Thank you so much for your comments! We posted two sets of new pictures today. What a difference one month can make, but it will all be worth it if our Katie is healed and whole in the end. Last night I think Katie and I averaged about one hour of sleep. Thank goodness for Scott's mom, she came and helped today, and Katie and I were able to get a little more rest. I am feeling the effects of it all tonight - and I just had to apologize to my family for snapping at them. That is not how I want things to be. I know I need to find a release, but Katie can't walk and she can't go anywhere except to the clinic. And if Katie can't go anywhere, then pretty much I can't go anywhere - Scott's back at work and when Katie naps I need to nap. And if I do go somewhere, it is Christmas shopping (not the most relaxing) but I know things will get better. We have been told the first 6 months are the hardest - and we are almost done with our first month. So, there is a glimmer of light ahead...
It is too hard tonight to focus on what was hard today, so I will focus on what was great today. Lots of support. Scott's mom cooked, cleaned, did laundry and lent moral support. Someone brought a gift by for Conner and Katie (and took the time to walk and talk with us). Someone brought over Kentucky Fried Chicken for dinner. We got cards and gifts in the mail (thank you to my nieces and nephews - Tebbanie, Jordanne, Ryan and Tyler). I would like to send out a special thank you tonight to the person who anonymously sent a beautiful card and gift. The card brought tears to our eyes. I would like to quote the card: "Lord, Sometimes life is hard to understand. And even when we trust You, our hearts still ache. So I ask that You would bring Your comfort and strength to this one who is facing a difficult time. With each step she takes, may she feel Your presence with her. When she is weak, hold her up. When she is tired, carry her. Show her Your love in new ways each day, and remind her of how much she matters to You and many others." (Thank you to this gift giver - Katie loves to wear dresses and to look pretty - she has outgrown most of her winter dresses...so, she will be so excited to get some new dresses - thank you for your generous gift!)
Christ's hands are our hands. I believe the Lord does hear and answer our prayers, but often it is through others that he meets our needs. - The Lord has heard and answered our prayers, and our needs have been met, through all of you who have reached out to us! We are so grateful! Today we are glad for ministering angels, seen and unseen.
Monday, December 5, 2011
Our Christmas Pictures
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| Our Christmas picture 2011 |
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| Wanted this to be our Christmas picture, but Nathan had that big reflective dot over his head... These pictures were taken a week after Katie's last chemo treatment and a day after receiving a blood transfusion and 2 days of IV fluids. Katie looks GREAT - you wouldn't even know she was sick (in these pictures). These were just taken about 9 days ago...what a huge difference 9 days can make when you have cancer and are on chemo and steroids....what a difference a month can make! |
Pictures: Katie's New "Do"
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| Reflections in the mirror |
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| "THE" haircut |
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| I don't know who looks more upset...Or tired! |
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| Difficult day |
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| Puffy faced from the steroids |
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| Still our pretty little princess |
Sunday, December 4, 2011
Day 25
Have you ever been so sick that you didn't want anyone to even touch you? Feel so miserable that you didn't feel like doing anything...no TV, no games, nothing. That is how Katie is. She is hurting, frustrated and miserable. Today was a day of highs and lows. We started the day with little sleep (again). I don't mean to go on about the lack of sleep...but we are tired! =) It isn't like she wakes once or twice a night, rather it is that she only cat naps off and on, and cries most of the night. The trend has been she will finally go to sleep for a few hours beginning at 4 or 5 a.m. Anyway, that is how each day begins...but this morning's low was that we had to say goodbye to my sister. She has been here for the past 10 days and in her words, "it was a crazy week!" It was crazy and we wouldn't have made it through without her. Words can not express our gratitude and appreciation for her and all she has done. Scott's mom and dad and my family have been amazingly supportive!
On the high side of things, there were some magical moments today. Katie was having a fit mid morning, so we took her to feed the horses. She laughed when the horse ate her carrot. It has been awhile since she has laughed. It was so great to hear! When we got home, I put her in the bathtub and she seemed almost like herself. Scott came in and told her he was leaving for church and asked if he could have a kiss and Katie shook her head affirmatively. She leaned over and kissed her dad. I was so surprised and I asked if I could have a kiss too. I was also gifted with a sweet kiss. This brought me to tears, because it has been so long since Katie kissed me (at times she will tolerate my kisses, but never "give" one) (she used to give me kisses freely and often). It is amazing how those small things, that used to happen daily, are now such sought after and rare treasures. I truly believed in the beginning of this journey, that I had not taken my family for granted, but I can now say that even though I did appreciate my family, I did not (could not) appreciate them at the depth and level I now appreciate them.
That reminds me of a scripture passage my dad once "gave" to me. He read them to me and told me they were for me. I marked these verses and always remembered they were "mine". Apparently my dad also marked them in his scriptures and next to the verses he wrote my name. (I did not know he had marked them in that way in his until after his death and I was looking through his scriptures). These verses have always had special meaning to me. Doctrine and Covenants 98:1-3 "Verily I say unto you my friends, fear not, let your hearts be comforted; yea, rejoice evermore, and in everything give thanks;
"Waiting patiently on the Lord, for your prayers have entered into the ears of the Lord of Sabaoth, and are recorded with this seal and testament - the Lord hath sworn and decreed that they shall be granted.
"Therefore, he giveth this promise unto you, with an immutable covenant that they shall be fulfilled; and all things wherewith you have been afflicted shall work together for your good, and to my name's glory, saith the Lord." Just like this experience we are going through with our Katie, ALL things can work together for our good. I know have even a greater appreciation for my family...all of them...and for the simple things in life, like sweet little kisses.
Now...back to the low side of the day. Katie's hair was coming out in handfuls today. So, that "bob" Katie was sporting...well, she no longer is sporting. Katie now has a buzz cut. This brought her father to tears (now doubt it reminded him of his sister who went through cancer treatments and passed away in December a few years ago). My tears came when I heard Katie screaming, I asked Scott what happened, he said he had walked past a mirror and Katie saw herself. She screamed inconsolably for at least 15 minutes. Then I began crying. I asked Katie if it would make her feel better if mommy cut her hair off too. She shook her head no. I told her I was sorry...that her hair would grow back...that she was still beautiful...that it made me sad to see her so sad. I don't think she wanted me to cry anymore, so she stopped crying. Then she said she was hungry. (She is craving burritos this week). Conner said he didn't want Katie's hair to be gone. I told him none of us wanted her hair to be gone, but that it would grow back someday. So...a day of highs and lows.
Today we are glad for the Mormon Tabernacle choir. Katie enjoyed listening to the spoken word and Christmas devotional tonight. Soft reverent music has a way of soothing her, that nothing else can. Thank you for your prayers...please keep praying for our Katie girl!
On the high side of things, there were some magical moments today. Katie was having a fit mid morning, so we took her to feed the horses. She laughed when the horse ate her carrot. It has been awhile since she has laughed. It was so great to hear! When we got home, I put her in the bathtub and she seemed almost like herself. Scott came in and told her he was leaving for church and asked if he could have a kiss and Katie shook her head affirmatively. She leaned over and kissed her dad. I was so surprised and I asked if I could have a kiss too. I was also gifted with a sweet kiss. This brought me to tears, because it has been so long since Katie kissed me (at times she will tolerate my kisses, but never "give" one) (she used to give me kisses freely and often). It is amazing how those small things, that used to happen daily, are now such sought after and rare treasures. I truly believed in the beginning of this journey, that I had not taken my family for granted, but I can now say that even though I did appreciate my family, I did not (could not) appreciate them at the depth and level I now appreciate them.
That reminds me of a scripture passage my dad once "gave" to me. He read them to me and told me they were for me. I marked these verses and always remembered they were "mine". Apparently my dad also marked them in his scriptures and next to the verses he wrote my name. (I did not know he had marked them in that way in his until after his death and I was looking through his scriptures). These verses have always had special meaning to me. Doctrine and Covenants 98:1-3 "Verily I say unto you my friends, fear not, let your hearts be comforted; yea, rejoice evermore, and in everything give thanks;
"Waiting patiently on the Lord, for your prayers have entered into the ears of the Lord of Sabaoth, and are recorded with this seal and testament - the Lord hath sworn and decreed that they shall be granted.
"Therefore, he giveth this promise unto you, with an immutable covenant that they shall be fulfilled; and all things wherewith you have been afflicted shall work together for your good, and to my name's glory, saith the Lord." Just like this experience we are going through with our Katie, ALL things can work together for our good. I know have even a greater appreciation for my family...all of them...and for the simple things in life, like sweet little kisses.
Now...back to the low side of the day. Katie's hair was coming out in handfuls today. So, that "bob" Katie was sporting...well, she no longer is sporting. Katie now has a buzz cut. This brought her father to tears (now doubt it reminded him of his sister who went through cancer treatments and passed away in December a few years ago). My tears came when I heard Katie screaming, I asked Scott what happened, he said he had walked past a mirror and Katie saw herself. She screamed inconsolably for at least 15 minutes. Then I began crying. I asked Katie if it would make her feel better if mommy cut her hair off too. She shook her head no. I told her I was sorry...that her hair would grow back...that she was still beautiful...that it made me sad to see her so sad. I don't think she wanted me to cry anymore, so she stopped crying. Then she said she was hungry. (She is craving burritos this week). Conner said he didn't want Katie's hair to be gone. I told him none of us wanted her hair to be gone, but that it would grow back someday. So...a day of highs and lows.
Today we are glad for the Mormon Tabernacle choir. Katie enjoyed listening to the spoken word and Christmas devotional tonight. Soft reverent music has a way of soothing her, that nothing else can. Thank you for your prayers...please keep praying for our Katie girl!
Saturday, December 3, 2011
Day 24
Nathan is home from the hospital and I am on antibiotics, so we are moving in a better direction! =) As Scott mentioned, Katie's hair is rapidly falling out now, so mommy and Katie both got a trim. Katie is now sporting a "bob". This was a first step for us with the whole hair thing. I am sure a shorter hairdo will be coming...well, I guess bald is coming, but before then, a shorter style. I was told toddlers don't mind loosing their hair - I guess someone should have told Katie that!
Scott and I are kind of in the "newborn fog". You know that fog that comes from a lack of REM sleep? We haven't gotten a full nights sleep since this all began. It definitely reminds me of how I felt when we had a new baby, just without the new baby. Instead of the baby, it's cancer and steroids - same result of fogginess though. In a way, Katie has reverted back to a newborn. She wakes throughout the night crying, needing to be changed, saying she is hungry, screaming (without being able to tell you what's wrong) and not being able to walk. Today I asked her if she would walk a few steps for me and she told me, "I can't walk". That about broke my heart! I told her she can walk and that she would be able to walk again soon. She is upset by all that has happened to her. She does understand - everything...well, except why this is happening to her. Katie is smart and she is aware.
A few years ago, together as a family, we picked a scripture that we felt best suited our family's needs at that time. We were to use this scripture as a reminder throughout the year. That scripture has been a great source of comfort and strength to us and has remained our family scripture, not just for that year, but every year since. The scripture is: 1 Peter 1:7 "That the trial of your faith, being much more precious than of gold that perisheth, though it be tried with fire, might be found unto praise and honour and glory at the appearing of Jesus Christ". Scott says that if the trial of our faith is much more precious than gold, then, (he jokes) we are going to be really "rich" in the next life! =)
I also like the scriptures in 1 Peter 2: 19 - 25 "For this is thankworthy, if a man for conscience toward God endure grief, suffering wrongfully.
"For what glory is it, if , when ye be buffeted for your faults, ye shall take it patiently? but if, when ye do well, and suffer for it, ye take it patiently, this is acceptable with God.
"For even hereunto were ye called: because Christ also suffered for us, leaving us an example, that ye should follow his steps:
"Who did no sin, neither was guile found in his mouth:
"Who, when he was reviled, reviled not again; when he suffered, he threatened not; but committed himself to him that judgeth righteously;
"Who his own self bare our sins in his own body on the tree, that we, being dead to sins, should live unto righteousness: by whose stripes ye were healed.
"For ye were as sheep going astray; but are now returned unto the Shepherd and Bishop of your souls."
Today I am glad for seasons, because I know that this "season" too shall pass. We are grateful for your love, comments and support! Your comments help to strengthen and encourage us each day. We continue to seek to find joy daily!
Scott and I are kind of in the "newborn fog". You know that fog that comes from a lack of REM sleep? We haven't gotten a full nights sleep since this all began. It definitely reminds me of how I felt when we had a new baby, just without the new baby. Instead of the baby, it's cancer and steroids - same result of fogginess though. In a way, Katie has reverted back to a newborn. She wakes throughout the night crying, needing to be changed, saying she is hungry, screaming (without being able to tell you what's wrong) and not being able to walk. Today I asked her if she would walk a few steps for me and she told me, "I can't walk". That about broke my heart! I told her she can walk and that she would be able to walk again soon. She is upset by all that has happened to her. She does understand - everything...well, except why this is happening to her. Katie is smart and she is aware.
A few years ago, together as a family, we picked a scripture that we felt best suited our family's needs at that time. We were to use this scripture as a reminder throughout the year. That scripture has been a great source of comfort and strength to us and has remained our family scripture, not just for that year, but every year since. The scripture is: 1 Peter 1:7 "That the trial of your faith, being much more precious than of gold that perisheth, though it be tried with fire, might be found unto praise and honour and glory at the appearing of Jesus Christ". Scott says that if the trial of our faith is much more precious than gold, then, (he jokes) we are going to be really "rich" in the next life! =)
I also like the scriptures in 1 Peter 2: 19 - 25 "For this is thankworthy, if a man for conscience toward God endure grief, suffering wrongfully.
"For what glory is it, if , when ye be buffeted for your faults, ye shall take it patiently? but if, when ye do well, and suffer for it, ye take it patiently, this is acceptable with God.
"For even hereunto were ye called: because Christ also suffered for us, leaving us an example, that ye should follow his steps:
"Who did no sin, neither was guile found in his mouth:
"Who, when he was reviled, reviled not again; when he suffered, he threatened not; but committed himself to him that judgeth righteously;
"Who his own self bare our sins in his own body on the tree, that we, being dead to sins, should live unto righteousness: by whose stripes ye were healed.
"For ye were as sheep going astray; but are now returned unto the Shepherd and Bishop of your souls."
Today I am glad for seasons, because I know that this "season" too shall pass. We are grateful for your love, comments and support! Your comments help to strengthen and encourage us each day. We continue to seek to find joy daily!
Friday, December 2, 2011
Day 23
Anndrea asked me to write tonight, She took in and out burger, to Nathan for lunch and ran some errands today. All because I encouraged her to get out of the house. When she arrived home she was hurting, now she has confirmed, she has a bladder infection.
Nathan is getting better, and according to the MD should be coming home tomorrow. He has some form of staff infection, He is responding well to antibiotics. He had a quarter sized mat burn on his right hand from wrestling, that is where the infection started. He will continue oral antibiotics for a week after leaving the hospital. Yahoo!!! We are going to get out of the hospital in the morning!!!
Katie was restless today, the steroids have her on a emotional roller coaster, it is hard to watch. Her hair is really falling out now. Anndrea is going to have her sister help her shorten it up a little tonight. For that reason alone I am glad I am at the hospital with Nathan tonight, that bothers me so much. Less than two weeks of steroids left!!
Today we are so "glad" for friends, thank you all, for your concern, love, and support. Thank you especially for your prayers in our behalf. We have felt and continue to feel strengthened by them, We truly can not thank you enough!
Thursday, December 1, 2011
Day 22
Katie has had an okay day (comparatively). The steroids are about to do us all in, but the daily dose of steroids will end soon - so we will get through it. I find myself constantly covered in Katie's hair (it seems to be everywhere). It seems to be falling out faster now, so I guess we will need to cut her hair soon.
Nathan is still in the hospital, we were told he will be there at least until Saturday morning. We still don't know exactly what the source of his infection is, as they are still awaiting test results, but he is on an IV and he gets a dose of antibiotics every 6 hours. Scott is at the hospital with him and will stay the night with him again.
Even simple things right now seem difficult. It's strange, but that is how it is. Today we are glad for drive through restaurants! =) The scripture that got me through the day is Proverbs 3:5-6, "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him and he shall direct thy paths." I also watched a 3 minute videos on lds.org (main page) that I found encouraging and helpful, it's called "Men's Hearts Shall Fail Them" (Elder Russell M. Nelson shares a personal story of encouragement for when we feel "weak in the heart"). Please remember to pray for Katie...and Nathan.
Nathan is still in the hospital, we were told he will be there at least until Saturday morning. We still don't know exactly what the source of his infection is, as they are still awaiting test results, but he is on an IV and he gets a dose of antibiotics every 6 hours. Scott is at the hospital with him and will stay the night with him again.
Even simple things right now seem difficult. It's strange, but that is how it is. Today we are glad for drive through restaurants! =) The scripture that got me through the day is Proverbs 3:5-6, "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him and he shall direct thy paths." I also watched a 3 minute videos on lds.org (main page) that I found encouraging and helpful, it's called "Men's Hearts Shall Fail Them" (Elder Russell M. Nelson shares a personal story of encouragement for when we feel "weak in the heart"). Please remember to pray for Katie...and Nathan.
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