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).
      

Day 381

      We have so much to celebrate and be thankful for this year.  Scott was working on Thanksgiving day, so we had our Thanksgiving dinner at the fire station with the other fire fighters and their families.  We have done this before and it is always a nice day.  We then spent all day Friday at an Epps' family reunion.  Which was also a very nice day.  Katie and Conner had a lot of fun riding ponies, going on a hay ride, and catching baby chicks.
     The hard part of this week was that Katie was just coming off of her steroids, and she was now getting hit by the chemo she had gotten the previous week.  The chemo takes about 7 - 10 days before the effects really kick in.  The past 3 mornings Katie has woken up crying and saying she felt like she was going to throw up.  She asked for her anti-nausea medication (that was a first!)  and she has been pale and very very shaky.  Her blood sugar seems to drop really low during the night and when she wakes up in the morning she breaks out into a cold sweat, gets sick to her stomach and shakes.  It is always very disconcerting.  It always gets me...scared, agitated, upset...when it happens.  It is hard to see her wake up this way.  We give her juice, the anti-nausea medicine and a banana.  That has seemed to help her (this week).  She was shaking so bad yesterday morning that for a few seconds I thought maybe she was having a seizure or going into convulsions.  It is hard way to start the day.  However, she seems to recover well, and for the most part - at least to others - she seems fine the rest of the day.
     This past week I realized how much Katie has changed, as she is growing up, through the process of all of this.  When this started, Katie was only 2 years old and she could not verbalize how she was feeling, or what was going on with her.  I am glad and grateful that she is now able to tell us when she is nauseous or doesn't feel well.  Katie is now able to tell me if things are too hard, or she is too tired.  Last week Katie told me, "Mommy, my body hurts."  I was so glad she was able to communicate that with me!  That was the day I realized how far she has come during this process, and I realized how very grateful I am that she can now voice her feelings to me more clearly. 
     I also realized there is one thing that hasn't changed during this past year.  Katie still has never said a word to her doctors or nurses.  She just smiles and/or cries and shakes her head, but she has never spoken to them. -- Katie tells me she is "shy."  And she is shy (around others she doesn't know well), but she is also the sweetest girl I know!  - And I am not just saying that as her mother - Katie is the sweetest little thing.  Scott and I often comment to each other about her sweetness.  Even the sound of her voice is sweet - and her laughter too.  Just thinking about her makes me smile.  What a joy she is to be around!
     "Wherefore, be of good cheer, and do not fear, for I the Lord am with you, and will stand by you" (D & C 68:6).

Day 372

       Katie went to the clinic/hospital yesterday for another spinal tap and IV chemo.  We have been doing this regularly for a year now, and  it hasn't gotten any easier. 
     Katie sobbed when she found out where we were going.  And then she cried even more when it was time to get her "poke."  I teared up when they were wheeling Katie & I down the hall just prior putting her asleep for her procedure.  I sit on a bed and hold Katie while they put her to sleep. Once she is under, I quickly slide out of the bed and the nurse ushers us out.  It is hard.  It doesn't seem to get easier.  (Scott says he thinks it has gotten easier, he says Katie and I don't get as upset as we used too - I don't know about that...it doesn't feel easier! - I am always glad to have Scott there with us, that does make it "easier"). 
     As usual, I was holding Katie in my arms as she was waking up from the anesthesia.  Once again she was looking past me when she awoke.  I asked her if there were angels with her and she confirmed there were.  I asked her if she wanted a drink and she declined.  She said she was hungry.  I told her she needed to drink first, and I again offered her a drink, to which she again declined.  She looked past me again.  I asked her if the angles were still there and she shook her head "yes."  I asked her if Papa was there (my dad) and she again shook her head "yes."  (Prior to the procedure, I prayed she would have angels attending her, and asked that my dad be there, if it was possible).  Later, when she was fully awake, she still said there had been angels there, but she couldn't remember details.  I don't know the details, but I do believe she had angels ministering to her.  I am always glad for ministering angels!
     If there was such a thing as cheerleaders for a family, our family has several of them.  Today, I had 3 of those "cheerleaders" cheer us on as we move on into this "next year" of Katie's treatments.  My mom called me tonight to see how we were all doing - she has been a constant support for us and I am so grateful to her.  I also got two cards in the mail today for my nieces, Tebbanie & Natasha.  They have been constant source of support, love and encouragement.  I am deeply grateful to them.  I am going to quote the quotes they sent me today. 
     "When we can no longer change a situation, we are challenged to change ourselves" (Viktor Frankl - and Tebbanie). 
     Natasha's quote came from General Conference 2011.  "I know that your quest...may seem overwhelming at times.  Please do not become discouraged with your progress.  I think back on my experience hiking with my children.  We agreed that every time we stopped to catch our breath, rather than focusing exclusively on how much farther we needed to go, we would immediately turn around and look down the mountain.  We would take in the scenery and say to each other, "Look how far we've come."  Then we would take a deep breath, quickly turn, face uphill, and start climbing again one step at a time"  (Matthew O. Richardson, Oct. 2011).   I am grateful for those perspectives, as we look back on this past year, and see how far we have come!  --Thank you!

Day 365 - One Year!

     One year ago today, we were in the hospital and the doctors confirmed our fears about our sweet baby girl, Katie.  We were told Katie had Leukemia.  We were told her bones were 95% filled with cancer blasts.  We were told she would have to undergo chemo treatments for 2 & 1/2 years - beginning immediately.
     It has been a very long journey for such a little girl.  It wasn't a coincidence she was Supergirl for Halloween.  I chose that costume for her, because I felt it was appropriate for what she has gone through, and (in a way) represents who and what she is.  Katie has been strong and courageous!  She has had to face demons that most other children her age don't ever have to think about - don't even know about.  She has had to endure many fears and go through a lot of pain.  There have been many sleepless and restless nights.  There have been many tears she has shed. And a lot of  "I don't wants" (I don't want a poke, I don't want to take medicine, I don't want to go to the hospital, I don't want to die...)  However, through it all Katie has come shinning through with humor, big smiles, and a positive attitude.  She has had to endure so much at such a tender age, but she has done so with wisdom, love, and sweetness.  She is an amazing girl, who continues to inspire us!
     There are so many people to thank...  So many people who have helped get us through this year.  I am extremely grateful to my sweet husband for his constant strength, love, and support!  I am grateful to Scott's mom for helping us (daily) to get through the most difficult first 9 months.  I am grateful for my mom and the many ways she gave her support (in the ways she is able).  I am grateful for our extended families support (especially Scott's aunts and uncles and cousins).  I am very grateful for those in our family who gave gifts and other support - especially thanks to Craig and Nannette for the clothes for Katie, and Scott & Janna for all they have done.  I am grateful to my siblings for their love and support.  I need to especially thank Brent & Krista, Scott & Janna, and Nannette, who came to Arizona to help us when we were in desperate need of help!  I would like to particularly thank 3 of my nieces, Kirsten, Tebbanie, and Natasha, for there regular and ongoing support (also Jeff & Britney) - it has meant a lot and it has helped a lot!   We are grateful to the members of our ward who have served us.  We are grateful for the anonymous donors last Christmas.  We are thankful to those who contributed to the ipad for Katie - what a blessing that has been this past year!!  We are extremely grateful to everyone who has prayed for us - and continues to pray for us.  I am grateful for friends who have called and supported us.  I am grateful to everyone who has had compassion and concern enough to continue reading Katie's blog!  I am grateful for your comments.  I don't have words enough to express our gratitude to everyone for all that has been done - but we are grateful to all those who have helped us in any way!  We thank you!  We are also grateful for Katie's doctors and the help they have been.
     Katie has undergone many transformations this year... She went from being a vibrant, happy, playful child, to being a child who could no longer walk, talk, or laugh - all she could do was lay in my arms and moan, and now she is back to running, laughing and playing. She has gone from long hair to no hair, to some hair, to no hair again, to now having hair just a little longer than her brother's!  She had a birthday, turning from 2 to 3.  She has had LOTS of ups and downs physically and emotionally.  She has gone from refusing medicine, to now giving the medicine to herself.  She has gone from having to stay home all the time, to now being able to go to church and Joy School.  A year ago Katie got her own bedroom - only to end up sleeping back in her brother's room, because she "missed him" too much (Thank you to my husband and my brother Brent for indulging my ridiculous request to paint Katie's room, at the worst possible time).  Also, in this past year, our 16 year old dog, Cozy, passed away and we now have our new puppy, Peaches.  So, there have been a lot of transformations and transitions!  Presently, Katie is getting new fingernails...Because whatever it was she just went through with the rashes/sores/peeling feet and hands, has now also made her fingernails start to come off and she is having new growth.  Katie has had a lot of strange and frightening things happen to her, but she has faced it all with amazing strength and courage!  It also needs mentioning, that Conner and Nathan have also been through a lot this year, as a result of all this.  They too, have faced this past year with strength and courage! 
     On a personal note, I have learned many things this year...  For Katie's future benefit, I would like to mention what I feel I have learned (at least the things I can think of at this time).  I will list them in the order they came to me, as I pondered on this...  I have learned the need to advocate for my children - and I have learned to be assertive enough to advocate for them.  I have learned a lot about rashes and chicken pox!  I have learned how fragile the human body is - and what a miracle our bodies truly are.  I have learned things can always get worse - but I have also learned that things can always get better.  I have learned it is hard to forgive - but I have also learned it is hard not to forgive.  I have learned how damaging anger can be.  I have learned (again) the importance of controling my thinking.  I have learned patience, long suffering, enduring, faith, hope, and charity.  I have learned to allow others to serve me.  And I have learned to better serve others - and the need to serve.  I have a greater understanding about the need for visiting teachers.  I have learned to appreciate family more.  I have learned some people just don't "get it," - they don't understand - because they can't understand.  I have also learned that although some people may not understand, they want to understand, and do their best to understand, and they serve as they can.  I have learned about the "goodness" of so many people.  I have also learned to accept some people and things as they are.  I have learned the need to look for the good and the positive - and to not focus on the lack or the negative.   I have learned about the tender mercys of the Lord.  I have learned that miracles are real and can happen for me.  I have learned a lot about different types of medications.  I have learned (a little late, but I am learning) the need to take time for myself.  I have learned to take things one day at a time (thanks to my husband).  I have learned what matters and what doesn't matter.  I have learned to eat healthier - and to be healthier.  I have learned (from Katie) to "choose" happiness.  I have learned to focus on the positive.  I have learned hair doesn't matter.  I have learned that beauty truly comes from within.  I have learned to rely on the Lord.  I have learned to plan ahead.  I have learned that I can't plan (or control) everything - or even anything.  I have learned to let it go and to move on.  I have learned to live in fear and live with fear.  I have learned to put hope and faith in front of the fear.  I have learned I can survive hard things.  I have learned to be strong.  I have learned compassion.  I have learned the importance of "lightening up" (even though I have not mastered that yet).  I have learned about (and have felt the power) of ministering angels.  I have learned to cherish the simple things in life.  I have also learned to relish the small moments of joy, that can come in seemingly ordinary ways.  I have learned more about not judging (people, their situations, their behaviors, or their reactions).  I have learned the power of prayer.  I have learned the power of group prayer.  I have learned that comfort and peace are found in the temple.  I have learned (from Scott & my mom) to count my blessings even on the hard days.  I have learned to have a greater love and appreciation for my husband, children, and extended family.  My heart has grown very tender.  I have learned there are so many people who are suffering and in pain.  I have learned we are not alone.  I have learned anew that Heavenly Father loves me/us and is aware of our needs.
     These were lessons hard learned, and I am sad I had to learn them at the expense of Katie.  However, because she did get cancer and had to go through all of this, I did not want her pain to be wasted and be for nothing.  I am learning and growing - we all are!  I feel weak, but yet I feel strong.  I hope and pray we will never have to repeat anything like what we have gone through this year.   Katie still has one year and two months of treatments she still needs to go through.  So this is not over!... But today was a milestone.  We made it through our first year and we are GLAD!
     Thomas S. Monson in talking about peace has said: "Life is a school of experience, a time of probation. We learn as we bear our afflictions and live through our heartaches.

     "It may safely be assumed that no person has ever lived entirely free of suffering and tribulation, nor has there ever been a period in human history that did not have its full share of turmoil, ruin, and misery.

     "At times there appears to be no light at the tunnel’s end, no dawn to break the night’s darkness. We feel surrounded by the pain of broken hearts, the disappointment of shattered dreams, and the despair of vanished hopes. We join in uttering the biblical plea: “Is there no balm in Gilead?”  We feel abandoned, heartbroken, alone.

     "To all who so despair, may I offer the assurance found in the psalm: 'Weeping may endure for a night, but joy cometh in the morning.' 

     "Whenever we are inclined to feel burdened down with the blows of life, let us remember that others have passed the same way, have endured, and then have overcome.

      "From the bed of pain, from the pillow wet with tears, we are lifted heavenward by that divine assurance and precious promise: “I will not fail thee, nor forsake thee.” 

     "Such comfort is priceless as we journey along the pathway of mortality, with its many forks and turnings. Rarely is the assurance communicated by a flashing sign or a loud voice. Rather, the language of the Spirit is gentle, quiet, uplifting to the heart, and soothing to the soul.

     "Lest we question the Lord concerning our troubles, let us remember that the wisdom of God may not be easily understandable by mortals, but the greatest single lesson we can learn is that when God speaks and a man obeys, that man will always be right" ("Peace in Our Savior," Ensign, June 2005, pp.2-7).

     A recent article in the Church News stated: "While times are good, we may feel confident in the Lord's light, favor and blessings.  But what happens when the lights go out and the blessings seem taken away?  Even with a solid testimony, activity in the Church and obedience to commandments, we may feel baffled when it seems the Lord has withdrawn His blessings. 

     "Even though we don't know what God ultimately has in store for us in our lives, we do know some things for certain.  We know He loves us.  We know He has our best interests in mind.  We know He is merciful.  We know He wants us to return to live with Him.  Perhaps the steep hill upon which we have been asked to travel is necessary for our growth or even our salvation.

     "To endure the climb, we trust in the unseen guide that knows us better than we know ourselves.  'Trust in the Lord with all thine heart; and lean not unto thine own understanding' (Proverbs 3:5).

     "Understanding God's will for us has everything to do with our submission to His will.  The ultimate submission to God's will of any being to walk the earth was shown by Jesus Christ.  He lived His life in total compliance to the commandments.  He served others, sacrificed His time and blessed the lives of all He came in contact with.  He touched no unclean thing and showed no interest in the world's enticements.  Of all people, He should have been excused from any pain or torment because of His perfect life.  But when approaching the appointed time of His suffering in the garden, the Savior said, "Father, if thou be willing, remove this cup from me: nevertheless not my will, but thine, be done" (Luke 22:42)." (Church News, Week of November 4, 2012).

     For our benefit, a poet once wrote:

"In golden youth when seems the earth

A summer-land of singing mirth,

When souls are glad and hearts are light,

And not a shadow lurks in sight,

We do not know it, but there lies

Somewhere veiled ’neath evening skies

A garden which we all must see—

The garden of Gethsemane. …

Down shadowy lanes, across strange streams

Bridged over by our broken dreams;

Behind the misty caps of years,

Beyond the great salt fount of tears,

The garden lies. Strive, as you may,

You cannot miss it in your way;

All paths that have been, or shall be

Pass somewhere through Gethsemane" ("Peace in Our Savior," Thomas S. Monson, Ensign, June 2005, pp. 2-7).

     "We must be humble and trust God.  At times we might feel we have no control over our challenges and trials, but what we can control is our obedience to the Lord.  All the answers might not come in this life, but they will come.  President Henry B. Eyring said, "Although His time is not always our time, we can be sure that the Lord keeps His promises.  For any of you who now feel that He is hard to reach, I testify that the day will come that we all will see Him face to face" (October 2012 general conference, "Where is the pavilion?").  (Church News, Week of November 4, 2012).

Day 360 - Halloween Pictures



Superboy & Supergirl!



Katie's hair is now a little bit longer than Conner's!

Super Cute!

Super Sweet!

Super Strong!

Super Happy!

Ward Party

Katie's pretty curls!

Visiting Daddy at work

Getting through it together - Katie truly is a supergirl! 

Day 354

      This month has taken its toll... Especially on me.  Katie seems to rebound the best out of all of us - she is always full of sunshine and smiles!  I was sitting at the kitchen table to other day and Katie looked over at me and said, "Don't be sad mommy." (I didn't realize I was looking sad, but after she pointed it out, I realized she was right).  I told her, "I was just thinking."  To which she gave her typical response, "Just be happy Mommy, today is a happy day!"  What an amazingly little girl she is!
     We had an odd happening this week.  Katie got some "spots" on her legs and then she also broke out into huge half dollar sized hives on her back and legs.  I couldn't believe it!!  I was a bit panicked, because I didn't know if it was starting over again, or if something else was happening.  We took her to see Dr. Michaud (our friend who is a Dermatologist) and also to the PCH Dermatologist - both said this is different than before.  They thought it looked like some type of bug bites - and the hives were an allergic reaction.  Bug bites?... The PCH Derm's opinion was mosquito bites, and the hives were a reaction because her immune system is so shot that her body can't even handle mosquito bites right now.  I don't know what it was or what happened, but it was very disconcerting - especially coming on the heels of all that has just happened.  Anyway, we have been medicating her with Benadryl and putting a steroid cream on the hives and "bites."  It has been an emotional and draining month.  But Katie is happy and we are glad for that!!!
     "Though you sometimes may not be able to see the way, know that your Father in Heaven will never forsake His righteous followers.  He will not leave you comfortless.  He will be at your side, yes, guiding you every step of the way."  (Joseph B. Wirthilin, Ensign, November 2001, 27).
     "The words of the psalmist inspire: 'I will lift up mine eyes unto the hills, from whence cometh my help' (Psalm 121:1).  The principle taught is familiar to experienced hikers.  They know to keep their eyes fixed on a landmark in the distance: a tree, a rock, a hill.  Then, even if their path takes them in directions they did not expect, as long as they keep that landmark in sight, they eventually reach their destination.  Likewise, during our journey of life we can do our best to fix our eyes upon everlasting things.  Elder Joseph B. Wirthlin said, "All too soon, our time is finished... Let us walk in the right direction, taking one step after another.  That is easy enough.  We don't have to be perfect today.  We don't have to be better than someone else.  All we have to do is to be the very best we can" (Ensign, Nov. 2001,27) (Lloyd D. Newell, He Shall Fulfill All of His Promises).

Day 348

      Katie is a little bit stronger.  She went to church yesterday (more on will than strength).  Katie only made it half way through nursery.  I ended up in the Mother's Lounge holding her while she napped (and then she came home and napped again).  Her face has puffed up because of the steroids and her lips are sore because she has been picking them.  But her spots are all gone!  That is a relief and something to be glad about! 
     “The battle for our souls is no less important that the battle fought by David. The enemy is no less formidable, the help of Almighty God no farther away. What will our action be? Like David of old, ‘our cause is just.’ We have been placed upon earth not to fail or fall victim to temptation’s snare, but rather to succeed. Our giant, our Goliath, must be conquered.”

Thomas S. Monson, “Meeting Your Goliath,” New Era, June 2008, 5

Day 346

     The antibiotic is definitely working!  Katie's spots are almost gone.  So, that part is great!  However, Katie has really had a hard time with her treatments this time.  Katie basically stayed in bed for most of the day yesterday.  When she woke up in the morning she didn't want to get out of bed.  When she did get out of bed she said, "Mommy, I can't walk very well.  Why?"  Then later on she told me her legs weren't "working very well" and her legs were "tired."  All day she kept saying she was "so tired."  She took two naps yesterday.  I was so worried about her that I called the clinic in the afternoon.  The nurse said just to watch her.  Katie got a little more energy last night and played for a little bit outside.  At bedtime and this morning, she complained of a tummy ache. 
     Katie seems a little better today - although all she has done so far is lay on the couch - she doesn't want to go play with Conner.  We will see how the rest of the day goes.  Her color is good, and we are glad for that.  She has started "picking" again (thanks to the steroids) - she picks her lips and fingers and bites her nails.  Katie is still asking every morning if today is the day she gets to play with her friends.  Hopefully soon!!
    “My message to you today, my brothers and sisters, is simply this: the Lord is in control. He knows the end from the beginning. He has given us adequate instruction that, if followed, will see us safely through any crisis. His purposes will be fulfilled, and someday we will understand the eternal reasons for all of these events. Therefore, today we must be careful to not overreact, nor should we be caught up in extreme preparations; but what we must do is keep the commandments of God and never lose hope!”

M. Russell Ballard, “The Joy of Hope Fulfilled,” Ensign, Nov. 1992, 31

Day 344

      The antibiotic seems to be working.  Katie does not have any new sores or bumps, and her old sores seems to be healing.  We are so glad!  Hopefully this part of her trouble will be over. 
     Katie had another rough day.  She woke up at 3 a.m. needing to go to the bathroom and she couldn't fall back to sleep until around 5 a.m. (insomnia is a side effect of the steroids).  This round of treatments has hit her pretty hard.  She put herself down for a nap again (but this time I found her before she fell asleep).  All day long she was (literally) dragging herself around and saying she was "tired."  She did conger up enough strength to play with Conner this evening, but she was completely wiped out afterward.  Overall though, I would say that things are going good (considering everything).  Thank you for your prayers!
     "The Lord accompanied Nephi and his extended famiy as He led them to the promised land.  Each day and in every way, Nephi exercised faith in the Lord, trusted His promises, and kept the commandments.   We too are on a journey -- the journey of life.  In this day of darkness and iniquity, we need the light and watchcare of the Lord.  Some wander in the wilderness of sin and hopelessness, some are lost in the desert of despair and confusion.  We need the guidance and reassurance of the Lord.  He has promised if we trust Him and keep His commandments as we journey through life:  "Behold, I will go before you and be your rearward; and I will be in your midst, and you shall not be confounded" (D& C 49:27).  (He Shall Fulfill All of His Promises, Lloyd D. Newell, 349).

Day 343

      You know, there just isn't anything easy about this...  It is as though we exchanged one hard thing for another.  The effects of the chemo treatments have kicked in.  Katie got extremely pale last night (and she is still very pale).  She was lethargic most of the day.  She had some nausea.  At noon, she put herself down for a nap (before lunch) - I couldn't find her, and then I found her - she was in her bed asleep.  She was very emotional today!  And she had an "accident" tonight (steroids make her need to urinate frequently, urgently and sometimes suddenly) - accidents are always very devastating to her.  She has that sick look about her - too pale, dark circles around her eyes - just an overall sick look.  So yes, this is hard, but we will do what we need to do to get her well.  And if that means days like today, then we will do it, in the hopes of having her with us for years and years to come! 
     I do see the silver lining.  Katie is back on her treatments and we are grateful.  We recognize our blessings.  I think any immediate danger she was in has passed (assuming of course, that the antibiotics will take care of her infection).  We are glad for all of that...but today was still another difficult day for Katie, and that makes me sad.  She has really missed being able to go to church and Joy School.  She talks about her friends everyday.  Every morning when she wakes up, she asks if today is the day she will get to play with her friends again.  This has been hard for her, in a lot of ways.  Last week when I put her to bed, I told her I loved her and then I whispered (more to myself than to her), "Please get better."  To which Katie replied, "Mommy, I don't want to die.  I don't want to go to heaven.  I don't want to die."  My heart sank!  I told her, "Katie, you are not going to die!  You are not going to Heaven - not yet, it is not time for you to go!"  (We have not been talking about anything like that around her, or in front of her).  It made me so sad for her, that at 3 years old, she is talking about, and dealing with, issues of life and death - her life and death.      
     I know I am not sounding very upbeat, but I am feeling a sense of relief today, in that Katie was able to resume her treatments.  I am also trying to move past my feelings of frustration with the doctors, etc... I do recognize God's hand in all of this.  I know we are not alone.  And again, I would like to express our sincerest thanks to everyone who prayed and/or fasted for us.  I have come to be a great believer in "group" prayers!  It does make a difference.  I can always feel the difference when there are more people  praying - I always feel a greater sense of strength at those times.  Thank you!  Out of the options we had before us, this IS the better outcome - Katie being back on treatments - it isn't fun, easy, or pleasant, but it is what we needed to have happen.  We feel very grateful!  Tonight when I put Katie to sleep, I lingered longer in her bed.  I felt joy in just being next to her - to have my arms around her, to feel her heartbeat, and to hear her breathe in and out.  It is a blessing I do not take for granted.     
     "The Lord compensates the faithful for every loss.  That which is taken away from those who love the Lord will be added unto them in His own way. (Joseph B. Wirthilin, Ensign, Nov. 2008, 28) 
     "We can have perfect trust and faith in the Lord's plan and promises.  His word is sure; His utterance secure.  At times we may get frustrated or impatient; we may question trials and timetables.  But the Lord is ever patient with us, ever kind and forgiving, ever watchful of our sincere desires and worthy efforts.  If we are faithful and endure to the end, we will be given heaven's greatest gifts and blessings (D & C 14:7); our wrongs will be made right, our heartache healed, our losses compensated.  Speaking of the Lord's promised recompense to the faithful, Elder Joseph B. Wirthlin said:  "While it may not come at the time we desire, the faithfull will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude" (Lloyd D. Newell, "He shall Fulfill All of His Promises", 24).
      

Day 342

       It has been a really long 3 weeks!  We had our appointment today, and thankfully, all the test results were back...
     Katie never had Chicken Pox!  Katie does not have Hand, Foot & Mouth!  According to the test results, Katie does not have any (known) virus!  It is now believed Katie has a bacterial infection and she needs to be on an antibiotic. 
     We definitely believe there has been Divine Intervention in the past couple of days, for us to get where we now are.  Thank you to our family for fasting and praying.  Thank you to our friends for your prayers.  And thank you to Cece and Velika for your comments - which yesterday lead me down the path of researching strep (peeling hands and feet) and Impetigo.  I called the nurse at the clinic yesterday afternoon and told her I did not believe we were dealing with a virus, rather a strep related bacteria and that Katie needed antibiotics instead of antiviral medication (she has been on antiviral meds for the past two weeks).  A huge thank you goes to the Layton's who stopped by last night and who after listening to my story, packed Katie and I in their car, and drove me to Dr. Michaud's house (He is a Dermatologist and he is Sister Layton's brother).  Dr. Michaud very graciously let us into his home - he listened to my story, looked at the pictures I had taken of Katie's sores on September 29th, and he looked at Katie herself.  Dr. Michaud's diagnosis was this is not Chicken Pox, not Hand, Foot & Mouth, but instead this was a bacterial infection and he would have prescribed an oral and topical antibiotic.  (I did not mention to him that was also my conclusion, until after He said that).  Dr. Michaud asked why they hadn't brought in a Pediatric Dermatologist?  Great question! 
     Because Katie has Leukemia we can only go to the doctors at the clinic and PCH for her health care.  I didn't even know they had a Dermatologist at the hospital until yesterday (when they told us they would have a Dermatologist at our appointment today).  By the way, there was no Dermatologist at our appointment today and there was no Infectious Disease Doctor, as promised.  However, we did have the test results!  And the test results supported my conclusions (after three weeks of research), and the test results supported Dr. Michaud's diagnosis. 
     Today, when the doctor told us all the viral tests came back negative, we told him what Dr. Michaud said yesterday... I believe we are now on an antibiotic because of Dr. Michaud's diagnosis!  Otherwise, I believe the doctor we met with today would have just excused what is going on with Katie as an unknown/untreatable virus, and left it at that.  He was telling us to put Neosporin on her sores.  When we told him about Dr. Michaud, then it was if the light came on, and Katie is now on an antibiotic.
     Moving on... Katie's blood work today came back okay (not great, but okay).  Okay enough for her to start back on her treatments.  The only thing we are still holding off on is the spinal tap.  Katie needs to be fully healed before we can do that.  So...Katie is on antibiotics, chemo (intravenous and pills) and steroids.  We pray there will not be any further complications!
     We did not exactly get an apology today...but we were told the doctors and staff did not handle this well... there was too much break down in communication between the staff... too many assumptions that became so called "confirmations" and those "confirmations" went from one doctor to another - without anyone further questioning the original "confirmation" (which in the end turned out to be incorrect)!..  Katie was given the wrong medication, the right tests were not given, and things did not work the way they should work... The clinic/hospital has policies that need to be changed.  We were told this will be reviewed and discussed with all the doctors and staff, and changes will be implemented, so something like this never happens again.
     Today I was able to calmly detail the past 3 weeks for the doctor we met with today (the Head of the Oncology Department).  I expressed our frustrations, anger, fears, and concerns.  Scott asked me afterward how I felt.  My reply, "Frustrated...still frustrated."  We will meet with our Doctor (Dr. Dana) in two weeks for a follow up.
     Thank you again for your prayers!!! We needed answers and we needed to move forward.  Today we got answers and we were able to move forward.  My thought for the day is simply this: We are not alone - prayers are heard and prayers are answered.  Today we are glad for Divine Intervention and for the Layton's who acted on inspiration and for Dr. Michaud's insight.  We are grateful the test results came back so quickly.  We have been blessed!  Hopefully Katie's sores will heal, her levels will remain high, and this will all be behind us! 
    
    

Day 340

       Yesterday when I said Katie is doing "fine."  I guess I need to qualify that... Katie is doing fine in that she is acting normal and she doesn't have a fever.  Really though, Katie is not fine.  
     The bumps keep coming.  The old bumps are scabbing over, but there are new bumps every day, mostly covering her arms and legs.  Her hands and feet continue to peel.  We need this to resolve!  Katie needs to resume her treatments!  The problem is, if we resume treatments while she has this virus, then we risk her levels plummeting and serious complications resulting - in addition to the possibility of her bone marrow being suppressed.  And if we do not resume her treatments we obviously run the risk of her Leukemia relapsing.
     The nurse from the clinic is going to call me tomorrow to see if Katie's bumps are gone - and unless a miracle happens, her bumps will not be gone.  If her bumps are still active and present then we will go to plan B.  I don't know what plan B is!!  I don't think they knew what plan B would be!  I woke up this morning with this thought in my head, "they are going to have us make the decision - to resume Katie's treatments or to wait."  What a horrible decision to have to make!  Either way our daughter is at risk!!! - I don't know what they will actually say or do - and I am not sure what we will say or do.
     Scott and I are praying and fasting today for Divine Intervention and guidance.  We ask for your prayers in Katie's and our behalf!  Katie has been sick with this for 3 weeks (since the night of September 24th).  She has been off of her treatments for almost 2 weeks now.  Katie needs help and we need your prayers!  Please.
     “The Lord has said, ‘Be thou humble; and the Lord thy God shall lead thee by the hand, and give thee answer to thy prayers’ (D&C 112:10).
     "What a tremendous promise is given in this statement.  If we are without conceit and pride and arrogance, if we are humble and obedient, then the Lord will lead us by the hand and answer our prayers.  What greater thing could we ask for?  There is nothing to compare with this."

Gordon B. Hinckley, “A Prophet’s Counsel and Prayer for Youth,” Ensign, Jan. 2001, 10

Day 339

      Yesterday was a sobering day for us, as the full realization of what is happening (and could happen) sunk in.  It was a day that left my husband and I in tears.  Nothing new has developed with Katie - She is doing fine.  It's just the full impact of this finally hit us.  As I said, the Infectious Disease Doctor isn't sure, but he doesn't think this is the Chicken Pox, and never has been.  (Even though we were told it had been confirmed by an Infectious Disease Doctor, and we were told it couldn't possibly be anything else).  Now we are being told it may be a virus that causes a lot of different type of diseases ranging for Hand, Foot & Mouth Disease to Meningitis.  His best guess is this is Hand, Foot & Mouth Disease.  (Hand, Foot & Mouth: rash on bottom of feet, palms of hands and around mouth.  Sore throat, nausea, fever).  Katie never had a rash on the palms of her hands, feet, or around her mouth, so you wouldn't think it was that.  However, as he said, Katie is not your typical child because she has Leukemia and has a compromised immune system, so Katie will not have the typical reaction (to anything) - Hence Katie's rash/sores/blisters all over her body.  The ID doctor thinks what Katie has is linked to this virus because on 9/22 Conner got a fever and on 9/23 he had white sores in the back of his throat (Conner was treated for strep, even though he had tested negative for strep).  On 9/25 Katie woke up with a fever and a sore throat.  I took her to the clinic and she also tested negative for strep, but she was treated for strep as well.  Conner never got a rash, but not every kid does, with Hand, Foot & Mouth.  Katie got one sore in her mouth, in the front that looked like a cancer sore.  Because of all this, the ID doctor's conclusion is that it is most likely not Chicken Pox, but possibly the virus that causes Hand, Foot & Mouth (or a lot of other diseases).   
     We don't know anything for sure, because the proper tests weren't run at the proper time.  More tests are being ran now, but they may not be conclusive.  One test will take 2 weeks to get results back.  So the doctors are just shooting in the dark.  We are currently treating Katie with an anti-viral (the right one this time!) just in case it is Chicken Pox.  If it is the other???  I don't really have an answer for that - as far as I know there isn't a treatment for that - just a wait and see.  Currently Katie has these bumps all over her that are in various stages from new to healing.  They aren't the big red, angry sores, like before.  They are smaller and they have a whiteness to them.  Katie's hands and feet are also peeling (a lot). 
     The sobering part for us, is that Katie has not gotten over this.  Whether this is Chicken Pox or Hand,Foot, Mouth, a normal child would have been well by now.  Is it even either of those?  Or something else?  With a virus, serious complications can arise, at any time.  Complications like Meningitis!  Not to mention that Katie has been off her treatments for so long - and if this "virus" doesn't resolve she will be off her treatments even longer.  Either way, we have to worry about her bone marrow being suppressed.  It is all very frightening!  We feel so helpless...and frustrated!
     I know I "threw a fit" about not going on our trip, but at that time we believed Katie had Chicken Pox, and we believed she was at the end of it.  We were frustrated with the doctors.  This trip was kind of a mile marker for us.  Katie's port is out, it had been almost one year since this had started.  It has been hard for all of us, and this trip was meant to be a "relief" for all of us.  I was so excited to see Conner and Katie's (and Nathan's) excitement at the beach and at Disneyland....It was "a bitter disappointment."  At the time, we sincerely believed she was done and healing from the Chicken Pox.  We thought the doctor was reacting after the fact, because they did not react "to" the fact in the beginning.  --Anyway, none of that matters now.  We are glad we didn't go.  If we had gone, we would have always wondered if she got the new bumps because we pushed her too fast, too soon.  The trip is inconsequential!  Katie is all that matters!  Our sweet little Katie, who out of the blue, told me a few weeks ago, "You don't want me to go to Heaven yet, do you mommy?"  I replied, "No, Katie, I do not want you to go to Heaven yet."  Katie: "Because you would miss me too much, wouldn't you?"  Me: "Yes, Katie, I would miss you too much."  Katie: "But we are all going to go to Heaven someday, aren't we mommy?"  Me: "Yes, Katie, we are all going to go to Heaven some day."  Katie: "Then Jesus will be happy to see me and He will hug me."  Me: "Yes, Katie, He will."  Then she hugged me and went back to playing.  I was left wondering where in the world that came from!
     We are not panicked.  Katie is doing fine.  We think everything will be fine.  Yet...the fear is there, and it is real.  We know our precious, sweet girl is in the hands of God.  We trust in Him and in His will for her.  We are glad we have a knowledge of a loving Heavenly Father.  
     “Faith is not a theological platitude. It is a fact of life. Faith can become the very wellspring of purposeful living. There is no more compelling motivation to worthwhile endeavor than the knowledge that we are children of God, the Creator of the universe, our all-wise Heavenly Father! God expects us to do something with our lives, and he will give us help when help is sought.” Gordon B. Hinckley, "With All Thy Getting Get Understanding," Ensign, Aug. 1988, 2

Day 338

      You would think Katie was the first child with Leukemia to get an infectious disease.  Apparently the "positive confirmation" on the Chicken Pox is now not so positive - meaning we/they are not sure what Katie has.  It is a virus of some sort and it may be Chicken Pox, or it may be something else.  I don't have the energy or desire to go into all the details of all that has gone wrong - or mismanaged - regarding Katie's health care since she developed a fever and rash, 2-3 weeks ago.  I will just say that yesterday we got A LOT of apologies for how things have gone.  I was told there will be a change in policy, procedures, and protocol.  They say they are "embarrassed" about how things have gone.  "Everyone is sorry."  However, like I told the doctor yesterday, I appreciate all that, and it is necessary to change policies/procedures, but that does not make things right for my daughter.  My daughter has been put at risk and this has impacted us on multiple levels.  We are fortunate Katie hasn't had anything more serious develop - but again, that is just a blessing - it not because of what the doctors have done to manage her care. 
     Katie should have been seen by an Infectious Disease Doctor on day one (or any day there after), not two to three weeks into this.  (We didn't even know there was such a thing as an Infectious Doctor that could see Katie - but they did!)  The doctor at the clinic performed the wrong test, and now it may be too late to ever know what Katie has.  Katie was prescribed the wrong medication, because the doctors at the clinic were not "informed" (and they were not informed because they did not bring in the Infectious Disease Doctor).  Katie was needlessly hospitalized, because they were not more proactive.  And on and on.... 
     They have done so many things wrong, yet we are left to "pay" for their mistakes - paying for the hospital stay - paying for (and Katie taking) the wrong medication for a week (and even through an IV at the hospital).  More importantly, we are "paying" for it, by them putting Katie at risk!  Katie will be off of her chemo for a minimum of two weeks before this is all said and done (and we hope and pray it will not be longer)!  If the doctors had done what they should have done, Katie would not have needed to be off of her treatments for so long.  And I was told it is "imperative" we get her back on treatments as soon as possible.  (When Katie is on chemo/steroids, we pray that she will be protected from the negative effects.  Now that Katie is not able to get her treatments, we are praying she will be protected from relapsing).  They have put my daughter at risk by their mismanagement!  It is frightening that Katie's Leukemia treatments are on hold - I never thought I would want chemo or steroids so badly!  The other way they have put Katie at risk is that she still has something going on with her - no one is sure yet what it is.  Katie has some type of virus.  This could cause her immune system and levels to plummet and that could result in her bone marrow being suppressed. 
     So, we are no where near being in the clear here.  Katie is doing fine, she is now on the right preventative medication, but we are monitoring her and waiting to see what happens.  If her spots go away, she will resume treatments on Tuesday.  If her spots don't go away - then we will have to come up with an alternative plan - which no one knows what that would be yet.  Our doctor is still out of the country - so we will be going to see the head of the Oncology department on Tuesday.  We are told to expect many more apologies...and that is all fine and good, but that still can't fix what has happened, and that my daughter was needlessly put at risk... It will however, hopefully, help others in the future so they will not have to go through what we have gone through.  Like I said in the beginning - the way this went, you would think Katie was the first child to go through something like this.  It is hard to understand and comprehend! 
     I am glad Katie has done as well as she has through all of this.  Hopefully we are on the upswing of things, but it could easily still go the other way.  Whatever it is, I am told Katie is contagious, so we are stuck at home.  I don't know how many readers we have left, but for any out there, we could sure use some extra prayers for Katie at this time!

     President Monson, on the subject of patience, has said: “Life is full of difficulties, some minor and others of a more serious nature. There seems to be an unending supply of challenges for one and all. Our problem is that we often expect instantaneous solutions to such challenges, forgetting that frequently the heavenly virtue of patience is required.”

“Patience, a Heavenly Virtue,” Ensign, Sept. 2002, 2

    

Day 336

Katie and I spent today in the ER.  Katie has been admitted to the hospital.  We seem to be starting round two of the Chicken Pox.   This definitely isn't Disneyland!  :)

Day 331 - Part 2

       Well, there is one thing worse than going to Disneyland on steroids..... Not going to Disneyland at all!...  We have had to cancel our trip to California next week.  After all my planning, and scheduling, and anticipation, we are not going - it was all for nothing - except disappointment.  I even had all of our bags packed for our trip (I did all the laundry and packing yesterday - I like to plan ahead and be ready).  We have been planning this trip since summer - we had to cancel our summer vacation because Katie wasn't able to get her port out - so we planned this trip for now.  It was perfect timing - Nathan was going to be out of school and it is his 16th birthday (he loves the beach), Scott already had 4 days off of work this next week, Katie was going to be in between treatments and not on steroids, it was still warm enough in California to go to the beach, I had everything planned down to the last detail, it was going to be great!....  Katie is a few months into Maintenance... everything was supposed to be pretty predictable.  I have saved and put money aside for this trip, which is not easy to do, because of all our medical bills.  We all needed something to look forward to - and for months this has been the "prize" in front of us.  I have talked it up to the kids.  They were so excited about it.  I was so excited about it.  I spent days trying to get the best price, best days, best hotels and making reservations. 
     This whole week, I was told by various people at the clinic, it would be fine for us to go on our trip, and now today we are told we can not go.  It is a bitter disappointment!  Scott and I even considered ignoring the doctor and just going anyway.  But this is our daughter's life - and no trip is worth any risk - it is better to be safe than sorry.  But it is such a let down!  I already had all of our bags packed for goodness sake!!!  We were on the count down.  FRUSTRATING!  DISAPPOINTING!  MADDENING!  Our doctor is still out of town - I wonder if things would have gone differently if she were here - I think they would have!  Scott and I did not agree with everything the doctor said and did today.  It is so ludicrous.  We get there today and they treat us like we have the black plague - fine, I understand that - Chicken Pox is very dangerous to kids with low immune systems.  BUT where was the care and concern for my daughter this whole first week of her having Chicken Pox!? 
     I went into it all with the doctor today and all she could say was, "Yes, I agree... I agree... I agree... Your daughter's care was not managed well." The doctor went on to say we are "fortunate Katie is doing so well, and that nothing more serious resulted."  I agreed with her, but told her that was exactly my point - It is just fortunate, a blessing, that nothing more serious resulted.  I explained to her that now that I have researched Leukemia/Chicken Pox, I realize just how serious this could have been for Katie.  The doctors I have been talking with this past week, should have known the dangers, and they should have been more proactive with Katie's care - and yet they did not provide the care for her they should have to ensure Katie's health and safety through this.  Once again, the only thing the doctor said was, "I can not speak for the other doctors - but I agree, Katie's care has not been managed well".  AGGRAVATING!
     Long story short, the doctor said Katie is still contagious.  Katie did not get her chemo treatment today and she will not start on her steroids.  In fact, we are to stop all of Katie's chemo medication for the next week (a little after the fact I think -  Katie has had Chicken Pox for well over a week now - and NOW they tell us to stop the chemo!?)  I do agree it is a good idea to hold off on the chemo, but shouldn't they have stopped it a week ago when Katie was really sick?  Anyway, it is what it is... So, instead of Katie playing at the beach next Friday (in her cute Minnie Mouse ears hat), she will be here, getting her chemo treatments.  What a bummer!!!  I am worn down and wiped out - we all are. 
     However, in an effort to look for something to be "glad" about, we are so very very grateful for how blessed we have been through this whole thing.  Katie only got a mild case of Chicken Pox and that was a great blessing!  None of her sores got infected and that was another great blessing!  And nothing went seriously wrong, that could have gone wrong.  Katie is alive, she is recovering well, she wasn't hospitalized, and she is fine.  I am glad and grateful for all those blessings.