Day 234

     Katie slept through the night last night, which was wonderful!  The night before, Katie tossed, turned, and moaned all night.  So, I am glad she was able to get some sound and peaceful sleep last night.  Yesterday was a really good day!  Katie was feeling better and the stars seemed to line up (so to speak) and I think Katie is potty trained.  We have tried before and it just hasn't worked, but yesterday when she woke up I asked her if she wanted to use the potty chair and she did - and she continued to do so all day.  I thought since she was older, it would be harder to train her (and so far every attempt has failed) but she told me she is a big girl now and doesn't need her diapers any more.  Could it really be this easy!?  I hope so! 
     To celebrate (and as an incentive) we took Katie out (just doing that is rare and fun) - we went to Jamba Juice and then to Walmart to buy a prize.  While at Walmart, we met a new friend.  As we were walking down the aisle, a woman said, "Is that Katie?"  We had never met before, but she recognized Katie from the blog.  (I didn't think to ask her how she knew about the blog).  As we talked I found out her dad is suffering from Alzhemiers, and as I lay in bed last night, I couldn't help but think how many people are suffering in so many different ways.  And as I have said before, hard is hard - but there are varying degress of hard.  As I was thinking on this, I was again reminded there are people dealing with things far more difficult than us - like having your child kidnapped or having a child die, etc...  There is so much pain and heartache some people have to endure, but there is also hope and joy available too. 
     As I was pondering this, the quote below about the pebble came to my mind, so I looked it up this morning.  It is a good reminder about keeping things in perspective.  (This is not just a doctrinal discourse; rather a personal witness by Elder Scott, a man who at one time lost a baby girl and nearly his wife, and then six weeks later they lost a son) (As stated in "To help a Loved One in Need" May 1988 - which is a good talk about helping a wayward family member).
     "Your joy in life depends upon your trust in Heavenly Father and His holy Son, your conviction that their plan of happiness truly can bring you joy. Pondering their doctrine will let you enjoy the beauties of this earth and enrich your relationships with others. It will lead you to the comforting, strengthening experiences that flow from prayer to Father in Heaven and the answers He gives in return.

     "A pebble held close to the eye appears to be a gigantic obstacle. Cast on the ground, it is seen in perspective. Likewise, problems or trials in our lives need to be viewed in the perspective of scriptural doctrine. Otherwise they can easily overtake our vision, absorb our energy, and deprive us of the joy and beauty the Lord intends us to receive here on earth. Some people are like rocks thrown into a sea of problems. They are drowned by them. Be a cork. When submerged in a problem, fight to be free to bob up to serve again with happiness.

     "You are here on earth for a divine purpose. It is not to be endlessly entertained or to be constantly in full pursuit of pleasure. You are here to be tried, to prove yourself so that you can receive the additional blessings God has for you.  The tempering effect of patience is required.  Some blessings will be delivered here in this life; others will come beyond the veil. The Lord is intent on your personal growth and development. That progress is accelerated when you willingly allow Him to lead you through every growth experience you encounter, whether initially it be to your individual liking or not. When you trust in the Lord, when you are willing to let your heart and your mind be centered in His will, when you ask to be led by the Spirit to do His will, you are assured of the greatest happiness along the way and the most fulfilling attainment from this mortal experience. If you question everything you are asked to do, or dig in your heels at every unpleasant challenge, you make it harder for the Lord to bless you.

     "Your agency, the right to make choices, is not given so that you can get what you want. This divine gift is provided so that you will choose what your Father in Heaven wants for you. That way He can lead you to become all that He intends you to be.  That path leads to glorious joy and happiness. (Elder Richard G. Scott, "Finding Joy in Life," May 1966) 

Day 233

    After rereading yesterday's post, the completion date, 1/12/14, stood out to me - I was struck by the reminder that at least we have a completion date.  Katie is responding to treatment.  We have a good prognosis.  What a blessing that is!  My heart breaks everytime I hear about another child "relapsing".  How fortunate I feel today (how glad I feel) that our sweet Katie is getting the treatment she needs, she is responding, and she is expected to live - and hopefully have minimal long term side effects.  So we will do what it takes in the mean time and we will count our blessings.
   What has God given us?  "Our Father in Heaven has given us, His children, much more than any mortal mind can comprehend.  Under His direction the Great Jehovah created this wondrous world we live in.  God the Father watches over us, fills our hearts with breathtaking joy, brightens our darkest hours with blessed peace, distills upon our minds precious truths, shepherds us through times of distress, rejoices when we rejoice, and answers our righteous petitions."  (Dieter F. Uchtdorf, "The Love of God," Ensign, Nov. 2009, 22).

Day 232

     Last night was not Katie's best night, and she still wasn't quite herself yesterday, but she was better than the day before.  Today started with a tummy ache, but hopefully as the day goes on she will feel better.  We are always glad for the feel good days. 
    Our next appointment at the clinic is on July 11th, to start Katie's last phase called "Maintenence".  Katie starts off the Maintenence phase with a spinal tap (where they take spinal fluid out and put chemo in) and she will get two doses of chemo in her port.  During Maintenence Katie will be on a daily chemo pill called 6MP.  She will also take 5 Mexotrexate chemo pills every Friday (in addition to the 6MP) - both medications are to be taken on an empty stomach with no citrus or dairy.  So, every morning when Katie wakes up, she will take 1 to 6 pills and have to wait an hour before she can eat or drink.  We aren't quite sure how we are going to manage that!  Katie will also go to the clinic once a month and get two doses of chemo.  During this phase, they will be "poking" her in new places, as they are wanting to try IV's in her hands and/or arms so they can remove her port as soon as possible.  (Removing the port will require surgery).  Katie will also be taking steroids twice a day for 5 days each month (so monthly we will be dealing with the effects of the steroids).  Katie will also be getting a spinal tap (with chemo) every 3 months.  She will take an anti-nauesa pill on an as needed basis.  --This will be our new-new norm for about the next year and a half.
     The good thing about Maintenence is that after the first month or two, they say her levels will stabalize more, with not so many ups and downs (at least not so high and low).  They say her risk for life threatening complications lessens (especiallly after Katie's port is removed).  They say that "generally" the chilld's hair grows back and most likely will not fall out again (although it could).  They also told us one of the most difficult parts of being in Maintenence is that when Katie's hair grows back and she starts feeling better, that our friends and family will all think (and say) that everything seems fine, Katie seems to be doing great - and expect us to feel and act the same - but the reality is, we will still have a daughter with Leukemia and there will still be a lot happening at home that others can't and won't see.... 
     At this moment it all still seems overwhelming to me.  Katie is going to start going to church again - and start preschool - our life can resume some normalicy - but it still sounds hard and difficult and a lot for Katie to continue to go through.  I hope as we get further into Maintenence things will seem easier or better (like they keep saying it will) (although this last time, they did tone it down, saying they didn't want to build up Maintenence too much because they didn't want to give us too high of an expecation - because there can and will be some complications and difficulties).  So.... that basically sums it up.... we are headed for Maintenence (which will continue until January 12, 2014).  We will take it as it comes - one day at a time. 
     "The Lord puts challenges in your path to mold your character.  For your own personal growth He will often let you struggle with a matter for a while, even when you are pleading for help.  But as you follow true principles, He will finally see you through.  He intends that when you have reached your extremity, you will turn to Him for comfort, peace, and assistance.  He will send these through the quiet prompting of the Spirit.  He will give reassurance and guidance that are essential to correct decisions in your life.
     "You are learning powerful, eternal lessons.  Be sure you understand them.  The Lord does not abandon your urgent pleas, nor is He ever, for even a moment, unmindful of your anguish and heartache.  He hears every supplication.  He invariably answers according to spiritual law.  Understanding that law will help you appreciate how the Lord answers your prayer.  His slicence and seeming absence at times are a powerful means to expanding your vision and understanding as you continue in faith to do your best."  (Richard G. Scott, "Making the Right Choices" (CES fireside for young adults, Jan. 13, 2002),
    

Day 231

     Katie did not feel good all day yesterday.  It is hard to see her go from feeling so strong to being sick again (and again, and again, and again...).  Hopefully she will feel better today.  No matter what, she tries to put on a happy face and does her best to play and do.  We are glad she has done as well as she has.  She hasn't had to go through any of the really serious side effects or complications that she could have (due the to Leukemia and treatments).  We are thankful for all of your prayers that have brought us this far.  Thank you!  Please keep praying for Katie.
     "Recognize that there is a power greater than ours, that no matter how good a man is, he is not good enough, that no matter how wise he is, he is not wise enough, that no matter how strong he is, he is not strong enough for all of the things which he will face in life, and that there is a source of power to which he can go with the assurance that he will be listened to and that there will be a response."  (Gordon B. Hinckley, "The Message: Gifts to Bring Home from the Mission Field," New Era, Mar. 2007, 4).

Day 230

     Katie's weight is down a little, her liver functions are up a little too high, and her blood count was a little low, but overall her counts were good.  So, Katie got two doses of chemo yesterday.  She had some tummy troubles yesterday afternoon and evening.  Scott found her at 4 o'clock this morning laying on the floor in the hallway (needing her diaper changed).  
     This phase is officially over.  In two weeks we will begin "Maintenance" - our last phase - which will last for about a year and a half.  It will be a new-new norm (but still not "normal").  There won't be so many changes and so many ups and downs.  We are glad to be moving forward.
     "Our motives and thoughts ultimately influence our actions. Jesus repeatedly emphasized the power of good thoughts and proper motives: 'Look unto me in every thought; doubt not, fear not' (D&C 6:36).

"In Proverbs we read, 'For as he thinketh in his heart, so is he' (Proverbs 23:7)."  (Dieter F. Uchtdorf, "Your Right to Choose the Right," New Era, Aug. 2005, 6)

Day 229

     Days 224 - 228 were great days for Katie.  We were in New Mexico for my  mother's 86th birthday, which we celebrated by having a family party every night, four nights in a row.  We had a great time!  Katie and Conner loved seeing all of their aunts, uncles, and cousins.  Katie was suprisingly strong all week, she actually had a better week than usual - which was a great blessing.  I am glad we got to get a way.  It was good to go "home". 
     While I was in New Mexico, it struck me how blessed we are to live so close to a Children's Hospital.  In twenty minutes, I can be at the hospital with Katie, and in twenty minutes we can be home.  But what if we didn't live here - or anywhere near a Children's hospital?..  Scott would not have been able to come to appointments with me...  I would have had to stay in a Ronald McDonald House...  And what would I have done with Conner?..  How much more difficult everything would have been, if we didn't live where we live!  I definately feel a new appreciation for such a thing as a Ronald McDonald House - but I am glad it wasn't necessary for me to stay in one.  I am so grateful we live near a good hospital and have such good doctors.   It is a tender mercy to live so close.
     Speaking of which... Katie goes back in for chemo today.  This past 10 days went fast - it doesn't seem like it should be time for her to go back in.  Although, each day is one day closer to the end of her treatments, so I will stay focused on that. 
     "Mercies and blessings come in different forms--sometimes as hard things. Yet the Lord said, 'Thou shalt thank the Lord thy God in all things' (D&C 59:7). All things means just that: good things, difficult things--not just some things. He has commanded us to be grateful because He knows being grateful will make us happy. This is another evidence of His love." 
     "Gratitude is a Spirit‑filled principle. It opens our minds to a universe permeated with the richness of a living God. Through it, we become spiritually aware of the wonder of the smallest things, which gladden our hearts with their messages of God's love. This grateful awareness heightens our sensitivity to divine direction. When we communicate gratitude, we can be filled with the Spirit and connected to those around us and the Lord. Gratitude inspires happiness and carries divine influence." (Bonnie D. Parkin, "Gratitude: A Path to Happiness," Ensign, May 2007, 35).

Day 223

     Katie is doing "so-so".  She is asking for help up and down the stairs again and she is looking a little pale to me.  She still gets tummy aches daily.  Overall though, she is strong and doing well.  I will not be posting on the blog for the rest of the week.  Katie, Conner and I are going to New Mexico for my mother's 86th birthday.  We are excited and glad to go see "G.G."

     I found this story last night and it struck a cord with me.  I want to finish the race and return with honor. 

     "In 1968 a marathon runner by the name of John Stephen Akhwari represented Tanzania in an international competition. 'A little over an hour after [the winner] had crossed the finish line, John Stephen Akhwari . . . approached the stadium, the last man to complete the journey. [Though suffering from fatigue, leg cramps, dehydration, and disorientation,] a voice called from within to go on, and so he went on. Afterwards, it was written, "Today we have seen a young African runner who symbolizes the finest in human spirit, a performance that gives meaning to the word courage." For some, the only reward is a personal one. [There are no medals, only] the knowledge that they finished what they set out to do' (The Last African Runner, Olympiad Series, written, directed, and produced by Bud Greenspan, Cappy Productions, 1976, videocassette). When asked why he would complete a race he could never win, Akhwari replied, 'My country did not send me 5,000 miles to start the race; my country sent me to finish the race.' "He knew who he was—an athlete representing the country of Tanzania. He knew his purpose—to finish the race. He knew that he had to endure to the finish, so that he could honorably return home to Tanzania. Our mission in life is much the same. We were not sent by Father in Heaven just to be born. We were sent to endure and return to Him with honor." (Robert D. Hales, "Behold, We Count Them Happy Which Endure," Ensign, May 1998, 76).