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