Katie was diagnosed with Acute Lymphocytic Leukemia on November 8, 2011.

Monday, March 11, 2013

Day 490

     My brother Brent is in town for Spring Break.  He and his is family came over yesterday afternoon for about an hour or two.  Last night, as I was putting Katie to bed, she said, "I don't think my cousins can come over every day...because I need a few days in between to rest."  I assured her we would work it out, and then she said, "Today was really fun!...but I just need time to rest...I just need to rest."  This being said on a day when she had taken two naps (2 hours each), and I was putting her to bed early - and her cousins were only here for an hour or two.  It was heart wrenching!  I assured Katie she could play when she felt like playing and she could rest when she needed to rest - and then she promptly fell asleep.
     Today, is Scott's and my, 7th wedding anniversary.  It has been an eventful seven years!  When we began this journey together, neither of us could have guessed or even imagined the hardships and difficulties ahead - but we made it through it all - together.  We are happy together.  Our love for each other has grown, and I can't imagine my life without him.  He is my best friend.  I love him with all of my heart and soul.  I am grateful to him for being the faithful, good, and strong man he is.  He has been a steady and constant source of strength and love.  We are equally yoked.  We are "two peas in a pod."  I love that we are so much alike, and that we enjoy the same things.  Scott has given me my greatest gifts - my children.  He is a great husband and a great father.  He is a righteous man and he keeps his covenants.  He is a master of all trades and I love that about him.  He is strong and he is steady.  Scott is the love of my life, and I am so glad he found me.  I am grateful that he loves me - and I am grateful for the way he loves me - and for how much he loves me.  (I love you Scott!)
     
    

Sunday, March 10, 2013

Day 489

     Katie went to the clinic on Thursday.  We expected it to be a short day, but it turned into a long one - 6 hours.  Katie's IGG level was low, so she had to get an IGG infusion - and that takes several hours - and costs 10,000 dollars.  So, once again, we are glad for insurance!  Katie also got her chemo that day as well.
     Katie's ANC level was too high, so her doctor told us to increase the dose of chemo pills we give Katie on Fridays.  We upped it from 7 pills to 8 & 1/2 - and it did what I guess it was supposed to do.  It brought her down (literally).  Katie woke up yesterday and today with a tummy ache and feeling nauseous.  She has dark circles under her eyes, and she has been very tired and weak.  She has put herself in bed the last two mornings and has taken an extra nap each day.  It breaks our hearts to see her like this.  She is also on steroids right now as well, and they are doing what they do.... Not fun!
     This afternoon Katie asked (begged) to go on a walk, so I took her.  About halfway around the block, Katie said, "This is further than what I thought it would be."  So, I ended up carrying her the rest of the way.  I didn't mind. =)  She is very sweet.
     Conner went with us to Katie's appointment - because like I said, we weren't expecting to be there very long.  But I am glad Conner came with us.  He was such a great big brother to Katie.  She wanted him to hold her hand when she got her poke with the needle.  Conner hugged her, kissed her, stood by her and held her hand through the whole process.  I was so proud of him - and it was so sweet! 
     Later that same afternoon (late afternoon), I took Conner to our regular Pediatrician.  I had made an appointment for him, because we have had some concerns about him.  I could tell the doctor thought I was being silly or over reactive.  He even asked me (somewhat sarcastically), "So you think he has Leukemia too?"  I told him,  "No, I don't think that, but we do have some concerns.  Conner has been pale and something just doesn't seem to be right - and I haven't been able to shake the feeling."  The doctor said he wouldn't give Conner a full blood test - like I wanted - but he agreed to at least test him for anemia.  I waited there for the results.  The doctor came back in the room (with a changed attitude) and told me, "Conner is anemic, and now we will need to do a full blood test!"  I took Conner to the lab Friday morning for his blood draw (he was very brave).  We hope and pray it is nothing more serious than anemia.  (I have been assured that kids can get anemic, take the iron, and then everything is fine). 
     President Monson said, "I have found that, rather than dwelling on the negative, if we will take a step back and consider the blessings in our lives, including seemingly small, sometimes overlooked blessings, we can find greater happiness."  ("Consider the Blessings," Ensign, November 2012)

Sunday, March 3, 2013

Day 482

      There are lots of ups and downs each week with Katie, depending on her medications.  Sometimes Katie is weak, sometimes she is strong, sometimes her tummy hurts, and sometimes she is nauseous, and other times she feels fine. Sometimes she gets really thirsty at night time...she gets night sweats, cold and clammy...hot...etc... Sometimes she is very pale and shaky in the mornings... We just take each day as it comes.  Lately she has been saying she is having "hard days."  Mostly, I think it is because she still has a yucky nose and cough, and because of it she can't go out much.
     Katie loves to play hide-and-go-seek.  She loves to play tag, jump on the trampoline (which she doesn't really jump because she isn't supposed too, but she runs around the trampoline and plays ring-around-the-rosie).  Katie loves to swing on the swings and slide on the slide.  When her immune system is up, she loves to dig in the dirt (she can't dig in the dirt when her immune system is down because she might get a fungus or mold).  Katie loves to "play" the piano, to dance, and dress up, and play make believe.  She loves playing with her Barbies and her baby dolls.  Katie loves to color, cut, tape, paint, and glue.  She especially loves to make pictures for her friends and to put it in their mailboxes - and to make pictures for Daddy, or Grandma, Conner, Mommy, etc...  Katie loves to cook and clean in her little play kitchen.
      Speaking of her little kitchen set, that brings me to the funny story of the week.  Last Sunday, our little puppy, Peaches, went missing (mid-afternoon).  I searched the house and yard for her, and then I had Scott search the house and yard.  No Peaches.  I asked Katie and Conner if they had seen her...locked her up somewhere...or let her out front.  The answers were all no.  We then had Nathan search the house, as Scott went door to door in our neighborhood asking if anyone had seen our dog.  I spent a couple of hours driving around looking for her.  As it was getting dusk, I came home and made missing puppy posters.  We drove around for another hour putting posters up on every stop sign, on every street, all around us - and looking, looking, looking.  Still no Peaches.  Peaches doesn't bark at all, and she rarely whines, so all we could do was look.  It was now dark.  I tried calling the Pound, Animal Rescue, etc... but none were open.  So we said another prayer (one of many) and then I set about making us a late dinner.  After dinner, I called my mom and told her our dog was missing.  As I was talking with her, I looked down and there Peaches was at my feet!!!  I said, "She is here, she is here!  Where did she come from!?"  I picked her up and she wasn't cold at all, so I knew she hadn't been outside.  I said again, "Where was she?  Where did she come from!?"  Scott, Conner, and Nathan all looked dumbfounded...and then Katie came into the room with a sheepish look on her face.  I asked her if she knew where Peaches had come from.  Katie replied, "Upstairs."  I couldn't believe it!  Scott, Nathan and I had all searched upstairs (and everywhere in the house and yard several times - closets, under beds, behind chairs...everywhere - we thought).  I asked Katie how she found her and she said, "I was putting on my pajamas and Peaches was crying."  I asked Katie to show me where she had found her.  Katie took me up to her bedroom, and pointed to the microwave on her play kitchen set!!!  Peaches had been inside the play microwave!  Apparently, Katie had put Peaches in there and had forgotten! 
     I know some animal lovers will not find any humor in that, but the microwave is about the same size as Peaches' kennel, and she wasn't in there overnight or anything - AND we have had several long talks with Katie about how she can't do things like that to Peaches.... But it is funny...We looked for hours for that dog!  We even had kind neighbors who went out looking for her.  Scott went door to door!  And the next morning, I had to spend another hour driving around, taking down all of the missing puppy posters!  Probably the funniest thing though, was the next day when Conner went around telling people that "We thought our puppy was missing, but she wasn't...she was in the microwave!"  - That raised a few eyebrows!!! =)  We are glad Peaches was found safe and sound.  She has brought much joy, love and laughter into our home and family.  We love our silly Peaches. 
     I liked this quote that my niece, Tebbanie, sent me by Victor Frankl: "What is to give light must endure burning."  Tebbanie said: "Through adversity we are being refined so that someday, someway, our "light" may shine on in a more fantastic way."  (I get it now too Tebb...)  It does take some burning in order for our lights to grow.

Sunday, February 24, 2013

Day 475

     Katie had a low grade fever twice this week (on Monday and Friday).  Both times, we braced ourselves for having to go to the hospital - but we prayed we wouldn't have to.  And both times, we were blessed to have Katie's temperature go back down to normal.  We are glad we did not have to go to the hospital!  Katie has a runny nose and a little cough, so unfortunately I guess we will have to keep her home again this week.  I was hoping to let her go to church and school, but Scott said we still need to wait.  I feel like she is missing out on so much, but I know Scott is right, it isn't worth the risk - we need to keep her home.
     Katie has a very sunny disposition, and her "yellow" personality always shines through.  She has daily taken to asking, "What can we do today that will be really, really, really fun?"  (Which isn't an easy thing to answer when we are "stuck" at home- so we have been playing a lot of make believe!)  Katie is all about fun and games.  She loves to laugh and she can find humor in almost any situation.  She is the comic relief in our home, and she is fun to be around.
     On the front cover of last weeks edition of the Deseret News, there was an article entitled, "What About Me?"  The article talks about how siblings of kids with serious illnesses face their own challenges.  The article states, "Serious illness seldom settles only on one child.  It engulfs and changes brothers and sisters, too.  Experts say if the 'other' children are not handled with care, results can be as devastating as the disease that started it all."  Scott & I have been aware of this from the beginning, and we have gone to great lengths to ensure that Conner and Nathan have had time and attention from us too.  It has been a challenge.  There are times when through necessity Katie takes priority.  However, we have tried to make Nathan and Conner the priority when a need arises.  It has required some juggling - and sacrificing.  Scott and I have been worn thin, at times, just trying to make sure all our kids are okay. 
     Katie's illness has changed us - all of us.  At times, Nathan has said he has felt like burden.  Conner has been very traumatized by everything that has happened in the past year or two - especially in the beginning, when Katie was in the hospital so much, and Scott and I were gone so much.  Conner has come a long way though, but he still doesn't like to let me out of his sight much, and he worries a lot.  To some degree, we have all been shaped and are being reshaped by Katie's cancer.  It is hard to know how all of this has effected Katie.  She was only 2 years old when she was diagnosed.  But there is no doubt Katie has been, and will be, changed by all she is going through.  When I think back to how she was one year ago - her hair had fallen out and she was pumped full of steroids and she was getting weekly chemo treatments - it breaks my heart!  And I pray she will not relapse and have to go through that again.  It hurts to look at pictures of her - with her shaved head and puffy face - and remember how it was when she stopped talking, walking, smiling, and when all she could do was lay in my arms and moan.  But I am so grateful for the miracles and blessings we have had.  I rejoice in how she looks and acts now.  I revel in her laughter and energy. 
     The article in the newspaper also translated disease-specific numbers into something familiar like "kids and classrooms."  The nation's average is 25 children in a classroom.  "The 13,400 new cases of cancer diagnosed in kids this year would fill 536 classrooms that size.  You could fill 54 a year with children who won't survive cancer, often after years of illness."  ...54 classrooms a year of children who won't survive... That is heartbreaking!  And it makes me cry every time I think about it.  However, the article also reminded me of how blessed we are.  The paper had a graph chart from the American Childhood Cancer Organization.  In 1997 only 58% of children with ALL survived 5 years out, compared to an 87%  survival rate in 2001.  All of the childhood cancers have shown an increase in survival rates!  How grateful I am (once again) that Katie was born in 2009 and not in 1999!  We are blessed and we are so grateful that Katie is doing so well!...And Conner & Nathan too.

Sunday, February 17, 2013

Day 468

      It has been a long time since I have been this sick.  I had a fever for 5 days.  The doctor said I had some type of virus that caused the fever, body aches, and made ulcers develop on the back of the throat - plus I had a bad cough - it was not a fun combination - my throat was raw!  Then Scott got sick a few days ago - not as bad as me, but still sick.  Conner continues to have a cough and a runny nose, and Scott & I still have a cough.  So it has been a long week.  However, we feel super blessed that Katie has not come down with anything!  Katie got her chemo on Monday, but she also started her steroids and her IGG level was up - all of which meant her immune system was up.  The timing couldn't have been better and we are glad
     Katie's chemo is starting to kick in now....so we are hoping our good fortune will hold out and that she will not get this.  My biggest worry was her needing to go to the hospital when I, Scott and Conner were all sick!  I am so grateful that did not happen!  The strangest thing about all of this, is that our family has never tried so hard to be healthy!  We got flu shots, we are eating healthier than we ever have, washing hands, hand sanitizer, etc, etc... But it has just been one illness after another, after another!  We are looking forward to spring!
      "The Lord is in all of our lives. He loves us. He wants to bless us. He wants us to seek His help. As He guides us and directs us and as He hears and answers our prayers, we will find the happiness here and now that He desires for us." (Thomas S. Monson, Consider the Blessings," Ensign, November 2012).

Sunday, February 10, 2013

Day 461

      We seem to have a revolving door of sickness around here.  Conner has been super sick the past couple of days.  He has had the croup and a fever.  His tonsils and epiglottis were so swollen that he has really been struggling to breathe.  At one point yesterday, he jumped up off the couch, his eyes wide as saucers and his mouth open - nothing was coming out - or going in.  I frantically asked him if he could breathe, his eyes got larger and he opened his mouth wide again - and again nothing.  He started to panic.  I started to panic.  Thankfully Scott was home - and he didn't panic!  It was a very frightening experience.  After that, Scott took him to Phoenix Children's Urgent Care.  The doctor gave him an Epinephrine SVN that immediately reduced the inflammation, and an oral steroid that will last the next few days.  I am so glad there are medications like that available!  (During those brief moments when Conner couldn't breathe, I envisioned having to do a tracheotomy on him!)  Conner is doing much better.  He still has the croupy cough, but he is able to breathe freely and his fever is gone.
      I, on the other hand, am sick.  I now have the cough and fever.  I just finished 10 days of antibiotics for another UTI - and now this....  We are just praying Katie doesn't get it.  Scott has feverishly cleaned and disinfected our house, trying to keep the germs at bay.  Katie has an appointment tomorrow afternoon for her monthly chemo treatment.  She will also start her steroids and that should help boost her immune level - I hope.  We will just keep praying Katie won't get sick - we do not want her to end up in the hospital again!  We are looking forward to the flu season ending and better days ahead.
     "Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead. Some blessings come soon, some come late, and some don’t come until heaven. But for those who embrace the gospel of Jesus Christ, they come. It will be all right in the end. Trust God and believe in good things to come."  (Jeffrey R. Holland, "An High Priest of Good Things to Come", Ensign, November 1999)

Sunday, February 3, 2013

Day 454

     We have continued to keep Katie at home - which hasn't been much fun for Katie or me... But Katie's cough seems to have actually gotten worse this week, so...we are staying home.  She has had no fevers though - for which we are grateful and glad!
     As a mother, every once in awhile, I have a moment that touches me to the core.  I had such a moment a couple of days ago, Katie was half running, half skipping - more like flitting - down the sidewalk, with pure joy and radiance shinning from her whole being... I said to Scott, "Look at her!"  We both laughed and smiled at her.  It was a moment that touched me to my core.  She looked so happy, so full of joy and life.  She was radiant!  It was a moment to always remember and treasure.
     "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?"
(Dieter F. Uchtdorf, "Of Regrets and Resolutions", Ensign, October 2012)