allow them to cause any further harm or pain to my family, or to me. My desire for peace outweighs any desire I have to hold onto that anger. I fully recognize the importance of redirecting my thoughts from the wrongs that have been done, to focusing my mind and energy on things of a better. Katie getting cancer, as hard as it has been, has been a source of help in "forcing" us to focus on better things and prioritizing "what matters most." What was done to us can not be "erased," but I know with time we will heal and we will forgive. We are an eternal family and we are united in our love for each other and in our love of the Lord.
Thursday, May 31, 2012
Wednesday, May 30, 2012
Day 203
The hair Katie is growing looks darker than the hair she had before. She had blond hair before the cancer, and last time it started to grow in, it was also very blond. This time however, it looks darker. The doctor told us that sometimes after chemo a person's hair can grow back a totally different color and texture. Whatever color or texture her hair is, I am glad she has hair coming in - but I will miss her blond hair, if it isn't blond. I guess time will tell... She is beautiful no matter what - hair, no hair, blond, or brunette, curly, or straight.
I was recently asked to share some thoughts, at a women's meeting at church, about patience like unto Sarah (wife of Abraham). I am including this today for Katie to refer to in the future. Most of these are quotes I have already posted, but they are some of my favorite quotes that have helped me learn more about patience, enduring, and trust in the Lord.
It is easy to be patient with our family when our house is clean and our children are well behaved. It is easy to be patient with ourselves, others, and God when our life is running smoothly. However, having the "patience of Sarah" in the midst of our adversities can be challenging. Here are five areas of patience I have learned about through my personal adversities:
1. Patient Endurance:
Neal A. Maxwell said: "Patient endurance is to be distinguished from merely being 'acted upon.' Endurance is more than pacing up and down within the cell of our circumstance; it is not only acceptance of the things allotted to us, it is to 'act for ourselves' by magnifying what is allotted to us. (See Alma 29:3, 6).
"To endure in faith and doeth God's will involves much more than putting up with a circumstance. Rather than shoulder-shrugging, true enduring is soul-trembling...Patient endurance permits us to cling to our faith in the Lord and our faith in His timing when we are being tossed about by the surf of circumstance. Even when a seeming undertow grasps us, somehow, in the tumbling, we are being carried forward, though battered and bruised." (Ensign, Neal A. Maxwell, "Endure it Well").
2. Patience in the Lord's Timing:
"Faith means trust - trust in God's will, trust in His way of doing things, and trust in His timetable. We should not try to impose our timetable on His...The issue for us is trusting God enough to trust also His timing. If we can truly believe He has our welfare at heart, may we not let His plans unfold as He thinks best?
"...Indeed, we cannot have true faith in the Lord without also having complete trust in the Lord's will and in the Lord's timing.
"...Commit yourself to put the Lord first in your life...Faith and trust in the Lord give us the strength to accept and persist, whatever happens in our lives...
"Stand ready to accept the Lord's planning and the agency of others in matters that inevitably affect you. Plan, of course, but fix your planning on personal commitments that will carry you through no matter what happens. Anchor your life to eternal principles, and act upon those principles whatever the circumstances and whatever the actions of others. Then you can await the Lord's timing and be sure of the outcome in eternity...The most important Principal of timing is to take the long view." (Ensign, Dallin H. Oaks, "Timing", Oct., 2003).
3. Patience With Time Itself:
"Paul wrote of how, even after faithful disciples had 'done the will of God,' they 'had need of patience.' (Heb: 10:36)...We are to 'run with patience the race that is set before us' (Heb. 12:1), and it is a marathon, not a dash...When you and I are unduly impatient, we are suggesting that we like our timetable better than God's.
"By itself, of course, the passage of time does not bring an automatic advance. Yet, like the prodigal son, we often need the 'process of time' in order to come to our spiritual senses. The touching reunion of Jacob and Esau in the desert, so many years after their sibling rivalry, is a classic example. Generosity can replace animosity. Reflection can bring perception. But reflection and introspection require time. So many spiritual outcomes require saving truths to be mixed with time, forming the elixir of experience, that sovereign remedy for so many things.
"Without patient and meek endurance we will learn less, see less, feel less, and hear less. We who are egocentric and impatient shut down so much of our receiving capacity...How could there be refining fires without enduring some heat? Or greater patience without enduring some instructive waiting? Or more empathy without bearing one another's burdens - not only that others' burdens may be lightened, but that we may be enlightened through greater empathy? How can there be later magnification without enduring some present deprivation? (Ensign, Neal A. Maxwell, "Endure it Well").
4. Patience With Others - them with you and you with them:
During the 2010 General Relief Society Meeting, President Monson said: "Life is perfect for none of us. Rather than being judgmental and critical of each other, may we have the pure love of Christ for our fellow travelers in this journey through life. May we recognize that each one is doing her best to deal with the challenges which come our way, and may we strive to do our best to help out." (Church News, March 3, 2012).
Neal A. Maxwell said: "When, for the moment, we ourselves are not being stretched on a particular cross, we ought to be at the foot of someone else's - full of empathy and proffering spiritual refreshment." (Ensign, Neal A. Maxwell, "Endure it Well").
It is easy to make judgments on each other, but we are so inept to judge each other, because no one can really know what others have gone through, or why they are behaving the way they are. We need to be patient, tolerant, kind and compassionate towards each other. We are all trying to do our best - and sometimes we just need a little help and understanding from each other to help see us through.
If however, you are on the other end of this and you are feeling judged, isolated, alone, misunderstood, misrepresented - you can be patient and tolerant too. Realizing others may not have gone through what you are going through, and they do not (can not) understand. Always remembering, we are all in different places on our journey. Patience, tolerance, kindness, love - we are all in need.
5. Patience With Self:
"Continue in patience until ye are perfected" (D&C 67:13). It doesn't say be perfect today, it says to continue in patience until ye are perfected. We also need to be patient, tolerant, kind, and loving to ourselves.
I was recently asked to share some thoughts, at a women's meeting at church, about patience like unto Sarah (wife of Abraham). I am including this today for Katie to refer to in the future. Most of these are quotes I have already posted, but they are some of my favorite quotes that have helped me learn more about patience, enduring, and trust in the Lord.
It is easy to be patient with our family when our house is clean and our children are well behaved. It is easy to be patient with ourselves, others, and God when our life is running smoothly. However, having the "patience of Sarah" in the midst of our adversities can be challenging. Here are five areas of patience I have learned about through my personal adversities:
1. Patient Endurance:
Neal A. Maxwell said: "Patient endurance is to be distinguished from merely being 'acted upon.' Endurance is more than pacing up and down within the cell of our circumstance; it is not only acceptance of the things allotted to us, it is to 'act for ourselves' by magnifying what is allotted to us. (See Alma 29:3, 6).
"To endure in faith and doeth God's will involves much more than putting up with a circumstance. Rather than shoulder-shrugging, true enduring is soul-trembling...Patient endurance permits us to cling to our faith in the Lord and our faith in His timing when we are being tossed about by the surf of circumstance. Even when a seeming undertow grasps us, somehow, in the tumbling, we are being carried forward, though battered and bruised." (Ensign, Neal A. Maxwell, "Endure it Well").
2. Patience in the Lord's Timing:
"Faith means trust - trust in God's will, trust in His way of doing things, and trust in His timetable. We should not try to impose our timetable on His...The issue for us is trusting God enough to trust also His timing. If we can truly believe He has our welfare at heart, may we not let His plans unfold as He thinks best?
"...Indeed, we cannot have true faith in the Lord without also having complete trust in the Lord's will and in the Lord's timing.
"...Commit yourself to put the Lord first in your life...Faith and trust in the Lord give us the strength to accept and persist, whatever happens in our lives...
"Stand ready to accept the Lord's planning and the agency of others in matters that inevitably affect you. Plan, of course, but fix your planning on personal commitments that will carry you through no matter what happens. Anchor your life to eternal principles, and act upon those principles whatever the circumstances and whatever the actions of others. Then you can await the Lord's timing and be sure of the outcome in eternity...The most important Principal of timing is to take the long view." (Ensign, Dallin H. Oaks, "Timing", Oct., 2003).
3. Patience With Time Itself:
"Paul wrote of how, even after faithful disciples had 'done the will of God,' they 'had need of patience.' (Heb: 10:36)...We are to 'run with patience the race that is set before us' (Heb. 12:1), and it is a marathon, not a dash...When you and I are unduly impatient, we are suggesting that we like our timetable better than God's.
"By itself, of course, the passage of time does not bring an automatic advance. Yet, like the prodigal son, we often need the 'process of time' in order to come to our spiritual senses. The touching reunion of Jacob and Esau in the desert, so many years after their sibling rivalry, is a classic example. Generosity can replace animosity. Reflection can bring perception. But reflection and introspection require time. So many spiritual outcomes require saving truths to be mixed with time, forming the elixir of experience, that sovereign remedy for so many things.
"Without patient and meek endurance we will learn less, see less, feel less, and hear less. We who are egocentric and impatient shut down so much of our receiving capacity...How could there be refining fires without enduring some heat? Or greater patience without enduring some instructive waiting? Or more empathy without bearing one another's burdens - not only that others' burdens may be lightened, but that we may be enlightened through greater empathy? How can there be later magnification without enduring some present deprivation? (Ensign, Neal A. Maxwell, "Endure it Well").
4. Patience With Others - them with you and you with them:
During the 2010 General Relief Society Meeting, President Monson said: "Life is perfect for none of us. Rather than being judgmental and critical of each other, may we have the pure love of Christ for our fellow travelers in this journey through life. May we recognize that each one is doing her best to deal with the challenges which come our way, and may we strive to do our best to help out." (Church News, March 3, 2012).
Neal A. Maxwell said: "When, for the moment, we ourselves are not being stretched on a particular cross, we ought to be at the foot of someone else's - full of empathy and proffering spiritual refreshment." (Ensign, Neal A. Maxwell, "Endure it Well").
It is easy to make judgments on each other, but we are so inept to judge each other, because no one can really know what others have gone through, or why they are behaving the way they are. We need to be patient, tolerant, kind and compassionate towards each other. We are all trying to do our best - and sometimes we just need a little help and understanding from each other to help see us through.
If however, you are on the other end of this and you are feeling judged, isolated, alone, misunderstood, misrepresented - you can be patient and tolerant too. Realizing others may not have gone through what you are going through, and they do not (can not) understand. Always remembering, we are all in different places on our journey. Patience, tolerance, kindness, love - we are all in need.
5. Patience With Self:
"Continue in patience until ye are perfected" (D&C 67:13). It doesn't say be perfect today, it says to continue in patience until ye are perfected. We also need to be patient, tolerant, kind, and loving to ourselves.
Tuesday, May 29, 2012
Day 202
Katie seems to be doing okay. She looks pale and is tired more than usual, and she is a little weak - she wants to be carried up and down the stairs. However, she is still smiling and playing - so for the most part, things are good.
"No matter the burdens we face in life as a consequence of natural conditions, the misconduct of others, or our own mistakes and shortcomings, we are all children of a loving Heavenly Father, who sent us to earth as part of His eternal plan for our growth and progress. Our unique individual experiences can help us prepare to return to Him. The adversity and afflictions that are ours, however difficult to bear, last, from heaven's perspective, for 'but a small moment; and then, if [we] endure it well, God shall exalt [us] on high.' We must do everything we can to bear our burdens 'well' for however long our 'small moment' carrying them lasts." (Whitney Clayton, "That Your Burdens May Be Light," Ensign, Nov. 2009, 13).
I have been feeling a bit worn down. I can endure, but there are moments when enduring it well, can feel like just one more thing to endure! There are days when I feel lucky to simply cope, let alone endure well! As a result, it is sometimes hard to feel like I am learning enough, doing enough, or progressing enough. However, I know I don't have to do it alone. So, today I am glad for a loving Father in Heaven, the grace of Jesus Christ, and a good husband who loves me unconditionally and helps me endure when I feel weighed down by the burdens that are ours to bear.
"No matter the burdens we face in life as a consequence of natural conditions, the misconduct of others, or our own mistakes and shortcomings, we are all children of a loving Heavenly Father, who sent us to earth as part of His eternal plan for our growth and progress. Our unique individual experiences can help us prepare to return to Him. The adversity and afflictions that are ours, however difficult to bear, last, from heaven's perspective, for 'but a small moment; and then, if [we] endure it well, God shall exalt [us] on high.' We must do everything we can to bear our burdens 'well' for however long our 'small moment' carrying them lasts." (Whitney Clayton, "That Your Burdens May Be Light," Ensign, Nov. 2009, 13).
I have been feeling a bit worn down. I can endure, but there are moments when enduring it well, can feel like just one more thing to endure! There are days when I feel lucky to simply cope, let alone endure well! As a result, it is sometimes hard to feel like I am learning enough, doing enough, or progressing enough. However, I know I don't have to do it alone. So, today I am glad for a loving Father in Heaven, the grace of Jesus Christ, and a good husband who loves me unconditionally and helps me endure when I feel weighed down by the burdens that are ours to bear.
Monday, May 28, 2012
Day 201
Last night was a better night for Katie. The night before, she was up several times, but last night she slept through the night. For that I am glad! She needs her rest.
Katie's hair and eyelashes are growing back. Her eyelashes have filled in, and she has just a touch of hair on her head (which she is very excited about and proud of). Katie has gone through a lot at an early age. I have wondered lately how all of this has changed her. I don't think we can ever really know. However, I do know she is incredibly sweet and loving. She is very concerned about other's feelings. She does not like people to be sad and she will do her best to make other's "happy". Katie loves to give what she calls, "happy kisses." Around our house, Katie's "happy kisses" are known to make anything and everything better! Katie showers us with hugs, kisses, and smiles. She is our joy and our sweet sunshine. She, who is sick, is the greatest comfort and source of cheer. I think she is incredibly brave and inspiring! Katie may be young, but she is very aware. I think it would be wrong to assume she has not learned, or hasn't been affected by what she has (and will) go through.
"Learning to endure times of disappointment, suffering, and sorrow is part of our on-the-job training. These experiences, while often difficult to bear at the time, are precisely the kinds of experiences that stretch our understanding, build our character, and increase our compassion for others." (Joseph B. Wirthlin, "Come What May, and Love It," Ensign, Nov. 2008, 27).
Katie's hair and eyelashes are growing back. Her eyelashes have filled in, and she has just a touch of hair on her head (which she is very excited about and proud of). Katie has gone through a lot at an early age. I have wondered lately how all of this has changed her. I don't think we can ever really know. However, I do know she is incredibly sweet and loving. She is very concerned about other's feelings. She does not like people to be sad and she will do her best to make other's "happy". Katie loves to give what she calls, "happy kisses." Around our house, Katie's "happy kisses" are known to make anything and everything better! Katie showers us with hugs, kisses, and smiles. She is our joy and our sweet sunshine. She, who is sick, is the greatest comfort and source of cheer. I think she is incredibly brave and inspiring! Katie may be young, but she is very aware. I think it would be wrong to assume she has not learned, or hasn't been affected by what she has (and will) go through.
"Learning to endure times of disappointment, suffering, and sorrow is part of our on-the-job training. These experiences, while often difficult to bear at the time, are precisely the kinds of experiences that stretch our understanding, build our character, and increase our compassion for others." (Joseph B. Wirthlin, "Come What May, and Love It," Ensign, Nov. 2008, 27).
Sunday, May 27, 2012
Day 200
Day 200. It has been quite a journey so far. We are thankful to those of you who are still following along with us. We are grateful for your support and prayers.
Our family went to the zoo yesterday, there was a break in the weather and a small window of opportunity with Katie. Her levels were good on Friday and the chemo usually takes a couple of days before it fully kicks in. Plus, we were all in need of a little "joy." We have been couped up too long. So we put sunscreen, a hat, and a mask on Katie and went. We only stayed two hours - that was all Katie could do. She was wiped out, but she had a good time. This phase we are in, will progressively get worse as we go along, so we "did" while we could "do."
Donald P. Halstrom said the two scriptures, 'Men are, that they might have joy' (2Nephi 2:25) and 'for it must needs be, that there is an opposition in all things' (2 Nephi 2:11) are not contradictory; they are complementary." ("Turn to the Lord," Ensign, May 2010, 79). We could not experience the one, without experiencing the other.
Our family went to the zoo yesterday, there was a break in the weather and a small window of opportunity with Katie. Her levels were good on Friday and the chemo usually takes a couple of days before it fully kicks in. Plus, we were all in need of a little "joy." We have been couped up too long. So we put sunscreen, a hat, and a mask on Katie and went. We only stayed two hours - that was all Katie could do. She was wiped out, but she had a good time. This phase we are in, will progressively get worse as we go along, so we "did" while we could "do."
Donald P. Halstrom said the two scriptures, 'Men are, that they might have joy' (2Nephi 2:25) and 'for it must needs be, that there is an opposition in all things' (2 Nephi 2:11) are not contradictory; they are complementary." ("Turn to the Lord," Ensign, May 2010, 79). We could not experience the one, without experiencing the other.
Saturday, May 26, 2012
Day 199
Katie got two different types of chemo yesterday. We were at the clinic for about five hours. Time (199 days at this) doesn't make it any easier. Katie dreads getting her port accessed and it seems to be more traumatizing as we go along. However, with Scott's help we made it through the day. Katie's levels were up, with the exception of her blood level. She may end up needing a blood transfusion.
January 12, 2014, is Katie's projected completion date - the end of her treatments (not the end of her check-ups, but the end of her treatments). That will be a day to have a party! It sounds like a long time away, but as Scott reminded me, "one day at a time." We found out something else new yesterday. The last phase, called "maintenance" will last almost a year and a half. At first, we were told Katie would get chemo once a month, then they said it will be chemo once a month plus five days of steroids monthly, then it was all that plus a daily chemo pill - now we are told it will be monthly doses of chemo, five days of steroids monthly, a daily pill, plus a spinal tap every three months. They say that last year and a half is supposed to be the "easy phase" but that still sounds like a lot to me!!! I am glad it will no longer be weekly or ten day chemo, but that is still a lot. However, we are not there yet. Right now we are in "Interm-Maintenance II," doing increased doses of chemo every 10 days, plus another spinal.... One day at a time.
"Every life has peaks and shadows and times when it seems that the birds don't sing and bells don't ring. Yet in spite of discouragement and adversity, those who are happiest seem to have a way of learning from difficult times, becoming stronger, wiser, and happier as a result." (Joseph B. Wirthlin, "Come What May and Love It," Ensign, Nov. 2008, 26).
January 12, 2014, is Katie's projected completion date - the end of her treatments (not the end of her check-ups, but the end of her treatments). That will be a day to have a party! It sounds like a long time away, but as Scott reminded me, "one day at a time." We found out something else new yesterday. The last phase, called "maintenance" will last almost a year and a half. At first, we were told Katie would get chemo once a month, then they said it will be chemo once a month plus five days of steroids monthly, then it was all that plus a daily chemo pill - now we are told it will be monthly doses of chemo, five days of steroids monthly, a daily pill, plus a spinal tap every three months. They say that last year and a half is supposed to be the "easy phase" but that still sounds like a lot to me!!! I am glad it will no longer be weekly or ten day chemo, but that is still a lot. However, we are not there yet. Right now we are in "Interm-Maintenance II," doing increased doses of chemo every 10 days, plus another spinal.... One day at a time.
"Every life has peaks and shadows and times when it seems that the birds don't sing and bells don't ring. Yet in spite of discouragement and adversity, those who are happiest seem to have a way of learning from difficult times, becoming stronger, wiser, and happier as a result." (Joseph B. Wirthlin, "Come What May and Love It," Ensign, Nov. 2008, 26).
Friday, May 25, 2012
Day 198
We are going to the clinic this morning (not camping). Katie gets more chemo today (not a picnic). We are grateful to Scott's mom for always helping us out and taking care of Conner on our clinic days - she has done a lot! We are grateful to all of you who are still following the blog and praying for our sweet Katie. We are glad to have your continued support!
We broke the news last night to Nathan - that we won't be able to go to California this summer. I was still waffling a bit as we told him, but Scott said there is no way we can go to California if Katie can't swim in the ocean, or a pool. He is right, I know he is right...but Nathan loves the ocean...he lives for it. That has been my main struggle with not going to California - wanting it for Nathan. However, Nathan is a remarkable young man, he took it as well as a 15 year old could. He said he was very disappointed, but that he understands. Now we just have to come up with plan B.
"As we pass through the trials of life, let us keep an eternal perspective, let us not complain, let us become even more prayerful, let us serve others, and let us forgive one another. As we do this, 'all things [will] work together for good to [us] that love God.'" (James B. Martino, “All Things Will Work Together for Good,” Ensign, May 2010, 103).
We broke the news last night to Nathan - that we won't be able to go to California this summer. I was still waffling a bit as we told him, but Scott said there is no way we can go to California if Katie can't swim in the ocean, or a pool. He is right, I know he is right...but Nathan loves the ocean...he lives for it. That has been my main struggle with not going to California - wanting it for Nathan. However, Nathan is a remarkable young man, he took it as well as a 15 year old could. He said he was very disappointed, but that he understands. Now we just have to come up with plan B.
"As we pass through the trials of life, let us keep an eternal perspective, let us not complain, let us become even more prayerful, let us serve others, and let us forgive one another. As we do this, 'all things [will] work together for good to [us] that love God.'" (James B. Martino, “All Things Will Work Together for Good,” Ensign, May 2010, 103).
Thursday, May 24, 2012
Day 197
Yesterday, I showed Katie the pictures I posted on the blog. When we came to the picture of her in the toy car, she asked, "What is that?" I said, "The car." Pointing higher, she said, "No, what is that?" I said, "Hair?" She said, "Yes...hair?" She was surprised to see herself with some hair on her head. I told her that her hair had started to grow back, but that it had fallen out again. I assured her it will grow back. ( I didn't have the heart to tell her it may fall out again!)
The ironic part is, just the night before, I found a baggie with a long lock of Katie's hair in it, from when we cut her hair after it first began falling out. Finding that lock of hair made me cry. Not so much because of the hair itself, but because of what it represents - a time prior to appointments, treatments, chemo, spinal taps, medications. A time prior to knowing our child had a life threatening disease. So much has changed in the last six months! Some things gained, but some things missed. We missed going to New Mexico at Christmas, and therefore we missed going to the snow. For months Katie has talked about going to G.G.'s (Grandma Nygren's) house to see the snow. She finally understands that winter is over and there is no more snow at G.G.'s house - that we will have to wait until next winter to play in the snow. So, this week, Katie has taken to playing winter. We put on fake coats, hats, snow pants, gloves and boots. She makes "snow angels" in the carpet, we throw "snowballs" and make "snowmen." The amazing thing is that she came up with this game herself. I walked in the room one day and she was laying on the carpet, I asked her what she was doing and she told me she was making a snow angel. I asked her if I could play and she told me I could if I put on my "snow clothes". I am glad she has such a great imagination!
Just this morning, I was thinking about the long weekend coming up. I thought it would be nice to go camping - it would be so nice to get away - we haven't been able to go anywhere because of the intensity and regularity of Katie's treatments. Right now, Katie is getting treatments every ten days verses every seven, so camping seemed possible, plus Scott has Monday off of work. So, I started planning all the food I needed to buy, etc... and then I saw an appointment reminder for Katie, for Friday morning. Reality hit. Katie will be getting chemo on Friday and we will not be going camping this weekend. Our California trip this summer also seems less and less doable as Scott and I have thought about it. So, like I said, some things we have missed out on. But we have gained some good things too. We have a greater appreciation for what we do have. A better perspective on our lives. Our daughter is responding to treatments, and she is alive. When I think of it that way, we can miss a year of snow, some camping trips, and California. We have our daughter and we are blessed.
Elder Richard G. Scott has said: "There is no guarantee that life will be easy for anyone. We grow and learn more rapidly by facing and overcoming challenges. You are here to prove yourself, to develop, and to overcome. There will be constant challenges that cause you to think, to make proper judgments, and to act righteously. You will grow from them." ("Living Right," Ensign, Jan. 2007, 13).
The ironic part is, just the night before, I found a baggie with a long lock of Katie's hair in it, from when we cut her hair after it first began falling out. Finding that lock of hair made me cry. Not so much because of the hair itself, but because of what it represents - a time prior to appointments, treatments, chemo, spinal taps, medications. A time prior to knowing our child had a life threatening disease. So much has changed in the last six months! Some things gained, but some things missed. We missed going to New Mexico at Christmas, and therefore we missed going to the snow. For months Katie has talked about going to G.G.'s (Grandma Nygren's) house to see the snow. She finally understands that winter is over and there is no more snow at G.G.'s house - that we will have to wait until next winter to play in the snow. So, this week, Katie has taken to playing winter. We put on fake coats, hats, snow pants, gloves and boots. She makes "snow angels" in the carpet, we throw "snowballs" and make "snowmen." The amazing thing is that she came up with this game herself. I walked in the room one day and she was laying on the carpet, I asked her what she was doing and she told me she was making a snow angel. I asked her if I could play and she told me I could if I put on my "snow clothes". I am glad she has such a great imagination!
Just this morning, I was thinking about the long weekend coming up. I thought it would be nice to go camping - it would be so nice to get away - we haven't been able to go anywhere because of the intensity and regularity of Katie's treatments. Right now, Katie is getting treatments every ten days verses every seven, so camping seemed possible, plus Scott has Monday off of work. So, I started planning all the food I needed to buy, etc... and then I saw an appointment reminder for Katie, for Friday morning. Reality hit. Katie will be getting chemo on Friday and we will not be going camping this weekend. Our California trip this summer also seems less and less doable as Scott and I have thought about it. So, like I said, some things we have missed out on. But we have gained some good things too. We have a greater appreciation for what we do have. A better perspective on our lives. Our daughter is responding to treatments, and she is alive. When I think of it that way, we can miss a year of snow, some camping trips, and California. We have our daughter and we are blessed.
Elder Richard G. Scott has said: "There is no guarantee that life will be easy for anyone. We grow and learn more rapidly by facing and overcoming challenges. You are here to prove yourself, to develop, and to overcome. There will be constant challenges that cause you to think, to make proper judgments, and to act righteously. You will grow from them." ("Living Right," Ensign, Jan. 2007, 13).
Wednesday, May 23, 2012
Day 196 Pictures
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| Shoes made just for Katie |
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| Thank you Kelly & Madison |
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| Daddy swinging with Katie |
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| Katie & Conner with cousins Ryan & Tyler |
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| Katie playing princess dress-up |
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| Katie & Conner with Grandma Nygren |
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| Watching a movie together |
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| Mommy & Katie |
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| Uncle Scott & Aunt Janna |
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| Katie going for a drive |
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| Katie and 2nd cousin Lilly |
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| Conner playing dress-up |
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| Grumpy Katie on steroids eating her cream cheese |
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| Coloring Easter eggs...and fingers |
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| The ducks who came to visit us |
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| Our duck pond |
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| Katie's new purse |
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| Two sweet angels |
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| Easter Sunday |
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| "Finger" painting |
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| Daddy & daughter |
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| Katie's brother Nathan & cousin Jacob |
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| "Too bright" |
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| swimming in the kiddy pool |
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| brother & sister - fun days together |
Tuesday, May 22, 2012
Day 195
Katie has not felt strong enough to go up and down the stairs, but this morning she seems a little stronger. Last night we went to look at the new temple being built in Gilbert. As we got close to the temple, I commented on my surprise at how many people were there. Katie asked why all the people were there. I told her they wanted to come see the temple because it looks so pretty. Katie said, " Oh! They want to see the temple because it is pretty like me?" We all laughed, "Yes Katie, because the temple is pretty like you." I am glad her self-esteem is still intact!
Elder Richard G. Scott said: "Peace of conscience is the essential ingredient to your peace of mind. Without peace of conscience, you can have no real peace of mind. Peace of conscience relates to your inner self and is controlled by what you personally do. Peace of conscience can come only from God through a righteous, obedient life. It cannot exist otherwise" ("Peace of Conscience and Peace of mind," Ensign, Nov. 2004, 15).
Elder Richard G. Scott said: "Peace of conscience is the essential ingredient to your peace of mind. Without peace of conscience, you can have no real peace of mind. Peace of conscience relates to your inner self and is controlled by what you personally do. Peace of conscience can come only from God through a righteous, obedient life. It cannot exist otherwise" ("Peace of Conscience and Peace of mind," Ensign, Nov. 2004, 15).
Monday, May 21, 2012
Day 194
It was good to go "home" to New Mexico, but it is great to be back. Katie is doing okay. She is having some tummy troubles and she seems to tire easily, but she is doing fine. I have gotten a lot of hugs and kisses since I have gotten back. Katie keeps saying, "Mommy your home, I am so glad you are home!" I am glad to be home too. I am still unable to post on the blog from my computer - I am having to do this on the iPad - which doesn't post things the way I want. I also wanted to post pictures of Katie, but can't do that either! (If anyone knows about blogs, I could use some help!!!)
This quote is from Lawrence E. Corbridge: "The Lord's way is not hard. Life is hard, not the gospel. 'There is an opposition in all things' (2 Nephi 2:11), everywhere, for everyone. Life is hard for all of us, but life is also simple. We have only two choices (see Moroni 7:15-17). We can either follow the Lord and be endowed with His power and have peace, light, strength, knowledge, confidence, love, and joy, or we can go some other way, any other way, whatever other way, and go it alone - without His support, without His power, without guidance, in darkness, turmoil, doubt, grief, and despair. And I ask, which way is easier?" ("The Way," Ensign, Nov. 2008, 36).
This quote is from Lawrence E. Corbridge: "The Lord's way is not hard. Life is hard, not the gospel. 'There is an opposition in all things' (2 Nephi 2:11), everywhere, for everyone. Life is hard for all of us, but life is also simple. We have only two choices (see Moroni 7:15-17). We can either follow the Lord and be endowed with His power and have peace, light, strength, knowledge, confidence, love, and joy, or we can go some other way, any other way, whatever other way, and go it alone - without His support, without His power, without guidance, in darkness, turmoil, doubt, grief, and despair. And I ask, which way is easier?" ("The Way," Ensign, Nov. 2008, 36).
Friday, May 18, 2012
Day 191
I am writing this post from Albuquerque, New Mexico. I flew here this morning and I will be driving with two of my brothers to Farmington for the weekend. My mother does not have a computer, so I will not be able to post for the rest of this weekend. All seven of my brothers and my sister will be in Farmington for a family meeting. I debated back and forth about going, but Katie seemed okay this morning, and Scott will be home all weekend. It was literally a last minute decision, but here I am. I am so glad to be married to Scott. He is the best husband, man, and father. I am so grateful for him!
We brought home some bubbles and treats for Katie and Conner from Zach's wedding last night. At 6:30 this morning, Katie wanted to go outside and blow bubbles - so we did (Conner was still sleeping and Scott was driving Nathan to school, so it was just Katie and I). The wind was blowing a little bit this morning, and my hair was getting in my face. Katie and I like to make up little songs to sing. Here is how our song went this morning: Katie started singing, "The wind is blowing your hair in your face... my hair is all gone... so the wind can't blow my hair in my face..." I sang back, "But your hair will grow back and then the wind will blow your hair in your face too..." Katie smiled and continued singing, "Yes, my hair will grow back and then the wind will blow my hair in my face too... and then we will put flowers, bows and braids in my hair..." We both laughed and she hugged me. She is the sweetest thing in the world and I love her so much! I am so grateful for my family. I love them so much, and miss them already (I was homesick for them, before I even got on the plane). What a blessing they all are to me. Our family, our life, that is our focus and our joy. We are blessed. We are grateful for your prayers - they have helped to strengthen us.
We brought home some bubbles and treats for Katie and Conner from Zach's wedding last night. At 6:30 this morning, Katie wanted to go outside and blow bubbles - so we did (Conner was still sleeping and Scott was driving Nathan to school, so it was just Katie and I). The wind was blowing a little bit this morning, and my hair was getting in my face. Katie and I like to make up little songs to sing. Here is how our song went this morning: Katie started singing, "The wind is blowing your hair in your face... my hair is all gone... so the wind can't blow my hair in my face..." I sang back, "But your hair will grow back and then the wind will blow your hair in your face too..." Katie smiled and continued singing, "Yes, my hair will grow back and then the wind will blow my hair in my face too... and then we will put flowers, bows and braids in my hair..." We both laughed and she hugged me. She is the sweetest thing in the world and I love her so much! I am so grateful for my family. I love them so much, and miss them already (I was homesick for them, before I even got on the plane). What a blessing they all are to me. Our family, our life, that is our focus and our joy. We are blessed. We are grateful for your prayers - they have helped to strengthen us.
Thursday, May 17, 2012
Day 190
We were at the clinic for seven hours yesterday. It was a long day. It was a very emotionally draining day. Katie did not want to be there and she got VERY upset when the nurse accessed her port. Katie's nurse even commented several times on how sad and hard Katie's access was. It was a really hard day for all of us. I was exhausted by 11:00 a.m. and we had a full day still ahead of us. I am so glad Scott stayed with us through the access and spinal tap - he went back to work after we were back at the clinic and Katie was hooked up to her IV chemo. I am so grateful for him!
Katie had a rough night and an early morning. She has been very thirsty. Her tummy was a little upset last night before bed, but she told me she feels okay this morning.
President Gordon B. Hinckley counseled: "You need more than your own wisdom in rearing [your children]. You need the help of the Lord. Pray for that help and follow the inspiration which you receive" (The Fabric and Faith of Testimony," Ensign, Nov. 1995, 89).
Wednesday, May 16, 2012
Day 189
We are going to the clinic this morning. Katie is starting a new phase, called Interm Maintanance II. She will start her chemo at 60% of her last highest dose during Interm Maintanance I, and then every ten days her dosage will go up. This phase will last eight weeks, so by the end of of this phase her dosage will be up a lot higher than the last time, because we are starting at a higher dose. I don't know what else to say about that, because I don't know what to expect. I know that today she gets chemo put in her spine and in her port. Today will be an all day treatment day. I am glad Scott is coming with us for the hardest part of the day today.
In 1905, President Joseph F. smith made this statement about true greatness: "Those things which we call extraordinary, remarkable, or unusual may make history, but they do not make real life... After all, to do well those things which God ordained to be the common lot of all mankind, is the truest greatness. To be a successful father or a successful mother is greater than to be a successful general or statesman."
Tuesday, May 15, 2012
Day 188
Our computer is not working right today, so I am doing this on the iPad. Yesterday, Katie, Conner and I joined Scott at the clinic. We gave out hats, cups, stickers, pencils, etc... while Scott showed the children the inside and outside of the fire truck. The best part was that they could turn on the fire hose and spray water. The kids all loved it! Especially Owen, the little boy who Dr. Dana wanted to set this up for. It was also nice for Katie to "help" the other children who are sick. Parents and nurses were bringing children out who were on IV pumps, getting blood transfusions. It was a great distraction for them. It was a nice day for all of us. I am glad we got the chance to help.
"By small and simple things great things are brought to pass" (Alma 36:6).
Monday, May 14, 2012
Day 187
Well...two days until we start the next phase (sigh) - if she makes counts that is. She is looking pale to me, but she is acting okay. So, I guess we will see what happens on Wednesday.
Last time we were at the clinic, Dr. Dana told us of a little boy whose cancer had come back after a year of treatment. He and his parents were having a difficult time dealing with the new realities that a relapse brings. The little boy loves fire trucks, fire fighters, etc.. So, Dr. Dana asked Scott if he could bring a fire truck to the hospital/clinic for this little boy to see. Today, Scott and another fire fighter are taking a fire truck for to the clinic/hospital. Any of the children who are there today will be able to get on the fire truck. The legal department of the hospital won't let the children ride, but they can get in and turn on the lights, etc... I hope this will brighten this little boys day, and hopefully in some small way, lighten the parents sorrow by experiencing a moment of joy with their son. We are glad Scott can do this today - for all the children there.
President Dieter F. Uchtdorf said: "Too often we fail to experience the bliss that comes from daily, practical...service. At times assignments can feel like burdens. ...Let us not pass through life immersed in the three W's: wearied, worrying, and whining. We live beneath our privileges when we allow worldly anchors to keep us away from the abundant joy that comes from faithful and dedicated... service, especially within the walls of our own homes. We live beneath our privileges when we fail to partake of the feast of happiness, peace, and joy that God grants so bountifully to faithful..servants" ("Your Potential, Your Privilege," Apr. 2011 general conference).
Last time we were at the clinic, Dr. Dana told us of a little boy whose cancer had come back after a year of treatment. He and his parents were having a difficult time dealing with the new realities that a relapse brings. The little boy loves fire trucks, fire fighters, etc.. So, Dr. Dana asked Scott if he could bring a fire truck to the hospital/clinic for this little boy to see. Today, Scott and another fire fighter are taking a fire truck for to the clinic/hospital. Any of the children who are there today will be able to get on the fire truck. The legal department of the hospital won't let the children ride, but they can get in and turn on the lights, etc... I hope this will brighten this little boys day, and hopefully in some small way, lighten the parents sorrow by experiencing a moment of joy with their son. We are glad Scott can do this today - for all the children there.
President Dieter F. Uchtdorf said: "Too often we fail to experience the bliss that comes from daily, practical...service. At times assignments can feel like burdens. ...Let us not pass through life immersed in the three W's: wearied, worrying, and whining. We live beneath our privileges when we allow worldly anchors to keep us away from the abundant joy that comes from faithful and dedicated... service, especially within the walls of our own homes. We live beneath our privileges when we fail to partake of the feast of happiness, peace, and joy that God grants so bountifully to faithful..servants" ("Your Potential, Your Privilege," Apr. 2011 general conference).
Sunday, May 13, 2012
Day 186
Happy Mother's Day! I was supposed to stay in bed, but I just peeked and my sweet husband and children are making breakfast for me. Nathan is frying bacon, Katie and Conner are coloring cards for me and Scott is making eggs souffle and orange rolls. I am a blessed woman! I am glad to have such a wonderful family.
Katie is doing well, she had a better night last night. She looks a bit pale to me, but we will just see how the week goes. One day at a time.
President Joseph F. Smith said: "No love in all the world can equal the love of a true mother...The true mother, the mother who has the fear of God and the love of truth in her soul, would never hide from danger or evil and leave her child exposed to it...The love of a true mother comes nearer being like the love of God than any other kind of love" (Teachings of Presidents of the Church, 35-36).
Katie is doing well, she had a better night last night. She looks a bit pale to me, but we will just see how the week goes. One day at a time.
President Joseph F. Smith said: "No love in all the world can equal the love of a true mother...The true mother, the mother who has the fear of God and the love of truth in her soul, would never hide from danger or evil and leave her child exposed to it...The love of a true mother comes nearer being like the love of God than any other kind of love" (Teachings of Presidents of the Church, 35-36).
Saturday, May 12, 2012
Day 185
I'm still a little off today. Katie had a rough night last night for some reason, and it has been an up and down day. It is hard to know if her levels are down, or if she is just being two.
I am not sure where I got this quote, but I like it (and needed it today): "Because we are being constantly exposed to the world's definition of greatness, it is understandable that we might make comparisons between what we are and what others are - or seem to be - and also between what we have and what others have. Although it is true that making comparisons can be beneficial and may motivate us to accomplish much good and to improve our lives, we often allow unfair and improper comparisons to destroy our happiness when they cause us to feel unfulfilled or inadequate or unsuccessful. Sometimes, because of these feelings, we are led into error and dwell on our failures while ignoring aspects of our lives that may contain elements of true greatness."
I am glad for a husband who always seems to see greatness in me. I believe that "what you focus on increases" - today is a good day to focus on the positive, the good, and the greatness.
I am not sure where I got this quote, but I like it (and needed it today): "Because we are being constantly exposed to the world's definition of greatness, it is understandable that we might make comparisons between what we are and what others are - or seem to be - and also between what we have and what others have. Although it is true that making comparisons can be beneficial and may motivate us to accomplish much good and to improve our lives, we often allow unfair and improper comparisons to destroy our happiness when they cause us to feel unfulfilled or inadequate or unsuccessful. Sometimes, because of these feelings, we are led into error and dwell on our failures while ignoring aspects of our lives that may contain elements of true greatness."
I am glad for a husband who always seems to see greatness in me. I believe that "what you focus on increases" - today is a good day to focus on the positive, the good, and the greatness.
Friday, May 11, 2012
Day 184
It is 7:00 p.m. and I am just now posting this...it's been that kind of day. Nothing really bad happened, just an off day. Katie is doing good. We are very glad about that! Thank you for your prayers.
I would like to shield and protect my children from any hardship, pain, or challenge, but I know that would stunt their growth and development. However, watching my children struggle and hurt, is the most painful thing I have ever had to endure. My solice comes from knowing that Heavenly Father knows and loves my children too, and that he will help them even when I can't.
Elder Russell M. Nelson said: "Parents bear the primary responsibility to strengthen their [children's] faith. Let them feel your faith, even when sore trials come upon you. Let your faith be focused on our loving Heavenly Father and His Beloved Son, the Lord Jesus Christ. Teach that faith with deep conviction. Teach each precious boy or girl that he or she is a child of God, created in His image, with a sacred purpose and potential. Each is born with challenges to overcome and faith to be developed" (Russell M. Nelson, "Face the Future with Faith," Apr. 2011 general conference).
I would like to shield and protect my children from any hardship, pain, or challenge, but I know that would stunt their growth and development. However, watching my children struggle and hurt, is the most painful thing I have ever had to endure. My solice comes from knowing that Heavenly Father knows and loves my children too, and that he will help them even when I can't.
Elder Russell M. Nelson said: "Parents bear the primary responsibility to strengthen their [children's] faith. Let them feel your faith, even when sore trials come upon you. Let your faith be focused on our loving Heavenly Father and His Beloved Son, the Lord Jesus Christ. Teach that faith with deep conviction. Teach each precious boy or girl that he or she is a child of God, created in His image, with a sacred purpose and potential. Each is born with challenges to overcome and faith to be developed" (Russell M. Nelson, "Face the Future with Faith," Apr. 2011 general conference).
Thursday, May 10, 2012
Day 183
I cancelled Katie's appointment for today. The nurse said we could bring her in any time, if we felt like she needed a transfusion. However, I think Katie is on her way up and not on her way down. So, we will enjoy the "up" while we have it. We are always glad for the good days!
As Mother Day approaches, I feel a great awareness regarding my responsibilities to my children, as their mother. This quote by President Gordon B. Hinckley is a sobering reminder: “Never forget that these little ones are the sons and daughters of God and that yours is a custodial relationship to them, that He was a parent before you were parents and that He has not relinquished His parental rights or interest in these little ones. Now, love them, take care of them. Fathers, control your tempers, now and in all the years to come. Mothers, control your voices, keep them down. Rear your children in love, in the nurture and admonition of the Lord. Take care of your little ones, welcome them into your homes and nurture and love them with all of your hearts” (Gordon B. Hinckley, Salt Lake University Third Stake conference, 3 Nov. 1996; in Church News, 1 Mar. 1997, 2).
As Mother Day approaches, I feel a great awareness regarding my responsibilities to my children, as their mother. This quote by President Gordon B. Hinckley is a sobering reminder: “Never forget that these little ones are the sons and daughters of God and that yours is a custodial relationship to them, that He was a parent before you were parents and that He has not relinquished His parental rights or interest in these little ones. Now, love them, take care of them. Fathers, control your tempers, now and in all the years to come. Mothers, control your voices, keep them down. Rear your children in love, in the nurture and admonition of the Lord. Take care of your little ones, welcome them into your homes and nurture and love them with all of your hearts” (Gordon B. Hinckley, Salt Lake University Third Stake conference, 3 Nov. 1996; in Church News, 1 Mar. 1997, 2).
Wednesday, May 9, 2012
Day 182
Katie is still looking good to us, but Scott wants to wait until tomorrow morning before I cancel her appointment, because you just never know. If Katie doesn't go in tomorrow and doesn't need blood anytime soon, then our next appointment is scheduled for May 16th (we have Zach's wedding the next day, on the 17th. It is terrible timing, but our only other option for treatment was to split it into two parts, part on the wedding day, and the other part the day after - we choose to do one full day treatment the day before the wedding - we aren't sure how Katie will be feeling, and how all of this is going to work out - but Katie's treatment can't be delayed).
May 16th is the beginning of a new phase. Katie will go in for a spinal tap and have spinal fluid removed from her spine and chemo put in its place, when she wakes up from that procedure, then we will go back to the clinic to have a different type of IV chemo put into her port, plus another medication to prevent pneumonia. It will be a long no fun day. But for now, we are glad she is feeling better than anticipated at this point.
I don't want to take Katie in and access her port just for this, but it would be nice to know if her immune levels have gone up, so we could go out and do something. Her levels have been low, so we have been "home bound" for a long time now, because Katie can't go out. Scott and I take turns every other Sunday staying home with Katie. I go to the grocery store when Scott gets home from work. Because Katie can't really go anywhere, I/we can't go anywhere. On the weekends when Scott is home and I could go out by myself, I have chosen not to, because I would rather spend time together with Scott and together as a family. That part has been by choice. However, we are starting to go a little stir crazy and I occasionally get that "cabin fever" feeling. I know Katie and Conner are missing going out. We talk about all the things we will go and do when Katie gets better - things we used to take for granted - going to church together, going out to eat, going to the mall, going to the park, going to the zoo, etc. For now, we go on walks every night and go for drives in the car. Katie and Conners big excitement has been going through the drive-through at the bank, Sonic, or the pharmacy. Yes...it will be nice when we can all go and do again!
President Thomas S. Monson has quoted Thomas Fuller as saying: “He does not believe that does not live according to his belief." (Ensign, "Living the Abundant Life," Jan., 2012) A simple yet profound truth!
May 16th is the beginning of a new phase. Katie will go in for a spinal tap and have spinal fluid removed from her spine and chemo put in its place, when she wakes up from that procedure, then we will go back to the clinic to have a different type of IV chemo put into her port, plus another medication to prevent pneumonia. It will be a long no fun day. But for now, we are glad she is feeling better than anticipated at this point.
I don't want to take Katie in and access her port just for this, but it would be nice to know if her immune levels have gone up, so we could go out and do something. Her levels have been low, so we have been "home bound" for a long time now, because Katie can't go out. Scott and I take turns every other Sunday staying home with Katie. I go to the grocery store when Scott gets home from work. Because Katie can't really go anywhere, I/we can't go anywhere. On the weekends when Scott is home and I could go out by myself, I have chosen not to, because I would rather spend time together with Scott and together as a family. That part has been by choice. However, we are starting to go a little stir crazy and I occasionally get that "cabin fever" feeling. I know Katie and Conner are missing going out. We talk about all the things we will go and do when Katie gets better - things we used to take for granted - going to church together, going out to eat, going to the mall, going to the park, going to the zoo, etc. For now, we go on walks every night and go for drives in the car. Katie and Conners big excitement has been going through the drive-through at the bank, Sonic, or the pharmacy. Yes...it will be nice when we can all go and do again!
President Thomas S. Monson has quoted Thomas Fuller as saying: “He does not believe that does not live according to his belief." (Ensign, "Living the Abundant Life," Jan., 2012) A simple yet profound truth!
Tuesday, May 8, 2012
Day 181
The past several weeks have been really hard, but I think we are beginning to see the light at the end of the tunnel and to feel some relief. We were told things would still be hard for the next couple of weeks, but once again, I think Katie is going to defy the odds and maintain her strength. We are not at the end of the week yet, so we sill see what the days ahead bring, but for now she seems to be holding strong. We are glad our daughter was blessed with such a strong constitution. Thank you for your prayers!
President Thomas S. Monson quoted Carl Sandberg as saying, “I see [life] not in the setting sun of a black night of despair ahead of us. I see [life] in the crimson light of a rising sun, fresh from the burning creative hand of God. I see great days ahead, great days possible to men and women of will and vision.” (Ensign, In Quest of the Abundant Life, Mar., 1998).
President Thomas S. Monson quoted Carl Sandberg as saying, “I see [life] not in the setting sun of a black night of despair ahead of us. I see [life] in the crimson light of a rising sun, fresh from the burning creative hand of God. I see great days ahead, great days possible to men and women of will and vision.” (Ensign, In Quest of the Abundant Life, Mar., 1998).
Monday, May 7, 2012
Day 180
Every day Katie will comment, "no more medicine, no more pokes." Throughout this phase, she has been getting a crushed up chemo pill first thing in the morning, and chemo shots just before bed at night. We are all so relieved that part is over with! Katie is still getting one pill a day, but I can sneak that pill into her drink. I am glad to be able to tell her there will be no more "pokes" at home.
Katie is big into "why" right now. Why?...Why?...Why?...about everything! After this goes on for a minute or two, I give up trying to explain things any further and revert to, "I don't know why." Only for her to say, "Why?" It's funny.
"...Let us run with patience the race that is set before us" (Hebrews 12:1).
Katie is big into "why" right now. Why?...Why?...Why?...about everything! After this goes on for a minute or two, I give up trying to explain things any further and revert to, "I don't know why." Only for her to say, "Why?" It's funny.
"...Let us run with patience the race that is set before us" (Hebrews 12:1).
Sunday, May 6, 2012
Day 179
Katie seems to be doing fine right now. Her daddy is painting her toenails and fingernails at this moment. She is a sweet ray of sunshine and we love her very much. Katie's eyelashes are falling out. She has lost almost all of her bottom lashes and some on the top - the whole top middle section of lashes on her left eye has fallen out - it is eyelashes then a gap and then eyelashes. Strange. The doctor said eyelashes tend to fall out more easily on little chemo patients than on adults. It doesn't matter, it is just part of the process, just thought I would comment on it.
I don't want to speak to soon, but I think we have avoided a hospital stay during this phase. We are glad and grateful! Thank you for all of your prayers for sweet Katie - your prayers have helped! We have been greatly blessed.
I met a mom at the clinic last Thursday while we were in the waiting room, her daughter is the same age as Katie, and has the same diagnosis of ALL. Her daughter was diagnosed four months before Katie, so they are a little bit ahead of us in this process. This was my first time to meet a mom who is currently going through the same things we are - it was nice to be able to talk with her for a few minutes. Her daughter still had her port in, which made me start to wonder...so when Dr. Dana came into our room, I asked her again when she thought we would be getting Katie's port out, and she said August/September. She had miscalculated when she told us June. Bummer!!! It is not a tragedy, but it is a let down. I was so excited for her to get the port out in time for summer vacation. We have planned a vacation to California with several of my brothers and my sister and their families in July. Getting Katie's port out in June would have been perfect. With a port in, Katie is allowed to swim in our private pool, but she can not swim in a public pool, or the ocean. So, now the dilemma. Do we go to California in July or don't we? I want my children to spend time with their cousins, and I want to spend time with my family, but to have Katie just sit there, and watch, while her brothers and cousins are getting wet and swimming all day, would be hard - for her and us. It is a bummer...but like I said, not a tragedy. We will figure something out one way or the other - and like my sister said, Katie is giving up one vacation of swimming, so she can have the rest of her life to swim. (Which is true, but try explaining that to a two/three year old). All is good though, and we are blessed. Katie is doing well.
President Thomas S. Monson, in speaking about facing challenges with courage, said: "Courage becomes a worthwhile and meaningful virtue when it is regarded not so much as a willingness to die manfully but as a determination to live decently.
I don't want to speak to soon, but I think we have avoided a hospital stay during this phase. We are glad and grateful! Thank you for all of your prayers for sweet Katie - your prayers have helped! We have been greatly blessed.
I met a mom at the clinic last Thursday while we were in the waiting room, her daughter is the same age as Katie, and has the same diagnosis of ALL. Her daughter was diagnosed four months before Katie, so they are a little bit ahead of us in this process. This was my first time to meet a mom who is currently going through the same things we are - it was nice to be able to talk with her for a few minutes. Her daughter still had her port in, which made me start to wonder...so when Dr. Dana came into our room, I asked her again when she thought we would be getting Katie's port out, and she said August/September. She had miscalculated when she told us June. Bummer!!! It is not a tragedy, but it is a let down. I was so excited for her to get the port out in time for summer vacation. We have planned a vacation to California with several of my brothers and my sister and their families in July. Getting Katie's port out in June would have been perfect. With a port in, Katie is allowed to swim in our private pool, but she can not swim in a public pool, or the ocean. So, now the dilemma. Do we go to California in July or don't we? I want my children to spend time with their cousins, and I want to spend time with my family, but to have Katie just sit there, and watch, while her brothers and cousins are getting wet and swimming all day, would be hard - for her and us. It is a bummer...but like I said, not a tragedy. We will figure something out one way or the other - and like my sister said, Katie is giving up one vacation of swimming, so she can have the rest of her life to swim. (Which is true, but try explaining that to a two/three year old). All is good though, and we are blessed. Katie is doing well.
President Thomas S. Monson, in speaking about facing challenges with courage, said: "Courage becomes a worthwhile and meaningful virtue when it is regarded not so much as a willingness to die manfully but as a determination to live decently.
"Said the American essayist and poet Ralph Waldo Emerson: 'Whatever you do, you need courage. Whatever course you decide on, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe that your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them.'
"There will be times when you will be frightened and discouraged. You may feel that you are defeated. The odds of obtaining victory may appear overwhelming. At times you may feel like David trying to fight Goliath. But remember—David did win!
"Courage is required to make an initial thrust toward one’s coveted goal, but even greater courage is called for when one stumbles and must make a second effort to achieve.
"Have the determination to make the effort, the single-mindedness to work toward a worthy goal, and the courage not only to face the challenges that inevitably come but also to make a second effort, should such be required. Sometimes courage is the little voice at the end of the day that says, “I’ll try again tomorrow.” (Ensign, "Living the Abundant Life, Jan., 2012).
Saturday, May 5, 2012
Day 178
Scott and the boys went on a Father and Son's camp-out yesterday. So, Katie and I had some girl time together. Katie chose burritos for dinner, we rented a movie, we colored pictures, and we went to Sonic for ice cream. Katie spent the night sleeping in my bed with me - which she was very excited about! Our fun continues today, until the boys come home. I am glad for girl time! Play-doh is next on our list.
"Mortals - by virtue of mortality - don't know the 'whys' of every mortal experience...But, because of our faith, we know that 'all things have been done in the wisdom of him who knoweth all things' (2Nephi 2:24).(Church News, Week of April 29, 2012, 16).
Friday, May 4, 2012
Day 177
We have two more weeks in this phase, but no more chemo. Now it is just wait, watch, and recover. Yesterday, Dr. Dana said Katie's levels will probably continue to go down. Katie's blood count was up, because she had just received the transfusion on Monday. We will take her to the clinic next Thursday if we think she needs another blood transfusion. Katie's platelets are low, but she will not get platelets unless she is actively bleeding (a nose bleed or gums bleeding that we can't stop). Dr. Dana (and we) do not want to give Katie platelets unless it is absolutely necessary, because Katie has such a severe reaction to platelets. She has been deemed "allergic" to platelets. There are things they can do to lessen Katie's reaction, but no one wants to risk it unless we have to. Katie's ANC (immune system) is down and she is weaker than usual. She isn't able to go up or down the stairs by herself right now, etc.. However, she is as cheerful and happy as always. She is fun to be around and she always makes us laugh. I find my joy in being Katie and Conner's mother. I am glad for the blessing of my children.
Richard Carlson, PH.D. said: "Obstacles and problems are a part of life. True happiness comes not when we get rid of all of our problems, but when we change our relationship to them, when we see our problems as a potential source of awakening, opportunities to practice patience, and to learn. Perhaps the most basic principle of spiritual life is that our problems are the best places to practice keeping our hearts open.
"In the Buddhist tradition, difficulties are considered to be so important to a life of growth and peace that a Tibetan prayer actually asks for them. It says, 'Grant that I may be given appropriate difficulties and sufferings on this journey so that my heart may be truly awakened and my practice of liberation and universal compassion may be truly fulfilled.' It is felt that when life is too easy, there are fewer opportunities for genuine growth" (Don't Sweat the Small Stuff, 209).
I certainly wouldn't pray for problems, but as they come, I have found it is better to ask "what can I learn" rather than to ask "why". Either way, it is hard, but one path leads to greater understanding and the other path leads to self-pity. I would rather learn from my trials, than have the experience simply wasted on me. I will not have Katie's pain during this trial be for nothing. I am trying to learn and grow all I can from the things we are going through. It isn't easy. It is hard. I have my down days, but more than anything, I want to be a good wife and a good mother, and that keeps me going. So, it is a circle, they help me and I help them. Family...what a beautiful plan! I am so grateful for those who have come before me - and for those who will come after me. What a blessing it is to know we will be together, as a family, forever.
Richard Carlson, PH.D. said: "Obstacles and problems are a part of life. True happiness comes not when we get rid of all of our problems, but when we change our relationship to them, when we see our problems as a potential source of awakening, opportunities to practice patience, and to learn. Perhaps the most basic principle of spiritual life is that our problems are the best places to practice keeping our hearts open.
"In the Buddhist tradition, difficulties are considered to be so important to a life of growth and peace that a Tibetan prayer actually asks for them. It says, 'Grant that I may be given appropriate difficulties and sufferings on this journey so that my heart may be truly awakened and my practice of liberation and universal compassion may be truly fulfilled.' It is felt that when life is too easy, there are fewer opportunities for genuine growth" (Don't Sweat the Small Stuff, 209).
I certainly wouldn't pray for problems, but as they come, I have found it is better to ask "what can I learn" rather than to ask "why". Either way, it is hard, but one path leads to greater understanding and the other path leads to self-pity. I would rather learn from my trials, than have the experience simply wasted on me. I will not have Katie's pain during this trial be for nothing. I am trying to learn and grow all I can from the things we are going through. It isn't easy. It is hard. I have my down days, but more than anything, I want to be a good wife and a good mother, and that keeps me going. So, it is a circle, they help me and I help them. Family...what a beautiful plan! I am so grateful for those who have come before me - and for those who will come after me. What a blessing it is to know we will be together, as a family, forever.
Thursday, May 3, 2012
Day 176
We are going to the clinic this morning. I am not sure what to expect. Katie is not getting anymore chemo at the clinic during this phase and she has finished the shots and pills at home! YEAH! Now it is just a matter of getting her body back to where it needs to be, after so much chemo in a short period of time. I am hoping she won't need platelets, but we'll see.
The one thing I do know to expect this morning is accessing Katie's port. To do so, a nurse pokes a thick 22 gauge needle that is 3/4 of an inch long into Katie's chest. That needle hurts going in and hurts coming out. Naturally, Katie is afraid and upset each time it happens - me too. Scott said he will meet us there this morning. I am glad for his help and support.
"Blessed are they which do hunger and thirst after righteousness: for they shall be filled" (Matthew 5:6).
The one thing I do know to expect this morning is accessing Katie's port. To do so, a nurse pokes a thick 22 gauge needle that is 3/4 of an inch long into Katie's chest. That needle hurts going in and hurts coming out. Naturally, Katie is afraid and upset each time it happens - me too. Scott said he will meet us there this morning. I am glad for his help and support.
"Blessed are they which do hunger and thirst after righteousness: for they shall be filled" (Matthew 5:6).
Wednesday, May 2, 2012
Day 175
Katie was very "pink" yesterday. Anymore, we are not used to seeing her with so much color. It was great! She has a lot of bruises on her and she is still a bit moody because her platelets are low, but this girl is a go getter. She is determined to go and do as much as she can. We are glad for that!
At the clinic on Monday, Katie and I were in the curtain area while Katie received her blood transfusion. Next to us, a little boy peeked his head around the curtain, he wasn't much older than Katie. When he turned away, I noticed he had a big scar along the back of his head, which means he had a brain tumor. He was getting a chemo treatment. Later, when I went to get a pillow for Katie, I saw this boy's dad - he is blind. My heart sank. And I think I have it hard? Every time I go to the clinic, my heart breaks, because there is always another family there going through something harder than we are. Yet they are coping and functioning and loving their child. These parents and children inspire me. Katie inspires me. Happiness can and does exist among the turmoil and chaos.
This quote came from my niece Tebbanie, "In the midst of movement and chaos, keep stillness inside of you" (Deepak Chopra).
At the clinic on Monday, Katie and I were in the curtain area while Katie received her blood transfusion. Next to us, a little boy peeked his head around the curtain, he wasn't much older than Katie. When he turned away, I noticed he had a big scar along the back of his head, which means he had a brain tumor. He was getting a chemo treatment. Later, when I went to get a pillow for Katie, I saw this boy's dad - he is blind. My heart sank. And I think I have it hard? Every time I go to the clinic, my heart breaks, because there is always another family there going through something harder than we are. Yet they are coping and functioning and loving their child. These parents and children inspire me. Katie inspires me. Happiness can and does exist among the turmoil and chaos.
This quote came from my niece Tebbanie, "In the midst of movement and chaos, keep stillness inside of you" (Deepak Chopra).
Tuesday, May 1, 2012
Day 174
Katie's blood count had dropped way below normal, so she did get a blood transfusion yesterday. She looks a lot better! Although, I don't know that she is feeling much better - she was still having a hard time last night. All her other levels have continued to go down and the doctor told me to expect them to continue going down. She may need a platelet transfusion. It was a long day yesterday. I will be taking Katie back to the clinic on Thursday. I am not looking forward to that, but I am glad Katie can get the help she needs to live and feel better.
I thought this was a good reminder -- "Be Happy Where You Are: Sadly, many of us continually postpone our happiness - indefinitely. It's not that we consciously set out to do so, but that we keep convincing ourselves, "Someday I'll be happy." We tell ourselves we'll be happy when our bills are paid, when we get out of school, get our first job, a promotion. We convince ourselves that life will be better after we get married, have a baby, then another. Then we are frustrated that the kids aren't old enough - we'll be more content when they are. After that, we're frustrated that we have teenagers to deal with. We will certainly be happy when they are out of that stage. We tell ourselves that our life will be complete when our spouse gets his or her act together, when we get a nicer car, are able to go on a nice vacation, when we retire. And on and on and on!
"Meanwhile, life keeps moving forward. The truth is, there's no better time to be happy than right now. If not now, when? Your life will always be filled with challenges. It's best to admit this to yourself and decide to be happy anyway. One of my favorite quotes comes from Alfred D' Souza. He said, 'For a long time it had seemed to me that life was about to begin - real life. But there was always some obstacle in the way, something to be got through first, some unfinished business, time still to be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life.' This perspective has helped me to see that there is no way to happiness. Happiness is the way." (Don't Sweat the Small Stuff, Richard Carlson, PH.D., 169)
I thought this was a good reminder -- "Be Happy Where You Are: Sadly, many of us continually postpone our happiness - indefinitely. It's not that we consciously set out to do so, but that we keep convincing ourselves, "Someday I'll be happy." We tell ourselves we'll be happy when our bills are paid, when we get out of school, get our first job, a promotion. We convince ourselves that life will be better after we get married, have a baby, then another. Then we are frustrated that the kids aren't old enough - we'll be more content when they are. After that, we're frustrated that we have teenagers to deal with. We will certainly be happy when they are out of that stage. We tell ourselves that our life will be complete when our spouse gets his or her act together, when we get a nicer car, are able to go on a nice vacation, when we retire. And on and on and on!
"Meanwhile, life keeps moving forward. The truth is, there's no better time to be happy than right now. If not now, when? Your life will always be filled with challenges. It's best to admit this to yourself and decide to be happy anyway. One of my favorite quotes comes from Alfred D' Souza. He said, 'For a long time it had seemed to me that life was about to begin - real life. But there was always some obstacle in the way, something to be got through first, some unfinished business, time still to be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life.' This perspective has helped me to see that there is no way to happiness. Happiness is the way." (Don't Sweat the Small Stuff, Richard Carlson, PH.D., 169)
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