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)
Sunday, April 28, 2013
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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