Day 698

     Katie went to the clinic this week for her monthly dose of chemo.  Dr. Dana was not working so we saw a PA (Britt) that we see regularly.  Britt is over the "survivors clinic," and as we are getting closer to the end of Katie's treatments, I find that my thoughts are turning to post treatment.  I had been told by a parent that the greatest likelihood for the cancer to come back was within the first 2-3 years.  Britt however said, it is the first 5 years we need to worry about the most.  She said the cancer could come back at any time - even 30 years later - but the greatest likelihood is within the first 5.  She said they don't use the word "cured" until after 5 years post treatment.  She also said that the sooner a patient relapses the worse it is - because the sooner it happens, the more aggressive the cancer is.  She said there are 2 patients currently that had the same prognosis and outlook as Katie, but they have relapsed.  So, there is just no way of knowing if the cancer will come back or not.  And as we already know, the treatments the 2nd time around are much worse - they are more aggressive and it requires a lot more hospital time.  (As we were leaving the clinic on Thursday, we just happened to see our little friend Ori, (who relapsed) and his mom told us he just had "a rough hospital stay" - he was supposed to be there 3 days and ended up being in the hospital 12 days.  After we saw them, I told Scott, "Pray that Katie doesn't relapse."  I can't even imagine how hard that would be!
     I know people are probably wondering why I am even "going there."  But I want to know...I need to know.  My husband and I have some difficult decisions we need to make in the upcoming year, and we need to look at everything from every angle. -  Even after Katie has completed her treatments, she will still need to go to the clinic once a month for blood work, for the first year - and then to the clinic every other month the second year - and so on...  So, we still have a long journey of doctor visits ahead of us.  Plus, we have the Endocrinology issues with Katie, and any other health issues that may arise due to the chemo.  -- I know it is important to live "one day at a time," but sometimes we are forced to look ahead, when life altering decisions need to be made.
     Katie's face and tummy are "round" due to all the steroids she is having to take.  A little boy at preschool this week asked Katie if she "had a baby in her tummy,"  and that made her feel bad.   Katie will be on her high dose steroids this week, so that will be "fun" as usual...  Katie's hair seems to be hanging in there.  It has thinned out a lot, but I strategically cut the top of her hair last week, and that seems to have helped overall.   -- As an update: Scott's dad went in for surgery yesterday to have one of his kidneys and the cancer removed.  All went well.  We are waiting on tests to see if the cancer spread into the fatty tissue around the kidney or not - we hope not.
     School days seem long without Conner.  I miss him and I worry about him.  I love him!  My heart aches for the troubles he is having.  I know we aren't supposed to ask "why," but instead we should ask "what can I learn from this?"  I know that... but right now I am having a hard time not asking "why?"  I am tired.... literally...  I have never been a good sleeper anyway, but having to wake up at 3 a.m. to feed Katie is wrecking havoc on me.   It takes me forever to fall asleep, and then the alarm goes off to feed Katie, and then I have a hard time getting back to sleep (if I do) and then it is time to get Conner up to get him ready for school.  So, I really am tired... Physically - but also emotionally.
    However, Katie somehow brings sunshine and optimism to everything it seems.  Yesterday she said to me, "You wanted me for your baby didn't you?"  I told her, "I did! And Heavenly Father gave you to me just special."  Then Katie said, "And you yelled because you were so excited about it, didn't you?"  I laughed (what an interesting comment to make) and I told Katie, "Yes Katie, I shouted for joy!"  I shouted for joy... For joy at the opportunity to come to earth... For joy to have these experiences.  Hmmm... I don't really feel like shouting for joy right now, but I needed perspective, so that thought lead me to this talk by Barbara Winder, "Finding Joy in Life" ---

   "How long has it been since you shouted for joy? In the Grand Council in heaven in our premortal existence, all the sons and daughters of God “shouted for joy” (Job 38:7). Our Father in Heaven gave us the opportunity to be born, to assume the responsibilities of mortality, which offered the opportunity of a “fullness of joy” (Ps. 16:11) but which also entailed risks of disobedience, sin, and heartache. Yet, as our Father’s plan unfolded and we became aware of our divine potential for future immortality, we did all shout for joy.

     Now we are here; do we doubt the Lord’s word, “Men are, that they might have joy” (2 Ne. 2:25)?

...Let me reaffirm that the Lord’s eternal values are still true. The ways of the world may have changed, but the commandments of our Heavenly Father, given for our welfare, are still in force, and true joy comes only from doing his will.

     Do we find ourselves wishing our present experiences could soon be over, as we think we might be happier doing something else?...When we think of the Lord’s eternal plan for us, do we really want no difficulty, no struggle, no adversity? For the plan is to “prove [us] herewith, to see if [we] will do all things whatsoever the Lord [our] God shall command [us]” (Abr. 3:25).

     The Book of Mormon tells a beautiful example of a people who had been through much tribulation and yet had a remarkable experience of feeling eternal joy while in mortality. On the resurrected Savior’s first day among the Nephites, he taught much of his gospel. As he prepared to leave, he saw a people who displayed great faith and who hungered for his words. He was moved with such compassion toward them that he tarried longer and ministered to their personal needs. The scriptures tell us that “no one can conceive of the joy which filled [their] souls” (3 Ne. 17:16–19). The Savior said unto them:

“Blessed are ye because of your faith. And now behold, my joy is full” (3 Ne. 17:20).

Joy, it seems, is not only happiness, but the resultant feeling of the Holy Ghost manifest within us.  How can we provide a climate in our lives to foster the presence of the Holy Ghost, that our lives may be more joyful? Just as a reservoir stores water to bring relief and replenish the thirsty land, so we can store experiences, knowledge, and desires to replenish and fortify our spiritual needs. Four ways may be helpful in developing reservoirs of righteousness and spiritual self-reliance. We prepare by—

1.  Developing a cheerful disposition wherein the Spirit can dwell.
   
2.  Learning the Savior’s will for us, that we may know our divine potential.
   
3.  Understanding and accepting his atoning sacrifice and repenting of our sins.
   
4.   Keeping his commandments and having a firm determination to serve him.
   

 ...Developing a cheerful disposition can permit an atmosphere wherein one’s spirit can be nurtured and encouraged to blossom and bear fruit.

     Being pessimistic and negative about our experiences will not enhance the quality of our lives. A determination to be of good cheer can help us and those around us to enjoy life more fully.

     Elder Marvin J. Ashton reminds us:

“With God’s help, good cheer permits us to rise above the depressing present or difficult circumstances. … It is sunshine when clouds block the light” (Ensign, May 1986, p. 66). Each woman is responsible for her own happiness. Let us strive to cultivate this spirit of gladness in our homes and let it shine in our faces wherever we go.

      Years ago, when our four-month-old son had an operation, I felt forsaken and alone in a hospital waiting room. Another mother there was particularly comforting to me. She took me down the hall to meet her twelve-year-old daughter, who was suffering from leukemia. I found her to be like her mother, peacefully and cheerfully accepting this fatal illness. The girl was busy knitting dishcloths for her nurses. Her brightness helped me put my own concerns temporarily aside.

A few days later, our little one, now at home, was much better. I received a note from this mother. The affliction had taken my new young friend back to her Heavenly Father, but before she died, she asked her mother to send me a hand-knit dishcloth.

     What a beautiful example they were to me of “good cheer” even in such a difficult circumstance. They had learned to accept those things they could not change and remembered the Savior’s words, “Be of good cheer, and do not fear, for I the Lord am with you, and will stand by you” (D&C 68:6).  I, too, remembered the Savior’s words, “They who have endured the crosses of the world, … shall inherit the kingdom of God, … and their joy shall be full forever” (2 Ne. 9:18).

     ...Learning the Savior’s will for us, will help us know of our divine potential and bring joy to our being....Sisters, take joy in knowing that we have a prophet of God on earth today! Give thanks for the governing, sustaining power of the priesthood! Rejoice in the glories of our womanhood! Both President Spencer W. Kimball and President Ezra Taft Benson have asked that we understand the dignity and worth of our role in the divine process of motherhood and that we, whether married or single, make our homes places of love and learning, of refuge and refinement (see Ensign, May 1978, p. 101).

     Surely we are adding to our spiritual reservoir as we listen to our prophet’s voice, read the holy scriptures, fast and pray, and apply the teachings we learn to our lives through the confirmation we receive from the Holy Spirit, that still, small voice that brings “peace to [our] mind[s]” (D&C 6:23).

Keeping the commandments and having a firm determination to serve the Savior can bring joy indescribable here and eternal happiness hereafter.

    ...Near the end of his life, having experienced years of trial, almost beyond our ability to comprehend, being dragged through the streets, tarred and feathered, having some of his closest associates turn against him, the Prophet Joseph Smith could yet testify and cheer us on as he exclaimed:

    “Now, what do we hear in the gospel which we have received? A voice of gladness! A voice of mercy from heaven; … a voice of gladness for the living and the dead; glad tidings of great joy … Let your hearts rejoice, and be exceedingly glad” (D&C 128:19, 22).

May we take joy in our faith, even our knowledge, that Jesus is the Christ, the Son of the living God, I say in the name of Jesus Christ, amen. (Ensign, Nov. 1987).  --I am glad I read this talk.

Day 693

     Yesterday I commented to Scott, "This felt like the longest week ever!"  To which Scott replied, "Boy, ain't that the truth!"  Then I said, "But can you believe Katie is already due for chemo again this week?"  Scott raised his eyebrows in surprise.  "It is strange how it can feel like the longest week ever - in what feels like the shortest month ever!"
     I took Katie to the clinic last week to have her ANC checked (because when I took her in the prior week, her numbers had dropped so much, they wanted to check her again - they were afraid of her numbers dropping any lower and her ending up in the hospital).  However, it turns out Katie's numbers sky rocketed up.  So, no worries there.  Just up, down, up, down.  Crazy.  Katie goes to the clinic this week (on Thursday) for chemo.  Katie is covered with a bad rash (from head to toe practically) we think it is due to the daily steroids she is on (sweating).  Katie runs around without any clothes - she is so hot and bothered by the rash - we try to keep some clothes on her, but we find her more often than not just in her birthday suit. 
     When Katie and I were at the clinic last week, I told Dr. Dana, all the things the new things the Endocrinologist had told us, and the additional meds and interventions we are trying for Katie, - because, "Katie's little body just can't tolerate the chemo treatments."  Dr. Dana looked at me very empathetically and said, "Do you want to stop her treatments?"  The nurse in the room just about fell over!  I was stunned and I didn't know what to say... so I said, "What are you talking about?  Katie still has 5 months left!"  The nurse piped in and said, "Five months!"  Dr. Dana said, "I know, but you just seem so miserable.  This was supposed to be the easy part.  And nothing has been easy for you guys... If we stop, we do run the risk of the Leukemia coming back, but I feel so bad for you, and Katie seems so miserable, and it has been so hard... Do you want to stop?"  I told her, "No way! I could put up with everything we were going through for 5 more months, rather than risk Katie's cancer comeing back.  - Katie's cancer may come back anyway, but if we were to stop treatment early and her cancer came back we would never forgive ourselves.  We will see this through, and do all we can to try and ensure the cancer is gone. 
      And if you can believe it, even with all that we have tried, Katie is still having Hypoglycemia (low blood sugars).  If you remember, the doctor had me switch from feeding her at 3 am to 4 am.  However, this week, Katie awoke me with a whimper (I am a light sleeper) at 3:15 am.  I went in her room to check on her.  All Katie could do was roll over and reach out her arm to me.  I touched her arm and knew - she was sweaty and clammy - she was having a low blood sugar!  I wonder what would have happened if I hadn't of woken up... My alarm would have gone off at 4 to feed her... But how low would her sugar have gone during that time?... It is always a worry.   I contacted the Endocrinologist and we have added another (very expensive) medication morning and night - we will see if that helps - along with everything else we are doing! 
     Kindergarten has proven to be a challenge - for Conner and me - in a multitude of ways - tears have been shed by both of us - for various reasons.  The back to school germs got us.  Conner got a little sick, and then me, and then Katie.  I am grateful and glad that I am the only who ended up with a fever.  That was a tender mercy.  The last thing we needed was for Katie to get a fever and end up in the hospital!  Katie and I still have stuffy noses and coughs, so we aren't out of the woods yet.  I can only hope she gets better...
     Scott's dad goes in for his surgery to remove his cancer and a kidney this week (on Friday) - finally.  Scott is also taking a Biology class right now, which is time consuming, challenging, and stressful.  So we have a lot going on.  Our plates are full.
     I liked the quote I read this week by Chieko N. Okazaki: "If you are the one who is experiencing the problem, you can pray for an easing of the burden, even if you cannot be delivered from it.  And this step is particularly applicable if you know about a problem someone else is experiencing.  You may not know how to solve someone's problem.  You may not know how to help that person solve her own problem.  There may not be a way for the problem to be solved.  There may not even be a way to talk about the problem and to share your sympathy directly with that person.  But you can pray for her deliverance.  You can remember her in your morning and evening prayers and lift your heart to the Lord during the day, in love and compassion and the desire that she will be delivered."
     One of the parts that stood out to me most was, "There may not be a way for the problem to be solved."  There isn't always a solution, or a way for things to be fixed.  I know this.  I have come face to face with this.  I am grateful for the reminder to pray for the burden to be eased, if it is not possible to be delivered.
     
    

Day 684

     I long for the day when I can write that we had a great week - but that definitely wasn't this week.   We had multiple issues to deal with this week. 
     Katie's blood sugar levels still aren't stabilized.  At one point the Endocrinologist asked me if I could double the amount of food I am feeding Katie at 3 am.  I told her I was having a hard enough time getting her to eat and drink as it was! (1/2 jam sandwich and some Pediasure).  The doctor suggested more protein (even though she had originally told me that what I was feeding her was fine).  So Katie switched to 1/2 a peanut butter sandwich and 1/2 a Pediasure.  However, the peanut butter seemed hard for Katie to swallow at 3am - half asleep.  So for the past several days, she has been eating 1/2 a pastrami sandwich and drinking 1/2 a Pediasure.  I thought that was going to work...and it did for a few days....and then it didn't!  One morning, Katie's blood sugar was fine at 3, she ate her "snack," and then at 6:30 her blood sugar was low.  Crazy - it doesn't make any sense - to anyone!  And plus, she is on daily steroid to boot!  So, now the doctor is having me feed her at 4 am instead of 3 am.  We will see if that will make the difference.  We hope so!
     Conner also started Kindergarten this week.  I have dreaded this since the day he was born!  (Scott will attest to that!)  I love Conner so much and I miss him so much when he is gone.  We have considered home school, but for now we have chosen public school, because having Conner home may be what I want, but it isn't what is best for Conner.  At least not right now.  We will see how it goes.  Conner was very excited to go to the "big school."  The first day he came out with a happy face - the last two days he came out with a sad face.  They are long days, and a lot of new things to learn.  Overall though he seems to enjoy it and is doing well.  Scott took Conner to school on Friday, and Scott stood waiting with the other parents, while all the kids lined up outside the teacher's door.  Conner said something to Scott - which Scott couldn't hear - so Scott moved in closer and asked, "What?..."  Conner said louder, "You don't need to be here dad!"  - Scott laughed and said good-bye... he had been dismissed.  We thought that was funny!  Another funny story of the week, was after the second day of school, Conner excitedly told me, "Hey mom, we say that story about the four witches every day just like we did at Mrs. McClure's" (preschool).  I told him I didn't know what story he was talking about.  Conner got irritated with me and said, "You know, the story about the four witches."  I assured him, I didn't know the story about four witches.  Then he said, "Yes you do!  The story we say every day - where the four witches stand!"  I thought, "Four witches stand... Four witches stand... For which it stands!"  Conner was talking about the Pledge of Allegiance!  (...and to the Republic for which it stands...)  I have giggled about that every day since.  I am glad there could be things to laugh about during such a difficult week.
     Our other issues here at home, came to a climax this week (at least I hope it was the climax).  It was a very emotional, upsetting, even scary, week.  Many tears have been shed by both Scott and I.  We have wondered what else we could have done, should have done, would anything have made a difference... After almost a week of that kind of guilty thinking, I honestly don't believe there was anything else we could do.  We are out numbered.  Too many people working against up - another parent - other siblings - Satan - and others - in order for us to ever "win."  There is no happy ending for anyone in this.  No one won or will win.  So much was lost this week - especially for Nathan - who is now living with his mom.  We will now have to go through the legal proceedings - which are stressful also.  So we are not at the end of our troubles yet.
     This week Katie saw our Christmas card (with our family picture on it) and she said, "Were you new in this picture?"  I said, "Well, it was last Christmas."   Katie said, "Oh, you look new in this picture -- now you look old."  I couldn't help but laugh at that!   However, later that night, I caught a glance of myself in the mirror and thought, "Yes, it is true, and now I look old."  The stress of it all has taken its toll on both Scott and I.  We are hoping  and praying for more peaceful days ahead.
     I had some other concerns with Katie this week and called both doctors, I was told to take her to the clinic for a urine sample and a blood draw.  Nothing really clear came up as to what was going on, but to all of our surprise, Katie's ANC level has dropped almost in half, since the last time we were there.  That is not normal.  Katie's numbers are low enough that she is considered neutrapenic - meaning her immune system is low and she is susceptible to getting sick - which of course we want to avoid - because if she gets a fever that means a hospital stay.  So, one blood draw this week, and they want us to come in next week for another blood draw and doctor exam, and then the following week another blood draw and chemo.  Too many pokes for such a little girl!  It is sure hard on her.
    I am grateful that during my first year of marriage (and becoming a stepmom) I listened to a lecture series entitled, "Love One Another."  Since then, it has always stuck with me to do good - whether people deserved it or not - to do good for the sake of doing good...because at the end of the day I need to ask Heavenly Father, "Is what I have done today pleasing unto Thee?"  I have tried to be kind, honest, and good.  I have given my best and it wasn't enough - at least not for some - and that hurts and it is hard to take.  But this poem by Mother Teresa, reminded me this week, that it was never between me and them anyway.  It has always been between me and Heavenly Father. 

 - ANYWAY -
People are often unreasonable and self-centered
Forgive Them Anyway
If you are kind people may accuse you of ulterior motives
Be Kind Anyway
If you are honest people may cheat you
Be Honest Anyway
If you find happiness people may be jealous
Be Happy Anyway
The good you do today may be forgotten tomorrow
Do Good Anyway
Give the world the best you have and it may never be enough
Give Your Best Anyway
For you see in the end it is between you and God
It Was Never Between You and Them Anyway
                                                                                              (Mother Theresa)

Day 678

     Katie started to feel better about mid-week this week - and for that we are glad!  We took Katie to the new Endocrinologist last Monday.  She said she believes Katie's troubles are related to her treatments (like the other doctor also thought).  She said it is "very rare - very rare" but for whatever reason, Katie's little body is unable to handle the treatments.  I asked her why?..."Why Katie?  There are a lot of other children Katie's age who get Leukemia and go through the exact same treatments, and their bodies handle it, so why Katie?"  She said she didn't know - but she understood from Dr. Dana that Katie has had a lot of unusual things happen and that things haven't been easy for us all along the way.  She said (jokingly) that Katie should buy a lottery ticket... Unfortunately Katie's "luck" may be "rare" and "unusual" but it certainly hasn't been lucky!
     The Endocrinologist said that based on Katie's blood work (which we had done last March & April) that Katie's problems are multifactorial.  She said the other Endocrinologist should have "caught" all this and should have "known" this.  Katie does need to be on daily steroids because there is no way to get an accurate cortisol level because Katie is on and off steroids monthly.  The doctor said she was sure Katie's body needed the help the steroids could provide.  Additionally, Katie is producing insulin when she should not be producing insulin.  So we are going to try and balance that out with the steroids also, plus continue the bedtime snack, corn starch, and 3 am snack.  (She originally told me to feed Katie every 3 hours around the clock - but that would mean 8 & 11 pm, and 2 & 5 am - for the next 6 plus months...I called her on Tuesday and asked if we could just continue with the bedtime snack, corn starch and 3 am feeding, waking Katie up only once a night instead of multiple times during the night - she said that would be fine, so that is what we have done).  Also, Katie's growth hormone is not functioning properly - her growth hormone level is 4.3 and it should be over 10.  However, we will not be able to address that issue until after Katie is done with her treatments, because getting the growth hormone to function, would cause every cell to grow - even cancer cells.  So we will wait on that.  The last issue the doctor saw was that Katie's liver functions are too high.  We have known that for a long time - it is to be expected with the chemo - but as I said, poor little Katie's body just can't handle it all and her body is not functioning properly.
     As a result of all of this, Katie is now on a daily steroid pill - morning AND night!  She is hungry, sweaty and not as happy as a result.  I thought this protocol was working - but this morning Katie called me in her room shortly after 6 am with a weak "Mama."  My heart sank...I knew what that meant...low blood sugar - full body sweat, clammy, weak, sick, pale - unable to get up, she can only call out to me.  I live in fear of a day when she won't wake up.  Katie also worries about it, as she has said to me a few times, "What if you don't hear me when I call you?"  I have tried to assure her that I will hear her.  I will call the doctor in the morning and ask her, "Now what?"
     Scott's dad is scheduled for surgery later this month to have a kidney and cancer removed.  The good news is, the mass in his lung came back benign, so we no longer have to worry about that.  As for Scott's mom, she will still require multiple surgeries on her hand, and hip, but she is waiting until after Scott's dad gets better.  She is still getting around in the motorized chair.
     Personally, it has been a very painful and difficult time for me (and my husband) - our whole family actually.  For years we have struggled with all sorts of issues with Scott's other children and their mother.  The difficulties have been immense - and the pain, stress, and conflict at times have been more than I can endure.  I am sorry for them.  I am sorry for Scott.  I am sorry for me.  I am sorry for my children.  It is so sad how one person's choices can have such a profound and long reaching effect on so many others.  But I also know we have all made choices in this, and we all have our agency and accountability.  "All" with the exception of my children, who did not have a choice in any of this, and I am the most sorry for them. -- I am not perfect by any means, but I have done my best to do right by ALL.
     We are part of an organization called "HopeKids."  They are an organization for children and families with cancer.  They send us an occasional uplifting message.  On occasion I have read bits and pieces of the uplifting message they send.  This week however, when I opened up my email, the latest message from HopeKids was open.  The title caught my eye - I began reading and kept reading - this was the message I needed this week.  I am grateful for tender mercies such as this.  The following is that message from HopeKids:
Just Keep Swimming
"Four years ago today, I lost my 41-year-old cousin to a 16-year battle with a brain tumor. It was a very difficult time for me emotionally. I will never forget one night in the week after she passed, I was laying on the couch crying and my daughter Kailee, who was 6 years old at the time, came up beside me and asked me what's wrong. I told her I was sad about my cousin Chris and she into my eyes and said, "It's okay mom... just keep swimming."
We had just watched the movie 'Finding Nemo' so I knew immediately what she was talking about. For those of you who have watched this movie, I know you can picture the scene where Dory and Marlin drop the mask with the address to where Nemo is and Marlin gets all upset. Dory prompts Marlin to start swimming down to retrieve the mask, but it's so dark they can't see anything.  Marlin refuses to swim any further because he is scared. It was then where Dory begins singing, "Just keep swimming, swimming, swimming..." As Dory continues to sing, Marlin relaxes as he swims down towards the bottom of the ocean. Alone, Marlin never would have gone into the darkness, but with Dory by his side, Marlin is able to keep swimming despite his fears.
When you enter a dark period in your life, whether it's a child getting sick, a job loss, a marriage struggle, or loss of a loved one, you are not alone.   God is right there by your side. He takes your hand and walks with you through the darkness.  In Isaiah 41:13 it says, “For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you.” Alone, it will be difficult to get through the dark time in your life, but when you rely on God’s strength, you can do all things.  Just like Marlin was able to overcome his fear with Dory by his side, you will be able to overcome your fears with the Lord by your side.
In the Bible, Philippians 3:13-14 says, "But one thing I do: Forgetting what is behind and straining toward what is ahead, press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus."
I encourage you to grab a hold of God's hand and just keep swimming!
- Bridget Asheim, HopeKids Arizona


    

Day 669

     Katie and I stayed home from church today.  She was not feeling well enough to go.  Katie got her chemo last week - plus an IGG infusion - so we had a long day at the clinic.  (We got to see Ori - our little friend who relapsed - he was looking good, his hair was growing back in - it is always fun to see him).  The nurse had a hard time getting Katie's IV in, so Katie ended up getting 3 pokes that day.  On the upside of that, Katie and Conner got to pick a "big" toy out of the closet, because it was such a rough day.  
     Dr. Dana said 15 to 20% of patients have their hair fall out again.  They don't really know why.  Katie's hair most likely will not fall out all the way, but just thin out - a little or a lot.  We will just see what happens.  They gave Katie a book entitled, "I don't care if my hair falls out."  Everyone is concerned about Katie being older, and being more aware and sensitive to loosing her hair.  So far, her hair is still looking good, and I am glad. 
     We have an appointment tomorrow with a new Endocrinologist.  Dr. Dana referred us to her.  Dr. Dana used to work with her and said she felt like she would be a better fit - and help.  Dr. Dana was going to call her to fill her in on everything.  Dr. Dana does not think Katie's low blood sugars are related to her treatments.  She said they have only had one other patient with the same symptoms as Katie, and it turned out that patient had a genetic disorder (in addition to the Leukemia).  Dr. Dana said this Endocrinologist has a background in genetics, and if this doctor is unable to help us, she could refer us to a Geneticist.  
     Katie is on her monthly dose of steroids right now, and she is not feeling well.  She doesn't even want to swim - which says a lot.  Swimming has been the highlight of our summer.  I did not enroll Katie and Conner in swim lessons - after last years trauma with Conner and the "mean" swim teacher.  Plus, Katie has so many ups and downs, we would never have been able to get through the lessons.  So, I decided to be their swim teacher.  We have been swimming on a daily basis (except Sundays) and sometimes we even swim twice a day.  Katie and Conner have LOVED it!  And they have progressed so much.  They are quite the little fish.  They no longer need floaties, and they can both swim under water and float.  Our favorite swim days are the days Daddy can swim with us.  Conner says, "Daddy wins!  He is the best a throwing me up in the air like a rocket!"  When Scott is there, everything is, "Daddy, look at this, Daddy watch me, Daddy... Daddy..."  We have all had a really good time swimming together this summer.  Scott and I have never liked having a pool - it is such a huge worry, hassle, and expense - but this summer it has been worth it!  Swimming has made our summer fun.
     This is my scripture for the week, as we are dealing with some hard things (the fallout of Pandora's box being opened).  This is a hard one, but an important one: "But I say unto you which hear, Love your enemies, do good to them which hate you, Bless them that curse you, and pray for them which despitefully use you." (Luke 6:27-30)  I have found it is hard to forgive - especially as it the trouble continues to swirl and remains constant.  However, I believe forgiveness can come with time and distance - someday when there is time and distance.  For now, I struggle with bitterness.  How to not become bitter while bitter things happen, and are said, and done.  Focusing on Katie and Conner helps.  I want to be happy - for them.  I want to be strong - for them.  I want to be peaceable - for them.  I want my home to be a refuge - for them.  I want to be an example - for them.  I pray for a soft heart, peace, and strength.

Day 661

     So, we are on the final stretch - 6 months of treatments left  - what else could possibly happen...Right?...... Wrong!  Much to our shock and dismay, Katie's hair is falling out again.  I guess it is the increase in the chemo (but the increase was just supposed to compensate for how much she has grown, so we thought it would all balance out).  A long time ago the doctor told us this could happen again, but we thought we were past that - we were not expecting this at all!  Katie's hair has gotten so long and thick, it is almost impossible to conceive of it falling out again.  I guess I have been in total denial about it, all the signs were there, but I didn't put it together - until a few days ago.  We were swimming and I could see Katie's scalp, and I was worried about her getting sunburned - and then I thought, "Why am I seeing her scalp?"  And then reality came flooding in... not quickly or immediately... but slowly throughout that day.  --When I brushed her hair a lot came out... And even when her hair was dry, I could still see her scalp... I recalled that last Sunday I had on a black shirt, and midway through church Katie pointed at my shirt and laughed - my shirt was covered in her hair - I remember thinking, "Wow, this shirt really collects a lot hair"... I also remembered looking at her car seat last week and thought, "That is weird, there is a lot of hair all over it"...  I just never put it together.  Denial I guess.  So, it all finally came together in my mind this week.   And actually a few times since then, I have still thought, "Maybe I am just overreacting, maybe it really isn't falling out" - but it is - all over - all the time.  In the bath tub, in the hairbrush, in my hands, in her mouth, all over her, all over the place...
     Her hair is thick, so she still has a lot.  For now it is just thinning.  It always thins out on top first (just like a balding man).  I don't know if it will fall out completely, or if it will just thin out - but either way, I think we might have to cut her hair short again....  Everyone always comments on her hair, how long it is, how pretty it is, how much it has grown...  How do we tell her that her hair is falling out again?  How will she take it?  Now that she is older, will it upset her when people stare, comment, or laugh?.... Scott and I are sick about it.  I don't want her to be made fun of, and I don't want her to feel embarrassed.  I am trying not to get down about it.  I know it is not a tragedy.  It's not like the cancer is back.  It is just the chemo doing its thing.  I know her hair will grow back, and hopefully we will never have to go through this again.  But we just weren't expecting to go through this now - again!  We thought we were past all of this.  But the "surprises" keep coming.
    The day after I figured out that Katie's hair was falling out, I went shopping and bought outfits for Katie and Conner, and took them to get their pictures taken.  It was already on my list of things to do, but it got "bumped up" on the list.  Katie has a rash on her face (from the chemo) and I was waiting for that to clear up, but now that her hair is falling out, there was no time to waste - so I put some make-up on the rash to cover it up.  The pictures turned out great - and I am very glad!
     Katie goes to the clinic this next week (on Thursday) for her next IV dose of chemo.  We will speak to the doctor about all of our concerns.  This higher dose of chemo has definitely taken its toll on Katie.  She still has a little sore on her lower lip, and she looks paler than usual, and of course her hair falling out... 
     I have been in regular contact with the Endocrinologist.  He said that what we are doing (stopping the steroid and giving a 3 am snack) is "acceptable."  And it was working fine until today.  Katie had a rough night.  She was whimpering and moaning and twisting and turning.  Finally at 2:30 am I couldn't take it anymore (worried), I woke her up and asked her what was wrong.  She didn't know.  I gave her the early morning snack.  She seemed fine, she got up and went to the bathroom.  However, she was still very restless after that - still tossing and turning, and whimpering occasionally.  It was like she was trying to "fight off" something all night.  At 6 am, I couldn't take it anymore (again) and I checked her blood sugar - I wasn't really expecting it to be low because I had fed her at 2:45 am - but it was low - 57 - which isn't super low - but still low.  Katie was very symptomatic at that point - sweaty, weak, shaky, feeling sick. I feel so sorry for her....   We don't know what is going on with her- the doctors don't know what is going on - nothing seems to be working.  --The Endocrinologist did call in a prescription for glucose gel and glucagon kit in case of an emergency (if Katie becomes non-responsive).  He also prescribed a hydrocortisone shot and said if she ever gets flu like symptoms or throws-up repeatedly, that I should give her the shot and take her to the emergency room.  (Really??  Katie has already had flu like symptoms - and has thrown-up repeatedly - and NOW he tells me this?...  Why didn't I have all these things before?  Why did he only get proactive now - after the nurse told me he should be more proactive and they should be doing more to help - and I had to ASK for a glucagon kit-  after I found out there was such a thing as a glucagon kit...)  I don't understand it.  I am frustrated with the doctor - and I am frustrated with what is going on.  I am worried about Katie and I don't know what else to do to help her.
     To add to the worries, we have been infested with scorpions - and it is not just us - it is our neighbors all around us as well.  (Scott says, "We are not infested with scorpions - we just have an occasional scorpion." So, okay, maybe not "infested", but there have been too many - one is too many).  My neighbor and I sent our husbands on an outdoor scorpion hunt the other night, and I go on nightly scorpion hunts (with a black light) inside the house (multiple times a night).  It is a daily/nightly worry and stress. 
     As for Scott's parents, we are still in waiting mode.  Scott's mom is getting around in a scooter chair, and his dad got a PEP scan this week and had a biopsy on his lung.  So, no surgeries yet, just tests and more tests and more waiting. 
     "As we live on earth we must walk in faith, nothing doubting. When the journey becomes seemingly unbearable, we can take comfort in the words of the Lord: 'I have heard thy prayer, I have seen thy tears: behold I will heal thee' (2 Kings 20:5). Some of the healing may take place in another world. We may never know why some things happen in this life. The reason for some of our suffering is known only to the Lord."  (James E. Faust, "Where Do I Make My Stand?" Ensign, Nov. 2004, 21)
    

Day 655

     We have a new computer - yay!  It feels like it has been a long week - a lot has happened.  We are still struggling with Katie's blood sugar levels.  As I indicated last week, I started Katie on the full Hydrocortisone (steroid) pill on July7th - and no improvement - Katie continued to have low blood sugars - every day.  We were up in Heber for 4 days (6-9th).  I put a call into the Endocrinologist (and Oncologist nurse) as soon as we got back.  Katie had 6 consecutive days of morning low blood sugars.  She even had a low blood sugar episode in the evening on July 7th (which was very unusual and concerning!).  Poor thing - I have turned her into a pin cushion!  After what happened last week when I posted - waiting and wondering - and then regretting waiting, I didn't want that to happen again, so I have OVER checked her - all hours of the night and day.  For those who don't understand, a lot of children with a blood sugar around 38 or so, would be non- responsive (according to the Endocrinologist nurse), and would not be able to drink or eat to raise their blood sugar.  If is goes too low, she could have a seizure or go into a coma, or worse....  After speaking to the Endocrinologist, and the Endocrinologist nurse - I still have more questions than answers!  The nurse was very alarmed by what has been happening (for months) and seemed very disturbed by the doctors lack of alarm about what is happening.  I emailed the doctor on Friday, about my questions and concerns, and I am waiting to hear back from him - on a multitude of issues.  Like, shouldn't we have a glucagon kit here at home in case Katie does become non-responsive and is unable to drink juice.
     When I spoke with the doctor last week, about her low blood sugars he just said, "Hmmm.  I am not sure, I guess try upping her steroid to one and a quarter pills and see if that works.  Then e-mail me on Friday and tell me how she did."  I was so frustrated with that response!  I did increase her steroids for the 2 days and she did fine - but like I told the doctor, that may be because the increased dose worked, or it may be because Katie didn't have a low blood sugar episode (I suspect the latter, because based on months and months of experience).
     Additionally, we were also back to our original concern with the daily steroid....  Katie is very sensitive to steroids - apparently even low dose steroids.  Once again, Katie was not herself.  She was very emotional.  Gone was the laughter and smiles - replaced with lots of crying, yelling, and pouting.  Katie was eating constantly - outrageous amounts - and if I tried to stop her or not feed her, she would get very upset.  She was also more lethargic - and she was sweating all the time ( which lead me to test her blood sugar more, to see if she was sweating due to the steroid, or due to the low blood sugar).  Katie was miserable.  I was miserable.  How could I do this for 6 months!?  How could I do this to her for 6 months!? -- Scott said we couldn't and wouldn't.  After 6 months of behaving like that, she wouldn't even know herself anymore.  It would be tragic for her - and us - if she lost her sunny disposition.  Ironically, she is what helps me get through it all - she is by nature, so happy and positive.  I do not want to take that away from her.
     The Endocrinologist's response was " I guess...." - well, I can guess too.  The doctors don't know what to do for her - and what they are doing isn't working - and has actually in some ways made matters worse.  If you remember, a couple of months ago, I tried waking her in the middle of the night to give her corn starch and that didn't work. -- Of course not, who would want to wake up in the middle of the night to take 2 tsps of cornstarch mixed with water!  So, we know that won't work. 
And the steroids are not working (in several ways), so we have decided not to give her the steroid anymore, but instead we have decided to wake her up around 3 or 4 a.m. and give her juice and a carb/protein snack.  Scott and I feel this is a MUCH better solution to the problem.  I can do this for 6 months - it is just like waking up in the night with a newborn.  It is not a perfect solution, but we think it will be much better for Katie all around.  I will speak to the doctor about it tomorrow - but like I said, they haven't come up with a solution that works.  I hope this will!!!  - I will ask again for a glucagon kit, just in case she ever does become non-responsive.
     I also had to call the Oncologist (again) on Friday.  Katie has gotten 3 sores just on the inside of her bottom lip.  Her lip is a little swollen and red - and the sores are painful.  Mouth sores are a result of the chemo, and we have avoided it so far, and I was hoping to avoid it all together.  I also knew that could mean that Katie's levels had dropped.  The nurse said as long as she was acting "appropriate" and the sores did not get any worse, then we wouldn't need to bring her in.  I am just glad the sores are not in the back of her throat, and hopefully the sores she does have won't get worse.  --So like I said, we had a lot going on this week!
       Katie had a "break through" at church today.  Katie and Conner are very shy.  They rarely - if ever - talk to anyone outside of our family.  I have never seen them give anyone "five' (that isn't a family member).  However, on Sunday, Katie's primary teachers told me that Katie had a GREAT day.  Katie talked to them, and joked with them, she said the closing prayer, and she gave her teacher "five" without hesitation!  Katie really enjoyed her day.  I am so glad!
     I realized after my last post that I hadn't said what I was "glad" about.  I had forgotten to be glad.  So today, I am glad for Katie.  This week she is my inspiration.  Scott and I love her sweetness and goodness.  She is so good!  This week Katie told me, "You are the kind of Mommy I always wanted. I wanted a nice Mommy, and you are nice.  I wanted you for my Mommy - you are the best Mommy I ever wanted."   So sweet! -  She always says to me, "Best friends?"  I reply, "Best friends" and then she hugs and kisses me.  I don't know where she got that from, but it is sweet.   - Katie also compliments me all the time.  She will tell me I look beautiful, or that I am really good at cooking yummy food, or she likes what I am wearing, etc... - Katie is quick to smile and ready to laugh.  And what a laugh!  Katie and Conner both have the greatest laughs - it is contagious - you can't help but laugh with them!  Katie is very generous with her laughter.  I am truly a blessed mother.
      "There are two purposes for life in mortality. The first is that we might gain experiences that we could not obtain in any other way. The second is to obtain tabernacles of flesh and bones. Both of these purposes are vital to the existence of man. We are now being tried and tested to see if we will do all the things the Lord has commanded us to do. These commandments are the principles and ordinances of the gospel, and they constitute the gospel of Jesus Christ. Every principle and ordinance has a bearing upon the whole purpose of our testing, which is to prepare us to return to our Heavenly Father and become more like Him."  (L. Tom Perry, "The Plan of Salvation," Ensign, Nov. 2006, 71)