Day 409

       Katie went for her check-up yesterday (it was switched from Wednesday to Thursday).  Anyway, Katie's number's all look great and the doctor said her lungs sound great!  So, we will get to keep our holiday plans!  We are so glad! - Glad that we get to keep our plans, but mostly glad that Katie is better! 
     Nathan is also better...but now I am sick.  I know, we seem to just go around and around here, but each of us has been sick with totally different things - which is odd!  I am on antibiotics now, so hopefully we are all past any sicknesses, and we will all be well during the holidays.
     In talking about some regrets many people have when dying, President Dieter F. Uctdorf said the following:
     "Another regret of those who knew they were dying may be somewhat surprising. They wished they had let themselves be happier.

     "So often we get caught up in the illusion that there is something just beyond our reach that would bring us happiness: a better family situation, a better financial situation, or the end of a challenging trial.

     "The older we get, the more we look back and realize that external circumstances don’t really matter or determine our happiness.

     "We do matter. We determine our happiness.

     "You and I are ultimately in charge of our own happiness.

     "...We shouldn’t wait to be happy until we reach some future point, only to discover that happiness was already available—all the time! Life is not meant to be appreciated only in retrospect. “This is the day which the Lord hath made … ,” the Psalmist wrote. “Rejoice and be glad in it.”

     "Brothers and sisters, no matter our circumstances, no matter our challenges or trials, there is something in each day to embrace and cherish. There is something in each day that can bring gratitude and joy if only we will see and appreciate it.

     "Perhaps we should be looking less with our eyes and more with our hearts. I love the quote: “One sees clearly only with the heart. Anything essential is invisible to the eyes.”

     "We are commanded “to give thanks in all things.” So isn’t it better to see with our eyes and hearts even the small things we can be thankful for, rather than magnifying the negative in our current condition?

     "The Lord has promised, “He who receiveth all things with thankfulness shall be made glorious; and the things of this earth shall be added unto him, even an hundred fold.”

     "Brothers and sisters, with the bountiful blessings of our Heavenly Father, His generous plan of salvation, the supernal truths of the restored gospel, and the many beauties of this mortal journey, “have we not reason to rejoice?”

     "Let us resolve to be happy, regardless of our circumstances" (Of Regrets and Resolutions, Ensign, Nov. 2012).

Day 403

      Katie's cough seemed worse yesterday, but today (for the first time) it seems better.  We are glad about that!  She is still really weak and tired.  Although, I am sure the steroids and chemo are partly to blame for that.  Katie is having to take a lot of medications right now, which isn't any fun for her (or us).  But we are glad to be home!  
     Last week gave us a scare.  We feel so very blessed that Katie is getting better.  Once again, we are thankful to live in a day and age when there are hospitals and medications available.  We are also thankful to live near family.  Scott's parents took care of Nathan and Conner for us when Scott was working - and they did whatever else needed doing.  We are grateful for all of your prayers!  And we are thankful for the dinners that were dropped off (Nathan was especially grateful for this!)  
     Speaking of Nathan, he just walked in from an all day (out of town) wrestling tournament... and he has a fever of 102.6!  From his symptoms, I would say he has the flu.  Not good - for him, Katie, or us!...  
     The school shooting in Connecticut has been difficult to comprehend, and our hearts break for the families who lost children and loved ones.  I find comfort in this quote: "Our task is not to decipher exactly how all of life's pieces fit and what it all means, but to remain faithful and obedient to Him who knows all mysteries"  (Dr. James Dobson).

Day 401

     We got another surprise today...We got to come home!  We just got home around an hour ago, about 4:30 p.m.  I wanted to write this before I crashed.  It has been a long 7 days.  We had some very scary moments - and just a scare overall.   But we are glad to be home!  Katie's fungal test came back negative - and we feel very blessed!  We are still waiting the results of the valley fever test. 
     Katie's numbers were all very good today, so the doctor let us come home.  Scott is picking up her antibiotic right now.  She will be on an antibiotic 3 times a day for the next 7 days.  We will be taking her into the clinic for a check-up next Wednesday.  We are hoping all will go well.
     Katie has had 2 IV's for the past week.  This was very hard on Katie because they put hand guards on her hands, (which Katie calls casts) and she hasn't been able to feed herself, color, or play.   Yesterday afternoon they removed one of the IV's and hand guards.  At 4:00 a.m. this morning, after I took her to the bathroom for what seemed like the 100th time, I put her back in bed and then went to wash my hands.  When I walked back into the room, Katie was lying on her bed smiling.  I asked her what she was smiling about, and she said, "Isn't it great that I have one of my hands back!!" I smiled at her and told her, "Yes, that is great!"  She said, "Yah, now I can feed myself cereal and stuff."
     I think it is great that after everything she has gone through in the past week (year), she can wake up at 4 in the morning, and still find something to be glad about.  She is a "Pollyanna!"  She is an inspiration and we love her.  (The bummer of it all was that at 5 a.m. the nurse messed up the one IV Katie had left, so they had to remove it and put in another one). 
     It has been a difficult week for her (and us) but we feel very blessed things have gone as well as they have.  She is home, she has two hands back now...and she is playing and smiling.  And that is "great!"

Day 400

     Katie had the cat-scan last night at 10 p.m.  The doctor showed us pictures of the scan today. Katie has something going on in the lower portion of one of her lungs.  It is either a partial collapse or it is pneumonia.  They are going to treat it as if it is pneumonia.  If Katie does not improve or spikes another fever, then they will do the scope.
     They are stoping some of the antibiotics today and starting Katie back on her chemo.  They want to see how she does.  The doctor had two more labs drawn today.  One to test for a fungal infection and the other to test for valley fever.  (A fungal infection would be devastating, and that has been our greatest fear this past week! - They do not think that is what it is, but they/we just want to make sure).  If all goes well, they said we could go home in a couple of days.
     Katie is looking and acting better.  She still has a bad cough though.  Today when the nurse came to draw labs, Katie cried over and over, "I'm scared Mommy, I'm scared....It hurts it hurts!"   It hurts me to see her go through this!  We will sure be glad when this is all over and we are home again!  Today we are glad Katie seems to be feeling better.  - Now, if we can just get her to eat!  Although she did start on her steroids today, so I am sure her not wanting to eat, will no longer be an issue in a day or two!  (As the "fun" of the steroids kicks in!)  Poor thing, she just can't seem to get a break....  I am not sure what this will do to our holiday plans of going home to New Mexico.  We will see how it all goes.  Again, we are just glad things seem to be going better today.

Day 399

     Today was a better day.  Katie did not get a fever and her breathing was better.   Although her cough is still hanging on.  We are glad she didn't have to get a cat-scan or scope.  We are grateful for all your prayers!  The prayers have helped.  The doctor put in an order for some chemo tomorrow.  Not all of her usual chemo, but some that they say won't drop her levels.
     Scott is off shift, so he is going to stay with Katie tonight, and I will go home with Conner.  Katie doesn't want me to leave (and I really don't want to leave) but I am pretty wiped out.  Plus, Conner told Katie, "We need to take turns with Mommy."
     Well, the doctor just came in and said Katie still isn't breathing the way he would like.  So they are going to go ahead with the cat-scan tomorrow.   They will hold off on all the chemo until we get the results back.

Day 398

     Katie's fever seems to have broken today.  So hopefully we are finally heading in the right direction.  Katie had her 3rd x-ray today.  The results were still inconclusive.  Our doctor consulted with several other doctors.  It could be phenomena, fungal, or a virus.  If Katie spikes another fever, or if she is still breathing hard tomorrow, they are wanting to do a cat-scan and also scope down into her lung.
     If she is better tomorrow, then I guess we are going to assume it is viral.  I think she is past having a fever (finally), but her cough still isn't any better.  I don't know what to expect.  As much as we don't want to be here, I am afraid to take her home with such a bad cough, and resume her chemo treatments.... They haven't given us any kind of timeline on anything, because it is just day to day decisions based on how she is doing.
     One thing is for sure, Katie is ready to be home.  She is done with being poked, having labs drawn, medications, etc....  Today we were glad Conner was able to come and spend a few hours with us (rather than just a quick hi and bye).  We have missed him!  When Katie gets poked she always cries for her Daddy and Conner.  She will repeat over and over, "Daddy, Daddy, I want you Daddy!  Conner, Conner, I want you Conner!"  (And then she cries, "Owie Mommy owie, no Mommy no!"  -- It's not fun).  Conner asked if he could sleep here tonight too.  It is hard for him to understand all this.  And it is really hard for Katie to understand all of this!
     We are grateful for your prayers!  Please keep praying for Katie.

Day 397

     Katie's fever continued throughout the night.  We thought her fever broke today, but she got another fever this afternoon.  Her heart rate continues to be high and her breathing laborious.  She has been very pale, although she seems to have perked up a little bit tonight.  Her cough isn't any better.
     Her second chest x-ray came back showing a growth of something in the lower part of one of her lungs.  They are going to take another x-ray tomorrow.  The doctor said they didn't know what it is - anything is possible at this point.  It could be no big deal or it could be a big deal.  We will just see what tomorrow brings.
     Today I am glad my mom is still alive and I can talk to her.  Sometimes you just need your mom.
   UPDATE: Fever again at 9 p.m.  I suppose this will continue through the night again - just like the continuous blood draws, medications, and vital checks....

Day 396

     We thought this would be a  "routine" hospital stay - Katie would get the antibiotics, she would get better, and then we would go home.  It hasn't been that simple or easy.
     Katie tested positive for a virus, but they aren't sure if something else is going on.  They are running more tests.  Katie's fever keeps spiking.  This morning it hit 104.3, and it has gone up and down all day.  Her heart rate has continued to be very high and her blood pressure dropped really low today.
     It was a difficult night last night and a hard day today.  Katie has gotten worse, not better.  The doctors took another chest x-ray tonight - we are still waiting on the results.  All of her levels have dropped.  Yesterday her ANC (immune system) was at 406 (the average persons is 2,000).  Today her ANC was 68!  So her body has nothing to fight with.  They now have her on 3 different antibiotics and continuous fluids.  The doctors are talking about her needing a blood transfusion and possibly platelets.
     We need prayers - Katie needs prayers.  Please pray for Katie.
      NEW UPDATE- Katie's latest blood work came back.  Her ANC is now at 17.  Her Hemoglobin is 9.7.  Her white blood count is .7. Her platelets are 104.  They aren't going to do any transfusions tonight, but we think she will definitely need a blood transfusion tomorrow.  We have learned from experience that when Katie gets in the 9 range she needs a transfusion.  Also, I forgot to say what I was glad about today.  I am glad Scott was able to take some time away from work to be here with us.  Things are always better when "Daddy" is here.
   

Day 395

     To our suprise, Katie was admitted to the hospital today.  We were told she would need to be here for a minimum of 48 hours and possibly longer depending upon how things go.
     Katie had a low grade fever last weekend, but then she was fine...or so we thought.  Although she has has been noticeably weaker this week.  She has been saying, "my legs are tired of walking."  I can remember asking Scott, on Wednesday evening, if Katie seemed okay.  He asked me what I meant, and I said I wasn't sure, but that she just didn't seem okay to me.  That night she woke up crying a few times.  She didn't have a fever, but oddly her feet were burning hot.  It was the strangest thing!  By morning her feet felt normal, although she said she felt nauseous.  Then last night, she cried every hour during the night.  Her feet felt hot again, and then as the night wore on she got a fever.  Scott was working and I wasn't sure what to do.  We are not allowed to give medication without calling the doctor, but we are told to call only if her fever is over 101.  Her fever stayed in the 100 range during the night.  It hit 101.6 by 7:30 am.  Scott got home around the same time.  We called the clinic when they opened at 8.  We knew they would tell us to bring her in, but we figured they would just give us a prescription and send us home.  However, Katie's blood work came back showing that her levels had all dropped - and dropped so low that she needed to be hospitalized.   So here we are.
     Katie has had a cough for a few months now, and the doctors knew that.  But her cough has gotten worse in the past week.  They did x-rays today and we were told there is "a thickening."  Although they don't know yet if it is viral or bacterial.  Phenomena??  They have stopped Katie's chemo for now, until she gets better - which is good and bad.  The doctor forgot to order Tylenol for Katie and her fever got up to 103.7 this evening, before we were able to get her the Tylenol.  Frustrating!  Her heart rate has also been very elevated all day.
     Once again today, we have been reminded by those we have seen around us, how we are blessed.  There are so many children who have been sick for years.  Our hearts go out to them and their parents.  We are glad for all the blessings we have in our lives.  We are glad for the time we have to be together as a family. On a funny note, Conner thinks the hospital is come kind of resort - free food, drinks and movies.  He said, "This hospital is very cool!". Yes, well, he isn't the one getting all the pokes!  Katie doesn't think it is so cool!  She is ready to go home.  Me too.

Day 390

      Katie has been sick the past few days.  She came down with a low grade fever Friday evening.  Her fever broke last night, but she is still having tummy troubles, so she wasn't able to go to church today.  (Which was a huge disappointment to her!) 
     I recently commented about Katie getting older and being able to verbalize her feelings more.  This has been so evident during this past month!  Katie has been very nauseous since her last round of treatments.  This caught us by surprise.  Katie has always gotten nauseous after treatments.  However, this time was different in that she has been telling us she feels like she was going to throw-up (daily) over an extended period of time, and she has regularly requested her anti-nausea medicine.  Her chemo hasn't changed, it is the same as before, so we know it isn't that.  I believe she has probably always gotten this nauseous (for this long) after treatments, but now because she is older, she is better able to recognize and express how she is feeling.  She is also able to tell us what medicine tastes "yucky" with different kinds of liquids.  What a great blessing this is!  What a relief it must be for her - to be able to tell us more clearly how she feels and what she needs.  I am so glad for that!  I know it is a relief for me!  It was so hard when she was younger to know (guess) at what she was feeling and what she needed.  When this started a year ago, she didn't even know what nauseous meant - now she does - which isn't that great - but if she is going to be nauseous - which she is - then it is great that she can tell us how she is feeling!
     It is a comforting thought to know that God knows us and our needs.  I know He knows what Katie needs (and needed) even if and when I don't.  It is also comforting to know that He knows what I need (and needed) even if and when I don't.   Elder Bednar said: “The Lord knows who we really are, what we really think, what we really do, and who we really are becoming” (“Things as They Really Are,” CES fireside for young adults, May 3, 2009). 
Neal A. Maxwell said: "God has known you individually...for a long, long time (see D&C 93:23).  He has loved you for a long, long time.  He not only knows the names of all the stars (see Psalm 147:4; Isaiah 40:26); He knows your names and all your heartaches and your joys!  ("Remember How Merciful the Lord Hath Been," Ensign, May 2004, 46).