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...
Sunday, May 19, 2013
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").
Sunday, April 28, 2013
Day 538
We spoke to the Endocrinologist earlier this week about Katie's low blood sugars, and our options. We took Katie to have some more labs done - metabolic labs. It will take about 10 days to get the lab results back. However, we are not expecting anything to come from those labs. At this point, the doctor said he thinks Katie has Ketotic Hypoglycemia. I looked it up on the Internet - and it doesn't really seem to fit - Ketotic Hypoglycemia typically happens to underweight white boys - and well, Katie is white...but the rest doesn't really fit. The doctor's theory is that her low blood sugars are somehow related to her cancer and treatments. Basically, they can't find out what is wrong, and our options are limited.
Katie can go a week or more without a low blood sugar episode, so it would be tricky to put her in the hospital with the hopes of "catching" her with a low blood sugar. The doctor said he didn't think they would really find anything new by hospitalizing her anyway. So, we decided not to do the hospital. However, I was still reluctant to give her 2 teaspoons of corn starch nightly. Katie has already been through so much, and she has to take so much yucky medicine anyway... But Katie had another low blood sugar a couple of mornings ago, of 41, after eating a substantial protein/carb bedtime snack. And that was it for me! I am tired of waking up scared every morning - wondering if I am going to find her unresponsive or having a seizure - so 2 teaspoons of corn starch a night it is. And it is terrible! Katie hates it, and I hate giving it to her...
Nine months... Scott says it like, "Only 9 more months," I tried to feel that way, but really I feel like, "Still 9 more months." (Sigh...) It still sounds like a long time to me. And unless something else comes up, I guess we will be giving Katie the corn starch every night for the next 9 months, along with all of her other meds we give her. And then in 9 months, if she continues to have low blood sugars (after all of her treatments are done), we will know there is something else wrong and we will have to have her re-evaluated.
On the positive side of things though, Katie is basically doing really well. She has started back at preschool and church - and she is loving it! I am glad for her! Katie goes to the clinic this week (Thursday morning) for her usual monthly blood draws and chemo. "Only" 9 more months! =)
As an update on Scott's mom, we found out after church today that the hospital thought she had a heart attack this morning, but after running multiple tests, they now think it was a blood clot. She is still being "fed" through an IV, but they had taken the pump tube out of her stomach a couple of days ago. However, she is really struggling and bloated again today, so we think they will need to put that tube back in. I asked Scott's dad how he was doing and he said, "It is tough! If it was only the one thing we had to deal with it would be easier, but it is all these other things that keep happening - and could happen - that is making it really tough."
It is challenging for sure! When I took Katie to get her labs drawn this week, the technician had one of my favorite scriptures posted on her board. It is short but powerful. "For we walk by faith, not by sight." (2 Cor. 5:7)
Katie can go a week or more without a low blood sugar episode, so it would be tricky to put her in the hospital with the hopes of "catching" her with a low blood sugar. The doctor said he didn't think they would really find anything new by hospitalizing her anyway. So, we decided not to do the hospital. However, I was still reluctant to give her 2 teaspoons of corn starch nightly. Katie has already been through so much, and she has to take so much yucky medicine anyway... But Katie had another low blood sugar a couple of mornings ago, of 41, after eating a substantial protein/carb bedtime snack. And that was it for me! I am tired of waking up scared every morning - wondering if I am going to find her unresponsive or having a seizure - so 2 teaspoons of corn starch a night it is. And it is terrible! Katie hates it, and I hate giving it to her...
Nine months... Scott says it like, "Only 9 more months," I tried to feel that way, but really I feel like, "Still 9 more months." (Sigh...) It still sounds like a long time to me. And unless something else comes up, I guess we will be giving Katie the corn starch every night for the next 9 months, along with all of her other meds we give her. And then in 9 months, if she continues to have low blood sugars (after all of her treatments are done), we will know there is something else wrong and we will have to have her re-evaluated.
On the positive side of things though, Katie is basically doing really well. She has started back at preschool and church - and she is loving it! I am glad for her! Katie goes to the clinic this week (Thursday morning) for her usual monthly blood draws and chemo. "Only" 9 more months! =)
As an update on Scott's mom, we found out after church today that the hospital thought she had a heart attack this morning, but after running multiple tests, they now think it was a blood clot. She is still being "fed" through an IV, but they had taken the pump tube out of her stomach a couple of days ago. However, she is really struggling and bloated again today, so we think they will need to put that tube back in. I asked Scott's dad how he was doing and he said, "It is tough! If it was only the one thing we had to deal with it would be easier, but it is all these other things that keep happening - and could happen - that is making it really tough."
It is challenging for sure! When I took Katie to get her labs drawn this week, the technician had one of my favorite scriptures posted on her board. It is short but powerful. "For we walk by faith, not by sight." (2 Cor. 5:7)
Tuesday, April 23, 2013
Day 533
I haven't posted in awhile because I was in New Mexico last week (with Katie and Conner) and I didn't have access to the Internet. I ended up getting sick - but if one of us was going to get sick, I am glad it was me. We had a nice visit with my mom and extended family.
Scott's mom is in a care facility. The first report we got from the ER doctor was that she broke her wrist and pelvis. We were told she would only be in the hospital a few days, and then need to stay in bed at home until her pelvis healed. However, when the specialist came in, he said she would be hospitalized for a month, then have surgery on her hip, and then stay in the hospital for at least another month after that. He also said, "She may never walk again." -- That is where we were, the last time I posted on the blog. -- Now the doctors are saying she will need a hip replacement. She will be in the hospital/care facility for several months. She is completely confined to a hospital bed, with one of her legs in traction. Her bed can not be elevated higher than 30 degrees - so she is basically flat on her back. Her stomach has shut down - she was throwing up for 3 days and 3 nights - so they have put a pump tube up her nose, that goes to her stomach, to get rid of the bile. She can not eat or drink. She is on IV fluids only. It is all very heart breaking. However, in spite of it all, she seems to be in good spirits and is taking all of this in stride. She is an amazing woman and we love her.
As for sweet Katie... She is doing fine. We counted it up this morning, and she has 9 months of treatments left. We are glad to see the light at the end of the tunnel. Katie will still go to the clinic monthly for her check-ups after that, but no more chemo!
Katie is still having troubles with her blood sugar levels. It has been a very frustrating process with the Endocrinologists. Very frustrating! I don't have the energy to go into it all... But, bottom line is, based on Katie's labs, they are now sure her low blood sugar levels are not connected to the steroids. However, the doctors seem to be at a loss as to what to do next. They contacted Katie's Oncologist and asked if we could move her night time meds to a different time of day - by doing so, that would allow Katie to have a snack before bedtime - hoping that would prevent the morning lows. As a result, I have been giving Katie her meds in the afternoon, and she is getting a carb/protein snack just before bedtime. That also hasn't worked.
This morning as I was sleeping, I thought I heard someone call out, "Army!" I lay in bed for a minute, wondering if it was Katie or Conner that was dreaming about the army and talking in their sleep. I thought it was kind of funny...then all of the sudden (as I was now more fully awake) I realized that someone had called out "Mommy," not "Army". I jumped out of bed and found Katie laying on the floor, next to her bed. When she saw me, she said, "I want to eat breakfast." - I knew what was going on. I knew her blood sugar was low. I grabbed the meter - and her blood sugar was 41. So needless to say, we put a call into the Endocrinologist today to say, "Now what?"
We missed the Endocrinologist's call, but he left a message, saying we had two choices: 1. Hospitalize Katie to run more tests. 2. Give her corn starch at night - corn starch helps maintain blood sugar levels, but "many kids don't like the taste of it." --- We don't really like our options. We do not want to give her corn starch just to keep her blood sugar up. We want to know WHY it is happening, and then do something about it. And if we hospitalize her - how will those tests be any different than what we have already done? And how long do they plan on keeping her, etc... We put another call into the doctor, but we did not hear back from him.
Elder Jeffrey R. Holland said, "Every one of us has times when we need to know things will get better.... To anyone who may be struggling to see that light and find that hope, I say: Hold on. Keep trying. God loves you. Things will improve." ("A High Priest of Good Things to Come," Ensign, Nov. 1999, 36)
Scott's mom is in a care facility. The first report we got from the ER doctor was that she broke her wrist and pelvis. We were told she would only be in the hospital a few days, and then need to stay in bed at home until her pelvis healed. However, when the specialist came in, he said she would be hospitalized for a month, then have surgery on her hip, and then stay in the hospital for at least another month after that. He also said, "She may never walk again." -- That is where we were, the last time I posted on the blog. -- Now the doctors are saying she will need a hip replacement. She will be in the hospital/care facility for several months. She is completely confined to a hospital bed, with one of her legs in traction. Her bed can not be elevated higher than 30 degrees - so she is basically flat on her back. Her stomach has shut down - she was throwing up for 3 days and 3 nights - so they have put a pump tube up her nose, that goes to her stomach, to get rid of the bile. She can not eat or drink. She is on IV fluids only. It is all very heart breaking. However, in spite of it all, she seems to be in good spirits and is taking all of this in stride. She is an amazing woman and we love her.
As for sweet Katie... She is doing fine. We counted it up this morning, and she has 9 months of treatments left. We are glad to see the light at the end of the tunnel. Katie will still go to the clinic monthly for her check-ups after that, but no more chemo!
Katie is still having troubles with her blood sugar levels. It has been a very frustrating process with the Endocrinologists. Very frustrating! I don't have the energy to go into it all... But, bottom line is, based on Katie's labs, they are now sure her low blood sugar levels are not connected to the steroids. However, the doctors seem to be at a loss as to what to do next. They contacted Katie's Oncologist and asked if we could move her night time meds to a different time of day - by doing so, that would allow Katie to have a snack before bedtime - hoping that would prevent the morning lows. As a result, I have been giving Katie her meds in the afternoon, and she is getting a carb/protein snack just before bedtime. That also hasn't worked.
This morning as I was sleeping, I thought I heard someone call out, "Army!" I lay in bed for a minute, wondering if it was Katie or Conner that was dreaming about the army and talking in their sleep. I thought it was kind of funny...then all of the sudden (as I was now more fully awake) I realized that someone had called out "Mommy," not "Army". I jumped out of bed and found Katie laying on the floor, next to her bed. When she saw me, she said, "I want to eat breakfast." - I knew what was going on. I knew her blood sugar was low. I grabbed the meter - and her blood sugar was 41. So needless to say, we put a call into the Endocrinologist today to say, "Now what?"
We missed the Endocrinologist's call, but he left a message, saying we had two choices: 1. Hospitalize Katie to run more tests. 2. Give her corn starch at night - corn starch helps maintain blood sugar levels, but "many kids don't like the taste of it." --- We don't really like our options. We do not want to give her corn starch just to keep her blood sugar up. We want to know WHY it is happening, and then do something about it. And if we hospitalize her - how will those tests be any different than what we have already done? And how long do they plan on keeping her, etc... We put another call into the doctor, but we did not hear back from him.
Elder Jeffrey R. Holland said, "Every one of us has times when we need to know things will get better.... To anyone who may be struggling to see that light and find that hope, I say: Hold on. Keep trying. God loves you. Things will improve." ("A High Priest of Good Things to Come," Ensign, Nov. 1999, 36)
Monday, April 8, 2013
Day 518
I had a hard time writing this weeks blog - how much do I say, how much do I not say - I don't really want to grumble and complain... But the fact of the matter is, it was a hard week, and there are just no two ways about it.
Katie had her spinal tap (LP) on Wednesday. When a person gets a spinal tap, it can cause them to get a headache and backache afterward. And that is what happened. Katie kept asking why her head and back hurt. She even got a bruise on her back this time. The good news is that her IGG level was up this time, so she didn't have to get that (5 hour) infusion. She did however, get 3 different doses of chemo that day. Plus, she is back on her steroids. It has taken its toll on her this week. On Saturday, she took 3 naps! She is doing better today, and I am glad!
We were not able to enduse a low blood sugar on Wednesday by having Katie fast. She went 15 hours without food or drink and her blood sugar did not drop. I have contacted the Endocronologist's office (nurse/doctor) several times this week. (Katie also had a high blood sugar this week - 192- so it is very confusing). No one is sure what is going on. The Endocronologist now wants me to do what they told us not to do a couple of weeks ago - saying it was "too dangerous." I was told to wait for another low blood sugar and then rush her to the nearest lab for blood tests while her sugar is low. The Endocronolgist said, "That is the only way we will be able to proceed." Ironically, I just now got a call from the Endocronologist office, saying the doctors wanted to schedule a cortisol stimulization test for Katie. I told the scheduler tthis was the first I was hearing about it, etc... I told her what I was last told by one of the doctors. She said, "Do not take your daughter to the lab when her sugar is low! You can't leave her sugar low for that long." WHAT!? --There are 2 doctors that have been confiring with each other, and I am not sure who is out of the loop here - but it sure feels like it is us! I told the scheduler to please have the main doctor call me to discuss all of this. It has all been very worrisome. Especially since our Oncologist told us that having low blood sugars was not common, and not even rare, for Leukemia patients - this is not something they have had an issue with. It is very perplexing! And stressful.
I can remember on Saturday saying, (more to myself than anyone), "Seriously, can things get any harder?" And then I instantly regreted it, because I knew things can get harder - and they did! Conner is having his own struggles in multiple ways. And then he got sick this weekend. He had a fever of 103.5 and has been sick for a couple of days - which then leads to worries about Katie getting a fever and having to go to the hospital. And then, Nathan...well...Nathan is being a "teenager." So, not my favorite week. And then, last night we got a call that Scott's mom was being taken to the hospital by ambulance. She fell and fractured her pelvis and left wrist. The specalist came in this afternoon and it is so much worse than we thought!!! (That is all Scott wants me to say at this time).
So, to sum it all up, Katie said to me the other night, "Mommy, it breaks my heart to get so many pokes all the time!" I said, "It breaks my heart too. I am so sorry that you are sick and have to get so many pokes." It is heartbreaking - all of it. This week has been a week full of "pokes" (one way or another) - for all of us.
"The Lord loves us and is mindful of us. He is always on our side as we do what is right. He will help us in time of need." (Thomas S. Monson, Ensign, October 2012).
Katie had her spinal tap (LP) on Wednesday. When a person gets a spinal tap, it can cause them to get a headache and backache afterward. And that is what happened. Katie kept asking why her head and back hurt. She even got a bruise on her back this time. The good news is that her IGG level was up this time, so she didn't have to get that (5 hour) infusion. She did however, get 3 different doses of chemo that day. Plus, she is back on her steroids. It has taken its toll on her this week. On Saturday, she took 3 naps! She is doing better today, and I am glad!
We were not able to enduse a low blood sugar on Wednesday by having Katie fast. She went 15 hours without food or drink and her blood sugar did not drop. I have contacted the Endocronologist's office (nurse/doctor) several times this week. (Katie also had a high blood sugar this week - 192- so it is very confusing). No one is sure what is going on. The Endocronologist now wants me to do what they told us not to do a couple of weeks ago - saying it was "too dangerous." I was told to wait for another low blood sugar and then rush her to the nearest lab for blood tests while her sugar is low. The Endocronolgist said, "That is the only way we will be able to proceed." Ironically, I just now got a call from the Endocronologist office, saying the doctors wanted to schedule a cortisol stimulization test for Katie. I told the scheduler tthis was the first I was hearing about it, etc... I told her what I was last told by one of the doctors. She said, "Do not take your daughter to the lab when her sugar is low! You can't leave her sugar low for that long." WHAT!? --There are 2 doctors that have been confiring with each other, and I am not sure who is out of the loop here - but it sure feels like it is us! I told the scheduler to please have the main doctor call me to discuss all of this. It has all been very worrisome. Especially since our Oncologist told us that having low blood sugars was not common, and not even rare, for Leukemia patients - this is not something they have had an issue with. It is very perplexing! And stressful.
I can remember on Saturday saying, (more to myself than anyone), "Seriously, can things get any harder?" And then I instantly regreted it, because I knew things can get harder - and they did! Conner is having his own struggles in multiple ways. And then he got sick this weekend. He had a fever of 103.5 and has been sick for a couple of days - which then leads to worries about Katie getting a fever and having to go to the hospital. And then, Nathan...well...Nathan is being a "teenager." So, not my favorite week. And then, last night we got a call that Scott's mom was being taken to the hospital by ambulance. She fell and fractured her pelvis and left wrist. The specalist came in this afternoon and it is so much worse than we thought!!! (That is all Scott wants me to say at this time).
So, to sum it all up, Katie said to me the other night, "Mommy, it breaks my heart to get so many pokes all the time!" I said, "It breaks my heart too. I am so sorry that you are sick and have to get so many pokes." It is heartbreaking - all of it. This week has been a week full of "pokes" (one way or another) - for all of us.
"The Lord loves us and is mindful of us. He is always on our side as we do what is right. He will help us in time of need." (Thomas S. Monson, Ensign, October 2012).
Monday, April 1, 2013
Day 511
We had a nice Easter yesterday. Katie is convinced that there is not one, but two Easter Bunnies - a brother and a sister. She came to that conclusion all on her own. Yesterday, she kept asking if the Easter Bunny is real. We would say things like, "The Easter Bunny is a real symbol of Easter..." Finally, after she continued asking, we tried telling her the truth... But Katie then insisted that "Mommy isn't the Easter Bunny!...It is a boy and a girl, a brother and sister!" And she is holding to that story - and has elaborated on it. She is sweet, and we all had a fun day. We started the day with an egg hunt and ended the day with homemade ice cream. The best part of the day however, was that Katie was able to go to Primary for the first time. Katie hasn't been to church since December, but now that the cold and flu season is over, she was able to attend. Katie was so happy and excited - you would have thought we were taking her to Disneyland! In Primary they asked Katie to come up front so they could sing a welcome song to her. I don't know if Katie will always remember that - but I know I will! I am so glad she is able to go to church again!
Katie goes to the hospital on Wednesday for a spinal tap (the doctor takes spinal fluid out and puts chemo in). That is also the day they are hoping to endues a low blood sugar by having Katie fast. Scott and I are skeptical about that working. We don't think it is related to eating, or even related to what she eats. We think it is somehow related to the steroids - not the starting and stopping of the steroids each month - but just the steroids themselves. Although we don't know anything for sure - and neither do the doctors. So, we will see what happens on Wednesday...and then go from there.
"I witness that Jesus Christ is the Savior of the world. He suffered and died for our sins and rose the third day. He is resurrected. In a future day, every knee will bow and every tongue confess that He is the Christ. On that day, our concern will not be, 'Do others consider me Christian?' At that time, our eyes will be fixed on Him, and our souls will be riveted on the question, 'What thinks Christ of me?'"
(Neil L. Andersen, "What Thinks Christ of Me?" Ensign, May 2012)
"We cannot go to heaven in a feather bed. The Savior of the world entered after great pain and suffering. We, as servants, can expect no more than the Master. Before Easter there must be a cross. While we walk these paths which bring forth bitter sorrow, we can also walk those paths which yield eternal joy. (Thomas S. Monson, "The Paths Jesus Walked" Ensign, May 1974)
Katie goes to the hospital on Wednesday for a spinal tap (the doctor takes spinal fluid out and puts chemo in). That is also the day they are hoping to endues a low blood sugar by having Katie fast. Scott and I are skeptical about that working. We don't think it is related to eating, or even related to what she eats. We think it is somehow related to the steroids - not the starting and stopping of the steroids each month - but just the steroids themselves. Although we don't know anything for sure - and neither do the doctors. So, we will see what happens on Wednesday...and then go from there.
"I witness that Jesus Christ is the Savior of the world. He suffered and died for our sins and rose the third day. He is resurrected. In a future day, every knee will bow and every tongue confess that He is the Christ. On that day, our concern will not be, 'Do others consider me Christian?' At that time, our eyes will be fixed on Him, and our souls will be riveted on the question, 'What thinks Christ of me?'"
(Neil L. Andersen, "What Thinks Christ of Me?" Ensign, May 2012)
"We cannot go to heaven in a feather bed. The Savior of the world entered after great pain and suffering. We, as servants, can expect no more than the Master. Before Easter there must be a cross. While we walk these paths which bring forth bitter sorrow, we can also walk those paths which yield eternal joy. (Thomas S. Monson, "The Paths Jesus Walked" Ensign, May 1974)
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