Still on the iPad... Katie got her labs drawn and her monthly dose of I.V. chemo yesterday. Katie's ANC numbers are still too high. If they are still high next month, then they will increase her chemo dose again. We hope her numbers go down! Dr. Dana asked what the Endocrinologist found out - we told her they couldn't find the cause of what was wrong, and they attributed her low blood sugars to her treatments. Dr. Dana was very skeptical about that, she doesn't think that is the cause...I guess we will all found out in about 8 or 9 months from now when Katie stops her treatments. For now we are doing the corn starch. Katie still is having occasional low blood sugars, but not as often - and when she has one, we know what to do to help her - which is still worrisome, but I think the best we can do for now. On kind of a funny note - well, kind of funny, but not really - I must add that when Dr. Dana said she did not think Katie's treatments were the cause of her low blood sugars (because that would be rare and unusual), she also said, "but then again this is Katie we are talking about! She seems to have all the really weird things happen to her." -- That's for sure! -- Katie has had to go through a lot of "extra" problems since all of this started. However, she is responding to her treatments, and for that we are grateful and glad!
Katie did not have a good day today, which we weren't expecting - at least not yet anyway - she reacted fast this time to her chemo and steroids. She was in bed for most of the day and very emotional. Scott and I couldn't believe how bad she was already, it usually takes longer for it to kick in. Maybe she was already weak from the scorpion sting, or maybe it is the higher dose of chemo, something.... And to top it off, Katie's fish died today - that didn't help matters. Katie and Conner both had a fish - and it was Katie's fish that died. Off and on today there were tears, and she kept saying, "I miss my fish." I think she was finally okay with the idea of her fish being in heaven, when I told her our dog Cozy (who is also in heaven) would take care of her fish. -Katie said, "Cozy wont put my fish in her mouth will she?" I assured Katie that Cozy wouldn't do that, and that Cozy would be a good "mommy" and take care of her fish for her.
I will not be posting on the blog for a couple of weeks. Katie, Conner and I are going to New Mexico to spend time with my mom and family. We were supposed to leave on Saturday, but Scott and I decided that I should leave in the morning (Friday) - if I waited until Saturday, I probably wouldn't be able to go, because Katie will most likely keep getting worse every day now for the next week or two. And my mom needs me there this next week. I don't anticipate that it will be a fun car ride tomorrow (but a better car ride than it would be on Saturday) and I will make as many stops as Katie needs. I hope she will be able to sleep a lot - I hope. Scott left for a youth camp today, and Nathan is flying out tomorrow to work on a ranch in Montana for the summer...and the two little ones and I are off to New Mexico. I will post again on the blog when we return - in about two weeks.
Thursday, May 30, 2013
Sunday, May 26, 2013
Day 606
For some reason, I can't get to the blog from my home computer - so I am doing this on the iPad. Scott went to work this morning, and the rest of us were up, planning on going to church - then Katie let out several blood curdling screams! I ran down stairs to the living room where she was sitting on the floor screaming and crying. I asked her what was wrong. She told me she had put her arm under the blanket and it had hurt her arm. I immediately thought "scorpion.". I lifted up the blanket (that was really a beach towel she had gotten yesterday at her birthday party) and I shook it out --nothing there. Katie keeps screaming and crying - she says she needs her dad. I took her and Conner to the fire station (but as we are leaving Nathan tells me he killed 2 baby scorpions in his bathroom yesterday). So, when we got to the fire station I told Scott I thought it was a scorpion sting. Long story short - it was. She was stung on her arm - she had a raised red area about 2 inches wide and her arm and hand hurt. However, she was just sniffly and fussy, so we figured she would hurt, but be okay. Not the case! After calling Scott 4 times at work, I asked him to come home, I told him Katie wasn't okay. Katie's eyes were dilated, she said she was dizzy, she said her eyes were blurry ( I didn't even know she knew those words!). Katie also said her feet were hurting, and then her tummy, and then everywhere, she said her throat hurt, and she said she couldn't breathe good. When Scott got home, I had him call the Oncologist on call and they said to bring her in immediately.
As we were getting Katie in the car she started dry heaving (over and over). Then she would go limp. She seemed to be choking almost when she was gagging. Then her eyes started shifting back and forth (roving eye movements). By the time we got to the hospital, Katie was writhing in pain, to the point that she was clawing at me. At the hospital, they took her immediately in. Katie was having a severe reaction to the scorpion sting! Katie was almost out of her mind with pain - she even bit me (drawing blood) - she was really, just kind of out of her mind. After what seemed like forever, they gave her some medication to help sedate her and calm her down. Then after talking to a toxicologist, to make sure the anti-venom wouldn't interfere with the chemo medications she is on, they gave her a dose of anti-venom. After about 30 minutes, they checked her again, she was better - her blood pressure, etc...was going down, but her eyes were still wiggling back and forth. So, they gave her another dose of the anti-venom. We were told the anti-venom costs 10,000 a dose - we sure hope our insurance is going to cover this! Katie's tongue had also gotten big and her throat closing up - she was having difficulty breathing.
I can not even begin to describe it accurately. I was so scared! I mean SO scared!! Why did this have to happen to Katie? - Not that I would have wished this on anyone else in our house, but she has already had to go through SO much! I would have gladly taken her place, if I could have. It was so awful for her! I was terrified! ---Several hours later, we were home, Katie's arm, hand and feet were still hurting, and she was wiped out, but okay. Scott and I were wiped out. Poor Conner was dragged along with us for the journey (now that we don't have grandma to help). (Scott's mom got pneumonia this week and was moved back to the main hospital). And poor Nathan we sent him to church, and when he came home no one was here and he was worried - I told him there was no time for a note - Katie's symptoms were so severe! Anyway, we are all home. We are all okay -frazzled - but okay. We all took a nap - everyone else is still sleeping. I napped in Katie's bed - I wanted to keep an eye on her - one eye opened and one eye closed - pretty much the way it has been for nearly two years now.
Scott and I had to laugh - after I cried. Scott said, "We couldn't make this stuff up if we wanted too." I told him, our life was so crazy, people might think I was making it up, just to keep the blog interesting. I wish! This is our life and it is all very real. On the up side of things....Katie will be turning 4 soon. Katie gets chemo next week, so we had a little birthday party early for her. Katie wanted cherry cake, just like last year - her favorite color is pink - she likes anything and everything pink - even her cake! Yesterday was a very happy day for her - and we are GLAD!
Last note on the scorpion, Nathan and I couldn't find it, but when we got back from the hospital Scott found it. I researched it earlier, scorpions can live for like 9 years and can have like 50 babies at a time....So now that I am officially freaked out about it, Scott is going to spray. We have used pesticides sparingly, as we were cautioned to do so, because of Katie's cancer and weakened immune system....But we do NOT want this to ever happen again. I hate scorpions!
As we were getting Katie in the car she started dry heaving (over and over). Then she would go limp. She seemed to be choking almost when she was gagging. Then her eyes started shifting back and forth (roving eye movements). By the time we got to the hospital, Katie was writhing in pain, to the point that she was clawing at me. At the hospital, they took her immediately in. Katie was having a severe reaction to the scorpion sting! Katie was almost out of her mind with pain - she even bit me (drawing blood) - she was really, just kind of out of her mind. After what seemed like forever, they gave her some medication to help sedate her and calm her down. Then after talking to a toxicologist, to make sure the anti-venom wouldn't interfere with the chemo medications she is on, they gave her a dose of anti-venom. After about 30 minutes, they checked her again, she was better - her blood pressure, etc...was going down, but her eyes were still wiggling back and forth. So, they gave her another dose of the anti-venom. We were told the anti-venom costs 10,000 a dose - we sure hope our insurance is going to cover this! Katie's tongue had also gotten big and her throat closing up - she was having difficulty breathing.
I can not even begin to describe it accurately. I was so scared! I mean SO scared!! Why did this have to happen to Katie? - Not that I would have wished this on anyone else in our house, but she has already had to go through SO much! I would have gladly taken her place, if I could have. It was so awful for her! I was terrified! ---Several hours later, we were home, Katie's arm, hand and feet were still hurting, and she was wiped out, but okay. Scott and I were wiped out. Poor Conner was dragged along with us for the journey (now that we don't have grandma to help). (Scott's mom got pneumonia this week and was moved back to the main hospital). And poor Nathan we sent him to church, and when he came home no one was here and he was worried - I told him there was no time for a note - Katie's symptoms were so severe! Anyway, we are all home. We are all okay -frazzled - but okay. We all took a nap - everyone else is still sleeping. I napped in Katie's bed - I wanted to keep an eye on her - one eye opened and one eye closed - pretty much the way it has been for nearly two years now.
Scott and I had to laugh - after I cried. Scott said, "We couldn't make this stuff up if we wanted too." I told him, our life was so crazy, people might think I was making it up, just to keep the blog interesting. I wish! This is our life and it is all very real. On the up side of things....Katie will be turning 4 soon. Katie gets chemo next week, so we had a little birthday party early for her. Katie wanted cherry cake, just like last year - her favorite color is pink - she likes anything and everything pink - even her cake! Yesterday was a very happy day for her - and we are GLAD!
Last note on the scorpion, Nathan and I couldn't find it, but when we got back from the hospital Scott found it. I researched it earlier, scorpions can live for like 9 years and can have like 50 babies at a time....So now that I am officially freaked out about it, Scott is going to spray. We have used pesticides sparingly, as we were cautioned to do so, because of Katie's cancer and weakened immune system....But we do NOT want this to ever happen again. I hate scorpions!
Sunday, May 19, 2013
Day 559
Katie has had a better week overall. For that, we are glad and thankful! I wish I could just end todays blog at that... However, Katie had 2 low glucose levels this week (Wednesday and Saturday). So, even with a carbohydrate and protein bedtime snack and 2 tsps of corn starch, she is still having low blood sugar episodes. When it happened on Wednesday morning, Scott said he didn't think he gave her "exactly" 2 tsps of corn starch the night before - and he said we should just be really careful to give her the full/exact amount. We thought it was just kind of a fluke, but then on Saturday morning, Katie woke me by calling for me. I could tell by the tone of her voice that she wasn't okay. I went into her room, and I found her in her bed. She was too weak to sit up, and she was in a full body sweat. -- I thought (hoped) we were past this added worry of low blood sugars. I had the same thought process Scott had - I knew I had given her the full amount of corn starch...but I found myself wondering if I had given her enough to eat, enough carbs, enough protein... I thought I had, but then I wasn't sure.
This low blood sugar issue has added additional stress and worry to our lives. Since Katie needs to eat at bedtime, we have started giving her "night time" pills to her in the middle of the day, but there has to be a 4 hour window without any food (2 hours before meds & 2 hours after meds) - so basically that means no afternoon snack. That is hard - especially when Conner wants an afternoon snack! The trade off has been that Katie gets to eat a bedtime snack now - the only problem is, she doesn't always feel like eating at bedtime- and most especially, she doesn't always feel like eating a snack of carbs and protein! I think it is so crazy that I am having to tell her she "has" to eat something before she goes to bed - and it "has" to be "this." She is too young to fully understand why eating a couple of strawberries just isn't enough.
Something else came up this week that reminded me of how young Katie is, and how young she was when this all started. She was in her bed one night, and she was insisting she needed to get out of bed to look in a mirror at the scar on her chest (the scar where her port had been put in and taken out). I told her the lights were already out and it was time to go to sleep. Katie however, kept insisting. When Scott came into the room, he asked what was going on, and I told him. Scott asked Katie why she wanted to look at her scar. Katie replied, "I want to see if my scar has gotten smaller - I want to see if my cancer is going away." Oh!... My heart sank!.... We explained to Katie about her port, about her scar, and about her cancer. In short, we told her the cancer had been in her bones, and it was going away, and she was getting better. Katie said, "Oh, okay..." and then she went to sleep. I, on the other hand, was left wondering about it all. It has been so much for such a little girl.
Just the day before this conversation, Katie and I had another interesting conversation. When I was putting her down for a nap, she looked over at me and said, "I am glad I haven't gone to heaven yet!" And I said, "Well yah, I am glad too!" --What thoughts go through her little 3 year old head! What else does she not understand? What does she understand? I just wonder...
Katie has had a rash for a few weeks now - since her last treatment - that won't seem to go away. She has had this before, but it has been a long time since she has had this. It it on her face, head, chest and back. She scratches and scratches. I feel so sorry for her! We have given her allergy medication a few times, when the itching has gotten too bad, but we don't want to give it to her all the time - she is already on so many medications. It will be good when this is all over with! -- I say it will be good, and it will be good...But along with ending the treatments comes the worry and the waiting - to see if the cancer is going to come back (I can't focus on that though). In January -no more meds, no more chemo, no more treatments. And hopefully no more corn starch, low blood sugars, rashes, etc..either.
As an update on Scott's mom, she is still in the hospital - she has been there for well over a month - she is still on IV fluids only - her stomach still isn't working. However, they have finally allowed her to sit up, the past few days, and even stand - putting weight on her good leg. They are talking about doing surgery around the end of this month. It has been rough for her, to say the least! We are praying that she will heal quickly and fully.
Today in church a young woman leaving on her mission, referenced a talk by Elder Bednar, in which a story was told of a young man who after returning home from his mission, got married, and then a month later was diagnosed with cancer. When this man was offered a blessing, he was asked, "Do you have the faith not to be healed?" What a thought provoking question! It is one thing to have the faith to be healed - and quite another to have the faith not to be healed. It is easy to accept the Lord's will in our lives, as long as it correlates with our own will and plans - but what if the Lord's plan and will is different than ours? How strong will our faith be then? Do we have the faith not to be healed? Something to think about...
This low blood sugar issue has added additional stress and worry to our lives. Since Katie needs to eat at bedtime, we have started giving her "night time" pills to her in the middle of the day, but there has to be a 4 hour window without any food (2 hours before meds & 2 hours after meds) - so basically that means no afternoon snack. That is hard - especially when Conner wants an afternoon snack! The trade off has been that Katie gets to eat a bedtime snack now - the only problem is, she doesn't always feel like eating at bedtime- and most especially, she doesn't always feel like eating a snack of carbs and protein! I think it is so crazy that I am having to tell her she "has" to eat something before she goes to bed - and it "has" to be "this." She is too young to fully understand why eating a couple of strawberries just isn't enough.
Something else came up this week that reminded me of how young Katie is, and how young she was when this all started. She was in her bed one night, and she was insisting she needed to get out of bed to look in a mirror at the scar on her chest (the scar where her port had been put in and taken out). I told her the lights were already out and it was time to go to sleep. Katie however, kept insisting. When Scott came into the room, he asked what was going on, and I told him. Scott asked Katie why she wanted to look at her scar. Katie replied, "I want to see if my scar has gotten smaller - I want to see if my cancer is going away." Oh!... My heart sank!.... We explained to Katie about her port, about her scar, and about her cancer. In short, we told her the cancer had been in her bones, and it was going away, and she was getting better. Katie said, "Oh, okay..." and then she went to sleep. I, on the other hand, was left wondering about it all. It has been so much for such a little girl.
Just the day before this conversation, Katie and I had another interesting conversation. When I was putting her down for a nap, she looked over at me and said, "I am glad I haven't gone to heaven yet!" And I said, "Well yah, I am glad too!" --What thoughts go through her little 3 year old head! What else does she not understand? What does she understand? I just wonder...
Katie has had a rash for a few weeks now - since her last treatment - that won't seem to go away. She has had this before, but it has been a long time since she has had this. It it on her face, head, chest and back. She scratches and scratches. I feel so sorry for her! We have given her allergy medication a few times, when the itching has gotten too bad, but we don't want to give it to her all the time - she is already on so many medications. It will be good when this is all over with! -- I say it will be good, and it will be good...But along with ending the treatments comes the worry and the waiting - to see if the cancer is going to come back (I can't focus on that though). In January -no more meds, no more chemo, no more treatments. And hopefully no more corn starch, low blood sugars, rashes, etc..either.
As an update on Scott's mom, she is still in the hospital - she has been there for well over a month - she is still on IV fluids only - her stomach still isn't working. However, they have finally allowed her to sit up, the past few days, and even stand - putting weight on her good leg. They are talking about doing surgery around the end of this month. It has been rough for her, to say the least! We are praying that she will heal quickly and fully.
Today in church a young woman leaving on her mission, referenced a talk by Elder Bednar, in which a story was told of a young man who after returning home from his mission, got married, and then a month later was diagnosed with cancer. When this man was offered a blessing, he was asked, "Do you have the faith not to be healed?" What a thought provoking question! It is one thing to have the faith to be healed - and quite another to have the faith not to be healed. It is easy to accept the Lord's will in our lives, as long as it correlates with our own will and plans - but what if the Lord's plan and will is different than ours? How strong will our faith be then? Do we have the faith not to be healed? Something to think about...
Monday, May 13, 2013
Day 553
I am grateful to those who of you who are still reading this blog out of concern for our sweet daughter Katie, (because I know you don't continue reading this blog because I am an upbeat, uplifting, or proficient writer!) I simply write what is happening with Katie and what is in my heart. Katie has cancer and that is hard. It has been difficult, stressful, scary, and painful for all of us. When I first started writing the blog it was to keep our family and friends updated - and hopefully to remind people to keep Katie in their prayers. Those are still my intentions, although the blog has become a way for me to keep a record of this journey. A record that I will someday be able to pass on to Conner and Katie, as a history of our life during this difficult time... An account of Katie's life... and how we have all been affected. So, as I said, cancer is hard - and this blog is "hard to read," it is not cheerful - it is not a cheerful subject, it has not been easy to live through - and it has not been easy to write about. However, I continue to blog in the hopes for continued prayers for Katie, and for a record of her life. Her life may be short or it may be long - we don't know - but I do know we will always cherish the memories and the life lessons that have been written down as a result.
I can remember thinking last Tuesday, that it had been a really long week...and then I realized it was only Tuesday! Last week was a long week. A hard week. Katie has continued to struggle adjusting to the new higher dosage of chemo (and being on steroids didn't help anything). I can remember telling Scott, "Maybe I should call the doctor...I think the dose is too high...I think it is too much for her." Scott replied, "Come January, you will be grateful." - Meaning I will be grateful when Katie's treatments stop and Katie will be "cancer free." I just shrugged my shoulders at him, because I didn't know how to answer. Grateful?... That is a hard one.... I am grateful for the treatments, they have prolonged, and hopefully have saved Katie's life... But when your 3 year old daughter is lying in bed watching TV (because she is too weak to do anything else) and she sees children on TV laughing and dancing and playing, and she says,"I wish I could play like those children" - then it is hard to feel grateful. It is hard to feel anything but heartbroken. Especially when you try to reassure your daughter, that she will feel good enough to play like that again someday, and she tells you that she doesn't think she will.
Last week, Katie took multiple naps a day - and was laying in bed for most of the day - until Thursday (she went off steroids on Wednesday). Katie perked up on Thursday and Friday a bit. On Friday Scott and the boys went on a Father and Son's camp-out. So, Katie and I had "special girl time" planned for Friday evening and Saturday. Katie wanted pizza, so Friday night we went out for pizza. Although when we got to the pizza restaurant, she threw herself on the floor (extremely uncharacteristic of her) and she started screaming, "This isn't where I wanted to eat...This isn't where we get the pizza...I don't want to eat here!" She screamed the whole way through the restaurant while the hostess was seating us. I wasn't sure if we should leave or stay, so I just followed the hostess. After we were seated, Katie quickly calmed down, and in the end she was extremely happy with my choice of pizza restaurants. I later asked her why she gotten so upset, and she said she wanted to go to Costco to get pizza. Funny, I was trying to make it special by going to an expensive pizza place, and all she wanted was Costco pizza1 But in the end we were both happy and satisfied. After dinner, we went shopping for new nail polish, and she settled on a polish with sparkly stars in it. Once that was accomplished, we went home, painted our fingernails and toenails, watched a rented movie, and ate strawberry ice cream. Our plans for the next day was to go shopping.
Our plans however got derailed about 2:00 a.m. when Katie (who was sleeping with me in my bed) suddenly awoke and said, "I am gonna throw-up, I am gonna throw-up!" I jumped out of bed and said "Okay, I will go and get your medicine." I had given Katie her extra high dose of chemo - that she gets every Friday - 8 pills of chemo. So, I figured she was nauseous from that and I thought I would get her the anti-nausea medicine. However, Katie stopped me in my tracks and said, "NO! I need something to throw-up into!" And then she immediately began vomiting...4-5 times (on my bed - Scott's side). I put her in the bathtub and ran downstairs for the anti-nausea medicine (remember Scott is not home - he is camping). Before I can get back upstairs, Katie has thrown-up 3 more times (in the tub). After Katie was all cleaned up, I took her glucose (blood sugar) level, and it was low. At this point, I wasn"t sure what to do. Do I give her juice for the low blood sugar or will that make her throw-up more? Call the doctor? Which doctor - Endocrinologist or Oncologist? Is she throwing-up because her blood sugar is low - or is her blood sugar low because she is throwing-up? OR is she throwing-up because of the increased dose in chemo?
I know I have to give her juice. I know I have to get her glucose level up. So, as I am downstairs getting juice Katie yells at me, "Something is moving on the wall...and it is coming to my side!" I ran back upstairs with the juice, and I see a HUGE spider on the ceiling/wall (like wolf spider huge). I run downstairs for the fly swatter - nope, too flimsy for such a big spider. I run back downstairs for a Mason jar and lid - nope, I would have to get too close to the spider (basically I am too scared). So, I finally run downstairs for the vacuum, and after a few deep breathes, I get the courage to suck up the spider, using the long extended handle - and of course, I put tin foil and a rubber band on the end, just to ensure that the spider will have absolutely no way of crawling back out of the vacuum! After all of that, Katie rests on her bed, while I am cleaning up the vomit from my bed. We finally settle into sleep (in Katie's twin bed) - she said she "needs" me in her bed.
I never called a doctor, because like I said, which doctor do I call? Besides, (after the panic passed) I realized, I had handled the low blood sugar, and I had given her anti-nausea medicine, and she didn't have a fever. And Scott would be home soon - and he would know what to do. I was able to reach Scott (via Ken Booth's cell phone) the next morning, and Scott said the stomach flu was going around and he was sure it was the stomach flu. I was not sure of that - until about mid-day Saturday - and then I was sure it was the stomach flu -- because I now had it too. Needless to say, I was very glad when Scott made it home! =)
I called the Endocrinologist today, and he said that Katie's metabolic labs came back all normal. He said that whatever is going on with her blood sugars is not serious, as long as we are able to keep it under control, by using the corn starch. He said, "Every child reacts differently, and this must just be one of the ways Katie is reacting to the chemo and medications." We are glad nothing more serious has come of all of this.
"Why should we pray? We should pray because prayer is indispensable to the accomplishment of the real purpose of our lives. We are children of God. As such, we have the potentiality to rise to his perfection. The Savior himself inspired us with this aspiration when he said, '"I would that ye should be perfect even as I, or your Father who is in haven is perfect.'" (3Nephi 12:48.)
"No one shall ever reach such perfection unless he is guided to it by Him who is perfect. And guidance from Him is to be had only through prayer. In our upward climb, this mortal experience through which we are now passing is a necessary step. To obtain perfection, we had to leave our pre-earth home and come to earth. During the transfer, a veil was drawn over our spiritual eyes, and the memory of our pre-earth experiences was suspended. In the Garden of Eden, God endowed us with moral agency and, as it were, left us here on our own between the forces of good and evil to be proved - to see if, walking by faith, we would rise to our high potentiality by doing "'all things whatsoever the Lord [our] god shall command [us].'" (Abraham 3:25.) (Marion G. Romney, "A Year of Powerful Prayer," p. 4).
I can remember thinking last Tuesday, that it had been a really long week...and then I realized it was only Tuesday! Last week was a long week. A hard week. Katie has continued to struggle adjusting to the new higher dosage of chemo (and being on steroids didn't help anything). I can remember telling Scott, "Maybe I should call the doctor...I think the dose is too high...I think it is too much for her." Scott replied, "Come January, you will be grateful." - Meaning I will be grateful when Katie's treatments stop and Katie will be "cancer free." I just shrugged my shoulders at him, because I didn't know how to answer. Grateful?... That is a hard one.... I am grateful for the treatments, they have prolonged, and hopefully have saved Katie's life... But when your 3 year old daughter is lying in bed watching TV (because she is too weak to do anything else) and she sees children on TV laughing and dancing and playing, and she says,"I wish I could play like those children" - then it is hard to feel grateful. It is hard to feel anything but heartbroken. Especially when you try to reassure your daughter, that she will feel good enough to play like that again someday, and she tells you that she doesn't think she will.
Last week, Katie took multiple naps a day - and was laying in bed for most of the day - until Thursday (she went off steroids on Wednesday). Katie perked up on Thursday and Friday a bit. On Friday Scott and the boys went on a Father and Son's camp-out. So, Katie and I had "special girl time" planned for Friday evening and Saturday. Katie wanted pizza, so Friday night we went out for pizza. Although when we got to the pizza restaurant, she threw herself on the floor (extremely uncharacteristic of her) and she started screaming, "This isn't where I wanted to eat...This isn't where we get the pizza...I don't want to eat here!" She screamed the whole way through the restaurant while the hostess was seating us. I wasn't sure if we should leave or stay, so I just followed the hostess. After we were seated, Katie quickly calmed down, and in the end she was extremely happy with my choice of pizza restaurants. I later asked her why she gotten so upset, and she said she wanted to go to Costco to get pizza. Funny, I was trying to make it special by going to an expensive pizza place, and all she wanted was Costco pizza1 But in the end we were both happy and satisfied. After dinner, we went shopping for new nail polish, and she settled on a polish with sparkly stars in it. Once that was accomplished, we went home, painted our fingernails and toenails, watched a rented movie, and ate strawberry ice cream. Our plans for the next day was to go shopping.
Our plans however got derailed about 2:00 a.m. when Katie (who was sleeping with me in my bed) suddenly awoke and said, "I am gonna throw-up, I am gonna throw-up!" I jumped out of bed and said "Okay, I will go and get your medicine." I had given Katie her extra high dose of chemo - that she gets every Friday - 8 pills of chemo. So, I figured she was nauseous from that and I thought I would get her the anti-nausea medicine. However, Katie stopped me in my tracks and said, "NO! I need something to throw-up into!" And then she immediately began vomiting...4-5 times (on my bed - Scott's side). I put her in the bathtub and ran downstairs for the anti-nausea medicine (remember Scott is not home - he is camping). Before I can get back upstairs, Katie has thrown-up 3 more times (in the tub). After Katie was all cleaned up, I took her glucose (blood sugar) level, and it was low. At this point, I wasn"t sure what to do. Do I give her juice for the low blood sugar or will that make her throw-up more? Call the doctor? Which doctor - Endocrinologist or Oncologist? Is she throwing-up because her blood sugar is low - or is her blood sugar low because she is throwing-up? OR is she throwing-up because of the increased dose in chemo?
I know I have to give her juice. I know I have to get her glucose level up. So, as I am downstairs getting juice Katie yells at me, "Something is moving on the wall...and it is coming to my side!" I ran back upstairs with the juice, and I see a HUGE spider on the ceiling/wall (like wolf spider huge). I run downstairs for the fly swatter - nope, too flimsy for such a big spider. I run back downstairs for a Mason jar and lid - nope, I would have to get too close to the spider (basically I am too scared). So, I finally run downstairs for the vacuum, and after a few deep breathes, I get the courage to suck up the spider, using the long extended handle - and of course, I put tin foil and a rubber band on the end, just to ensure that the spider will have absolutely no way of crawling back out of the vacuum! After all of that, Katie rests on her bed, while I am cleaning up the vomit from my bed. We finally settle into sleep (in Katie's twin bed) - she said she "needs" me in her bed.
I never called a doctor, because like I said, which doctor do I call? Besides, (after the panic passed) I realized, I had handled the low blood sugar, and I had given her anti-nausea medicine, and she didn't have a fever. And Scott would be home soon - and he would know what to do. I was able to reach Scott (via Ken Booth's cell phone) the next morning, and Scott said the stomach flu was going around and he was sure it was the stomach flu. I was not sure of that - until about mid-day Saturday - and then I was sure it was the stomach flu -- because I now had it too. Needless to say, I was very glad when Scott made it home! =)
I called the Endocrinologist today, and he said that Katie's metabolic labs came back all normal. He said that whatever is going on with her blood sugars is not serious, as long as we are able to keep it under control, by using the corn starch. He said, "Every child reacts differently, and this must just be one of the ways Katie is reacting to the chemo and medications." We are glad nothing more serious has come of all of this.
"Why should we pray? We should pray because prayer is indispensable to the accomplishment of the real purpose of our lives. We are children of God. As such, we have the potentiality to rise to his perfection. The Savior himself inspired us with this aspiration when he said, '"I would that ye should be perfect even as I, or your Father who is in haven is perfect.'" (3Nephi 12:48.)
"No one shall ever reach such perfection unless he is guided to it by Him who is perfect. And guidance from Him is to be had only through prayer. In our upward climb, this mortal experience through which we are now passing is a necessary step. To obtain perfection, we had to leave our pre-earth home and come to earth. During the transfer, a veil was drawn over our spiritual eyes, and the memory of our pre-earth experiences was suspended. In the Garden of Eden, God endowed us with moral agency and, as it were, left us here on our own between the forces of good and evil to be proved - to see if, walking by faith, we would rise to our high potentiality by doing "'all things whatsoever the Lord [our] god shall command [us].'" (Abraham 3:25.) (Marion G. Romney, "A Year of Powerful Prayer," p. 4).
Sunday, May 5, 2013
Day 545
Katie had her appointment at the clinic on Thursday and the doctor increased the amount of Katie's daily chemo pills. We were expecting this (but not wanting it). Katie has been doing "too well" the past couple of months. She has been too strong and her numbers have been up. This happened one time before, and we had to increase her chemo. However, this time they increased her daily chemo by 25%. That seems like a lot! Katie also needed to get an IGG infusion, because (ironically) those numbers were too low. (The IGG infusion takes several hours, so it made for a very long day at on Thursday). The IGG infusion makes Katie have flu like symptoms - and she is also back on steroids - plus the daily increase in her chemo - and the chemo she got intravenously on Thursday - it has all taken it's toll on her.
Yesterday and today Katie has been saying things like, "I am having a hard day" or "I am having a hard time." It is hard for us to see her like this. We knew she wouldn't make it through church today, so I stayed home with her. Katie asked to go on a walk around the block. I thought ahead and brought the stroller - Katie only made it as far as the neighbor's driveway and then asked to ride. When we got home she said she was tired and wanted to take a rest (it was 10:30 a.m.). She is still sleeping now.
Every month Katie takes a 5 day high dosage of steroids, and she always has certain cravings during this time. Most of the time she craves bagels and cream cheese (mostly the cream cheese!). Although, she also seems to continually crave whatever she first "desires" at the onset of the steroids. This time it has been hot chocolate. It is 95 degrees outside and she is drinking hot chocolate multiple times a day. I know it comforts her, and I am glad she can have something she enjoys! Another interesting thing about the steroids (and it has been this way from the very beginning for anyone who might remember) is that Katie only wants Mommy during this time. She doesn't want anyone else to help her with anything - anything from holding her to turning on the TV, getting her a drink, taking her upstairs, etc... She doesn't want to let me out of her sight. Sometimes when she isn't tired, she will let her Daddy help her, or hold her, but for the most part it is Mommy. I know it kind of bothers Scott (because he wants to do for her), and sometimes it is hard for me, but for the most part, I am so glad she wants me and I so am glad I can help her.
It has been a long road and we still have a ways to go. It is strange how I have felt the loss of support since Scott's mom has been hospitalized. I don't know that "loss of support" is the right wording - it is more a feeling of a loss of security - just knowing she was there to help us, if and when we needed help. Scott's mom has been such a source of help and comfort to us. She has always been a caregiver for so many. I know that as hard as things are for her physically, she is probably also suffering because she can't do - give - help. I wish I knew better what to do for her and how to help her. Her stomach is still shut down, and so she is still unable to eat or drink. She is on IV fluids only. I feel so bad for her (her name is Marie by the way) and I feel bad for Scott's dad. This was not what any of us were expecting at this time... But life has a way of challenging us with the unexpected. We will simply do our best and carry on. - Which reminds me to mention the corn starch - it is yucky for her, but it seems to be doing it's job of helping Katie's blood sugar stay stable throughout the night. So, onward and upward. President Dieter F. Uchtdorf said, "As we draw near to God, He will draw near to us. And day by day, the hope of God’s light will grow within us, 'brighter and brighter until the perfect day' ("The Hope of God's Light").
Yesterday and today Katie has been saying things like, "I am having a hard day" or "I am having a hard time." It is hard for us to see her like this. We knew she wouldn't make it through church today, so I stayed home with her. Katie asked to go on a walk around the block. I thought ahead and brought the stroller - Katie only made it as far as the neighbor's driveway and then asked to ride. When we got home she said she was tired and wanted to take a rest (it was 10:30 a.m.). She is still sleeping now.
Every month Katie takes a 5 day high dosage of steroids, and she always has certain cravings during this time. Most of the time she craves bagels and cream cheese (mostly the cream cheese!). Although, she also seems to continually crave whatever she first "desires" at the onset of the steroids. This time it has been hot chocolate. It is 95 degrees outside and she is drinking hot chocolate multiple times a day. I know it comforts her, and I am glad she can have something she enjoys! Another interesting thing about the steroids (and it has been this way from the very beginning for anyone who might remember) is that Katie only wants Mommy during this time. She doesn't want anyone else to help her with anything - anything from holding her to turning on the TV, getting her a drink, taking her upstairs, etc... She doesn't want to let me out of her sight. Sometimes when she isn't tired, she will let her Daddy help her, or hold her, but for the most part it is Mommy. I know it kind of bothers Scott (because he wants to do for her), and sometimes it is hard for me, but for the most part, I am so glad she wants me and I so am glad I can help her.
It has been a long road and we still have a ways to go. It is strange how I have felt the loss of support since Scott's mom has been hospitalized. I don't know that "loss of support" is the right wording - it is more a feeling of a loss of security - just knowing she was there to help us, if and when we needed help. Scott's mom has been such a source of help and comfort to us. She has always been a caregiver for so many. I know that as hard as things are for her physically, she is probably also suffering because she can't do - give - help. I wish I knew better what to do for her and how to help her. Her stomach is still shut down, and so she is still unable to eat or drink. She is on IV fluids only. I feel so bad for her (her name is Marie by the way) and I feel bad for Scott's dad. This was not what any of us were expecting at this time... But life has a way of challenging us with the unexpected. We will simply do our best and carry on. - Which reminds me to mention the corn starch - it is yucky for her, but it seems to be doing it's job of helping Katie's blood sugar stay stable throughout the night. So, onward and upward. President Dieter F. Uchtdorf said, "As we draw near to God, He will draw near to us. And day by day, the hope of God’s light will grow within us, 'brighter and brighter until the perfect day' ("The Hope of God's Light").
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