Day 21

     I have dreaded Scott going back to work.  It has been so helpful and comforting to have him home!  However, life and duty calls, so Scott went back to work today.  Little did we know, he would be back at the hospital tonight, with our 15 year old, Nathan.  Nathan is on the wrestling team at the high school and he came home from practice a couple of days ago with a mat burn on his hand.  When he came home yesterday, his hand was swollen.  Scott took him to Twilight Pediatrics and got topical and oral antibiotics for him.  This evening when Nathan came home, his hand was worse, so Scott took him to the ER.  We are still awaiting test results, but they are saying possible staff or mersa.  Nathan has been admitted and they are staying the night.  Isn't that crazy!?
     That would pretty much sum up 2011 for us - CRAZY!...I know the year isn't over yet, I guess I am just hoping the tide will somehow shift, with the New Year.  We are feeling pretty worn down.  When this whole cancer ordeal started with Katie, our "gas tanks" weren't exactly full......shoot, who am I kidding?  We were running on fumes!  (I will save those of you who are unaware, any of the details, but suffice it to say, if someone had made a movie of the year we had, you would say it was to over the top and so far fetched and unrealistic that it was not believable - except that this isn't a movie, it is our life and it is all very much real).  In light of it all though, I must say that Katie's cancer, and facing the possibility of loosing our sweet daughter, has put everything into focus and shifts things back into "what matters most".  Us.  Our faith.  Our family.  Although that doesn't negate any of what we have gone through, (because it has all been unbelievable hard and painful), but it has narrowed our range of focus.  Our other troubles and challenges haven't let up, but there are things in life you can control and things you can't control.  We no longer have the time or energy to focus on anything else but the things we can control - which isn't much - so we have had to turn everything over to the Lord and put our lives completely in His hands.
     Romans 8:35 - 39  "Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword (or Leukemia, or craziness, or mersa or staff)?
 "...Nay, in all these things we are more than conquerors through him that loved us. 
"For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come,
"Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God which is in Christ Jesus our Lord."
     We are firm in our faith.  We pray daily for our strength and faith to be renewed.  Our family is a miracle in progress.  We are making it through, even though we started this with our "tanks" on empty.  We have been blessed and strengthened!  We are grateful and acknowledge the Lord's hand in our life.  Thank you for your prayers in our behalf.  Our Katie went through another round of chemo today.  What can I say about that?...It's hard.  Today I am glad for Christmas lights, music and movies - all have added joy and delight for Katie and Conner - and when they are delighted, so are we! 
    

Day 20

Steroids...AAUGH!!!

Day 19

     We switched to Phoenix children's hospital and doctors today.  We feel that is what is in Katie's best interest.  We are making it through this.  After today, we only have nine more days of daily steroids (for this stage of the treatment anyway).  The steroids have been hard on her (and us)!  During our appointment today, Katie received more intravenous fluids, and she was so much better this afternoon.  We actually got a couple of half smiles out of her.  She walked a tiny bit and she talked.  We went and saw the farm animals again, she really enjoys feeding the animals.  (Did you know cows eat apples and carrots?  That was a surprise to me - I knew horses did, but I didn't know cows did - Scott says cows will eat anything).  Katie loves to see the animals and Conner loves to collect the eggs.
     I am grateful for good neighbors showing and expressing their concern for our family.  It helps to know we are not alone!  Today I am glad my sister is better, and for Deuteronomy 31:6  "Be strong and of a good courage, fear not, nor be afraid...for the Lord thy God, he it is that doth go with thee, he will not fail thee, nor forsake thee."  I know if we seek the Grace of God, He will come to our aid and the aid of those we love.  I know He will not fail or forsake those who turn to Him, trust Him and obey Him.  How grateful I am for this knowledge.  Thank you for your prayers in our behalf! 

Day 18

     We are home from the hospital...and my sister is now at a hotel, because she has the stomache flu.  We seem to be going in circles with that.  Katie's white blood cell counts were up last night (from a count of 80 on Wednesday to 270 Saturday night - 2000 is what it should be).  Those numbers going up means she is starting to produce her own blood supply and that is a good sign.  Katie did need a blood transfusion last night though, as her red blood count was low.  Katie has had diareha, we think from the stomach flu (again!), and was dehydrated.  The doctor wanted to keep her through the night, to transfuse her and giver her some fluids. 
      As of today, we have exactly two years, one month and one week of treatments left.  That is overwhelming!  I know I am supposed to be taking it one day at a time...but still, she has already been through so much, I can't believe we still have that far to go!  Scott and I are making the very difficult decison tonight, as to which doctors and hospital to use, for the remainder of her treatments - we didn't exactly have time to go "shopping" before, so we have researched and are now needing to make a decision.
     What once was normal, no longer is.  Not even dinner time - I have no idea what anyone ate, or when anyone ate dinner tonight - which is not normal for us!  I don't know how I am going keep everything and everyone going!  It makes me tired (more tired) just trying to think about it.  Thank goodness for Scott, because of him, I know we will be okay.  Today I am glad for my mom.  Eventhough she physically isn't able to be here, it was so good to be able to talk to her tonight -just to be able to talk to her...and thank goodness for prayer, it is so good just to be able to talk to Him, our Father in Heaven!  Thanks for remembering our Katie girl in your prayers too! 

Day 17

     Well......we are back in the hospital.  The last few days have been rough for Katie.  We called the doctor with our concerns and he said to bring her to the ER.  They ran some tests and Katie needs another blood transfusion and fluids.  So we are here at least for the night  - hopefully not longer, but they are running more tests, so we will see.
     I have come to realize that when a child is sick with cancer, everyone in the family suffers in different ways. I have seen the effects of this already...Conner is having nightmares and is constantly saying, "I scared".  Nathan is trying to put up a strong front, but it is clear he is hurting.  We now have a few less dishes in the house thanks to me (long story) and Scott says he "doesn't know what he is".  And Zach (our 19 year old)...we read your comment tonight and it brought us to tears- we are sorry you are so far away, but your love and prayers are not useless!  We have all been effected by this.  It has been life changing - andwe are only 3 weeks into this!
     We are greatful for everyone's continued support and prayers!  Today we are glad that my sister was here to pick up the slack.  Thank you Nannette for taking the time off of work, and away from your family to come and help ours!  (You have done for me what our mother would have done, if she could).  I am overcome and so touched by your love and support.  Thank you!!!

Day 16

     We went out for a walk tonight and a neighbor asked how things are going and I could tell Scott was about to say, "fine, good, or great", but I spoke before he did... I said, "hard...things are hard".  Scott gave me a kind of a sideways look, and I told him I wasn't going to pretend.  It is hard.  The past couple of days have been especially hard.  Katie has no spunk left in her.  She just lies in my arms and softly moans and whimpers.  It breaks our hearts to see her like this!!!  She hasn't walked or played since Tuesday.  Only a few smiles, no laughter...just moaning, sleeping or screaming and crying.  It is one of the most painful things I have ever had to go through.  It is so hard to listen to her, and to watch your once vibrant child lay so listless. 
      The steroids have caused Katie to develop some OCD type of behaviors.  She bites and picks at her fingernails and her lips until they bleed.  She has a hard time sleeping through the night.  It is like having a newborn - she needs changed, fed and held.  During the day she needs held so much it is hard for me to do much else (cooking, cleaning, laundry, grocery shoping) - which is okay for now, I am just not sure how I will manage when my sister leaves and Scott goes back to work.  These are all hard things, but in time, I am sure we will adjust the the new routine.
     Scott came and sat next to me and read what I was writing.  He doesn't think I should post this.  He said people will stop reading it, because it is too hard.  I told him I am not going to candy coat it.  I will be positive when I can.  I will help Katie find joy in each day.  I will be strong.  I will be a good mom.  But I will not pretend.  I am not writing this to keep anyone entertained or amused.  My main objective was to help people feel a connection with Katie so they would remember to pray for her.  This is not my place to vent and I won't, but this is how Katie is - this is how things are.  Maybe I should start with a disclaimer on the hard days: "Viewer discretion advised...this post is less than positive".  Then you the reader can choose to read that particular days post or not, but I will write it as it is, and as it comes. 
     Today I am glad my husband took Katie and Conner to see the horses and chickens - that brought a smile and some joy for all of us. 

Day 15

     Happy Thanksgiving!  We have so much to be thankful for.  Although things could be better, they could also be so much worse.  We met with a different doctor yesterday from PCH and he told us that if Katie had to have cancer, she at least had the best cancer possible - she is the right age, with the right type of chromosomes and she had a low count of white blood cells instead of a high count when we brought her to the hospital - all of which is good for her prognosis and outcome.  We feel hopeful that Katie will make it through this, and the doctors seem confident of that.  We are thankful to live in the day and age we now live, so that Katie can get the treatments she needs.  The doctor told me yesterday, if this were twenty years ago, Katie would not live through this.  There has been a lot of progress made in treating Leukemia in just the past few years.  So, how blessed we are!  I am thankful my husband has been able to stay home to help with everything.  I am thankful my sister flew in this afternoon to help us.  I am thankful for family and friends who have all lent support.  We are especially thankful for all your prayers, because this is all in the Lords hands anyway.  Thank you for sending Katie prayers to heaven, I know they are heard and answered.  Today I am glad for sweet, tender, long hugs from my children.

Day 14

     Anndrea went to bed and asked me to write a little about today.   The steroids are now in full effect (I hope!)  Katie woke several times last night stating, and I quote, "I'm hungry...I want breakfast".   We spent almost all day with doctors.  Katie was administered chemo today along with an IV antibiotic at the out patient clinic (3 1/2 hours and then all afternoon with another doctor).   Explosive diarrhea followed Katie's treatments, and Anndrea shared (two changes of clothes) in that experience with Katie today.  Katie has very rapid changing moods, even for a 2 year old, she goes from a screaming banshee, to the sweet little girl we love, and back again, in a mattter of minutes.   Also, Katie's white cell count is extremely low - 2000 is a normal count, and below 500 is when they say she should stay home, because her risk of infection or getting sick is high.   Katie was at 130 on Monday and was at 80 today (again, a normal count would be 2000!)  We can not risk an infection or getting sick with numbers like that, even with family.  So, we will be celebrating our Thanksgiving at home. 
         We are so very grateful for the love and support we have felt from everyone!  We can not thank you enough!!   Please keep Katie in your prayers, we know that has made the biggest difference.

Day 13

     We posted some new pictures today, so don't miss those!  Our Katie has always been good natured and sweet. She takes things in stride, and she is as tough as a boot!  She seems to be taking cancer in her usual Katie style.  She has done her best to be a good girl and to be happy, even though she is on steroids.  The doctors told us steroids would cause her to be extremely moody and "impossible".  A mother in the hospital described it as "roid rage".  We have experienced some of this...out of no where and for no apparent reason, Katie will start screaming or get really fussy, and eventhough she is two, this is not typical for her.  I know this has been hard on her, because I can tell she wants to be happy and good - So, we just wait it out and then hug and hold her.  The steroids also make her very hungry.  Katie wakes up saying she wants to eat breakfast and then all day long she says, "I'm hungry".  Katie has always had a sweet tooth (she takes after her Grandma Nygren), but interestingly, since the chemo and steroids have started, she doesn't want to eat anything sweet.  It is strange!  That's not all bad, but she doesn't even want to eat fruit - nothing sweet.  Katie craves eggs, noodles, cheese and crackers.  It is hard to get her to eat anything else.  Whereas before, she would eat pretty much anything.  The steroids will cause her face to get puffy(er):) She allready has some cheeks!  But it will not be a permanant Puffy condition.
     Katie is on 3 different types of chemo.  One of the chemo's effects her ability to walk.  Katie can walk, but she slaps her feet and waddles like a young toddler.  This was expected and it could go away with time, but if not, she will need physical therapy.  Just another fun side effect of chemo.  Katie goes in tomorrow for another dose of chemo and some antibiotics.  Her hair has thinned out, but after this, it will really start to come out - so she will be getting a haircut soon.  Since we have been home from the hospital, Katie has been very lethargic, but she still manages to play and have fun.  She now asks for help walking up and down the stairs.  She can't climb up onto the couch anymore and I will find her laying face down on the floor from time to time (because she is too tired to do anything else).  Katie loves to have mommy hold her (and mommy loves to hold Katie - it is just hard for mommy to get anything else done!)  Conner is also having mommy issues.  He wants mommy to hold him all the time and carry him up and down the stairs too.  Conner has been having nightmares.  Katie and Conner (and Scott and I) have not been sleeping well.  I guess we are all "scared".
     Katie's immune system is very low right now.  There is a number (I can't remember what it is called) but if it is lower than 500, she isn't supposed to go anywhere or be around people - yesterday, Katie's number was 130 - so we have to be very careful with her!  Overall, Katie is still her sweet self, just tired and hurting (and probably frustrated and confused). She is so brave and strong!  Katie still brings light and joy into our home.  She loves to laugh.  Scott and I are doing our best to take care of each other and all our kids.  (This has also been hard on our 15 year old, Nathan, but we are muddling through together).  Scott has been a rock.  I have my moments - strong, weak, happy, sad, silly, mad...and today a few moments of totally loosing it - Scott just took that in stride too.  Today I am glad for an easy going husband who can make me laugh even when I am crying - and for a daughter who takes after her father!

Pictures - Home From the Hospital

Going home

Happy to be home with her toys!

Happy to be back in her own bed

Thank you Gunnell's for the baseball set!

Katie, Conner, Nathan

So good to be home!

Always hungry

Opening presents for Conner's birthday

Katie's fake smile

Candels!

Grumpy

Day 12

     Our life got whole lot easier today - well, we made our life a whole lot easier today.   We had the doctors find her medications in a tablet form.  We had asked twice in the hospital for that and had been told it wasn't possible or available.  However, after the terrible experiences we have had the last couple of days forcing Katie to take her oral (liquid) medications, (and thanks to advice from Suzie) we told them we wanted tablets if available.  Turns out, only one medication wasn't available in tablet form, but they can give it to her once a month intravenously instead of us having to give it to her orally.  The other medications we now have in tablet form and we crushed them and hid them in her food (shhh! Don't tell her!!) and to our great joy, it worked!!!  So, she took all her meds today, without so much as a whimper - whereas yesterday, it took both of us to hold her down and force her mouth open, and pour it down her throat, while she screamed and cried and threw up because she was so upset.  (It was traumatizing for all of us -twice daily!)  Today was sooo much better!  Hurray for small victories! 
     Every day is a roller coaster of goods and bads.  We are physically and emotionally exhausted by the end of the day.  We spent 2 & 1/2 hours at the clinic today.  We still aren't into the swing of things yet.  I can't seem to get caught up, or get done what needs done...but today we are glad for Divine intervention.  We feel that we are being helped at the right time by the right people.  It is through your acts of kindness that we are feeling our Heavenly Father's love.

Day 11

     We finally had a birthday party for Conner this evening, a small one just the 5 of us.  Katie opened presents too.  We are glad for birthdays and for the look in both Conner and Katie's eyes when they blow out birthday candles.  Katie wanted to blow them out too, so we re-lit the candles.  We are glad for the little things that bring joy.  We are determined to create moments of joy daily for Katie (and all of our family).

Day 10

     Well, so much for Scott's strong immune system.  And, Really?  Only Day 10?  It seems so much longer!  If you are looking for a positive "post", you're going to need to look at another day, because this won't be it.  Yesterday my daughter received 2 different chemo treatments.  I can't even begin to describe what it feels like to watch your 2 year old daughter wake up from anesthesia for the 3rd time in a week.  I can't even begin to describe how painful it is, for Scott and I to try and hold her down to give her all her oral medications, while she screams, "no mommy no!"  I can't describe how painful it is to see her looking at me, begging me to stop...questioning why I am doing this to her.  I can't even begin to describe what it feels like to hold your 2 year old daughter in your arms while a nurse injects "poison" into her body - chemo is poison, it doesn't differentiate between good cells and bad cells, it just kills cells - and every time they give her chemo, it takes all the will power I posses not to reach over and tell them to "Stop! Just stop it! No more!"  It is too much!  I know the medications are a means to an end, and I know if it all works out, it will be worth it in the end -- but it goes against every instinct I have as a mother to just sit there and allow them to put all these medications into her tiny little body.  I can already see the effects of what this is doing to her.  Her hair is beginning to fall out, her eyes look "sick" and her sweet smile isn't as bright or as often.  It breaks my heart!!  I miss her sweet baby smell.  I don't know how to describe that either...she smells like medicine now.  I miss her sweet baby breath.  I hate what all of this will do to her...my poor sweet baby girl.
     I spoke to another mother today who had a 2 year old daughter that was diagnosed with the same type of Leukemia as Katie, several years ago.  After 18 months of treatment her daughter went into remission and required a bone marrow transplant.  Then because her immune system was so low she got a rare fungus and she lost an eye and her palette.  I know every case is different.  But she did give me good advise, "expect the worst and pray for the best".  The medication smell I mentioned above, she confirmed, she said the medication smell will come from every pore of her body.  She also said that Katie's taste buds will change, and everything will taste like metal.  That makes me sad for her.  Our journey ahead with Katie is unknown, but it is going to be a long, hard and painful one - at best.  I am afraid to hope for the best and terrified to expect the worst. 
     Today was long...sorry for the down side...we called the doctor awhile ago and our options for the day were to take her back to the hospital and admit her, or wait until Monday and see what could be done.  Guess we are going to try and see the weekend through.  Today I am glad my husband planted flowers while Katie was in the hospital, she has mentioned them 3 times already, "flowers, for me?"  So sweet.  Thank you to all my family and our friends for the gifts and packages for Conner and Katie!  Thank you!  And thank you for your "comments" we do read them and appreciate them.   Please continue to pray for Katie.

Day 9

       Anndrea asked me to write the blog tonight.  Katie had another allergic reaction last night (1AM), She was pretreated with medications, so it was not nearly as severe as her first reaction.  It was still a pretty rough night for her.  I think it's almost as hard on Anndrea not being with Katie when something happens, as Katie going through it.   I am so very grateful for Anndrea and the mother she is to all of our children.  I wish I could take away some of the heartache she is feeling over all of this.  I am so very grateful for all of your prayers and the strength they have brought to our family.  The prayers have been felt and have made this bearable in a way for the both of us, Thank You!
      Katie had another Lumbar puncture today, CSF sample was taken, and samples were taken from her iliac crest, of bone and bone marrow.  We are glad for good doctors.  Katie has no detectable cancer in her blood, or in her spine!! That is great news!  The doctor said that the cancer could go there at any time, but it is great that we caught it this early.  We also learned that Katie is responding to the chemo quickly. We were told by her doctor 90% of her bones have been cleared out by the chemo treatment.  
     We have her home tonight, that feels so good. Thanks to Karlene Jorgenson, Joyce Green and anyone else that helped to disinfect our house before we brought Katie home today!  Thanks also to Anndrea's brother, Brent, for his help this week, he was definately the right person at the right time.
 . 

Day 8

Today was an okay day for Katie, but such a frustrating day for me!  Conner, Nathan and I got sick with the stomach flu last night/this morning.  Scott and I have been taking turns sleeping at the hospital with Katie.  Scott had to come relieve me of "duty" early this morning because I was sick (after he spent the night taking care of Conner - he vomited twice).  It was so hard and painful for me to not be able to be with Katie today!  However, I am glad my husband has a strong immune system (knock on wood) and that he is still well and was able to be with Katie all day and will stay the night. 

We did get encouraging news tonight.  The doctor said Katie's chromosome patterns came back and they are very favorable.  He said that should improve her cure rate to 80-85%.  It will be a long and difficult journey, but we are hopeful! 

Katie's procedures start at 8:00 a.m. which will include more chemo in her spine.  If all goes well, the doctor said they are planning on releasing her tomorrow afternoon.  It would be nice to all be home together again!  We will have to go to the clinic next week for blood, platelets and more chemo.  Thank you to Jammie Kennedy for donating blood and platelets today for Katie!

Day 7

The doctor said they are planning on doing Katie's procedures (spinal tap, bone marrow scrape, etc...) on Friday morning.  We are dreading that!  Hopefully though, we will be able to go home after that.  The hospital is getting "old" for her and us.  Plus it is Conner's birthday on Friday, he will be turning 4 years old.

My sweet husband spent yesterday and today trying to get Katie's room ready for her at home.  We are moving things around, so she can have her own room.  I think that will be helpful and necessary.  My husband (and his dad) were kind enough to paint her room, "lavender whisper", yesterday.  Today my brother, Brent, and my husband were gracious enough to not scoff at my "to do lists".  It will be nice for Katie to have a pretty room to come home to - I am so grateful to my family for helping make that happen for her!  Today I am glad for family support - from Scott's family, my family & our ward family.  So many people have offered to help and have helped. 

I was so blessed to marry Scott.  He is such a good man and he is so good to me.  He is an amazing husband and Father.  I was given such a gift, in my "old age" to have my two sweet babies.  I was 40 when I had Conner and almost 42 when Katie was born.  I have loved every minute of being their mother.  I have found such joy in having a family of my own.  Words can not begin to express my love for them.  I have never taken it for granted - I knew I was blessed to have them (all of them).  I had so many plans - and this has thrown a wrench into all of them ...but none of that matters now.  I know we are a forever family.  I will continue to enjoy my time with them whichever way and however long our Father in Heaven allows.  We are blessed.

Day 6

Ironically, I used the following quotes in a lesson I taught at church, just over a week ago, on the very day we took our Katie to the hospital.  I had no idea when I prepared this lesson or taught that day, what trials were lying just ahead of us...trials that would change our family's life forever.

Quoting President Hinckley: “We know not what lies ahead of us.  We know not what the coming days will bring.  We live in a world of uncertainty.  For some, there will be great accomplishment.  For others, disappointment.  For some, much of rejoicing and gladness, good health and gracious living.  For others, perhaps sickness and a measure of sorrow.  We do not know, but one thing we do know.  Like the polar star in the heavens, regardless of what the future holds there stands the Redeemer of the world, the Son of God, certain and sure as the anchor of our immortal lives.  He is the rock of our salvation, our strength, our comfort, the very focus of our faith.”

"During Celestial pre-earth life, we knew that earth life would include trials, tribulations and adversities.  We were confident in ourselves, our Heavenly Father’s plan and in our Redeemer.  We looked beyond mortality – “our eyes were not so much centered upon the sorrows and trouble of life as upon the grandness of that which lies beyond.”

I do have a testimony of this.  I know I am a daughter of a loving Heavenly Father.  I know the Savior is my brother and that He can comfort me.  I know our lives have purpose and meaning.  I know that God is just and merciful.  I know if we are true and faithful, all things will be made right - maybe not in this life, but in the next.  I trust in His will.  My faith is strong, but my mind and body are weak.  Earth life has turned out to be a little harder than perhaps I had expected, and my "confidence" in myself isn't what it once may have been!  

This has been the longest and hardest week of my life!  My heart breaks for Katie and all she will have to endure.  A nurse told me last week, that in her experience, it usually took parents about two weeks before this all actually sunk in...well, it is starting to sink in.

I was so hopeful this morning as the doctor came in and said his goal was to release Katie by this weekend.  Katie had a pretty good day - no more vomiting and she was walking better and playing - so I thought, "great!  She will get the rest of the week to recover and then they will release her."  However, I got the wind sucked out of my sail tonight when the doctor came back in and explained further that Katie would be having more procedures done on Thursday orFriday.  She will need another bone marrow scrape, another spinal tap and more chemo - along with probably more platelets and a blood transfusion, along with replacing the needle in her port...and IF all that went well, then they are going to send her home.  Only for her to go back to the clinic next Wednesday for more chemo.  My heart sank!  Katie is still bruised and scabbed on both sides of her back end from the last bone marrow scrape....it is just so much so soon!!  My poor sweet baby girl.  I know she is strong, and I know we will get through this. One day at a time. 

Today I am glad Katie is still waking up each morning with a smile on her face.  She is so very sweet! Thank your for your love and support!  Please keep praying for Katie!!

Infections & Visitors

We appreciate all the caring people who are concerned about us and our Katie.  We are so grateful to all of you! At this time in Katie's recovery however, it is critical that she not have many visitors.  Children with cancer are at higher risk for getting infections because of the cancer and cancer treatment.  Chemotherapy will lower Katie's white blood cells - the infections fighting cells of the body - and this makes her more suscesptible to getting infections, which would be very dangerous for her.  It would also be extremely dangerous for Katie to be around anyone exposed to Chicken Pox.  Katie should also not be exposed or have any contact with a child who has had oral polio vaccine.  If exposed, a child on chemotherapy may develop symptoms of polio.  So again, we appreciate your concern and would love to hear from you - by blog, letters or phone calls.  We appreciate your understanding on this and appreciate all the support we have been given!

Day 5 (11/14/11)

Okay...today was hard.  Katie was vomiting today (the no warning type of vomiting) =)  We weren't expecting that at this point.  However, she did manage to go for a small walk outside on the grass with mommy...and for the first time in 6 days Katie was able to go #2.  I never thought someone going poop could be such a cause for celebration!  Today we are glad for a sister-in-law and cousin (Krista & Ann) who cleaned our house and for a visiting teacher (Jeanette) who let Conner come and play.  We are also so very grateful to Scott's parents for all the (constant and continuous) help they have given us! Thank you again for all of your prayers, cards and support- we truly have felt strengthened!  Please keep praying for our Katie girl.

Day 4 (11/13/11)

Today was a long day...Katie got 2 chemo shots in both legs simultaneously (while her dad and nurses held her down).  Hard things.  She is refusing to take any of her oral medications - she spits it in our eyes - it is an ongoing struggle...we have tried everything from chocolate syrup to bribery, nothing has worked.  Other than that, she is still "Katie", cheerful and sweet.   Today we are glad for cousins (Greg & Sarah) who brought a Barrel of Monkeys and gave us a fun idea...we got lots of laughs out of it.  Please remember to pray for Katie!

More Hospital Pictures

Hospital Pictures

Our Katie and Day 1 - 3

Our sweet precious Katie has been such a blessing in our lives!  She was born on June 3, 2009.  Katie's full name is Katelynn Joy Epps.  She was named after her Aunt Lynn and her Grandmother Joy - both women are strong, righteous, and hard working women.  Katie has lived up to her name.  Katie truly has been a "joy" in our family's life.  All the rest of us are on the serious side, but our Katie is full of sunshine and  mischief.  She has brought so much laughter and happiness into our home.  Katie always has a smile on her face...well, with her family anyway.  If she doesn't know you, she is a little sphinx - she will not smile, talk, shake hands or give high fives, and she will stare people down.  With us however, she is a chatterbox and she acts like everything is a game.  Everything is funny to Katie, she likes to tease.  She has a very "yellow" personality and she has a special way of making us all laugh.  She truly is our sunshine girl.

On Sunday night, 11/06/11, we brought Katie to the hospital because she was extremely pale and not feeling well, she woke up crying 3 times that night.  Katie is not a complainer, so we knew something was wrong.  While Katie has always been fair, she was unusually pale and we were sure she was anemic.  After doing blood work, the ER doctor told us she was indeed anemic, but he also told us he was 90% sure she had Leukemia.  That came as a shock!  After two more days of testing, Katelynn was diagnosed with Acute Lymphocytic Leukemia.  Katie will be receiving chemo therapy for a minimum of two years.  Her hair will be gone in three to four weeks, she will be in the hospital for another week.  Over the next 2 years, she will need many blood transfusions along with spinal taps and bone marrow checks. She will also be taking steroids twice a day off and on for the next 2 years and taking a sulfa medication for 2 1/2 years. 

We want to be realistic and real as this goes along, but we also want to find "joy" in the journey.  So each day, we will look for something to be "glad" about.  Like Pollyanna, we are going to "play the glad game" to help us and Katie through this.

DAY 1 (11/10/11): Our doctors count the days by the day her treatment started, so that is now how we will count our days...and day one was a rough one! Katelynn had a severe anifilatic reaction during one of the procedures in the operating room.  We almost lost her that night.  While her heart did not stop completely, it did get extremely slow and her blood pressure did get low enough that the doctor had to do some chest compressions on her.  It is very hard to hand your child over to someone else and put her life in their care.  At the end of "Day 1" we were glad our Katie was still alive.

DAY 2 (11/11/11):  So far, Katie has done amazing for a two year old, allowing the nurses to poke and prod her, all hours of the day and night.  Even at 2 a.m. when the automatic blood pressure cuff deflates, she will say, "all done" with a big smile on her face.  She was too sore to walk today, and somewhat fussy, but many smiles throughout the day in her usual Katie style.  We watched Kung Fu Panda, and I quote: "Yesterday is history and tomorrow is a mystery, but today is a gift - that is why it is called the present."  On this day we are glad for the gift of Katie and to have her in the present!

DAY 3 (11/12/11):  Katie is still too sore to walk today, her bones are hurting.  She woke up smiling and laughing today, and has had many extreme ups and downs, but she seems to be doing okay (better than her mom and dad).  Katie needed another blood transfusion today and we are glad (and grateful) to her Aunt Robin who donated the blood for her!  Thank you Robin!  Katie is 0+ and can take 0-.  Scott is making a list for those are able and would like to donate blood for Katie.  She will continue to need blood transfusions throughout the next two years.

We have felt all of your prayers, we feel strengthened and supported!  We want to thank everyone for their love and support during all of this.  A special thanks Jenny Denton for setting up this blog. Thanks to everyone for your love and concern.  We will keep this blog updated on what is happening with the sphinx (Katie).  Please keep praying for Katie!

The Beginning (Pictures)

Sunday night, 11/6/11, we took Katie to the hospital because she was not feeling well and was so pale. 

        This was what she looked like on Monday (11/08/11) after a blood transfusion.

Always a smile on her face!

Katie loves her hair.

Flaunting it while she's still got it!

Our sweet sunshine girl.

Even with the IV's and surgery see is still smiling!