Katie was diagnosed with Acute Lymphocytic Leukemia on November 8, 2011.

Thursday, May 31, 2012

Day 204

     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. 

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.

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.

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).

   

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.
    

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).

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).