The hair Katie has growing in 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 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 particularly 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.
However, if you are on the other end of this and you are feeling isolated, alone, misunderstood, misrepresented, or misjudged - 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.
Wednesday, May 30, 2012
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, 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).
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