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)
    

Day 647 - PART 2

    I am still on the iPad, because for some reason my home computer will not let me post or edit.  The iPad messed up when I went to check on Katie, and I couldn't get it to scroll down so I could finish my post.  So to finish...  Katie, Conner and I stayed with Scott's mom yesterday while his dad went to the doctor and ran some errands.  I was happy I could help.
   I checked Katie again and decided to test her blood sugar - and darn, I should have checked her sooner!  When she came in at 3, I kept trying to wake her up enough to ask her if she needed juice.  Katie KNOWS when she is just hot or when she is having a low blood sugar - which is amazing for a 4 year old.  Katie was too asleep/sleepy to answer me... I should have just checked her, but I just wasn't sure.  Now at 5 am her blood sugar was 38.  Way too low.  Frustrated with myself!  Sorry for her!  Now we will have to go to the full pill and see what happens.
     In addition to everything, "Pandora's box" has recently been reopened........    Scott reminded me a couple of days ago about a time when we were dating.  We were playing a game of Monopoly with some friends.  One of my friends was loosing, she was out of money, and I felt bad for her, I didn't want her to loose, so I gave her some of my money.  I am not a competitive person.  I don't like winners and loosers - I want everyone to win.  Scott says I always try to make things fair, even - I want everyone to win, I want things to work out, I want everyone to be okay, I try to make everything better, I try to fix things... but I can't...  I can't make everything better, and I can't fix everything.  There are  some things that just can't be fixed.  And that is hard on multiple levels.  Now with "Pandora's box" being reopened, and all this evil swirling all around us again, I was feeling - well, lots of things - but none of them very positive...  However in the midst of this, two young sister missionaries show up at our door, and this is the message they shared with us: "Now ye see this is the true faith of God; yea, ye see that God will support, and keep, and preserve us, so long as we are faithful unto him, and unto our faith, and our religion; and never will the Lord suffer that we shall be destroyed except we should fall into transgression and deny our faith." (Alma 44:4)
     I had been feeling the power of the destroyer and feeling so overwhelmed.  Without their even knowing it, these two young sister missionaries, who thought the were here for a different reason, actually delivered an inspired message directly to me from a loving Heavenly Father...  No person or power can destroy me, unless I fall into transgression.  So, the evil may continue to swirl - and I am sure it will - but I know that God will support, keep, and preserve us.

Day 647

     Katie had a hard week, but she is doing better.  She is having tummy troubles again (still).  Based on what is happening this month I think it is safe to say Katie was not the "source" of the stomach flu that hit so many in my extended family last month. :)  It is however, distressing.  I called the clinic yesterday to speak to a nurse, but missed her return call.  So now I will have to wait until next week.  Along with her tummy troubles, I wanted to talk to the nurse about Katie's medication.  As I said, the doctor increased all of Katie's meds.  We had never met this doctor before, and when she gave me the new prescriptions, I noticed one of the prescriptions was actually a lower dose than what she had been taking.  When I questioned her about it, she said, "Oh, did I calculate wrong?"  I told her I didn't know...She checked and rewrote the precription...Scott and I still aren't feeling comfortable about it, so we thought we would ask to have all her prescriptions double checked - which is hard, because we don't want to offend the doctor - but more importantly, we need to take care of Katie.
     Katie climbed in my bed at 3 a.m. this morning (which she will sometimes do when she knows Daddy is at work and that side of the bed is open).  She instantly fell back asleep - but not me.  She feels sweaty - which could just mean she is hot, but it could also mean she is having a low blood sugar.  I laid there next to her for an hour, feeling her, listening to her, watching her, wondering if I should poke her and check her blood - that way I would know if she was okay or not and then I could go back to sleep, but that would wake her up and make her cry - so poke her or wait???  I will wait a little longer, before I wake her, if I feel I need too.
     Obviously, we still don't have her blood sugars under control.  I can't remember how much I updated about that, but Katie is on a daily low dose steroid now, because the corn starch and bedtime snack was not working, to keep her blood sugars up during the night.  (and it was corn starch, not corn syrup - I have had several people ask me if I mistyped that - I wish it had been corn syrup, that would have been much more pleasant for her to take!). Anyway, when we were in St. George, about a week after Katie started the steroid, we noticed changes in her, she seemed weak, moody, and hungry.  We knew we couldn't do 7 months of that!  So we made the decision to cut the pill down to a quarter pill.  That didn't work!  Two low blood sugars later, and back in Mesa, I called the Endocrinologist.  He said to try half a pill - so that is where we are now - and Katie just finished her round of high dose steroids- and now is when the low blood sugars usually start - so I am waiting, worrying, watching, to see how she does on this half dose...
     We found out yesterday that Scott's dad has cancer in 2 places.  He has a nickel size mass in his lung and a tennis ball size tumor on his kidney.  They will have to do 2 separate surgeries.  They will operate first on his lung, and then later they will remove the tumor and one of his kidneys.  Right now that is all we know.  He may not need any further treatment after that, but I guess they will know for sure after they operate.  Scott's mom somehow tore her meniscus in her knee a couple of days ago, so what mobility she had gained, she has now lost - she can get around in a wheelchair, but it is the getting up and down that is the problem again.  She is still waiting to see about her surgeries.

Day 640

     Scott, Conner, Katie, and I were out of town last week.  We were in Southern Utah - we had planned on going later in the summer, but we knew if we didn't go now, we would not be able to go.  Scott's mom is still waiting to have her surgery, and Scott's dad has been diagnosed with cancer.  We do not know how bad his cancer is yet - he will get surgery in the next few weeks, and then we will know more.  We wanted to be here to help Scott's parents through all of this, so we left for Utah just two days after I got back from New Mexico.  Nathan also came back from Montana early.  We are taking things as they come and adjusting as we need to.  Although, the news about Scott's dad has been a pretty big blow....
     I have spent this week trying to get caught up, after having been gone most of the month. (Plus, I fell and broke my tailbone just before we left for Utah - and that has been painful and it makes every task more difficult).  Scott said maybe I had a little bit of an idea of what his mom has been going through - and I told him, "No way!  Strap me to a bed for a three months and don't let me eat for two months, and then I might have an idea of what your mom has been going through!"
     Katie went in for her treatment yesterday.  This was the big one - the IV chemo, plus the spinal tap.  A different doctor does the procedure every time.  This time Katie got a big bruise on her back around the puncture - she has not had that happen before.  Katie has complained of her back hurting.  Katie has 2 more spinal taps to go through before we are done.  This was the first time Conner has gone with us for this procedure.  I think it is good for him to see what Katie has to go through (although we only took him because we couldn't find anyone to watch him - but we do think it is good for him to go with us occasionally, so he can know what Katie is going through).
     The doctors have increased Katie's medications a couple of times in the past few months.  We knew they might need to increase it again - and they did - but what we weren't expecting was to have ALL of her medications increased.  Usually, they just increase one at a time, but this time the doctor increased all of her medications - significantly - even her steroids (not the daily one for her low blood sugar, but her monthly high dose steroid for the chemo).  We we told her numbers were down - so they didn't need to increase her medications because of that, but they increased it because she has grown.
     I can't even begin to explain how difficult and painful it is to increase her medications.  Each day when I give her her medication, I know it is for her good, but I also know it is hurting her as well - short term and long term.  And now we are giving her more...and more...and more.  I was feeling very upset about it last night, and then during family prayer, Scott said how "grateful we are that Katie is able to receive the treatments she needs."  Instantly, my heart was softened, as I was reminded how blessed we are that we have the treatments and medications we need for her.  I don't know what the long term effects of these treatments will be for her, but I know we are doing what we need to do now to save her life - and if that means more chemo and steroids, then so be it.  I am glad that Katie has a cancer that is treatable.
     Being at the hospital/clinic is always a hard day.  There are sick children everywhere you look.  Yesterday was especially difficult for me.  I saw too many sick children - so many that looked so very very ill.  The images of these children linger in my mind.  There was one boy in particular yesterday who caught my eye.  Our eyes locked upon each other, and we held each others gaze for a few moments...he looked so sick...and my heart broke for him.  I was filled with compassion for him and I felt a love for him.  I wanted to help him, and yet there was nothing I could do, but offer him a feeble smile.  It is almost overwhelming at times.  There are so many children who are sick and suffering, and so many parents who are struggling and suffering.  So many!...
     I don't mean to be negative, but sometimes it is so hard to make sense of it all.  There is so much suffering.  Two days ago Scott went on a call for a 2 vehicle car crash - 3 fatalities, 1 injury - Scott had to extract their bodies out of the cars.  A drunk driver was killed in one car, and a husband and a wife were killed in the other, and their son who was in the back seat was badly injured.  One man, with 2 previous DUI's, made a choice that destroyed not only his life, but also an entire family.  It is just hard to make sense of things like that (and all the suffering little children).  However, I also know, that is when we have to turn to the Lord, and trust in His will and His timing.
     I like this quote I read today by Chicko N. Okazaki.  "The first person we need to be honest with is the Lord.  The Lord doesn't just want pretty prayers.  He wants real prayers.  Sometimes we think of those eloquent, gracious prayers in sacrament meeting and general conference as the models for our personal prayers.  We try to our rough thoughts into smooth sentences and it seems hard.  We know how to say, "I am so grateful for our son who is on a mission," but we might not know how to say, "I am so scared and so mad about our son who is on drugs."  Heavenly Father wants to hear the scared and the mad prayers just as much as he wants to hear the grateful prayers.
     "Sometimes it's very hard for us to be honest, especially with negative feelings and ideas.  Elder Neal A. maxwell asked a soul-searching question: "Can we partake of tiny, bitter cups without becoming bitter?"  I think we can, with God's help, but not if we deny that the cup is bitter in the first place.
     "When Jesus was praying in the Garden of Gethsemane, he was honest about how hard the Atonement was going to be for him when he prayed that the cup might pass from him.  He struggled with a "very heavy" burden of feelings, saying, "My soul is exceeding sorrowful unto death," and he prayed, "Father, all things are possible unto thee; take away this cup from me" (Mark 14:33-34,36).  He was honest about how much de didn't like what was happening; and I think it's because of his honesty that we so revere the love and humility revealed by the rest of the prayer: "Nevertheless not what I will, but what thou wilt" (Mark 14:36).
      "Can we be equally honest in our prayers?  Remember, we're not going to shock our Father in Heaven.  There isn't anything we can say that he hasn't already heard, nothing we can show him that he hasn't already seen.  We may shock ourselves a little when we start being honest, but I think some very profound revelations come to us in those moments."  ("A Year of Powerful Prayer " 132).