Day 296

     We are going to my In-laws "cabin" this weekend, to help them paint and hopefully for some R and R.  I wanted to do something nice for my family, so I decided to make cookies to take with us this weekend.  As the first batch of cookies were baking, a little nagging thought kept trying to come to the front of my mind... About a month ago my husband "helped" me by cleaning out my spice cabinet.  Today as I was mixing up the dough, I wondered where the salt was, as couldn't find it in the cabinet, I ended up opening a new one.  As I watched my cookies baking, I began to wonder why they didn't look quite right... All of the sudden it hit me like a lightening bolt...The salt!  My husband had poured the salt in one of the canisters on the counter... I only put sugar in the canisters... So today, I made Salt Cookies!  I used salt in place of the sugar!  (SIGH.....) I threw away the baked cookies and the cookie dough and began again.  When Scott came home, I asked him to please not put salt in the canisters anymore.   He agreed, and then he said, "You know, if this is the worst thing that happens to us today, then it is going to be a good day!"  Scott and Katie are a lot alike!  They look for the good and positive.  I love that!  I hope Katie always retains her happy positive attitude through out her life.
     Katie's tape came off her incision today - with a little help from Scott.  It looks good.  Scott says that when she is an adult it will be a small scar.  The reminder will always be there though.  I wonder what other kind of "scars" Katie will have from all of this.  I know this will have some effect her in some ways.  I hope it helps her to have more compassion and concern for others.  I hope it "softens' her rather than "hardens" her.  She still has so much to go through.  It has been a long hard journey, and there is still a lot of road ahead!  It has finally all caught up to me I guess.  My body seems to be revolting.  My body is out of balance.  I am not sleeping at night...at all.  Scott was the first to notice.  He told me I wasn't sleeping very well, so I started to pay attention at night.  I noticed I was awake and aware a lot of the night.  After we talked about it however, it was like the power of suggestion got to me... I stopped sleeping all together.  I haven't slept at night or even been able to nap during the day.  I have tried multiple sleeping pills (natural to prescription) and I have had two blessings.  Last night I tried a new "pill" and slept at least part of the night.  Thankfully!!!  I hadn't had any (REM) sleep in a week or more and I was barely able to function yesterday - physically and mentally.  I am still dragging today, but I feel better with having had a little sleep. - But no big surprise that I mistook salt for sugar!  (I might have done that anyway, even if I wasn't tired!)
     Katie is doing well, we go in for treatments this next Wednesday.  We love to see her hair growing.  It makes us all smile!  Scott is going back on "shift" (24 hour shifts) at the fire station.  He has been working "days" since Katie got sick and we are grateful to the Department for allowing Scott to do so!  It has been such a help and blessing to have Scott home every night.  I worry a little about him going back on shift, I certainly will miss having him home every night!  I am grateful to Scott for being willing to work a desk job and sacrificing for Katie and our family.  He is a good dad and husband and I am grateful!  I have felt the "worry" lately of wanting to be a good parent.  I recognize the importance and responsibility of teaching my children, yet I do not want to be "weighed down" by the worry, and let that rob me of today's strength and joy.  Thank goodness for the grace of God!  Oh, how I rely upon that power, and I feel I need to draw upon that power more and more each day.   
   "Should there be anyone who feels he is too weak to do better because of that greatest of fears, the fear of failure, there is no more comforting assurance to be had than the words of the Lord: 'My grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them' (Ether 12:27)."  (Thomas S. Monson, "Our Sacred Priesthood Trust," Ensign, May 2006, 57).

Day 291

       Conner and I are sick with the flu.  So far Katie hasn't caught it and hopefully she won't!....Never mind... I just heard her coughing, so I think she has it.  Bummer!  Katie still has bruising on her chest (and sterrie strips and dissoluble stitches) from getting her port removed.  The sterrie strips should start to come off this week.  Overall Katie has been doing well.  Although she has had a rash on her back and neck for the past month or more - from her medication.  She also gets a rash around her mouth that comes and goes.  She is still doing a super job at taking her medication daily.  We are so glad, that has been such a blessing and relief!  However, it has been challenging to not let her eat for an hour before or for two hours after her medicine (every evening).  We are getting it done though.
     Katie goes in for her next treatment on September 5th.  We go to the clinic monthly now instead of weekly.  It has been really nice not having to go to the clinic as often.   Katie's hair is growing in - it isn't long enough yet for a bow or barrette - but it is growing.  Last week Scott said, "We need to cut the hair over her ears, it is starting to stick out."  I laughed and reminded him that she is a girl and that her hair needs to grow over her ears or she would always have a boy haircut!  So, no, we didn't cut her hair.  =)  When Katie was completely bald, I guess people assumed she had cancer, and they just wouldn't say anything.  However, now that she has a little hair, we keep getting strange comments from people - "Does her hair just grow slow?"  "Why is her hair so short?"  "Is her hair just not growing in?"  - she has also been called a boy a time or two.  We get a lot of strange looks - stares.  So, it will be nice when her hair grows in a little more.
     Katie will be starting "joy school" soon with some children in our ward and neighborhood.  She is very excited.  After the mom's and kids met to plan the school year, Katie has been putting on her backpack and playing school.  I am excited for her to live a "normal life" and I hope her treatments won't hold her back from being able to participate.  We are happy she is doing so well!  It is so fun to watch her and Conner play together.  Life has gotten better/easier since we entered the maintenance phase.  Things are good
    Elder Joseph B. Wirthlin has said: "Each of us will have our own Fridays--those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays.

"But I testify to you in the name of the One who conquered death--Sunday will come. In the darkness of our sorrow, Sunday will come.

"No matter our desperation, no matter our grief, Sunday will come. In this life or in the next, Sunday will come.

"I testify to you that the Resurrection is not a fable. We have the personal testimonies of those who saw Him. Thousands in the Old and New Worlds witnessed the risen Savior. They felt the wounds in His hands, feet, and side. They shed tears of unrestrained joy as they embraced Him."  (Joseph B. Wirthlin, "Sunday Will Come," Ensign, Nov. 2006, 30).

Day 284

     Katie had her port removed on Friday, and all went well.  The doctor made only one incision (verses the two when they put it in).  She has stitches on the left side of her chest.  Thankfully, she did not need platelets this time, so we did not have to worry about her having an allergic reaction.  Now that the surgery is done, it is a relief, and we are glad to have the port out. This is a milestone for us.  We plan to celebrate by going to California during Fall Break.  Katie will now be able to swim in public pools and play in the ocean.  Hopefully all will continue to go well and she will continue to respond to treatments.  We have been really blessed, and we feel so grateful for all the tender mercies we have experienced.    
     Last night, Scott got a big smile on his face and he said, "Katie is so sweet."  Almost on a daily basis, one of us will make this comment about Katie, and then we recount the events of the day that brought on this comment of sweetness.  Katie finds sheer joy in living.  She has such a naturally sunny disposition.  She lightens and brightens the mood in our family and home.  I am amazed at how one little girl can bring the rest of us "up" the way she does, but she does.  We are learning from her!  
    This week we have been reminded how fragile and precious life is.  Some friends of ours had a son pass away a few days ago.  He went running with friends on the high school track and had a heart attack.  This was completely unexpected, as he was healthy, and there we no known problems.  He was 36 years old.  He had a wife, a 3 year old, and a new baby.  His parents, who are our friends, have offered their continuing support to us during this difficult time with Katie - and now it is they who have lost a child (not us).  When I spoke with our friend, she said, "you know, it doesn't matter if you loose them when they are 5 or 36, it is so painful."   I have gotten a glimpse of that type of pain, and I hope not to know if fully.  Opposition is meant to be part of our earthly experience so we can learn and grow.  As a result, life can be full of unexpected twists and turns.  This has been is a humbling reminder of how fragile life is - that God is in control - and that all things are in His hands.  We should not take anyone or anything for granted. 
     Dallin H. Oaks said, “As children of God, knowing of His great love and His ultimate knowledge of what is best for our eternal welfare, we trust in Him. The first principle of the gospel is faith in the Lord Jesus Christ, and faith means trust.”  (“Healing the Sick,” Ensign, May 2010, 50).
   Dieter F. Uchtdorf said, "There are those among you who...have already suffered a full measure of grief and sorrow. My heart is filled with compassion and love for you. How dear you are to the Church. How beloved you are of your Heavenly Father. Though it may seem that you are alone, angels attend you. Though you may feel that no one can understand the depth of your despair, our Savior, Jesus Christ, understands. He suffered more than we can possibly imagine, and He did it for us; He did it for you. You are not alone."  ("Your Happily Ever After," Ensign, May 2010, 126).

Day 277

     Katie went to the clinic on Wednesday for her monthly dose of chemo and antibiotics.  Putting the IV in her hand verses the port is not going to be any easier.  Right now, it is actually harder - I hope it won't always be harder.  Katie is terrified!  She starts crying as soon as she learns we are going to the doctor (which is nothing new).  She will eventually stop crying, but she stays upset and clingy.  When the nurse comes into the room Katie starts crying again.  Scott and I hold Katie's body, arms and legs, while one nurse puts the IV in her hand and another nurse holds her arm down.  It takes 4 of us to get the job done.  Afterward, the nurses always say, "Wow, she is really strong!"  Then they look at us and say, "Are you guys okay?"  (We never are).  It is hard on all of us.  Throughout the process Katie always cries, "No mommy, no mommy, no...!"  It is heartbreaking.  Even Scott gets emotional.  I can not even begin to describe what it feels like to go through this.  It is hard, it is difficult, it is painful, it is not normal... That is what I thought this last time.  "This is not normal."  Our daughter is going through things that are not normal for a child to have to go through.  She is not having "a normal childhood."  A child should not have to experience the kind of terror and pain and sickness Katie is having to go through. 
     Katie will be getting her port taken out this Friday.  Scott is anxious to get it taken out - and I am just anxious about getting it out!  Hopefully all will go well.  Katie has done better this time around with her treatments than she did last month.  Her tummy hurt on Wednesday and Thursday, but she did not get as sick as she did last time.  Today is her last day of steroids for this month, and that too has not seemed as bad this time.  We are glad she was able to tolerate it better this month.  Par for the course, she is weaker than usual and hungry because of the steroids and a little moody, but it hasn't been overly extreme.  I don't know why it was so much harder last month than this month, but hopefully it will stay like this every month (which isn't great, but better than bad).
     I always seem to make a connection with a mother in the waiting room prior to going in for our appointment.  They are women who I would never have dreamed I would connect with - they are so totally different from me, different lifestyles - yet in those briefs moments in the clinic, I have felt such a deep connection to them.  They know and understand things about me and my life that no one else can - and vice-a-versa.  This last time, there was a mother with her son, who was about 8 years old.  Her son was fussing and she was getting frustrated with him.  I "recognized" her frustration.  She got a little short with him and then she looked over at me (embarrassed by her reaction).  I did not feel critical of her, I felt compassion for her.  When she looked over at me again, I said, "It is hard isn't it?"  She said, "It is hard!...very hard!!"  Our eyes teared up and we both connected.  She looked at me again later with a look of deep gratitude.  Her mood changed with her son after that, she was now comforting him rather than being harsh with him.  It was like the pressure had been relieved a little, just by being able to acknowledge how hard it is - with someone who understands.  Nothing else was said between us, and I will probably never see her again, but I will always remember her.  This is hard!
     Katie can always seem to find the joy and good in everything.  A couple of days ago, I found a scorpion in my shower.  I wanted Katie to see it and know what it is, so she would not touch one if she ever saw one.  As I am trying to explain to her that it is a bad bug, Katie sees the scorpion move and says to me, "Oh! It is a sweet bug!! (giggle, giggle).   Even after I explained to her what it is and what it does, she was still looking at it (and talking to it) affectionately.  And again last night, we were walking outside and there were a group of flies flying around us, the rest of us were shewing them, saying things like, "Stupid flies," "Go away flies."   Katie started giggling and said, "They are sweet flies, they tickle me!"  She is the sweet one!  She maintains her sweetness and joy amidst such adversity and pain.  At the clinic, after her IV is in, Katie always seeks to comfort us, as we are trying to comfort her.  She is such a good girl.  I love her so much!  I hope she will always be able to maintain her loving, sweet, compassionate, and joyful nature!

     President Monson has said: “None of us makes it through this life without problems and challenges—and sometimes tragedies and misfortunes. After all, in large part we are here to learn and grow from such events in our lives. We know that there are times when we will suffer, when we will grieve, and when we will be saddened. However, we are told, ‘Adam fell that men might be; and men are, that they might have joy.’

     "How might we have joy in our lives, despite all that we may face? Again from the scriptures: ‘Wherefore, be of good cheer, and do not fear, for I the Lord am with you, and will stand by you.’ ” ...“My beloved brothers and sisters, fear not. Be of good cheer. The future is as bright as your faith.”  (“Be of Good Cheer,” Ensign, May 2009, 89).

Day 270

     Katie caught a cough and cold this past week.  We have been watching her closely - if she gets a fever over 100 we have to take her to the hospital.  We are glad she hasn't spiked a fever.  We will be taking Katie to the clinic on Wednesday for chemo (which means she will also start her 5 days of steroids).  It is hard to believe it has been a month already! 
     Katie is scheduled to get her port removed on August 17th.  I have mixed emotions about that... but I know it is best if we get it removed.  I just worry about her going through the surgery.  I asked about platelets (which she is severely allergic to) and I was told she will only get platelets if absolutely necessary.  When Katie got her port put in she went into severe encephalitic shock and the doctor had to do chest compressions on her during the surgery.  Hence my worry about taking it out.  Although I have been told the removal of the port is much easier than putting it in.  So, I will try to control my worry.
     Other than her cold, Katie seems to be doing well.  Her hair is growing - it has lightened up in color - and she is very excited about getting hair.  Conner keeps getting hurt somehow.  Is it just the age?  Or just part of being a boy?   Whatever it is, it is stressful!  We got great news this week for Nathan.  We have been working (fighting) with the school district for a year and a half, trying to get appropriate services for Nathan because of his Dyslexia.  We met again on Friday and they finally agreed to pay for a one-on-one Dyslexia tutor for him during the school day!  It has been a long hard battle, but this will completely change his life and we couldn't be more pleased!  - Blessings are flowing and we are grateful!
     Susan W. Tanner has said: "I delight in the Lord's mercies and miracles (see "Bless Our Fast, We Pray," Hymns, no. 138). I know that His tender mercies and His miracles, large and small, are real. They come in His way and on His timetable. Sometimes it is not until we have reached our extremity. Jesus's disciples on the Sea of Galilee had to toil in rowing against a contrary wind all through the night before Jesus finally came to their aid. He did not come until the "fourth watch," meaning near dawn. Yet He did come. (See Mark 6:45-51.) My testimony is that miracles do come, though sometimes not until the fourth watch."  ("My Soul Delighteth in the Things of the Lord," Ensign, May 2008, 83).